tag:blogger.com,1999:blog-50479623049165721482024-03-06T00:44:52.421-08:00Brynn's HeartErin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-5047962304916572148.post-25660523901234874992015-02-07T22:24:00.003-08:002015-02-07T22:24:56.163-08:00Two more weeks!Brynn's surgery has been postponed. We got through a difficult week of preparation and anticipation only to find out that we haven't quite gotten the green light from the surgical team.<br />
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Brynn did very well with appointments leading up to Friday. She enjoyed getting to meet the Child Life Specialist and although she didn't seem to quite understand why were at the hospital or what the lady was talking about, I like to think that the experience prepared her in some way for what was coming. They read Brynn a story about a camel who came to the hospital for surgery and showed Brynn pictures of the actual operating room and recovery. They showed her the playroom and library and gave her a quick tour of the floor where she will recover. Brynn loved getting to play with the stuffed camel and pretend to give it medicine and put on its tiny oxygen mask. She did seem anxious and didn't seem to really believe that she wouldn't have to see a doctor while she was there. We tried to give her as much power and control as we could throughout the appointment so that she could feel as in charge of the process as possible.</div>
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Tuesday was a little more stressful and upsetting for her. She did not want to be vulnerable and lie down on the table for her echo. It helped for me to climb up there with her and together we watched Tangled while they got the pictures they needed. It took some convincing but we were able to get her to lie still for the EKG. We met with Brynn's cardiologist, anesthesiology, and the cardiac cath nurse. Brynn allowed them to examine her and they grilled us with questions about her health and development. They let us postpone all the lab work and Xray so we were able to got home after lunch (but not soon enough to avoid a serious meltdown in the parking lot). </div>
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Brynn struggled that night and early next morning with not being able to eat or drink or anything. She was grouchy and confused when we arrived at surgery center at 8am but knew the drill at this point and cooperated while they got her height, weight, blood pressure, O2 saturations, and temp. She started to get pretty agitated in the waiting room and was being sort of aggressive with the other kids but overall I was so blown away by her ability to keep it together. I was tired and and hungry and anxious (and I had had coffee and was sneaking sips of water and a granola bar) so I can only imagine how she was feeling. I am frequently in awe of her strength and bravery in these situations. I almost lost it when they came in and told us it would be another hour before they could take her back and I was probably pretty frosty towards the Child Life Specialist they sent into the room to try and help Brynn cope with more waiting. Child Life had Brynn decorate the mask they would use to administer the anesthesia and then allowed us to leave the room and get some fresh air. I took Brynn to see the train and play in the courtyard to kill time. By the time we got back they were ready for us and we headed back to pre-op. </div>
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Once there Brynn really began to perk up. We had gone over and over what would happen next so she was very cooperative with changing into her "jammies" and swallowing the medicine that would help relax her and help with what they call "mask refusal". We got to meet the doctor who would be performing the cath, her nurse, the resident, and the same Child Life Specialist we had met in the waiting room. Brynn played with her dolls and loved that she could watch Frozen on the TV and control the volume. She was so content that she didn't want to leave when it was time to roll her down to the cath lab! Thankfully, the quick thinking and sympathetic doctor quickly paid $1.99 and downloaded "Let it Go" to her Iphone. She had it blasting the whole way with Brynn doing all the moves from her bed. It had to happen Brynn style! I literally felt just held up by a sense of security and positivity that I'm certain came from all the prayers and positive thoughts that have been coming our way. </div>
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This last week has been difficult but all the prayers, text messages, emails, phone calls, meals, and encouraging words have made us feel so loved and supported. I feel like Tony and I are able to pass on all that support to Brynn and really nurture and care for her in those more difficult moments. </div>
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The cath procedure took a couple of hours and they only found one large collateral (a blood vessel that grew to compensate for her her small heart size) that they had to coil off. Unfortunately, her pressures came back a little high and we were quickly informed by the surgical team that her surgery would be delayed until her case can be presented in front of the review committee and everyone can agree she is still a good candidate at this time. We were blown away and kind of reeling from the news but also relieved that Brynn was doing well. </div>
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She had a long five or so hours after that where she had to lay flat and still on her bed to prevent bleeding where they inserted the cath in her neck and groin. We finished the day with an Xray and then headed to Grandma's for some rest and TLC. The next day Brynn was feeling pretty good. We baked cookies, had a campout in front of the fire, and tried to process and prepare for two more weeks of back to normal before the surgery. </div>
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We thought we were in the clear until Brynn woke us up at 1:30am crying and shaking. I thought she was just scared or upset until later that morning when we realized she was in a lot of pain. She was whimpering and wouldn't let us pick her up. She kept saying her armpits and side hurt so we panicked and immediately thought she might have developed some sort of pleural effusion (fluid around the lungs). We called the cardiologist who fit us into to her morning clinic schedule so we could bypass the ER. She examined her and called the cath doctor who said it was probably inflammation and pain from the collateral she coiled off during the cath (which is apparently not uncommon to have). Well! That would have been nice to know! </div>
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We are treating the pain with Tylenol and Ibuprofen and watching the low grade fever she has had on and off. She has terrible bruising on her neck and groin area but doesn't seem to be too sore in these spots. Changing the bandages and getting her into the tub and out of the PJ's she's had on for two days was painful and scary for her but once again her bravery and ability to bounce back rivals any adult's I've seen. We are so unbelievably proud of her and grateful for some extra time for her to heal.</div>
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I am truly blown away and amazed by the awesome hand of God who knows all things and knew that Brynn would need this extra time to heal and recover. We are grateful for every extra moment we have to snuggle and care for her before she has to go back. It has also given us a glimpse of what to expect and prepare for when we return.<br />
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In a bizarre twist of fate, February 6th will end up being an important day for our family anyway. My sister gave birth to beautiful healthy baby girl on Friday! Anna Constance Leitch we love you and are so glad you are in this world!<br />
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Thank you to everyone who has supported us and given us strength during this challenging time. Letters and cards are already coming in and we can't wait to share them with Brynn. We are so blessed and grateful. <br />
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Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-50441627522012584352015-01-31T21:08:00.001-08:002015-01-31T21:08:57.689-08:00Here we go again!<div style="margin-bottom: 0in;">
Hey Everyone!
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I'm not sure really where to start but
I wanted to reach out to everyone before Brynn's surgery next week. I
can't believe we are here already. We've always known that this
surgery was coming but “sometime during her third year” was
always in the future. Now it is here.
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On Monday we are visiting the Child
Life center at Lucille Packard to meet with a specialist who will
help us prepare Brynn emotionally and psychologically for surgery.
I'm not sure exactly how you do that but I think puppets are
involved. And of course a coloring book. :) We might even give her a
tour of the ICU and recovery if it looks like that will be helpful.
The goal is to give her simple and factual information so that she is
reassured she will be okay but not too much information so that she
gets scared. Three is a tough age for this surgery since her
imagination is already in overdrive and phrases like “open heart
surgery” are scary even for adults.</div>
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Tuesday is our marathon day at the
hospital. Brynn is scheduled for an echocardiogram, EKG, and clinic
visit with her cardiologist. We will meet with the team, sign
consents for the surgery, talk to anesthesia, and then hopefully
break for lunch. In the afternoon we will complete all her lab work
and X-rays. A nap is probably not in the cards for us that day so
this might make things particularly grueling. Brynn is really a champ
when it comes to her cardiology appointments so hopefully she will be
able to get through this long day with the usual promise of a trip to
the gift shop for a balloon when it's all over.
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Wednesday is the cath procedure. We
will have to arrive very early in the morning. They will do an
examination and then we will take Brynn to the cath lab. Last time we
were able to stay with her as they put her under so I'm hoping they
will allow us to be there this time as well. It's an operating room
with lots of doctors and bright lights so its a very scary place for
a little kid. I'm pretty sure they don't start her IV until she is
already asleep. During the cath they will place a long flexible tube
into a blood vessel in her arm, neck, or groin. They will inject ink
into her blood stream this way and take pictures of her heart. This
will confirm that she is still a good candidate for the procedure by
measuring the pressures in her heart and determining that she does
not have high pulmonary vascular resistance. The cath will take a few
hours and then she is in recovery for two hours. If everything looks
good we can go home that night. We are pretty apprehensive about the
cath since the last time we had a really negative experience with a
nurse and doctor there, Brynn had a complication after the procedure,
and we ended up in the hospital for a week. This time it should be
more straightforward but it's still scary for us to think about going
back.
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Thursday we have a day to recover,
pack, and prepare for the surgery. We will be staying with my parents
who live pretty close to the hospital. Lucile Packard will call us on
Thursday and let us know if we will be the first or second case of
the day on Friday. They will give us instructions for when to stop
food and fluids and how to bathe Brynn before the procedure. Because
Brynn is not an urgent case there is always a chance the doctor could
be called away in an emergency and have to reschedule or delay the
operation. We are really praying that this doesn't happen for all the
obvious reasons.
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The procedure is called the Fontan.
Brynn was born with a single ventricle supplying blood to her lungs
and body. The first two procedures she underwent allowed her body to
be delicately balanced between inadequate blood supply to the lungs
and oversupply to lungs. When she was born her single ventricle had
to do twice the work of a regular heart since it had to pump blood
for both the lungs and body. When she underwent her Glenn procedure
they redirected the oxygen-poor blood from the top of her body by
disconnecting the superior vena cava and connecting it to the
pulmonary arteries . The Fontan procedure involves redirecting the
blood from the inferior vena cava directly to her lungs without
having to be pumped, its driven only by the pressure that builds up
in the veins which will allow her heart to then be responsible for
only supplying blood to the body. Or so says Wikipedia. :)
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Recovery will be anywhere from 2-6
weeks. Right after surgery she might experience a pleural effusion,
which is a complication she dealt with last time. This is fluid
building up around the lungs and the longer it continues to build the
longer it will take her to recover since chest tubes are required to
drain the fluid. This can also be an indication of further
complications so we are hoping the chest tubes can be removed within
a few days and that Brynn will be up and moving around.
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We have been warned that the first few
days after surgery are the roughest. She will probably be in pain, be
disoriented, and very cranky or withdrawn from everything she just
went through. Hopefully, this will only last a few days and we should
see her feeling more like herself around the third day.
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We are so grateful to all of our
friends and family and church community who have reached out and
supported Brynn and us leading up to surgery. Many people have asked
what they can do to help and we are very open to support during this
difficult time. First and foremost we are asking for prayer! Please,
keep Brynn in your thoughts and prayers that she might have a quick
recovery and that her pain and trauma will be minimized. Please pray
for our surgeon Dr. Reddy, and all the nurses and doctors who will be
caring for Brynn while she is in the hospital. Please pray that our
family has the strength and stamina to support Brynn and care for
Ryan over the next few weeks.
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Many people have offered to help take
care of Ryan while we are at the hospital which we might need at some
point! I am planning on being there from 7am-7pm and Tony will be
there from 7pm-7am. He is not able to take any time off from from
work so he will especially need prayers and support that he gets
enough rest. We will both need to be relieved at some point and are
so grateful to everyone who has offered to sit with Brynn if we need
to go home and get some additional rest. I promise, we will call you
if needed!
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Food would be great too. There is a
kitchen next to the ICU where we can store and reheat food as long as
it's labeled. My parents also have a second fridge where we can put
meals as well. Thank you in advance for those who have signed up to
bring us something!
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Visitors are limited while Brynn is in
the cardiovascular ICU (CVICU) but when she is feeling better and up
on 3 West we might be up for brief visits. Please just send us a text
and let us know if you are planning on stopping by so that we can let
you know if it's a good time.
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Finally, Brynn would love to receive
cards, pictures, letters etc. while she is there. She has a tiny
Frozen mailbox with Anna and Elsa and likes to check it and play
mailman. We are planning on bringing it with us to the hospital so
that we can read and display any mail she receives. If you would like to send a letter please message me and I will forward you the address.</div>
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Thank you again to everyone. We will be
updating the blog with pictures and her progress as often as possible. </div>
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Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-83789516098794811932012-05-05T12:33:00.000-07:002012-05-05T13:25:47.095-07:00A tale of two teeth and no sleep.Finally! A quick moment to update everyone on Brynn and all of her amazing progress. We had a check-up with the pediatrician back in March, and a scheduled appointment at the cardiologist for an echo, EKG, and clinic visit.<br />
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Both of the appointments went very well. The pediatrician was very pleased with Brynn's ability to sit up all on her own. She was impressed with her growth curve, and was relieved to see her head size on the chart. Brynn's gross motor skills are coming along fine (rolling over like a champ, with lots of rocking back and forth like she is getting ready to crawl!). The doctor decided we didn't need a referral to a developmental specialist for any additional support in assisting Brynn achieve her milestones.<br />
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Our appointment with the cardiologist on April 13th went equally well, although the stress that it causes both Tony and I to return to the hospital with Brynn was very evident this visit. We were both clutching our chests, taking deep breaths, and trying to distract each other. Tony refuses to eat before Brynn is seen. He also doesn't stop talking. :) My way of coping is to focus entirely on Brynn and not engage in much conversation. His is to pull out his tablet and research dinner options for that night, read all the posted reviews, and then google map the directions (with back-up restaurants and routes of course) checking in with me frequently about my thoughts on Thai food vs. Italian. Somehow, we make it through together and are able to support one another during those looong mornings.<br />
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They start with height, weight, blood pressure, and O2 saturations. She was 16 lbs and 27 inches long. Her O2 saturations were between 85-90 (very good). They are never able to get her blood pressure with the cuff. The echo takes about an hour and Brynn was a little angle the whole time. She had a male technician which I think really helped (she is such a flirt) and even enjoyed trying to help move the wand over her chest and eat the sonogram gel. I was taken aback by the fact the technician knew us, and had apparently been present in the delivery room. At one point he looked down at Brynn and said "Remember the morning she was born? We were all so scared that she wouldn't make it. And here she is, doing so well and looking so beautiful." This pretty much confirmed my worst fears: that in fact all of pediatric cardiology and probably half the medical school has seen my vagina. I mean, just how many people were in that freaking delivery room??<br />
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Of course it was also a poignant moment and a reflection on the amazing journey we have been on with our little one. Our cardiologist reviewed the echo and said that everything looked great. All the medications and dosing will stay the same since she seems to be doing well on what she is taking and her growth isn't rapid enough for the medicines to lose their effectiveness. We go back in August, sometime after Brynn's first birthday. Holy cow. Brynn is going to be ONE YEAR OLD!<br />
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It is amazing to watch her growth and development. She says "da da" constantly and indiscriminately and "mmmmama"when she is distressed. She has TWO teeth! And her hair is long enough for two adorable pig tails. She loves her jumper, loves to practice walking while you hold her two hands, loves music, bath time, story time, and loves to throw things over the side of her high chair and stroller (as long as you pick them right back up for her). Brynn loves being outside, loves to look at animals, and loves to make "migraine pie" as Tony calls it with mixing spoons and a large bowl. She is curious, silly, active, and interested in anything that lights up or makes noise (hide your laptops and remotes). She fits into her 9 month clothing and even some clothes that are sized a little larger. We can't wait to take her swimming this summer!<br />
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She is of course still sleeping in our bed. This continues to be a struggle. I love snuggling with her all night long. Tony hates being kicked in the ribs, pinched on the arms, and slapped in the face. Sometimes, she sleeps sideways between us with her head next to Tony's face and her feet in my stomach. Sometimes her wet diapers leak on our expensive sheets. Sometimes she thrashes around so violently you might think an earthquake was happening. But every night when I am putting her to bed and I crawl in next to her, I just soak up her peaceful breathing, milky baby smell, soft skin, and chubby little hands that stroke my arm as she is falling asleep. What can I say? I'm in love! And love makes you do foolish things. Sometimes laying down with her at night is the best part of my day. It's hard to give that all up, even when I'm being kicked in the face an hour later.<br />
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Currently, Brynn is having a rough time with her teeth. She is chewing on everything and often seems to be in pain. She constantly whines. She is clingy, frustrated, and furious at us if we walk out of the room (or even if we sit in the room but are not actively engaging her). This is a very recent change to our once independent baby who could happily entertain herself for up to an hour in her jumper, swing, or under her mobile. Apparently, she actually had a full on tantrum yesterday with the nanny and had a complete meltdown with me the other night because I brushed my teeth before getting into bed with her. She wanted Mommy NOW.<br />
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Her eating has also changed drastically in the last week so. She was once happy to eat jar after jar of freshly prepared squash, apples, pears, carrots, sweet potatoes, and zucchini. She was at one point drinking up to 20 ounces of formula overnight (not fun for me but good for her) and taking another 20 or so during the day. Suddenly, she wants nothing to do with the pureed food and has very little interest in her bottle (her intake is back in the high teens). She wants bread. And bread only.<br />
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We are trying to make the transition to soft table foods and continue to make sure she gets enough calories and nutrition through the formula. We are trying to ease her tooth pain with frozen chew toys, pain relief, and distraction. We are trying not to worry that her change in appetite and disposition could mean something more.<br />
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I guess thats what it means to be the parent of a heart baby. You are reminded during cardiology appointments when you see all those sick children (the ones with feeding tubes and facial deformities, the ones so puffy from steroids they look like they are about to burst, and the ones so tiny and frail you can't imagine how they are walking around) that things could get so much worse. There could be a day (like there was in the past) when your baby is in here really sick. You worry that any changes mean something bad instead of normal growth and development. I'm not really sure how to cope with that. Except that we have to and we have to keep focusing on everything going well. <br />
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We are reminded constantly of the blessings we have and look forward to a beautiful summer where we will hopefully get to see Brynn walk for the first time, swim for the first time, and eat her first piece of birthday cake. And possibly, maybe, quite probably (if Tony has anything to do with it) we might get to see Brynn sleep in her own bed.Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-55298037102253152092012-02-28T16:51:00.008-08:002012-02-28T20:41:31.413-08:00Balance shmalance<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2P3M4tMld0L25TysgMyVNntMTtWNVTlWbFzKLGg7l1PYlWm3_J5chNPkx2zFZhA4M-Vr2LqNYaG2bf7AbS67Qw_sHe-zLVq7YmPoYIqWrxkekBNSiQu20mSSg-lSBA2z4dYIIRXyavIU9/s1600/IMG_0472.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2P3M4tMld0L25TysgMyVNntMTtWNVTlWbFzKLGg7l1PYlWm3_J5chNPkx2zFZhA4M-Vr2LqNYaG2bf7AbS67Qw_sHe-zLVq7YmPoYIqWrxkekBNSiQu20mSSg-lSBA2z4dYIIRXyavIU9/s320/IMG_0472.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5714412843045947730" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAv7LXjSmWkV27KZhgQfXPvchQNxUUoMxKGLzC14qW_fIFyeZQzkJIBPqm2ZAD9BZCT_JloCgrKXT8jyPl945YdwGeEq__cvBwyCMtdU7gJF6GlO78u5yHZWZ-Wjjik7sZDtS6dCtiGje2/s1600/IMG_0457.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; 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cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTZXMGhTAgX42SEq46uBdF6TGc7fpdYK86lErxgE6Stt8DkNU88I_cadP5LobTPj1QFTU8wnIgClkqkPqUf7KnUH_hwgYWEhC8Mgqr6l6kzFxtf8jwRqiRJEKS5GSNY2BUBs_G2ox-iWVN/s320/IMG_0429.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5714412321162709506" /></a><br />Well, it's been five weeks since my last post. Five weeks since I've had a moment to myself, a moment of coherent thought, and a moment where I haven't felt guilty for doing something when I SHOULD be doing something else. Well, thats kind of not true. Right now I'm technically on the clock at work but my kiddo is getting help with his math homework and for once I'm caught up on notes so I figured I could take a few minutes to update the blog (thank you for understanding Starlight supervisors who read my blog :)). <div><br /></div><div>Being back at work has been both a blessing and an everyday lesson in guilt, exhaustion, and time management. My first day back I was so excited to get up and have someplace to go! It was exhilarating just to get in the shower without worrying if Brynn would be crying when I got out. I shaved my legs! I got to listen to NPR all the way to the office! I drove in the car with no crying baby in the backseat! It was pretty thrilling. And best of all Brynn was asleep when I left so it made saying goodbye uncomplicated (It's hard to make a big emotional scene when you have to be quiet and not wake the baby). I'm pretty sure my return to work was overshadowed by the 49's huge win the day before ("Great to have you back Erin. Did you see that football game??"). But overall I felt pretty confident that we had made the right decision about me going back full time.</div><div><br /></div><div>Pretty quickly however I began to feel the stress that I've read about in every women's magazine and is the centerpiece to every daytime talk show since the third wave feminist movement: having it all! How do modern women balance family, home and work? The answer? We don't! We are always feeling overwhelmed, overworked, under-appreciated, and somewhat hopeless about our situations. Okay, I'm being a little overdramatic. There are definitely days I feel like superwoman but there are definitely days I feel like I've let my family and my clients down (who needs clean clothes AND dinner on the table EVERY night, anyway?). Not to mention in my particular line of work if I'm not on top of my stuff my kids face real consequences (just ask the homeless teen mom and her baby who had no place to go last week). I don't just want to show up and do my work or go home and go through the motions. I want to do everything WELL. I want everyone healthy, and happy, and at least in clean clothes (and with a roof over the heads in the case of my client). </div><div><br /></div><div>I don't want to miss a minute when I'm home with Brynn. I want to be in the moment while I read her that story, give her a bath, change her diaper (well, maybe not too in the moment with that one). But I also miss having time to myself and downtime when I get home from work ("Brynn, can you keep it down over there? Mommy is trying to watch Dance Moms and The Real Housewives of OC!"). Depending on whose turn it is to work late, Tony and I get home, get dinner on the table, feed Brynn, read her stories, give her a bath, give her meds, try to get her to down for bed, do the dishes, sneak in a load of laundry, and possibly prepare a weeks worth of organic baby food. Oh yeah, and try to nurture our still new marriage. It's sort of a challenge. And also a huge gift. Normalcy is something I thought we might never have six months ago. </div><div><br /></div><div>As challenging as it is, I love almost everything about my life. I love being Tony's wife. I love being Brynn's mom. Most of the time I love being a social worker. Of course I wish there was more time for sleep, friends, family, reading, bubble baths, wine tasting, (I could keep going) but I think most working mom's feel that way (I know, I know: Every mother is a working mother!). </div><div><br /></div><div>Right now Brynn's health is very good. Her last cardiology check-up and echo showed that her heart function looks good. We successfully transitioned off Monogen and back to regular formula. Brynn has even started solid foods! We introduce a new one every week and so far are up to rice cereal, sweet potatoes, applesauce and tonight we are trying peas! So far she has liked everything and is eating well (up to two ounces in a sitting) and gaining weight. She was up to 13 lbs 2 oz on 2/3 and has to be at least a full pound heavier by now. </div><div><br /></div><div>I made the decision to make all of Brynn's food myself. My wonderful brother-in-law helped make this possible by giving us the Baby Bullet for Christmas! I know it is a lot of work and that the stuff in the jars is probably just as good but this is a commitment I really want to make to Brynn. I feel really guilty that I wasn't able to pump for longer than six weeks and that Brynn has had to have subpar nutrition for weeks at a time (thank you Monogen). I now have the ability and means to provide her with nutritious and healthful meals that will hopefully help her gain weight and get stronger. Despite the fact that sometimes the universe works against you (like when the power goes out the same night you have refrigerated a weeks worth of homemade baby food) this has worked pretty well. </div><div><br /></div><div>Brynn continues to work on sitting up by herself, increasing her tummy time (we are up to five minutes at a time before complete meltdown), teething, and eye hand coordination. She responds to her name, can pass objects from one hand to another, grasp small objects, cry if you take a toy away, babble, laugh, coo, drool, and flirt shamelessly with my husband. Some of her milestones will obviously be a little delayed (rolling over, crawling) but right now she is pretty on track. She continues to take Iron, Lasix, Asprin, Enalipril (blood pressure medication) and Zantac twice a day. It is adorable to watch her take her meds. She loves to chew on the syringe and slurps up the medicine. She is also skilled and spitting it back out raspberry style if she doesn't feel like swallowing. </div><div><br /></div><div>Now if only we could get her back to sleeping for longer than 90 minutes at a time. I haven't been this exhausted since we brought her home from the hospital. Only now I get to get up for work in the morning after being up with her all night! Her volume and intake of formula has gone way up at night. A few weeks ago she woke up maybe once or twice and took a maximum of 2 ounces at each feeding. Now she is waking up almost every hour and demanding close to 4 ounces at some feedings. Tony and I are facing the first of many co-parenting challenges when it comes to making choices about your kids sleep, potty training, homework, where to send them to college, etc. He want's me to start putting Brynn in the crib. Yes, you read that right. Brynn has never spent a night in her crib. Up until I went back to work five weeks ago she slept most of the night in her bassinet next to our bed. Now she sleeps in our bed. Every night. All night. </div><div><br /></div><div>Well, technically she tosses, turns, cries, slaps, kicks, and scratches all night. None of us is getting very much sleep. I know, I know. I never thought I would be a "co-sleeper" but I miss her so much during the day! And when she isn't kicking me in the stomach or scratching me with her razor sharp nails she is pretty snugly. :) I do want my bed back. And I would like more than an hour of sleep at a time. But I'm not willing to let her cry it out. And her crib all the way in the OTHER ROOM might as well be an ocean it feels so far away. Right now I am hopeful that we will find a solution that will make us all happy. </div><div><br /></div><div>I may not achieve balance in my life but I am confident we can achieve a balance that makes us all happy when it comes to sleep. At least until she learns how to get out of her own bed. :) </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-67137859855277072962012-01-19T13:31:00.000-08:002012-01-19T15:32:41.414-08:00The next chapter<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgITu-h-SH1ioRGt1Yj6dE_fpzUjH1V_WCSA4OKPe8vrDQP4FGUgfPdOuobCsmGgZDhkywb5MpVB2dAD1AmdnaYr1GTPXIu-N2u1it6hsETI8tXlHagbE-wV3xQs_t-nvla7_XT1q26R3PD/s1600/IMG_0405.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgITu-h-SH1ioRGt1Yj6dE_fpzUjH1V_WCSA4OKPe8vrDQP4FGUgfPdOuobCsmGgZDhkywb5MpVB2dAD1AmdnaYr1GTPXIu-N2u1it6hsETI8tXlHagbE-wV3xQs_t-nvla7_XT1q26R3PD/s320/IMG_0405.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5699490018142063394" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8PVpdko009muSdB2z9Ul0TrSCVRX1bZRNJjIDyBlyl27MZjMvyZ91_GV2fExdr3n3cITlttOVOOZQlIWd-WhjlJH6EJTDBijzxvIPUkyJtJ3wVnFR2IhDOTJCvb27S6ftewnHFyHZ-0_V/s1600/IMG_0396.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8PVpdko009muSdB2z9Ul0TrSCVRX1bZRNJjIDyBlyl27MZjMvyZ91_GV2fExdr3n3cITlttOVOOZQlIWd-WhjlJH6EJTDBijzxvIPUkyJtJ3wVnFR2IhDOTJCvb27S6ftewnHFyHZ-0_V/s320/IMG_0396.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5699490003638028690" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5DWKbH8eGa8ay8nWqIEAvr2HHa1ZaPs6FNB20w6L-z0A_1lPtEkCHCIN1FLAyUz_mO8he3TJp-cXg2GcKuTt1g_twcFPzM2NePkniuBJnT5EaRZsLK4lapVDFYTEZPWSz3jIbclo6T9AF/s1600/IMG_0387.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5DWKbH8eGa8ay8nWqIEAvr2HHa1ZaPs6FNB20w6L-z0A_1lPtEkCHCIN1FLAyUz_mO8he3TJp-cXg2GcKuTt1g_twcFPzM2NePkniuBJnT5EaRZsLK4lapVDFYTEZPWSz3jIbclo6T9AF/s320/IMG_0387.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5699489995757084210" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwN1GUk6MUWIspPcNa1N-HllVZmFoK7rdz0KzOJOm0gz8BVIRsw10vuuF7dCticJ0QQZujrpuR5N3rmveKcNmCclrq94JHbzeSNpmZ9aaUarKOzNYfIQRjdfRQ1JIbAW-CqDX2JU7a1kn4/s1600/IMG_0381.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwN1GUk6MUWIspPcNa1N-HllVZmFoK7rdz0KzOJOm0gz8BVIRsw10vuuF7dCticJ0QQZujrpuR5N3rmveKcNmCclrq94JHbzeSNpmZ9aaUarKOzNYfIQRjdfRQ1JIbAW-CqDX2JU7a1kn4/s320/IMG_0381.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5699489988876323138" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdytuMNwipC1B3C8f_zHMCX8rwW5yKvA6VbrNwq5n85s4FAWQoiibahFnzuyPxiheYUmWyf9wl8gwV6M5haFZLybsz6U2gyTQHYVwEMxDUB9M6JskibjO4x8Z3h_Rbe92WxGw2SyH5lReF/s1600/IMG_0375.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdytuMNwipC1B3C8f_zHMCX8rwW5yKvA6VbrNwq5n85s4FAWQoiibahFnzuyPxiheYUmWyf9wl8gwV6M5haFZLybsz6U2gyTQHYVwEMxDUB9M6JskibjO4x8Z3h_Rbe92WxGw2SyH5lReF/s320/IMG_0375.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5699489979260894322" /></a><br />Well, we made it through the holiday season (just barely). :) It was a pretty rough week or so while Brynn was back in the hospital. She continued to drain fluid from her chest for several days. We were pretty sure we were going to end up there over Christmas since they really didn't want to pull the chest tube until they were 100% certain she had stopped accumulating fluid but fate decided to clog the tube, forcing them to pull it and avoid infection. Luckily, an infection did not occur and the premature chest tube removal allowed us to go home earlier than we were expecting!<div><br /></div><div>Unfortunately, things are never exactly without complications in the hospital. We are now pretty sure that Brynn had some nasty stomach bug that didn't seem to be bothering her too badly, but proceeded to infect everyone who came in contact with her. It started with Tony a few days after Brynn had been hospitalized. I rushed over to relieve him when he called and found him barely able to stand he was so sick. Forty-eight hours later I came down with it. Tony wasn't completely better yet so our families stepped in to help care for Brynn. At that point she was still in 3 West and could not really be left alone since the nursing care in that unit is not the best (the ratio is 3 or 4 patients to 1 nurse). My mom took a day off of work (and would have done more if she hadn't slipped and gotten a concussion a day later). My cousin Hillary came all the way down to Santa Rosa to help. Tony's mom did more of her fair share of early morning shifts and overnights. Tony's dad took time off work to stay with Brynn. Tony's brother and his girlfriend even gave up their Friday night to do an overnight with Brynn. I don't know what we would have done without them. There was nothing worse than feeling so helpless and not being able to do anything to help care for my daughter. We would have been truly lost without the support of our families and are forever grateful for their continued generosity. </div><div><br /></div><div>And how were all these amazing people and their acts of kindness and selflessness repaid? By getting the stomach flu on Christmas of course! Like a horrible game of dominos every person who came in contact with Brynn during those three days came down with the bug one by one. Tony finally felt better by Christmas Eve and was able to get Brynn when she was discharged that afternoon. But we spent our first Christmas at home watching old movies and eating Chinese food while our families recovered from the gift that just kept on giving! </div><div><br /></div><div>Despite all the ups and downs, we felt very lucky to have Brynn home with us and to be together. We know what a gift it was to not be spending Christmas in the hospital, and to finally have a healthy happy baby at home. </div><div><br /></div><div>It is amazing to see how fast Brynn is growing now that we are home and her surgeries are behind her. She likes to spend most of her awake time sitting up (with help of course) and playing with any toy that lights up or makes noise. She loves books and even likes to practice turning the pages. She is babbling non-stop, blowing bubbles, drooling like crazy, and letting you know at the top of her lungs if she is bored, hungry, tired, or needs a diaper change. Her favorite food is her fist (pacifier, what pacifier?) and her favorite past time is whining (adorable and incredibly annoying all at the same time). No solid foods yet since she is still on the Monogen, but we are hoping for the okay for rice cereal after February 6th when she can go back to regular formula. </div><div><br /></div><div>Our only setback since we've been home was a yucky cold that Brynn got and of course shared with us. We were both really scared that it would put us right back in the hospital since we have heard so much about heart kids getting pneumonia or developing respiratory problems even from a simple cold virus. And let me tell you, it was a nasty cold virus! Brynn recovered remarkably quickly from the bug but 10 days later I was still taking cold medicine and blowing my nose every five minutes. </div><div><br /></div><div>With the holidays and the sickies out of the way, the big task before me was to find Brynn a nanny. I go back to work on Monday. It has been five months since I stepped foot in the office. When I left I was eight months pregnant, it was 90 degrees out, and I had never changed a newborn's diaper. Crazy to think about! I was feeling pretty anxious about trying to find someone I could trust, someone who would take good care of Brynn inside our home, and someone who would be willing to do it for a pretty nominal fee. Thankfully, I think we have found that person. </div><div><br /></div><div>She has been over a couple of times to get to know Brynn and learn her routine (okay, I don't really have a strict routine down but there are general guidelines) and to see if the job was something she really wanted. There are days I find it incredibly isolating, lonely, and sometimes even boring to be at home all day with an infant and she's MY kid so I really wanted to find someone who could cope with the long hours of minimal adult interaction and a fussy baby who wants ALL of your attention RIGHT NOW! I really hope we have found a good fit and that our nanny will be with us for a long time. </div><div><br /></div><div>It's hard for me even now at home with the nanny here (I can hear Brynn fussing in the other room) and I really want to jump up and make it all better but I know that they need time to figure each other out. I think it might actually be easier when I go back on Monday and don't have to hear her crying or upset. I know getting back to work will be a transition but I am hoping that it is going to be a positive experience. At least I know the extra income will be!</div><div><br /></div><div>Our hope for this next year is to spend lots of time focusing on Brynn and keeping her healthy. I'm hoping to finally get my LCSW exam completed and passed. I'm hoping we have lots of time to just be together as a family and not have to worry quite so much about hospitals, doctors, and surgeries.</div><div><br /></div><div>Thank you to everyone for your messages of support and hope during the three weeks Brynn was in the hospital last month. It really meant a lot to us to have so many people praying for Brynn and for us during that difficult time. Here's to a new year and a happy and healthy baby! </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-30183352395173224252011-12-20T12:18:00.000-08:002011-12-20T12:35:04.552-08:00Pictures!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnTnIVaBu4JiW3PXzMUYiJyDHxlUX-U-M-pE_yyroiXda7RthWQxntg1FQttsapl07cOzAE11hRDM5UGcVwI1S6IiSaYpm55eJ0OCV0ozZLewbLJDa_UUAMp_WwZgAJ5BlXSuSqffjZW92/s1600/IMG_0371.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnTnIVaBu4JiW3PXzMUYiJyDHxlUX-U-M-pE_yyroiXda7RthWQxntg1FQttsapl07cOzAE11hRDM5UGcVwI1S6IiSaYpm55eJ0OCV0ozZLewbLJDa_UUAMp_WwZgAJ5BlXSuSqffjZW92/s320/IMG_0371.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5688309484950018610" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuJV3KwVKMYfvSiI9FgzI5C-YyTweZar_Itx6lehlbLibMssLKvmx4uDaurfa6ksQLinfQ3JL6U2ggr_rne9OHILYuGzQ1q-QpTcT3sk5ICadaE_CNb6o4OIhpHqbsR-EQGj93pAl9ZC53/s1600/IMG_0369.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuJV3KwVKMYfvSiI9FgzI5C-YyTweZar_Itx6lehlbLibMssLKvmx4uDaurfa6ksQLinfQ3JL6U2ggr_rne9OHILYuGzQ1q-QpTcT3sk5ICadaE_CNb6o4OIhpHqbsR-EQGj93pAl9ZC53/s320/IMG_0369.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5688309474931603234" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_j_5nAVYPa8mxDDcuyLhaWgD7cLiZ3fMQUYIu1sq5IPt8QNfoD_iC1aVNOtvaqKGz8atvnCmnsYI8LHhubmsS3i-6q4c-g7dWUKBTvc4-KYQsm57ATlqw-5T56nE8ORnSGtnCcApEpVlb/s1600/IMG_0364.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_j_5nAVYPa8mxDDcuyLhaWgD7cLiZ3fMQUYIu1sq5IPt8QNfoD_iC1aVNOtvaqKGz8atvnCmnsYI8LHhubmsS3i-6q4c-g7dWUKBTvc4-KYQsm57ATlqw-5T56nE8ORnSGtnCcApEpVlb/s320/IMG_0364.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5688309471320735202" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiswCLTnXS042K-pYtf2XN-dNrgKbHSqttqEzs3uqfdiv_zUB7PqEt-8Wvz8TAJtad1g7X_GRzKMw1vJiuNeTjLy6i7lfFev68yZlkEXXhTyKhyphenhyphen2uCbuUZ7NEzOIXmFKfQkuXS0ldpXcUSo/s1600/IMG_0359.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; 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cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvPZgQ_teHHTRM5BdqwqcVVSHsTRC88e0pv31Gjb38ldM1eqRQUv8kt8E6-lfameaLET88_8AgcawtXNYHAtPMr0omIel5oJgCrAxl4qGGpTibQCsZclVIFQt1h3j023VxaPy-0_K0gYPp/s320/IMG_0331.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5688308458720481042" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz6-Ey6vGh-e17IjXxCmf3QorUtMw0vvOU4QAvHt1Qb629u9BmnOJ0GzKET17zLJJVUsGJz0voiK2NO81P-i_SMcjENHqoBJK_mYp2Qawlv7rgDTc1asVhQR97ns2nFAJoD5UTCUO9lvOc/s1600/IMG_0328.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz6-Ey6vGh-e17IjXxCmf3QorUtMw0vvOU4QAvHt1Qb629u9BmnOJ0GzKET17zLJJVUsGJz0voiK2NO81P-i_SMcjENHqoBJK_mYp2Qawlv7rgDTc1asVhQR97ns2nFAJoD5UTCUO9lvOc/s320/IMG_0328.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5688308448332054722" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNKfZ8xu693MbFPSSD3i2JO9H_EQxJRIKNz7JZOyH2H6xAU8Dw7mlc3hNYOh9z0fuLVH_WtqF6ClFqKWDO039z3O6JTleh_ibX7wlMpCF1KK9NqBXUTDmn0ez2xbu-gqEwUV_QdozH2nBI/s1600/IMG_0317.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNKfZ8xu693MbFPSSD3i2JO9H_EQxJRIKNz7JZOyH2H6xAU8Dw7mlc3hNYOh9z0fuLVH_WtqF6ClFqKWDO039z3O6JTleh_ibX7wlMpCF1KK9NqBXUTDmn0ez2xbu-gqEwUV_QdozH2nBI/s320/IMG_0317.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5688308446505579586" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcT_UpZ8BlXIR6-mUQUEO_pv2v2ENbFBNbLPVqlMMWgxmxQHwtdHh6gZKisGuHQjx9n9vYE3sru9dmTuU5zv0ZrJJK2JaPvPoFFOmWghH2Y9gbbhNGIxWrCZU8BpxOmzoaIbNmiZ-wQfcH/s1600/IMG_0310.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcT_UpZ8BlXIR6-mUQUEO_pv2v2ENbFBNbLPVqlMMWgxmxQHwtdHh6gZKisGuHQjx9n9vYE3sru9dmTuU5zv0ZrJJK2JaPvPoFFOmWghH2Y9gbbhNGIxWrCZU8BpxOmzoaIbNmiZ-wQfcH/s320/IMG_0310.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5688308434767502002" /></a><br />Pictures of before the cath, in the hospital, after the Glenn, and the few blissful moments of rest Brynn got while she was home. And one video of the creative way Tony got her quit screaming for a few hours. :) <iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyI-SpgOmnfRinSnU6lLnA7OXjVITx3wjNsr4rF429l1q5MRsqAbdzlbijG96rFndqtIYvmXkslakWi7i4RLA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-71218411942574601952011-12-20T09:11:00.001-08:002011-12-20T11:48:16.067-08:00This is the post that never ends...I can't believe it has been over a month since I blogged. I'm sorry to those of you who are not on Facebook and haven't been getting the updates that way. It has been an eventful month. The task of writing it all down has seemed overwhelming and emotionally exhausting so I have been putting it off. But here goes... <div><br /></div><div>The last time I blogged, we were waiting for Brynn's cath procedure and her Glenn operation. Originally, I felt we had worked things out perfectly. We had Brynn's pre-cath appointment at the clinic, a check-up with the pediatrician the following week, the cath on the 28th, and the Glenn scheduled for December 5th. Then things began to go a little crazy. We could tell that Brynn was not feeling the best. She was having more emesis than normal, and more poopy diapers as well. She didn't seem overly fussy or sleepy, but we consulted with the nurse practitioner several times and kept a close eye on her O2 saturations. We got the green light to stay out of the hospital until the cath. We were excited that we would not be in the hospital for Thanksgiving, and that our families would not have to spend the holiday bringing us turkey leftovers. </div><div><br /></div><div>And then came Monday the 21st. Tony had the week off from school and he woke me up to tell me that my Mom had just called to tell us that her sister's husband, my Uncle Mark, had suffered a heart attack while out jogging. The news was jarring and unbelievable. Mark Adams is one of the most athletic people I know. He runs marathons, competes in triathlons, and takes very good care of his health. At that point we believed without a doubt he would recover quickly. A small part of me even believed he and my cousin Jeff would still join us for Thanksgiving that Thursday. I had just been thinking the day before that Mark would get to hold Brynn for the first time. </div><div><br /></div><div>He had been so supportive and encouraging since we had gotten the diagnosis. We had never talked on the phone much but he had made a point of calling several times in the months leading up to Brynn's birth. He and my Aunt Martie had come to visit Brynn in the hospital while we were still in the ICU. He hadn't been able to hold her at that point. He frequently told my cousin Hillary that Brynn was here to teach us all a lesson about life. </div><div><br /></div><div>Two days later, on the way to the pediatrician's office, we got the call that Mark had no significant brain function. He had been without oxygen for too long before being revived. Stunned and crying we stumbled through the appointment making plans to visit the family in the hospital. In addition, I rushed around trying to locate and secure breast milk for Brynn for the night before the cath. She had to be without formula for 8 hours before the procedure but could have breast milk up until almost right before. The milk bank was closing and would not reopen again until the following week, so I had to rush over there before they closed up. </div><div><br /></div><div>My sister, step-dad, and I drove up the day after Thanksgiving to join my mom and say our goodbyes to Mark. The outpouring of love and support for the family was amazing. My heart continues to ache for my aunt and cousins. It seems so unfair that they have to loose such an amazing husband and father. Brynn might be here to teach us about the amazing gift of life, but I think Mark taught us about the amazing gift of living. I hope I can teach Brynn to live life with the same generosity, passion, gratitude, and spirit that Mark possessed. </div><div><br /></div><div>Two days later, we took Brynn in for her cath procedure. From the moment we got there I felt anxious and upset. We were still reeling from the loss of Mark, exhausted from getting up all night to make sure Brynn had enough to eat, and worried about possible complications related to the procedure. Tony and I put on scrubs and walked Brynn into the cath lab. They would put her under before starting an IV or taking blood for labs. We watched as they put her under (not something I would recommend), and then waited in the surgical waiting room with other parents (the scariest, most electrically charged, anxious ridden place in the hospital). They say the woman who works behind the desk has been there for years. I don't know how she does it.</div><div><br /></div><div>Six hours later, they finally told us we could go see Brynn. She was in recovery and still pretty drugged up. Her cries were some of the most horrific I've experienced, and I'm sort of an expert at this point. She was starving and desperately trying to eat but kept choking and flailing around. At this point she hadn't eaten in 14 hours. We were ushered upstairs to 3 West, the cardiac recovery unit where we spent two weeks last time before discharge. The doctor finally came to tell us that the cath had gone well and that Brynn appeared ready for the Glenn the following week. There is a reason this man only works with unconscious patients; his bedside manner was atrocious! </div><div><br /></div><div>My mom and sister got us dinner and then headed home (bless them for sitting in another hospital with us after everything they'd been through) and Tony and I tried to get Brynn settled for the night. Amazingly, we had our most favorite nurse from 3 West. Brynn seemed to be more comfortable with some pain medication and some food but we noticed a few things right away. The first was that one of her legs was purple. The other was that she still could not keep food down. By 4am that morning her O2 stats started to fall into the 50's. Alarms sounded. Nurses and doctor's rushed in and began to give her oxygen. Even at 100% she was not coming back up. Tony and I sat down and held each other. The other mother in the room left her daughter's bedside and began praying down on her knees. As they wheeled Brynn out the door to take her to the ICU the woman slipped a small guardian angel into my hand. </div><div><br /></div><div>Downstairs in ICU they administered more oxygen, gave morphine and a bolus of heparin, paged our cardiologist out of bed, and did an echo. The echo showed a small clot had formed in her leg (explaining the purple) and near the shunt, partially restricting it and causing restricted flow. Dehydration had contributed to the decreased blood volume and poor flow. Our nurse stayed with us for the first hour, explaining everything that was going on. She gave us both a long hug and promised to come back down after her shift was over to check on us. We called our parents and decided to go home and get some sleep. It was clear that we would be staying in the hospital longer than 24 hours.</div><div><br /></div><div>They decided to keep us in the ICU for the week leading up to the surgery. At that point Brynn's reserves were low, and they told us that continued O2, IV fluids, and heparin were necessary to keep her stable before surgery. Brynn was a champ and the care that we got while in the ICU was awesome. Our surgeon was out of town but after another desaturation episode later in the week, he agreed to cut the one and only vacation he takes each year early to come in on a Sunday and perform the Glenn. </div><div><br /></div><div>The day of the surgery ended up being much less traumatic than I anticipated. We had the dreaded surgical waiting room all to ourselves. Our families came with food, comfort, and moral support. We anticipated it to take up to six hours, but I hadn't even finished the Christmas movie I was watching on my laptop before the surgeon came down to tell us he had finished the procedure and that everything looked great. </div><div><br /></div><div>We couldn't believe the speed in which everything seemed to happen. Forty-eight hours after surgery they told us they would be moving Brynn back to 3 West the following day, and anticipated a discharge date of later that week. The only complication that Brynn seemed to have experienced was a chylothorax, or accidental severing of a lymph node. As a result she was leaking milky fluid from her chest tubes and would need to be switched to a formula low in long chain triglycerides, aka, fish oil based. Most babies have an extremely difficult time getting the formula down, and some even need feeding tubes because they will stop eating. Apparently not her mother's daughter, Brynn proved not to be a picky eater and chugged it right down. It smells horrible (interestingly, we all agree it smells just like day old McDonalds french fries). No, really, it does. And it leaves Brynn all sticky from the amount of corn syrup solids they use to try and disguise the fish oil taste. </div><div><br /></div><div>On December 12th, one week from the surgery, two weeks after originally going in for the cath procedure, we were headed home, believing at the time that aside from check-ups, we would not step back into the hospital for several years. We were back 48 hours later. </div><div><br /></div><div>They had told us that Brynn would be extremely fussy and probably very uncomfortable due to the "Glenn headache" the result of re-plumbing her entire heart and changing the pressures in her head. They warned us that even strong narcotics don't always help relieve this pain, and that only time can help with the process. They didn't tell us she would be profusely sweating, inconsolable, extremely agitated, throwing up, and having loose stools. Apparently, that is because these are not signs of the Glenn headache, but rather morphine withdrawal. </div><div><br /></div><div>A prescription for Motrin and Ativan were supposed to make this better. They didn't. Three days later, we went back. A chest x-ray and echo came back clear. They increased the Motrin and aspirin dose, switched her back to her regular formula since they believed the chyle had resolved itself and told us to come back in a few days if it didn't get better. It didn't. Brynn screamed non-stop from the time she was released from the hospital. We couldn't change her diaper, feed her, bathe her, dress her, or hold her without her screaming. She was so agitated and obviously in A LOT of pain. She slept very little, and had no alert awake time where she wasn't screaming. The doctors were puzzled. We were at our wits end. Haggard, hopeless, and extremely worried. There was no end in sight to Brynn's unhappiness. </div><div><br /></div><div>By Sunday morning her breathing was extremely labored and she was wheezing. We decided to bring her into the ER for a chest x-ray. The experience was of course horrible. They couldn't start an IV or draw blood because she was so dehydrated. Her saturations were down in the 60's even with O2. She continued to be in horrible pain. The x-ray reveled a collection of fluid around her lungs. They were not sure if it was from the chyle or if she had developed a pneumonia. They ran tests, got cultures, administered antibiotics, and told us that Brynn would have to stay overnight so they could place a chest tube and drain the fluid. </div><div><br /></div><div>They drained 150 cc's from her chest yesterday. The tests revealed that the accumulation was in fact chyle, but she had been accumulating fluid since they took the chest tubes out almost two weeks ago. Our baby had barely been able to breath and was in great pain caused by all that pressure and fluid around her lungs. So, she is back in the hospital. Back in 3 west, back where we started . Only now, the difference in how she is feeling is unbelievable. She is happy, smiling, cooing, and flirting shamelessly with all the male nurses. We finally have our baby back. </div><div><br /></div><div>We might end up being here over Christmas. We might be feeding our kid fish oil french fry formula indefinitely. Right now, the chest tube is still putting out a good amount of fluid. We won't be able to go home until it stops and the x-rays show no new accumulation. However, right now we just don't care. We are so happy to have our comfortable, happy baby back. </div><div><br /></div><div>If you are still here after that long winded explanation of events, thank you. Thank you to everyone who has reached out, given us support, held our hands, and lifted our spirits. Tony and I spent our first wedding anniversary with our baby in the hospital. We know we could not have gotten through this year without the loving support of our families and friends. </div><div><br /></div><div>This holiday season might not go exactly as you planned. You might not get the gift you wanted, or spend the day the way you thought you would. But please think of Brynn, and remember Mark, and know how truly lucky we all are to be alive and have one another. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-3256884209755125382011-11-07T15:40:00.000-08:002011-11-07T17:35:37.504-08:00A very important date...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidyYskYwJtJS-j96B2ERigouBKDUnwTjc1sy6K07LDaatVRJcgr5ZXIYw-ckSou98CdXDrFqCXCxAGfkVSvK_vg5_gEA33t43HCVFHRKWP9Qpz3-MLCaDiUeNEH877gUKtvQUQTa-tNtJI/s1600/IMG_0269.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidyYskYwJtJS-j96B2ERigouBKDUnwTjc1sy6K07LDaatVRJcgr5ZXIYw-ckSou98CdXDrFqCXCxAGfkVSvK_vg5_gEA33t43HCVFHRKWP9Qpz3-MLCaDiUeNEH877gUKtvQUQTa-tNtJI/s320/IMG_0269.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672430020162708754" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpKpQCayvTECvNJx7sBorkv8dFYxYrBF2obhV9YOGT2RDkPrpu_NSrPEkfNmjzeGdrMcIdGdGdrDTmprpfSvigHeDECpNwvoGs5pBW3e22CKmbJf_8LA2v1el4sH8H-Io4xXCzLDaaQaNm/s1600/IMG_0267.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpKpQCayvTECvNJx7sBorkv8dFYxYrBF2obhV9YOGT2RDkPrpu_NSrPEkfNmjzeGdrMcIdGdGdrDTmprpfSvigHeDECpNwvoGs5pBW3e22CKmbJf_8LA2v1el4sH8H-Io4xXCzLDaaQaNm/s320/IMG_0267.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672430005329883778" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFofAr2wc64ih6rBnWN9rutVmqlXZc3Rrd8W1HQKBT4Qzkg0P5Q-ZemxrWqSy-6xNZc2wI5hHcHf65o1uNKO0cYvrjgxIBkxUnFL7G785DkbUG0sILhADMACOMya8v11MxSyO050nK4iFv/s1600/IMG_0258.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFofAr2wc64ih6rBnWN9rutVmqlXZc3Rrd8W1HQKBT4Qzkg0P5Q-ZemxrWqSy-6xNZc2wI5hHcHf65o1uNKO0cYvrjgxIBkxUnFL7G785DkbUG0sILhADMACOMya8v11MxSyO050nK4iFv/s320/IMG_0258.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672429996537849762" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ0E7UVIIi082SpIyzLtslhVkq1rSJTqC2mE0TByuyBKQWy2KT2KX98DDI6MWTrY8bfoPYTVX5IXx2O-80SKTB9MY4QPLnRdXZKoECQ6YU0tHpoO3RUgNGwF5aKh16qS2S2dICzge0wZ0Z/s1600/IMG_0246.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ0E7UVIIi082SpIyzLtslhVkq1rSJTqC2mE0TByuyBKQWy2KT2KX98DDI6MWTrY8bfoPYTVX5IXx2O-80SKTB9MY4QPLnRdXZKoECQ6YU0tHpoO3RUgNGwF5aKh16qS2S2dICzge0wZ0Z/s320/IMG_0246.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672429991762015826" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Qc7QUZ8-_BoSbV1XE4tjT04crdQTgiPrNXo-_CWYfqgHWDmfvoVoGlhwwt0Y_U5pn-tvgS_xip60t06QGMtjbLA6YPdZOvGxY9icBAkKjGO-6q9XuCPHAzahkAZU9OCksEgESI96N3h2/s1600/100_2618.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Qc7QUZ8-_BoSbV1XE4tjT04crdQTgiPrNXo-_CWYfqgHWDmfvoVoGlhwwt0Y_U5pn-tvgS_xip60t06QGMtjbLA6YPdZOvGxY9icBAkKjGO-6q9XuCPHAzahkAZU9OCksEgESI96N3h2/s320/100_2618.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672428533446618546" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_goc5ppoAco5JZkkpOUKB163Oy1p5hZACLBvwLYD2VjJMzWjiNCQDYUwmWCXWzIhHcfVEZuqHNwx06iy9qXRybeEht6U5Nm1M8T8fKt9blTcES6pV2Ihfg7frq6-2eBljsdfs4-5o9E7n/s1600/100_2603.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_goc5ppoAco5JZkkpOUKB163Oy1p5hZACLBvwLYD2VjJMzWjiNCQDYUwmWCXWzIhHcfVEZuqHNwx06iy9qXRybeEht6U5Nm1M8T8fKt9blTcES6pV2Ihfg7frq6-2eBljsdfs4-5o9E7n/s320/100_2603.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672428514920359650" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3ivnPUnYBfes_he80a3g66K3H37AgQyrUlRHmsCxJpPSFBJENNVpDPsZONNdVnUuoGamHqL4eIj2mRGv5egjJmliylDVDJ4ndVcTg_gz8fWiwjhiG3FuH4ELVgCn_uHlc293Vv3Wgegb4/s1600/100_2597.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3ivnPUnYBfes_he80a3g66K3H37AgQyrUlRHmsCxJpPSFBJENNVpDPsZONNdVnUuoGamHqL4eIj2mRGv5egjJmliylDVDJ4ndVcTg_gz8fWiwjhiG3FuH4ELVgCn_uHlc293Vv3Wgegb4/s320/100_2597.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672428512105311778" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOpQderC58t42M_W_RUcIdZwx4aKIijiMbdhFCgN8kJkPMXqtRfKy0jbtVDzFbitPJ3_q1Vqmwhb44TmuID3XpO5aDHeBMy_ho0Q5WUNzbA4PFTvMO7t0GXbe2-TsNUIRRjqepKF7hIk61/s1600/100_2576.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOpQderC58t42M_W_RUcIdZwx4aKIijiMbdhFCgN8kJkPMXqtRfKy0jbtVDzFbitPJ3_q1Vqmwhb44TmuID3XpO5aDHeBMy_ho0Q5WUNzbA4PFTvMO7t0GXbe2-TsNUIRRjqepKF7hIk61/s320/100_2576.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672428509406528450" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMRJJbcMJ7Tlex21oCbqgYQgnCzI8vmHlm91FpThfoErLQNyTsAgaCzMLYjDwYcCwwGtf-UG1K8L7tRa-UNjX-zDIoYOop5iZP3RoEj8bIbWYnU8ai00GV8KNdv6uktWlmfM5JxsDivZLU/s1600/100_2550.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMRJJbcMJ7Tlex21oCbqgYQgnCzI8vmHlm91FpThfoErLQNyTsAgaCzMLYjDwYcCwwGtf-UG1K8L7tRa-UNjX-zDIoYOop5iZP3RoEj8bIbWYnU8ai00GV8KNdv6uktWlmfM5JxsDivZLU/s320/100_2550.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5672428504998409314" /></a><br />Today was the original date of Brynn's second surgery. Today we were originally supposed to be sitting in the hospital with our families holding our breath and saying our prayers and putting our faith in the hands of the doctors and nurses. Today was originally the start of moving back in with my parents during Brynn's hospitial stay. The start of long days at the bedside and even longer nights away from our baby. Bad hospital food, cold hospital air, chapped hospital skin (thank you, hand sanitizer) and lots and lots of hospital tears. <div><br /></div><div>Instead, I got to wake up to my baby cooing and gurgling happily to her friends (giraffe and penguin, respectively). I got to fix her bottle and change her diaper and dress her in the cute new outfit with they bunny on the front. I got to kiss her toes and put little slippers on her feet. I got to lay her in her swing and watch as she gazed up at the mobile. </div><div><br /></div><div>I got to put her in the stroller and take a walk through our favorite neighborhood and feel the sun's warmth on my face and shoulders. We admired the sun shining through the trees and I pushed the stroller through crunchy piles of Autumn leaves. We watched a snooty French bulldog bark up a tree at a sassy little squirrel who I swear stuck his tongue out at the dog below. </div><div><br /></div><div>Tonight, I will get try out a new recipe and give Brynn a bath. I will get to put her in the snugly pajamas with little feeties and rock her to sleep in front of the fire. Today we get one more beautiful, gratitude filled day of normalcy.</div><div><br /></div><div>Of course, the question is how much more time do we have before we have to go back? Will Brynn learn how to roll over (she gets closer every day!). Will we finally get to meet and pet the big shaggy dog we see every day on our walks (think Nanna from Peter Pan; he used to bark at us but now he just nods hello from his spot in the driveway). Will we get to have Brynn with us for Thanksgiving? Get to pass her around the table to be held and cuddled while we dig in to our mashed potatoes? Her cardiac cath date is scheduled for the 18th. We most likely will not know the answers to those questions or receive a surgery date until then. </div><div><br /></div><div>The downside to this extra time is the extra time it gives me to worry about the upcoming surgery. Falling asleep at night is getting harder and harder. My mind drifts to the day of the upcoming surgery, and all the the agonizing feelings of worry, waiting, and wondering how things are going to go. I don't know if its better or worse to know what to expect when we go back this time, all I know is it's a lot harder. Last time I was spared the long and painful wait in a cold room on a stiff plastic chair (the blessing of having Brynn going immediately into surgery after she was born). I was recovering from my own surgery and regained feeling in the lower half of my body around the time her surgeon came in to tell us things had gone well. This time, I have none of the peace or internal calm I felt before her birth and delivery. I'm finding it next to impossible to find much comfort in my faith or have the peace of mind knowing that she will be in excellent hands. </div><div><br /></div><div>I know this might not make a whole lot of sense since statistically her chances of surviving surgery and doing well are high (around 98%, vs the first time at a lower 80%). My fear and worry are like a pit in my stomach. I'm trying really hard to rely on prayer and positive thinking to get me through this difficult period of waiting. I'm trying to put into practice what I know in my heart: that through suffering and hardship we grow closer to God and deepen our faith. I'm trying hard to enjoy every moment of every day with my baby. </div><div><br /></div><div>We have been so blessed to have been granted more time with our sweet baby girl. Maybe it's selfish to want to be assured that we will have all the time in the world. I want to know that one day Brynn will be the cute little preschooler who waved hello to me today. I want to know that I will get to see her first steps and dress her chubby little legs in the overalls hanging in her closet. I want to know what her first words are going to be and find out what kind of baby food she will like to eat. Will she love the smashed banana? Spit out the pureed peas? </div><div><br /></div><div>I guess I want what every parent wants and sometimes takes for granted: that my child will get to grow up healthy and happy. This journey has been filled with so many ups and downs. We remain so completely blessed to have such support from our friends and families. Tony and I are sometimes amazed at how far we have come as parents and how close and strong our relationship is despite the stress. As I said last time, some days are more challenging than others but overall I could not have a more supporting and loving partner in life than my husband. </div><div><br /></div><div>Please continue to pray for us and for Brynn as we await her surgery. Enjoy the pics! </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-81905078260519443042011-10-28T17:26:00.000-07:002011-10-28T18:55:10.038-07:00Large volume love :)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju-2tn0frKQDat9Mr_GldJ1ae57fCpTVS5kgN3fspW3FrK-KByRIoIVUZQjTLQ9w7zqEv8svAHcgPUFb6zQFFnVb9vkf9XAP4_PczRv5QRlF9sGc8t0NQuQrXhBDKPOK6LDHHNtcovADP1/s1600/IMG_0224.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju-2tn0frKQDat9Mr_GldJ1ae57fCpTVS5kgN3fspW3FrK-KByRIoIVUZQjTLQ9w7zqEv8svAHcgPUFb6zQFFnVb9vkf9XAP4_PczRv5QRlF9sGc8t0NQuQrXhBDKPOK6LDHHNtcovADP1/s320/IMG_0224.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5668724392121992786" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOAXU8fbJWaNveGrVsnJZWE7iQphYmfXSuoic_yhbSA1v0oAWLYGK9wwWNafr7LfwKjDC4MlPtzdRgTsGzIojjExG0j-Hh53oT2Un2sONTbIkYlXNjWlQjTOWYv910orxp0zIpbETLFEkY/s1600/IMG_0216.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOAXU8fbJWaNveGrVsnJZWE7iQphYmfXSuoic_yhbSA1v0oAWLYGK9wwWNafr7LfwKjDC4MlPtzdRgTsGzIojjExG0j-Hh53oT2Un2sONTbIkYlXNjWlQjTOWYv910orxp0zIpbETLFEkY/s320/IMG_0216.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5668724376431147586" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCtkUBSPzVfoPftvPhSNKZnXVpKrrLlQxPDhwgWGlvntnlJchR_3S4SOtdcLusc0b12fIhi6b-lQE3AYolsvtNii9EZIAgSER26bv02Cf2YfF3ltY7dfTQm8jEg1G3nQZl51i3JnIjkalg/s1600/IMG_0212.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCtkUBSPzVfoPftvPhSNKZnXVpKrrLlQxPDhwgWGlvntnlJchR_3S4SOtdcLusc0b12fIhi6b-lQE3AYolsvtNii9EZIAgSER26bv02Cf2YfF3ltY7dfTQm8jEg1G3nQZl51i3JnIjkalg/s320/IMG_0212.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5668724371430145714" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-5uAmZz0lrue53pjdBbCWO6aHIW8e8BuJPGDnMnyPLxQBpkb8v49g5D_aa8iaZLKt07OST3NBrEExtr_itkRX3G4-GVnt2TO7UxhabhiP3ZlHWc3M5ym3cnY8E6YCIO3EJgKMfVR2b6UX/s1600/IMG_0206.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-5uAmZz0lrue53pjdBbCWO6aHIW8e8BuJPGDnMnyPLxQBpkb8v49g5D_aa8iaZLKt07OST3NBrEExtr_itkRX3G4-GVnt2TO7UxhabhiP3ZlHWc3M5ym3cnY8E6YCIO3EJgKMfVR2b6UX/s320/IMG_0206.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5668724370906316370" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSFAwyKziXSzzvL5UQ0JFpAOhXQ3Pfgq3gJe272ex7UCc3zFb3yVIDB01wJLOxWLpGlX3Kh5Ef-cEnBfEBy4bkI-kWisW-ilKPyYiOM50c_mC9IaR2vKZbdH0dhuq0hJQMfgVdwKtFZwDG/s1600/IMG_0202.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSFAwyKziXSzzvL5UQ0JFpAOhXQ3Pfgq3gJe272ex7UCc3zFb3yVIDB01wJLOxWLpGlX3Kh5Ef-cEnBfEBy4bkI-kWisW-ilKPyYiOM50c_mC9IaR2vKZbdH0dhuq0hJQMfgVdwKtFZwDG/s320/IMG_0202.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5668724362281164562" /></a><br />Thou seemest, Lord, to give severe tests to those who love Thee,<div>but only that in the extremity of their trials</div><div>they may learn the greater extremity of Thy love.</div><div>-Saint Teresa of Avila</div><div><br /></div><div>These last few weeks have been a test and a testament of our faith and love for one another and for our Lord. Having a baby is tough on a marriage. Having a sick baby 8 months after you get married is very tough on a marriage. :) Tony and I have faced challenges that couples who have been together for years struggle through, and we have also faced challenges that some couples never have to go through. As new parents we don't always know why Brynn is crying or what we can do to make her feel better. Typical conversations go something like this:</div><div><br /></div><div>"Why is she crying?" </div><div>"I don't know...did you change her? feed her? rock her? give her her meds? check her stats? swaddle her? bathe her? play with her? walk around with her?"</div><div>"YES! And she is STILL crying." </div><div>"What if something is really wrong? Should we call the doctor?" </div><div>"I don't know. What do you think?"</div><div>"I don' know. What do YOU think?" And so on. </div><div><br /></div><div>A few times her crying is so frantic and loud it drives stress levels through the roof and leaves a ringing in you ears. Late at night when you are both exhausted it is not only frustrating but also scary. You always want to be kind and patient with one another but nothing takes away your appreciation and gratitude for your partner quicker than a screaming baby. Deep breaths, prayer, and tag teaming (when possible) are saving graces and less messy than killing each other. </div><div><br /></div><div>So far we have been so lucky that we haven't had any real scares with Brynn's health and have managed to support one another and use our resources when faced with questions or challenges. Two weeks ago Brynn had three large spit-ups in one day ("large volume emesis" in the medical world). Usually, she tolerates her feeds very well and keeps down her meds without an issue. For some reason though she not only threw-up frequently that day but she also threw-up a lot. I called the doctor who advised us to check Brynn's stats and continue to monitor her closely. She told us that if her stats were under 80 or she had another large spit-up we would have to page her and maybe come in. Her stats sat solidly at 85 but an hour after I hung up the phone (around 11:00pm) she threw-up again. I was really torn. I know that "spitting up" is not just spitting up when it comes to our kid. She has to gain weight. She has to keep her meds down. Any and all illness or change in typical behavior should be considered cardiac related until proven otherwise. </div><div><br /></div><div>But I also have to rely on my instincts as a mother and as Brynn's primary caregiver. Her stats were fine. Her color was good. She wasn't fussy. She didn't have a fever. I really really didn't want to spend the night in the hospital and subject my kid to IV's and blood work for just a little spit-up. But I also knew that I would never forgive myself if it turned out to be something more and I didn't do the right thing. So, I had the doctor paged and waited by the phone. Strangely enough though we never heard back from the doctor and the three of us ended up passing out for the night as we waited for a return call. </div><div><br /></div><div>The next morning Brynn's weight hadn't changed (pretty amazing considering how much she spit-up) and her stats were still solid. She tolerated her meds and didn't have another large emesis episode that day. I felt guilty that I felt relieved that the doctor never called back but I also felt more confident that I would know what to look for in the future if something was really wrong. Everything about this journey is a learning experience. </div><div><br /></div><div>Since then, Brynn has been much better taking full feeds every two hours during the day (with longer intervals at night, thank God) and keeping everything down. She is gaining weight at the rate of about 45 grams a day and keeping down her meds. At our last cardiology appointment she had an echo that showed normal heart function and excellent stats. The cardiologist added an additional medication to help Brynn's heart not to have to work so hard. She consulted with the surgeon and decided to postpone Brynn's second surgery by a few weeks. Since Brynn's stats have been sitting in the mid-80's it is showing that she has not yet grown out of the shunt. This will allow Brynn to gain more weight and get a little stronger before going back for the second procedure.</div><div><br /></div><div>I can't begin to explain how relieved I am that we have a little more time with our baby boo before having to go back to the hospital. I know that Brynn needs the second procedure to save her life and keep her healthy but I am having a very difficult time accepting the fact that we will have to go back and see her once again so sick and helpless. She has made so much progress and is such an amazing little baby. The thought that something might go wrong, that she will be in pain, and that we will be separated from her makes ME feel like I'm about to have some "large volume emesis". I'm really trying to use all the prayer, faith, and hopefulness that got me through her birth and the first procedure. In some ways it might be easier now that we know what to expect. But in some ways I know it will be infinitely harder now that we have met her, loved her, taken her home and cared for her. She is our baby. </div><div><br /></div><div>We go in on November 18th for her cath and will stay overnight. Our surgery date has not yet been rescheduled but will most likely take place the week of Thanksgiving. In the meantime we continue to enjoy every moment (well, maybe not the inconsolable screaming baby moments) of our time together as a family. Knowing how precious a gift we have been given in her makes the more difficult moments more tolerable and the adorable moments that much more joyful. Enjoy the pics and the video of Brynn's tummy time! She is becoming much more vocal and interactive! </div><div><br /></div><div><br /></div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyLd-7E0uDqGdGGWyXIX14EpkHM9omug_9T4GXpCOaBWQIbDl7Kt6NAtJdy5MiS_Rdue6-Bm2SIJ2P50h420A' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-34930173463766436422011-10-14T21:16:00.000-07:002011-10-14T22:11:07.196-07:00It gets better...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpfYhBO5aR2evKtheuh5xID-lahTinAQkwC24hoRUNXp2rYsiue_AuNq_hHGW0u7wSDedU9-2F3AoWXHmkj_KJeARRxmTgrXny2cMDuF8IM7VWfu3clFxhNVOfPId1SFG0OsMeCcqLdO1e/s1600/IMG_0191.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpfYhBO5aR2evKtheuh5xID-lahTinAQkwC24hoRUNXp2rYsiue_AuNq_hHGW0u7wSDedU9-2F3AoWXHmkj_KJeARRxmTgrXny2cMDuF8IM7VWfu3clFxhNVOfPId1SFG0OsMeCcqLdO1e/s320/IMG_0191.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663578192637650898" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzDumK2GIZ7Jxbasb2tSRRyTT3NTYu3rZetaR2FMcv3qP_CR2xZgjeyDGkQYg-XDxUeth2RUWloTITVpjuSAbAShfFh3VXg1_UJLLKL7nka7C5oBNdsVC3kHMe6s-0phPeIiD5RxNvxxOk/s1600/IMG_0189.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzDumK2GIZ7Jxbasb2tSRRyTT3NTYu3rZetaR2FMcv3qP_CR2xZgjeyDGkQYg-XDxUeth2RUWloTITVpjuSAbAShfFh3VXg1_UJLLKL7nka7C5oBNdsVC3kHMe6s-0phPeIiD5RxNvxxOk/s320/IMG_0189.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663578177950169714" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC5hwU5GIl60HKnD4Mf-hMnn45RQzD3MI5TIowVbeko5aw5zw54RkbZFo0wRo4qWsG5xsnMGGjF3KoZv0ISV4aAxt_mt_uO-qRIhIhRgUFJCQZNBW8CTkzW2amxy9V5ZU2xmf_q-k3z2HP/s1600/IMG_0192.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC5hwU5GIl60HKnD4Mf-hMnn45RQzD3MI5TIowVbeko5aw5zw54RkbZFo0wRo4qWsG5xsnMGGjF3KoZv0ISV4aAxt_mt_uO-qRIhIhRgUFJCQZNBW8CTkzW2amxy9V5ZU2xmf_q-k3z2HP/s320/IMG_0192.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663578171976053522" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Ii2L152daz1peN3w0vlWGeQzIU262agoQAtXPmNNTtBRlFHWgNrpRQABXUkTKHQ68QZSIGiTK1EfQLVAe-ipVRfhmEIeVlQ6y_O0mVYdsnGRiDjfASfO-V08zXzk4emci7E5HKqarAn1/s1600/IMG_0186.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Ii2L152daz1peN3w0vlWGeQzIU262agoQAtXPmNNTtBRlFHWgNrpRQABXUkTKHQ68QZSIGiTK1EfQLVAe-ipVRfhmEIeVlQ6y_O0mVYdsnGRiDjfASfO-V08zXzk4emci7E5HKqarAn1/s320/IMG_0186.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663578167499242738" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Y5NHxn_MuY6YYbX3Qto4jJvnSpPv0LPBKsv6XOz01XSYYIRUrTsjYV3FNTNzZz5vg-Z9U6MzeJtHaraXPpkGa6XrVGbokVauI2GZ1V-LMwpiTVUq3xRKJA5RogUmDCfAYPsRFDdzWDDp/s1600/IMG_0196.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Y5NHxn_MuY6YYbX3Qto4jJvnSpPv0LPBKsv6XOz01XSYYIRUrTsjYV3FNTNzZz5vg-Z9U6MzeJtHaraXPpkGa6XrVGbokVauI2GZ1V-LMwpiTVUq3xRKJA5RogUmDCfAYPsRFDdzWDDp/s320/IMG_0196.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663577666881763394" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6rIjEXIRh6Ny0C9EM9vTrblWITyUpuCp4n0AXSylqRVn_lxtJaH2bJA9oXiULw0_zSvYsL1CpdmXVt7U9JAiiWl75RhyUSBmaK3ja1EUsyu6iEKtdt67rl6HY8yafhskN6dJctqMFpVpW/s1600/IMG_0193.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6rIjEXIRh6Ny0C9EM9vTrblWITyUpuCp4n0AXSylqRVn_lxtJaH2bJA9oXiULw0_zSvYsL1CpdmXVt7U9JAiiWl75RhyUSBmaK3ja1EUsyu6iEKtdt67rl6HY8yafhskN6dJctqMFpVpW/s320/IMG_0193.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663577656815166946" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkJ7cDjNCyk7FhXXJpQur3rG2xPaBu9iH-JCgRdygTkm74LonIhN0nvzhR34MiC_lLOzjm8k6lxb1_E_LENIvVv_lxmi5WZxTDfzatZ1pm5yAMf0qYFAa1VkcH6ofDaGdS_c-6B4XJL0pH/s1600/IMG_0185.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkJ7cDjNCyk7FhXXJpQur3rG2xPaBu9iH-JCgRdygTkm74LonIhN0nvzhR34MiC_lLOzjm8k6lxb1_E_LENIvVv_lxmi5WZxTDfzatZ1pm5yAMf0qYFAa1VkcH6ofDaGdS_c-6B4XJL0pH/s320/IMG_0185.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663577654538141698" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP83eLZXcvazARZN_zQ9I9Tjrd_c6v0V5_6TWYGuwDhbmMeOOuCYDdEt1iHhO_JxTeAejDXqJCig0Ne7NNh3i1YAgnt8_lQujoppgAkCrV1-el-q4b1qkPOx5JLEBd7Y2EYUmKhJWALzLg/s1600/IMG_0171.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP83eLZXcvazARZN_zQ9I9Tjrd_c6v0V5_6TWYGuwDhbmMeOOuCYDdEt1iHhO_JxTeAejDXqJCig0Ne7NNh3i1YAgnt8_lQujoppgAkCrV1-el-q4b1qkPOx5JLEBd7Y2EYUmKhJWALzLg/s320/IMG_0171.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663577645960201602" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZvceWUWuQhV6YnCD_H_jIpxTDTAAQ1vv228NAcLJgQDIh8_ucP-sArAwD8ujPnF3dMR_rd86AVz4GOjG0wy76WGAsOgP2D-gSfh7DK4TKCAIp3WGOVJP_FWwz9cGU20mkoIUZT4uWu40n/s1600/IMG_0170.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZvceWUWuQhV6YnCD_H_jIpxTDTAAQ1vv228NAcLJgQDIh8_ucP-sArAwD8ujPnF3dMR_rd86AVz4GOjG0wy76WGAsOgP2D-gSfh7DK4TKCAIp3WGOVJP_FWwz9cGU20mkoIUZT4uWu40n/s320/IMG_0170.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663577641926455506" /></a><br />...is apparently not only the slogan for the anti-bullying campaign but also the mantra for new moms everywhere. It is a phrase I have heard countless times in the last few weeks and what I repeat to myself several times a day. Thankfully, things are getting better. After my meltdown two weeks ago we decided to hire a mother's helper who is coming three times a week for a few hours each day. I have been able to take a shower, get a nap, eat, pump, and even run to the grocery store! I think it is one of the best decisions we have made so far. <div><br /></div><div>The days with a newborn are still long and pretty isolating. I miss working. I miss seeing adults on a regular basis. I miss getting to leave the house without packing for what feels like a three week vacation. But I am slowly and surely feeling more confident and comfortable leaving the house with Brynn on my own. We have gone to the pediatrician's office, to CVS, on two walks, and even across the bay to Dublin. Brynn does great in the car as long as it's moving. Traffic and stoplights are the enemy. </div><div><br /></div><div>Brynn is doing exceptionally well. She is now over 9lbs and growing. We are really trying to get her on a regular eating schedule every few hours but like her mother her preference seems to be "snacking" throughout the day. Her average weight gain last week was only 20 grams per day, and it should really be more like 60. As a result I am trying hard to be more regimented with her eating habits. Her stats continue to be in the mid-80's which indicates that she is not yet growing out of her shunt. We should get a better idea of whether or not her surgery will be postponed after her echo on the 21st. Brynn did get shots this week at her two month visit to the pediatrician. The doctor was impressed with her weight gain (the cardiologists are harder to impress when it comes to fattening her up) and her strength (she almost looks like she is going to roll over when we put her on her tummy). She of course did NOT like her shots one bit and howled like a banshee every time she was stuck but at least it wasn't an agonizing 45 minutes of searching for a vein. And, I decided that since Brynn had been so brave with getting her shots that I would get my flu shot while we were there. It is the first time I have ever gotten a flu shot but I am so glad that I did. Knowing that I took an extra little step to help protect my baby makes me feel good. </div><div><br /></div><div>I am still continuing to pump although my supply is pretty pathetic at this point. I'm not really sure it is worth to continue for a measly 40-50mls a day (not even one full feed). However, I'm having a really difficult time with the thought of stopping altogether. I know there are certain things that I just need to accept and cannot change but I really really wish I could give her more breast milk. I have even tried getting her to latch in the hopes that we might try some breast feeding. It worked once for 15 minutes three weeks ago and was the most amazing experience but she hasn't been able to latch again since. It seems like it should be the most natural and beautiful part of motherhood but is just not realistic at this point. The longing to feed my baby is so strong and painfully unattainable that it leaves a tingly feeling in my chest. At the same time, the $85 a month pump rental fee leaves a clenching in my stomach. Are really getting our money's worth at this point?</div><div><br /></div><div>Tony and I both have a sinking feeling every time the mail comes. Daily we receive statements from HealthNet detailing the services they have covered. So far, we have been lucky to have complete coverage and have not been hit with any surprise medical bills. However, we have decided to COBRA my insurance next month to insure the great coverage and are going to be hit hard with the fees we originally were not anticipating. I could have a full time job just answering my phone with the daily calls we get from the insurance company, doctors, nurses, social services, and healthcare supply companies. We are so blessed to have so many amazing services being offered to Brynn and such amazing healthcare coverage. Hopefully I will have more time in the coming weeks to go through the stacks of paperwork that we are acquiring on the dining room table. </div><div><br /></div><div>Thank you to everyone for the continued support we receive. We have been so touched by the phone calls, visits, gifts, letters, cards, texts, and emails that just keep coming. Tony, Brynn, and I feel so loved and so lucky to have such amazing people in our lives. Speaking of which, all you amazing people who would like to come by and meet Brynn before we got back to the hospital, now would be a great time. As long as you are healthy and are willing to wash your hands we would love to introduce you to our baby before she becomes the incredible wired up little tube receptacle she will be in the hospital. Believe me, its much easier to hold a baby when she is not attached by tubes and wires to fifteen different machines. </div><div><br /></div><div>We hope everyone is having a beautiful Fall and look forward to (hopefully!) spending some time with family outside the hospital for the holidays. Be on the lookout for Halloween photos! </div><div><br /></div><div> </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-68226449838238382952011-10-03T15:47:00.000-07:002011-10-03T20:45:17.075-07:00Two months!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWOCBnsZ1KGmu-3xNuc9jYrD8OdPMAXbGlMiTk32m-tNjbNAxr_ZL7Y6PlLPGpkxEXqQpRoEl_vo_oaSq2dQhsNoBT8lZufm5i9hlCucPr7GR23qa_cy25oCj72emRbVzM0gf9gta5pN_q/s1600/IMG_0147.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWOCBnsZ1KGmu-3xNuc9jYrD8OdPMAXbGlMiTk32m-tNjbNAxr_ZL7Y6PlLPGpkxEXqQpRoEl_vo_oaSq2dQhsNoBT8lZufm5i9hlCucPr7GR23qa_cy25oCj72emRbVzM0gf9gta5pN_q/s320/IMG_0147.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659469718175605810" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgofZDG_078kvli0VudE9SDGzhxWJ0kol7koIG_NYVUXTV5FOitQpmaznn5U3b3puv7tugoY8pMrGMoY0_6naYeRfD3O_KHIdlSpmlTxU0yUcroAV6bF-KT05LNucUztmCNnwWhp4uo-fDb/s1600/IMG_0150.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgofZDG_078kvli0VudE9SDGzhxWJ0kol7koIG_NYVUXTV5FOitQpmaznn5U3b3puv7tugoY8pMrGMoY0_6naYeRfD3O_KHIdlSpmlTxU0yUcroAV6bF-KT05LNucUztmCNnwWhp4uo-fDb/s320/IMG_0150.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659469716591382354" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikvZxL6iBZid5EUfQVzHUzl7QIKHVB9GGRq5_o2d6L_HR9mZGaisb5HAz3xx6VNbAn7ZcoG6aje1q_cXfcq2Pq-KctYpEtIXYPnba5DbEa2tabsTFfmZl7hb8GUf2wECypHy5_ID2nSoQC/s1600/IMG_0143.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikvZxL6iBZid5EUfQVzHUzl7QIKHVB9GGRq5_o2d6L_HR9mZGaisb5HAz3xx6VNbAn7ZcoG6aje1q_cXfcq2Pq-KctYpEtIXYPnba5DbEa2tabsTFfmZl7hb8GUf2wECypHy5_ID2nSoQC/s320/IMG_0143.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659469710574285874" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEi3jGPSOlVgtaa5G2pi7qi4Uy-xPhjLn_CXWPXFUkYCr8A3evUpv0zkjhSw1Q5lAePNF38R4rMWZx5jInZFZRUq0vdMONbkx0DFbNIX-zmbtAwX0SCVTUV-QSL5nxw8iy2JnCyKQVEImp/s1600/IMG_0161.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEi3jGPSOlVgtaa5G2pi7qi4Uy-xPhjLn_CXWPXFUkYCr8A3evUpv0zkjhSw1Q5lAePNF38R4rMWZx5jInZFZRUq0vdMONbkx0DFbNIX-zmbtAwX0SCVTUV-QSL5nxw8iy2JnCyKQVEImp/s320/IMG_0161.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659469702741059442" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVILIZ2j06jzUGcn44-hbfnnSxkzVv3UEnmcnMOT7rpS7CaYlKiLd485KPhrNIyj1MOQunkOSgvgumcj_sJTOgx3vqFSJ9YKBJ87xgyFXNdvILn74-ORplprjwyg3Fh9dXnCtMJ59KYIU3/s1600/IMG_0168.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVILIZ2j06jzUGcn44-hbfnnSxkzVv3UEnmcnMOT7rpS7CaYlKiLd485KPhrNIyj1MOQunkOSgvgumcj_sJTOgx3vqFSJ9YKBJ87xgyFXNdvILn74-ORplprjwyg3Fh9dXnCtMJ59KYIU3/s320/IMG_0168.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659469698592920066" /></a><br />It's hard to believe that Brynn will be two months old on Friday (and that my disability leave will be up in 3 days!). Time has been flying by with each day sort of blurring into the next. <div><br /></div><div>Last week was my first official week home by myself with Brynn. Luckily, my mom still stopped by a couple of times to help with laundry and let me take a nap. We also got a visit from my parent's housekeeper which really helped with all of the deep cleaning that we just have not been able to get to. In addition, some very good friends came by with food, did my dishes, and sat with Brynn while I was able to get a quick nap. I'm still sort of reeling from how much work a new baby is (even with lots of great support). Those Sister Wives on TV might be on to something...:). </div><div><br /></div><div>Last week Brynn and I took a trip to the pediatricians office. It was our first time out of the house alone together and it was sort of nightmare. Brynn had been up every two hours all night long and I was exhausted. In addition, she refused to go down for a nap in the morning, or even let me put her down for longer than 3o seconds. By the time 1:00pm rolled around I was so tired I could hardly see straight. I had to take a shower or I didn't think I would be awake enough to take her to the doctors. I finally had to put her down and let her cry while I took the fastest shower of my life. Still, I couldn't pump, eat, and barely got dressed. I was so stressed from her constant crying by the time we got in the car I was shaking and distracted all the way to the doctor's office.</div><div><br /></div><div>Our pediatrician is really awesome and does a great job of treating Brynn just like any other baby while giving her extra special attention around her heart health. She was impressed by her weight gain, her vitals looked good, and she is reaching milestones on target. The doctor decided that Brynn would benefit from getting her two month shots at our next visit, and that she qualifies for an additional vaccination only given to babies with compromised immune systems. She also gave me some helpful information on decreasing discomfort from gas and spit-up which we have noticed more in the last week or so. </div><div><br /></div><div>We are finally getting into (somewhat) of a schedule at home. Brynn wakes me up for good at 7:30am and we do meds, a feeding, diaper change, weight check, and get dressed (well, she gets dressed and I change into a different pair of sweatpants). Then, she hangs out comfortably in the swing for about 2o minutes (long enough for me to wash the dirty bottles, drink a cup of coffee, and pump). Then...the fussies set in. Diaper changes, feedings, rocking, and yes, even swaddling does little to relieve her fussiness. By the late morning I am starving, exhausted, and usually have to pee pretty badly since setting her down for even that long causes her to wail. If I'm lucky I can get her to go down for a short nap. Afternoons are better. She will nap for longer some days of the week but still wakes up pretty frequently for food or comfort. The sleep deprivation and inability to eat regularly, shower, or just have five minutes to myself is getting pretty hard. I'm pretty irritable most of the time. I find myself watching the clock and waiting for Tony to walk through the door and relieve me for a few hours just to do the things I used to take for granted (I get to the dishes, yay!). </div><div><br /></div><div>And then are the days (like today) when Tony walks in the door and the house is a complete disaster (stuff strewn all over the living room, bed unmade, clothes unwashed, dishes piled up) and both Brynn and Mommy are crying inconsolably on the couch. It's hard not to feel like a complete failure as a wife and mother in those moments. Before we had Brynn I had visions of Tony coming home to a perfectly clean house, with dinner on the table, the baby pacified, and me greeting him with a smile. Perhaps I've seen one too many 1950's sitcoms. The reality could not be farther from the truth. I don't what I would without Tony's understanding, support, and constant reassurance that I am in fact a good partner and mother. </div><div><br /></div><div>To make things a little easier we have decided to hire a part time mother's helper who can come in for a few hours a day so that I can take a nap, take a shower, and maybe do a load of dishes or the laundry. Tony will have to take on a couple of tutoring clients to offset the cost of bringing this person into our home. Ultimately, this will mean a longer day for him at least once a week. Once again, I reminded of the sacrifices he is willing to make in order to make life easier for Brynn and me. </div><div><br /></div><div>In terms of Brynn's health I am reminded several times a week of how lucky we are that Brynn is doing so well. Her O2 continues to be in the mid-80's, which is excellent, and her heart rate is consistently in the 150's without much fluctuation. Our cardiologist is thrilled with her weight gain and continued progress. It was pretty amazing to see Dr. Doom and Gloom come alive around Brynn. She cooed, cuddled, and rocked Brynn during our appointment on Friday. I guess there is a reason she is a <i>pediatric</i> cardiologist. The appointment went very well. Thank God my mom decided to come with me since our "quick visit" to the cardiologist turned into a six hour ordeal when we went to get Brynn's blood work done. We are still waiting for the results of panel from genetics. In the meantime, all the standard blood work that is usually taken needed to be done since Brynn received blood and platelets after she was born, making the results invalid. We ended up having to wait hours for the right phlebotomist, for them to locate the right tube, and apparently for the stars to align before they called us back. I ran out of formula, diapers, and patience. Then, poor little Brynn had three painful "needle sticks" aka digging in her arm for vein before enough blood could be drawn. </div><div><br /></div><div>The cardiologist said that she might wait for Brynn's second surgery as long as her stats continue to remain good and she continues to gain weight. This is great news of course, but also changes our plans to be post surgery and home with our families by Thanksgiving. We might end up spending the holiday in the CVICU or on 3 West. No matter where we are, I know that we will continue to have so much to be thankful for! </div><div><br /></div><div>Enjoy the pics of Uncle Dean's visit, Stars and Stripes day in the Watts household, and sleepy Brynn. Don't let her fool you...she never sleeps!</div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-26941112580350683152011-09-23T19:00:00.000-07:002011-09-23T20:14:52.649-07:00There is no place like home!<div style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXelCYg7g9Spu_At51sMuRkmA8x5mx3pOVQ9M8BcgTgnKYjW3cARAh5BLJyZZ9_vDWz1NvbG2NMnBdrfM8U9nP0u7vkGvpg6T89wsivwsgKeAFUHXGA5sD_c14Dm2Ox-P0XJ2ptSG90t7V/s1600/IMG_0128.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXelCYg7g9Spu_At51sMuRkmA8x5mx3pOVQ9M8BcgTgnKYjW3cARAh5BLJyZZ9_vDWz1NvbG2NMnBdrfM8U9nP0u7vkGvpg6T89wsivwsgKeAFUHXGA5sD_c14Dm2Ox-P0XJ2ptSG90t7V/s320/IMG_0128.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5655741794896065698" /></a></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkVPDzwUC5n8OuQs4KQWfMtzzbR9VL8lAoziV0YTuHjhEs-jcnYHHPEaDxeah6pk_DUjHcsORuIiOVlEeSt1NRuyPnCH51AmJ8jmP4wfs67xePbCWbjm1ItBaEMkZn-UbBQ0u7FrMPalIi/s1600/IMG_0131.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkVPDzwUC5n8OuQs4KQWfMtzzbR9VL8lAoziV0YTuHjhEs-jcnYHHPEaDxeah6pk_DUjHcsORuIiOVlEeSt1NRuyPnCH51AmJ8jmP4wfs67xePbCWbjm1ItBaEMkZn-UbBQ0u7FrMPalIi/s320/IMG_0131.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5655741790721112690" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnBeKlK5297GGUcozqv74w_M0c1b62scQkQ2PKrpPTySEYEbz7pCxVbo2xFQW868Uy_UQ92NfyipLEm3_YIcC0PtLKPm8eSvXWpPODxJUKdncOwAf_Fg7A8le9HECN0aMIvUMb3l3bk8Z4/s1600/IMG_0139.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnBeKlK5297GGUcozqv74w_M0c1b62scQkQ2PKrpPTySEYEbz7pCxVbo2xFQW868Uy_UQ92NfyipLEm3_YIcC0PtLKPm8eSvXWpPODxJUKdncOwAf_Fg7A8le9HECN0aMIvUMb3l3bk8Z4/s320/IMG_0139.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5655741785415444546" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiAHC4tRGCl-NhTTEMJmRlQjl22LvHMsVt1z7m0a2bXA1OAnKcbtl7oyek4k-vCqQ_lELEeiltgVoMrS-_v0eaDfpq9MWF60y-lyhdydi07LWrjmXd-GDN3grDV8dLUWWS8FzlwMnj2PjI/s1600/IMG_0138.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiAHC4tRGCl-NhTTEMJmRlQjl22LvHMsVt1z7m0a2bXA1OAnKcbtl7oyek4k-vCqQ_lELEeiltgVoMrS-_v0eaDfpq9MWF60y-lyhdydi07LWrjmXd-GDN3grDV8dLUWWS8FzlwMnj2PjI/s320/IMG_0138.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5655741781744509906" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigMdmo3hVkXZ24lkIuYMG2dMhdPLRVAtc_37K7F5gQv8gnEgANUM89XbMzhWA8-P3RDrMqWg9x_jY0u11RYzob6YdzXv1BktnP3H6YYSedGUfRwMf27UoKDQg6SevaHcf0mVR-CIDWwecp/s1600/IMG_0134.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigMdmo3hVkXZ24lkIuYMG2dMhdPLRVAtc_37K7F5gQv8gnEgANUM89XbMzhWA8-P3RDrMqWg9x_jY0u11RYzob6YdzXv1BktnP3H6YYSedGUfRwMf27UoKDQg6SevaHcf0mVR-CIDWwecp/s320/IMG_0134.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5655741283781893842" /></a><br /><br /><div>As you can see from the pictures we are home! Brynn was discharged from the hospital last Monday, exactly one month from the day she was born and one day after my original due date. As you might remember, the two hurdles we had to jump over were three days of consecutive weight gain and placement of the feeding tube. Brynn had the three consecutive days of weight gain and after much fuss and worry Tony and I sucked it up and learned how to place the feeding tube. </div><div><br /></div><div>We were very blessed to have the nurse we both trusted and adored show us how to place the tube. This nurse was kind and patient but very firm with us and knowledgeable about what had to be done. I held Brynn's head while the nurse helped Tony insert the tube and tape it down. She talked us through the whole process and gave us lots of encouragement and moral support. Thankfully, she also replaced the tube which all along I had thought was too big with a much smaller tube. Overall the experience was much less traumatic than I had anticipated, and I think Brynn ended up being more comfortable with the smaller tube. I went home for the night to get some sleep and was on my way back to the hospital in the late morning when Tony called to say the doctors had rounded and agreed that we could be discharged that afternoon. </div><div><br /></div><div>I could hardly believe it! We had hoped and prayed that they would let us go home but nothing is set in stone until they doctors say so. I spent a few minutes running around trying to figure out what our next steps were. We had accumulated quite the collection of clothes, paperwork, baby gifts, toiletries, and personal items (hello, breast pump!) at my parents place. In addition, we had piles of baby clothes, blankets, and medical supplies at the hospital. Luckily, my mom hadn't left for work yet and she agreed to take the day off to get us packed up and bring all of our stuff over the the apartment. I left for the hospital where Tony and I spent the next few hours reviewing the discharge paperwork, setting up follow-up appointments, and getting Brynn prepared to leave the hospital walls for the first time. </div><div><br /></div><div>It was an unbelievable and surreal experience when we finally had all the paperwork signed, bags packed, and appointments made and were able to pick up our daughter and walk outside. I kept thinking someone was going to stop us or tell us they had made a mistake and that we weren't really allowed to leave. Thankfully, we had an uneventful trip home (Brynn was apparently unimpressed with the great outdoors since she slept the whole way home) and were greeted by my mother who had cleaned up our apartment and stocked the kitchen with groceries. </div><div><br /></div><div>Since we've been home it has been a period of adjustment, joy, amazement, and of course more exhaustion. I might have said this before but I'm not sure I ever fully prepared myself for actually having a A BABY! I prayed and hoped and wished with everything I had that we would bring her home safely but I didn't dare spend a lot of time thinking about what life would be like with an infant. I guess I was taking things day by day. This worked well for me during the months of uncertainty and fear but perhaps did not prepare me physically, mentally, and emotionally to actually bring home an infant with unique and demanding needs. The last two weeks have been a crash course in baby. </div><div><br /></div><div>Brynn's needs and the requirements to care for her did not magically disappear just because we left the hospital walls. Tackling her feeding tube and administering medications has been a process. Monitoring her calorie intake and volume can be tedious. Weighing her and tracking her 02 stats and heart rate is burdensome. And doing all of this while being more sleep deprived then I have ever been in my life is a challenge all on its own. Thankfully, we have had wonderful and amazing support from friends and family. Frozen meals have been especially helpful. My mother coming over every day for the last week to do laundry and dishes and sit with Brynn while I catch up on sleep has been my saving grace. I'm not sure how I am going to cope when she goes back to work next week.</div><div><br /></div><div>There have been times during the week that I have felt so overwhelmed and exhausted I'm not sure I'm physically capable of mixing another bottle or drawing up more medication. In these moments I feel disappointed in myself for feeling even a little bit resentful. I go back to reminding myself how lucky we are that Brynn is here and that we have her at home. I dig a little a deeper inside myself than I have ever had to before and make sure I hum to her while I fix her bottle, and sing to her while I put meds in her tube, and rock her while trying to get her to go back to sleep. Truly, we are blessed beyond even what we could have imagined. I think of people with multiple babies, or the woman we shared a room with at the hospital who had six other children waiting at home for her. I was chosen by God to have this baby, and that means He gave me the strength to take care of her. Even at three in the morning. </div><div><br /></div><div>Brynn's progress has been amazing. She has continued to gain weight daily and her stats have been perfect since we've been home. We have been to the pediatrician and back to the cardiologist and both of them were very impressed with how well she is doing and how good she looks. So much so that they agreed on Wednesday that we could take out her feeding tube and do all of the feeds by mouth! Brynn has been much more comfortable without that tube to choke and make her gag throughout the night. She is eating better and sleeping for longer periods. Everyday she becomes more alert, grows stronger, and gets cuter. </div><div><br /></div><div>Our return date for her next surgery is November 7th. Until then, our goals are continued weight gain, not getting sick, and lots of snuggling. Thank you to everyone for your prayers, support, and understanding. We are so grateful for this time together as a family and hopeful that the next six weeks will continued to be blessed with good health and the wonder that is this little life. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-36282326992494549052011-09-10T19:37:00.000-07:002011-09-10T19:44:35.771-07:0048 hours and a tube is the only thing that stands in our way...<!--StartFragment--> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">We are in full-blown hospital mode. Since our transfer up to 3 West things have hardly slowed down. After five days we are finally in a routine that goes a little something like this:<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">6AM: Brynn’s Food (fortify breast milk with formula, prime pump, attach pump). Try oral feeding to see how much she can take by mouth, put rest through tube (make sure to stop feeding before any air gets in her belly, flush tube with sterile water). <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">7AM: Nurses change shift. We burp and comfort fussy Brynn. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">7:30AM: Nurse checks vitals; we change diapers and get Brynn dressed. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">8AM: We administer morning meds through tube (aspirin, laxis, zantac). Brynn is examined by doctor before rounds.<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">8:30AM: Pump<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">9AM: See Brynn’s Food<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">9:30: Rounds.<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">10AM: Burp and comfort fussy Brynn while trying to pump and change diaper.<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">10:30AM: Hearting test (or another test)<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">11AM: Physical therapy <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">11:30AM: Occupational Therapy<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">12PM: See Brynn’s Food<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">12:30PM: Pump<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">1PM: Burp and comfort fussy Brynn.<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">2PM: Meet with a specialist (take your pick from Child Life Specialist, Lactation, Pediatric Nutritionist, Social Work, medical supply representative, etc.)<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">3Pm: See Brynn’s Food<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">3:30pm Pump<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">4Pm: Burp and comfort fussy Brynn. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">5:00pm: Continue to burp and comfort fussy Brynn who did not tolerate her 3Pm feed. Change diaper, change clothes she just spit up on, possibly give her bath, change her diaper again, and put on more clean clothes. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">6:00pm: See Brynn’s Food. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">I will spare you the other 12 hours but can assure you they look startlingly similar to first twelve (minus the specialists). If you didn’t see anything about eating or sleeping it’s because we don’t really get much of a chance to do either. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">Tony and I have been taking turns staying the night and relieving each other for a few hours during the day when we can (twice I’ve been here for 36 hours in a row and it wasn’t pretty). While we’re here we don’t get to go outside, see sunshine, taste fresh air (or fresh food) or enjoy many of the other comforts of life outside the hospital. We sometimes get cranky or frustrated with one another but try hard not to take out our exhaustion on the other person. As guilty as we feel leaving the other one behind at the hospital we remind each other how important it is to have a break. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">On Thursday night we finally switched out of “The Quad”, one big room with 4 (yes, FOUR) babies and two nurses to a double room. After two hellish nights of non-stop babies crying and alarms sounding I put up quite the fight when they told us we might have to spend another night without sleep and sanity. Parents don’t usually spend the night in the quad, which I can understand given the indescribable amount of noise and commotion going on at all hours of the day. However, we were encouraged not to leave due to Brynn’s small size. I was not about to leave Brynn alone for the night without us but there was no feasible way I could tolerate another night in a 4x6 curtained-off personal hell. Luckily, the charge nurse was able to move some things around and we have been in a double since Thursday evening. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">These days have been crazy, stressful, exhausting, and frustrating. They have also been invaluable in giving us the knowledge of how to care for Brynn when we get her home. Which is really the whole point of being up here. We have to learn to do everything the nurses do on our own. Both of us are feeling more comfortable every day with the typical baby stuff and are getting more at ease with the medical aspects. One giant hurdle remains: changing out the feeding tube. We are not allowed to leave the hospital until we learn how to put in her feeding tube. I am really struggling with this. When Brynn got her tube changed out in the pod she screamed her head off and was fussy and gaggy for the rest of the day. I can’t stand the thought of having to put her through that kind of pain again unnecessarily. I understand that she might pull out the tube and that we would have to go back to the ER to have it replaced (possibly at 3AM) but honestly I would rather take my chances. I’ve tried negotiating, pleading, and bargaining with the medical team but they are pretty dead set on making us pull out and put back in the tube.<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">I already have a love hate relationship with this stupid tube. I understand it is keeping my daughter alive. So far she is only able to take in 20-30mls by mouth 2-3x/day (a far cry from the 55 cc’s she needs 8x/day to gain weight). But I hate that she has to have it. I hate that we have to pump her full of calories 8x’s a day to the point where she can become incredibly uncomfortable and vomit from the amount of volume in her tiny tummy. I hate that I can’t just hold her to my breast and enjoy the comforts and bonding that feeding usually allows. I know that Brynn has to gain weight to survive her recovery and her next surgery. I know that the last thing we want is to end up in the hospital with a “failure to thrive” diagnosis due to an inability for her to gain weight. But I still hate the tube. </span><o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:16.0pt;font-family:Georgia; mso-bidi-font-family:Georgia"><o:p> </o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">Please keep us in your prayers as we get closer to the huge and important task of learning to place the tube. We are hoping that it goes smoothly and causes Brynn minimal discomfort. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;">If Brynn has one more day of weight gain (we need 3 consecutive days to get out of here) we will be discharged on Monday. Ironically, this will be one day after my original due date. And, if she does gain weight again today and we are allowed to go home on Monday I guess I am going to have to thank the tube. </span></span><span style="font-family: Wingdings; "><span class="Apple-style-span" style="font-size: medium;">J</span></span><span style="font-family: Georgia; "><span class="Apple-style-span" style="font-size: medium;"> </span></span></p> <!--EndFragment-->Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-67867296912663006332011-09-07T20:10:00.000-07:002011-09-07T22:31:13.015-07:00Moving on up...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi85-_sDdGEEaVjPt2DMxF4af4_FcCnEtXyw9jl97s7G_yrQ8C6txRAud5cOHOR_HJrRsO_JeDo8doYqK_cE-Lgr06rWI9MxuHaJUoohKI0zCOs4yJhn1iQSbMMydq6Og7j1Eo5IgxLF93Q/s1600/IMG_0120.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi85-_sDdGEEaVjPt2DMxF4af4_FcCnEtXyw9jl97s7G_yrQ8C6txRAud5cOHOR_HJrRsO_JeDo8doYqK_cE-Lgr06rWI9MxuHaJUoohKI0zCOs4yJhn1iQSbMMydq6Og7j1Eo5IgxLF93Q/s320/IMG_0120.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5649825193961050402" /></a><span class="Apple-style-span" style="font-size: medium;"><br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ_K-DW3NDBPtEfVSAs0mDg15d7gZQ9A_dF3SkNrJHoRdE3T2kHlw9nDB8PQYpAokF4dxA8-xEn7FjnPxVyRg-Gq1BdBgBfXAYrA78rPG8SW03Gr59zo_BVCd-4WwMVJ4irnjF0uJQw9fi/s1600/IMG_0117.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ_K-DW3NDBPtEfVSAs0mDg15d7gZQ9A_dF3SkNrJHoRdE3T2kHlw9nDB8PQYpAokF4dxA8-xEn7FjnPxVyRg-Gq1BdBgBfXAYrA78rPG8SW03Gr59zo_BVCd-4WwMVJ4irnjF0uJQw9fi/s320/IMG_0117.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5649825185746034706" /></a><span class="Apple-style-span" style="font-size: medium;"><br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiayapWgRR8VVdfiZVM4p_3hdnvhuJ72EK-05BWkRa8hZcvwj8jf2oV1Qf1grcbr3ZY3YXsYI_hHNFtR_ko2oKe26mo5Yu-jfVk7Rb7UMY63ZEpD2pWfkbtBjKH1olXzSxvgTfge-pdQdof/s1600/IMG_0116.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiayapWgRR8VVdfiZVM4p_3hdnvhuJ72EK-05BWkRa8hZcvwj8jf2oV1Qf1grcbr3ZY3YXsYI_hHNFtR_ko2oKe26mo5Yu-jfVk7Rb7UMY63ZEpD2pWfkbtBjKH1olXzSxvgTfge-pdQdof/s320/IMG_0116.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5649825183098493698" /></a><span class="Apple-style-span" style="font-size: medium;"><br /></span><!--StartFragment--> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">To 3 West! Thats right, folks we are finally here. At this moment it is after 7:00pm and daddy is holding Miss. Brynnie (something we haven't been able to do for weeks now since we had to leave at shift change when we were on the CVICU).<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">All I can say is THANK GOD we are finally out of there. These last 10 days or so have been some of the most difficult of my life. Brynn was continuing to make steady progress for several days. She got all of her tubes, lines, and IV's out (except for her feeding tube), and her stats were looking great on room air with no support. The only thing she wasn't doing was taking anything by mouth. The doctors told us that she had to work on feeding and gain some weight before she would be allowed to go home but that she should be able to work on those things upstairs in the step-down unit. Then...a new team started and decided that they wanted to be extra conservative with her due to her small size and the type of repair she is recovering from. SO...they decided to keep us in the CVICU for another week. And not just the in CVICU but specifically in "the pod" a seven bed hellhole of beeping, crying, alarming, and nurses 24 hours a day. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">This overstimulation really begins to wear you down after the sixth hour of sitting there. Especially when the doctors are telling you that your kid doesn't </span><i><span class="Apple-style-span" style="font-size: medium;">really</span></i><span class="Apple-style-span" style="font-size: medium;"> need to be there but they are going to keep her in this hellish place just to play it safe. Don't get me wrong, I would never want to jeopardize Brynn's health or recovery in any way but I really felt like my own mental health was deteriorating by the day. Every day I woke up, pumped, and went to the hospital to sit and hold Brynn for approximately 6 hours (except when I would have to put her down to run to the cafeteria and shove food down my throat or sit in a freezing dark room and pump). When I got back Brynn would often be fussing or crying by herself. The nurses still took excellent care of her but they now had other patients as well and you can pretty much guarantee that your kids pacifier falling out of her mouth is not going to take precedence over stabilizing another patient. I would go home around 3:30pm or so and Tony and I would come back together by 6:00pm to kiss her goodnight and then head home to eat dinner and collapse into bed. And then I would do it all over again the next day. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">It began to feel sort of like Groundhog Day: a never ending cycle of stress, worry, and exhaustion, with no end in sight. Tony of course had his own difficult days that would begin at 5:30 in the morning and usually end with a tearful and exhausted wife who has been pretty much inconsolable during the most difficult moments. We haven't had to deal with any more surprises from or friends in genetics, and Brynn's progress continues to be excellent, but 90% of our conversations still contain the phrases "try not to worry about it" and/or "I'm just tired". <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">Our days have also been filled with small victories and pleasures. I changed Brynn's diaper for the first time last week and Tony changed his first diaper EVER on Sunday. We have been able to give her a bath, swaddle her, hand her off to grandparents so we can get a bite to eat, and of course my favorite: dress her up! We survived five days </span><i><span class="Apple-style-span" style="font-size: medium;">in a row</span></i><span class="Apple-style-span" style="font-size: medium;"> with our least favorite nurse without losing our minds or our tempers. We even began to tackle her taking food by mouth.<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">Occupational therapy assessed Brynn last week and developed a feeding plan for her to practice taking food orally. They showed me how to position her and how to look out for danger signs that she could be choking (it is very important that we protect her airway and prevent any aspiration). We have run into several problems that relate to her being a preemie and having a heart condition. Brynn had been either totally conked out or super agitated. She rarely had any awake alert time where she would interested in eating. Although she loves her pacifier her latch wasn't strong and she had a very guarded suck. Up until today she was only taking a few milliliters by mouth. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">I have continued to pump as often as I can but have found it difficult to keep up with the demanding 8-10 times a day. The most I have gotten in 24 hours is 7 pumps and some days I only get six. As a result I have been able to supply Brynn with most of the milk she needs but the nurses have had to supplement with formula from time to time. Part of the problem has been keeping up my calorie intake to sustain enough milk. My appetite has not been that great and to make matters worse I tend to get a little nauseous or lose my appetite every time I pump. In addition, I rarely have time to sit down and eat anything when I am hungry since I haven't wanted to leave Brynn alone. I spoke with the lactation consultant who has been trying to help and is encouraging me to try and pump more frequently. My hope is that now that I'm allowed to eat in the same room with Brynn and will have food trays brought up to me I'll be less stressed and able to eat better. I've also had some of the other typical problems including blocked milk ducts (ouch!) and sore nipples (super ouch!). <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">On Sunday we were moved out of the pod and back into a private room in preparation of coming upstairs. It was a huge relief to be out of the chaos and noise. I didn't realize how luck y we were until yesterday afternoon. I went down the hall to the "quiet room" (ironically next to the pod) to pump when I heard a woman sobbing and crying out "my baby, my baby". I got back to our room when the mother next door came in to commiserate about the awful siren that was going off. I asked her what was going on and she looked at me wide eyed "You don't know what that sound means? A baby in the pod is coding. Two babies have died since I've been here.” A giant dose of reality I didn’t need that was enough to send me over the edge. I was in tears the rest of the day. Luckily, I woke up this morning to the phone call that we were moving to 3 West first thing this morning. <o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><o:p><span class="Apple-style-span" style="font-size: medium;"> </span></o:p></span></p> <p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;">My thoughts and prayers continue to be with the families that remain in the CVICU. Our journey to get Brynn well continues upstairs. Thank you for everyone's continued support. We would not be getting through this without your love, support, and prayers. </span><span style="mso-spacerun: yes"> </span></span></p><p class="MsoNormal"><span style="font-family:Georgia; mso-bidi-font-family:Georgia;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></span></p> <!--EndFragment--> <iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxEevuARrPg5Jolswenb0hH8JFHzKtewZchIHdw-8joPyECdGCD9a6xaL7bNz3ZNb5p-8en_Yhcz0CzM7txIA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-81404735348324332192011-08-28T19:40:00.000-07:002011-08-28T21:20:39.635-07:00Good News!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8LRKoK6bNvEKlgCVmgTi2Yw8UpN6q3_ZTOBwbuaXtf2XmJ7hHTFw1pipe1gJ28IqQUXKsxFZgWL23R7mOT4n40Hx6uOJzXwFr1_Ip9zvqf3ul_5oF9ff5OM-VDTg42luuydqkbjCWlEXQ/s1600/IMG_0096.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8LRKoK6bNvEKlgCVmgTi2Yw8UpN6q3_ZTOBwbuaXtf2XmJ7hHTFw1pipe1gJ28IqQUXKsxFZgWL23R7mOT4n40Hx6uOJzXwFr1_Ip9zvqf3ul_5oF9ff5OM-VDTg42luuydqkbjCWlEXQ/s320/IMG_0096.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5646126806369495762" /></a>
<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9DJsUP3nHlm_rLZOzElCuxC2NAqXIo6wuWCUlvAHKrf52YzsdJarXMOMFCkiA8jwcyA8jR0plgg-StGvKkbjwK5UFIbxxDNv0JOuIJQ5LLg6fMbmkWu9OcxY214CX-SFBEZDDHZqpoqOX/s1600/IMG_0093.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9DJsUP3nHlm_rLZOzElCuxC2NAqXIo6wuWCUlvAHKrf52YzsdJarXMOMFCkiA8jwcyA8jR0plgg-StGvKkbjwK5UFIbxxDNv0JOuIJQ5LLg6fMbmkWu9OcxY214CX-SFBEZDDHZqpoqOX/s320/IMG_0093.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5646126801553194274" /></a>
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<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaPEYd2v_7wWz9lgyfAFCrHAOKmFOXlHCk41Uq0TkDYQM2swyJTEPep6-cwNfDHRjVjkQrGOlIpYHDEcW50_SDuk8YIcrUonsENQqNjMW2JOxcWs7nyaU3R5Rt6QTBNX3f7yCM5K5rHnDM/s1600/IMG_0076.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaPEYd2v_7wWz9lgyfAFCrHAOKmFOXlHCk41Uq0TkDYQM2swyJTEPep6-cwNfDHRjVjkQrGOlIpYHDEcW50_SDuk8YIcrUonsENQqNjMW2JOxcWs7nyaU3R5Rt6QTBNX3f7yCM5K5rHnDM/s320/IMG_0076.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5646104429110371314" /><span class="Apple-style-span" style="color: rgb(0, 0, 0); "></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaPEYd2v_7wWz9lgyfAFCrHAOKmFOXlHCk41Uq0TkDYQM2swyJTEPep6-cwNfDHRjVjkQrGOlIpYHDEcW50_SDuk8YIcrUonsENQqNjMW2JOxcWs7nyaU3R5Rt6QTBNX3f7yCM5K5rHnDM/s1600/IMG_0076.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><span class="Apple-style-span" style="color: rgb(0, 0, 0); -webkit-text-decorations-in-effect: none; ">I can't believe it's been 10 days since I've last posted, or how much has happened in the last 10 days! Things move pretty fast in the CVICU. Brynn continues to make excellent progress. She got her breathing tube out earlier this week and was put on high flow oxygen. </span></a><div><span class="Apple-style-span" style="color: rgb(0, 0, 0); ">
<br /></span></div><div>They weaned her off all of her medication and took out both central lines. Huge steps th-<div>at finally allowed me to hold her on Wednesday (an amazingly moving and soul satisfying experience to say the least). <div>
<br /></div><div>We have had our setbacks as well. There were concerns that Brynn's head is too small, that her ears are too low set, and that she has a flap of skin on the back of her neck. She also received several doses of methadone that zonked her out of her head (as you can see) which sedated her so much that she had to be put on a CPAP machine to help with her breathing (giant and hideously uncomfortable apparatus that forced air into her lungs to keep them</div></div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvbgNWDTxUIL79nqL98zm_CSPYKBDnLmHS9ogQRxRV6K51S0DhLCJrczI9uVX5p-4-3dAgTH-nW82cWdJageEVAU8bafi2xYCiAVsp8mODoR1Oe39FJZLTrOtqrSh_za9Lt5Js6rGIacNc/s320/IMG_0081.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5646106514649327074" /> from collapsing, see left). The doctors grouped this information all together and decided that Brynn needed to be evaluated by the genetics team to rule out a syndrome or metabolic disorder. I was completely blindsided by their decision since I had missed rounds that morning and so I had no idea why a gentleman in a white coat came up and asked if I was related to my husband and could he please examine my baby.<div><div>
<br /></div><div>Now, these "abnormalities" have been pretty much rulled out since someone decided to finally weigh her. She is not 7.5 lbs as originally thought, nor is she 6.5 lbs as was the estimate last week (and what they have been dosing her at by the way). Our little premie is weighing in at a respectful but dainty 5.5 lbs. This makes the amount of pain medication they were giving her way more then she could handle and puts her in a completely different percentile for head size. Her ears are perfectly positioned by the way, which is now evident with the CPAP machine off her head (it was pulling down her ears). </div><div>
<br /></div><div>Despite our share of scares this week Brynn's progress is remarkable. Her arterial line was pulled today and yesterday they stopped the high flow and then took out the nasal prong altogether. As of this evening only two IV's and a small feeding tube remain. The only medication she is taking consistently is aspirin for her shunt. Occupational therapy comes by tomorrow to check out her swallowing. We already know she hasn't lost her sucking reflex (LOVES her pacifier) and that she has pretty good coordination with being able to swallow and breath at the same time so we are hopeful that tomorrow's study will go well. </div><div>
<br /></div><div>As the doctor told us today, there is no medical reason that Brynn cannot be moved upstairs to the step down unit known as 3 West. Her size and her ability to eat will be the only hurdles affecting her discharge. Which by the way, they think could be as soon as NEXT WEEKEND although that is completely up to "The Boss" aka Brynn. </div><div>
<br /></div><div>We are hopeful and grateful for all of her progress thus far and cannot believe all that she has been through and accomplished in the 16 beautiful days she has been with us. Thank you everyone for all of your support, prayers, dinners, books, and encouragement. We continue along this journey in awe with gratitude and appreciation for all the gifts we have been given. Hopefully, we will have more good news to share with your soon. </div><div>
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<br /></div></div></div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-48368095775545498032011-08-18T21:27:00.000-07:002011-08-18T22:30:03.871-07:00We keep on trucking...:)<p class="MsoNormal"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">What an amazing rollercoaster we ar</span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">e on! I wish I had the time and en</span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">ergy to post every day.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">I was discharged from the hospital on Tuesday afterno</span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">on. By far Tuesday was the most difficult day emotionally. It was one thing to be down the hall from my baby. Being 10 miles away is a totally different ball game. I must have burst into tears about five times. I cried leaving the hospital. I cried while I pumped and sniffed a little hat that smelled like her. I cried when we went back to the hospital and I stood over her little body still so puffy from fluid. I cried when I called the hospital and got an update that the nurse had come on shift and found her grimacing in pain and had to up the pain meds. Tuesday was a hard day. I felt like this was all going to be pretty impossible. Thank God for my very supportive husband who held me and told me everything was going to be okay.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;"><o:p></o:p></span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">Yesterday I felt much stronger emotionally as soon as I got to the hospital. I had to resist the urge to run to her bedside but once I got there I was able to relax and enjoy being close to her. Unfortunately, my physical body wasn’t doing so hot by the mid-afternoon. The dreaded post c-section constipation hit with a vengeance. I struggled in pain for close to 8 hours with no relief from any of the recommended remedies. Seriously, this pain made my contractions feel like a walk in the park.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;"><o:p></o:p></span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">We were minutes away from calling 911 since I was convinced at that point I had perforated my bowel and all I could think about was how I was going to lose my milk supply since I wouldn’t be able to pump. Finally, my mom stepped in with some heroic measures and saved the day. I will spare you the details. Lets just say she is an angel here on Earth who not only came to see me in the hospital every day but has cooked all our meals, packed my lunch, cleaned our room, done our laundry, and even helped her 30 year old daughter with an area no mother should have to see after their child is over age 3. I will say that Tony did offer but as my mother generously stated after it was all over “There are just some things a new husband shouldn’t have to see”. Luckily, Tony was able to go back to the hospital without me to say goodnight to Miss. Brynn and bring her a new hat and some booties to keep her tootsies warm.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;"><o:p></o:p></span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">I have been so incredibly blessed to have so much support through this first week. I truly don’t know what I would do without my Mom and my husband. Pumping would be impossible without Tony’s constant help and support. Since day one he has made pumping a team effort. He ties on the straps so I can pump hands free. He cleans all the parts, hooks me up to the pump, writes down and totals how much I have collected, and labels and refrigerates the milk. Remember that we have to do this 8 times a day, including in the middle of the night. I am gradually doing more and more of this by myself but I am sure I would have given up by now without his encouragement. God bless the nurse who hand expressed for me the first night I was in the hospital. I was so exhausted I fell asleep while she filled the little syringe that fed my daughter today.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;"><o:p></o:p></span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">Speaking of my daughter…she is doing fabulously. The first few days it was all about what they could add to keep her stable. Now, it is all about what they can take away. Yesterday they took her off the oscillator (special vent that delivered 200 breaths per minute in tiny little puffs and made her shake constantly). They put her on a regular ventilator yesterday, which she tolerated beautifully. Today they took her off the epinephrine and were able to start feeds after inserting an NJ tube (tiny tube through her nose that delivers food directly to her small intestine). They are hoping to take out one of her central lines soon (she has two, one through her belly button and one directly in her heart). And they are hoping that she will be off the ventilator over the weekend. She is still on lasix to try and get some more of the fluid off (I can relate with my puffy feet and ankles). They might begin her on the “tanning bed” lights tomorrow to decrease her jaundice. Her stats all remain stable and she continues to make daily progress.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">Tony starts back at school next week and was able to go into his classroom today to get things set up. I am slowly getting into a routine of getting into the hospital around 10am in time for rounds, staying till about 2:30 and then coming home for a nap. We usually go back together in the early evening. Lucille Packard is an amazing place that really caters to parents in making them feel comfortable and offering so many amenities and so much support. (As a side note to any single men out there reading the blog, all of our nurses have been young, stunningly beautiful brunets with Ivey league educations and great personalities. Kind of intimidating as a puffy new mom who still has to waddle from the c-section pain but I’ll be happy to introduce you if you pay us a visit. :-) </span></span><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-family:georgia;">)</span></span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYS8V5ghaVuULwCO0l0_Dn2DOnwITIN58H08ObHbMq_TmVpq_Ve9DjX7z_Z47W0iObb-hO0JcGeqcvOe8LMNzn4twh_DK-agNe7uXsVDVsZ5uR09xqvwqlAzWt02JC0-XP8peNpXY-0ANL/s1600/IMAG0083.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 191px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYS8V5ghaVuULwCO0l0_Dn2DOnwITIN58H08ObHbMq_TmVpq_Ve9DjX7z_Z47W0iObb-hO0JcGeqcvOe8LMNzn4twh_DK-agNe7uXsVDVsZ5uR09xqvwqlAzWt02JC0-XP8peNpXY-0ANL/s320/IMAG0083.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5642432150745175890" /></a>
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<br /></span></p> <!--EndFragment--> Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-41481343495374473862011-08-15T09:08:00.000-07:002011-08-15T10:02:05.559-07:00She is here!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPSpy3caqCaK1DXuUuFmRAWwuxPQ22zRD97UqHsKxMhflt6FEHIzkzD2DYjqnOHivlVlQRpsjnAGREe5vstXvhgAqJUDfpxk1aa4btrSfpPn2lZqrvuCTZNs1J7jlfAvDbG85Q2gDv3vWJ/s1600/IMAG0065.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPSpy3caqCaK1DXuUuFmRAWwuxPQ22zRD97UqHsKxMhflt6FEHIzkzD2DYjqnOHivlVlQRpsjnAGREe5vstXvhgAqJUDfpxk1aa4btrSfpPn2lZqrvuCTZNs1J7jlfAvDbG85Q2gDv3vWJ/s320/IMAG0065.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5641127632752264482" /></a>
<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHhZa6G0xWEFLKt23RrMaH_9-N9IyEIHaugkmuhtLirtvgHFrFFkuCglEKF4NJgIwy_K0WKm6m5y9BWilJeuJGhBzp-_zrnc1YGiKsZ8Owt_wE_iuPSb6c_IV8J1jPKjgt5SG63vwJ3hh7/s1600/IMAG0064.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHhZa6G0xWEFLKt23RrMaH_9-N9IyEIHaugkmuhtLirtvgHFrFFkuCglEKF4NJgIwy_K0WKm6m5y9BWilJeuJGhBzp-_zrnc1YGiKsZ8Owt_wE_iuPSb6c_IV8J1jPKjgt5SG63vwJ3hh7/s320/IMAG0064.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5641127626012845106" /></a>
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<br />Brynn Elizabeth Watts is here! She was born on 8/12/11 at 8:09am. They didn't get a chance to actually weigh her or measure her since there was so much going on but the rough estimate is 7 lb 11oz and 19 inches long. <div>
<br /></div><div>It was a very scary morning for all of us. We arrived at the hospital at 6am and they immediately started prepping me for surgery. I received a HUGE IV since they delivered me in the regular OR (not maternity OR) which was really painful. They told us that due to the venue change Tony might not be able to attend the birth. Luckily, the head of anesthesiology approved of Tony being present. Tony looked so cute in his scrubs! </div><div>
<br /></div><div>We kissed our families goodbye and they wheeled me down on the gurney. The epidural was painful and scary. It didn't help that we were in a large sterile room with over 40 people setting up and getting ready. Seriously, not exaggerating. Forty people. Even more people stood watching outside. My OB put the drape up and begin the procedure. I couldn't feel anything but the anxiety and anticipation of what might happen when they pulled her out was multiplied by the room of people all wondering the same thing. </div><div>
<br /></div><div>The OB announced she was going to make the uterine cut and I swear everyone held their breath. Except for Brynn! She let out a loud and beautiful cry as she came into the world. Tony and I were not expecting her to cry since they had prepared us for a very blue and silent baby. It was the most amazing sound I have ever heard. </div><div>
<br /></div><div>The team began to work on her immediately. We could hear them shout out her numbers and stats. Brynn's stats started in the 80's but then quickly began to drop. They had her on 100% oxygen but her blood gas was still very poor (she wasn't getting rid of carbon dioxide in her blood stream). The doctors let Tony run over and take a picture so we could see her. As they told us they would, they waited a few minutes but then decided they needed to take her to the OR since it was looking like they would need to do surgery right away. </div><div>
<br /></div><div>They stitched me up and took me back to recovery. I could not stop shaking from the epidural and the itching that it causes is horrible. I was pretty miserable. Doctors from the heart team came in to tell us that Brynn was in surgery and that things were looking good. We didn't hear anything for another three hours. By then our anxiety was through the roof. The surgeon finally came in with a huge smile on his face to tell us they had put in the shunt and that surgery had gone very well. Thank God!</div><div>
<br /></div><div>Brynn has now been in the CVICU since Friday afternoon. Tony and I were able to see her about an hour after surgery. She is so beautiful. She has a head full of red hair and the sweetest little face. I can't wait till I can pick her up and hold her. Her strength and persistence is amazing. Brynn continues to make very slow progress. Her blood pressure, pulse, heart rate, oxygen stats, and blood gases have been stable overall. However, they have all been too high or too low at some point over the last few days. Brynn has been pretty swollen from the surgery and as a result her kidney function has not been the best. Last night they gave her lasix which helped her to finally pee off some of the fluid and inserted a catheter to drain out some fluid in her belly. She has four IV's and is receiving more medicine then I can keep track of. They feel she is a little sicker then other babies in the same boat but overall they are pleased that she continues to make progress.</div><div>
<br /></div><div>The nurse told us we can expect to be here for 6-8 weeks. I get discharged tomorrow. *Sniff* I hate the idea of having to leave without my baby but I know I need to get as much rest as I can to take care of her. Tony goes frequently to the CVICU but it is a little harder for me since I am still in a wheelchair and in a lot of pain. </div><div>
<br /></div><div>Overall we are all doing pretty stinking well. I feel so incredibly lucky and blessed beyond words that Brynn is here and stable. The nurses and doctors have been incredible. Our family and friends have been a non-stop source of support. Thank you so much to everyone for all of your well wishes, prayers, positive thoughts, and good energy. I could literally feel the positivity all day on Friday and I think it directly affected how well Brynn is doing and the progress she continues to make. I continue to read and re-read the comments and posts for inspiration and comfort. Thank you!</div><div>
<br /></div><div>Just a warning, some of the pictures might be a little disturbing to look at (me after a C-section is not a pretty picture). :) Oh yeah, and the one's of Brynn might be difficult to look at but just remember that she is not is any pain. </div><div>
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<br /></div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-28199852810212132042011-08-10T22:29:00.000-07:002011-08-11T00:02:07.695-07:00Rescheduled and ready to begin our new journey...The last 24 hours have been a whirlwind. My first day of leave was productive and busy. I wanted to relax but I couldn't seem to stop moving. It might have been the anxiety about the upcoming delivery. It could have been all the steroids they injected into me a few days ago. It could have been just old fashioned nesting. Whatever it was, I spent the day rushing from one activity to another. My husband came home to me wide-eyed and panting on the couch and kindly suggested that I try and take it easy for a couple of hours. <div>
<br /></div><div>Tuesday was a little easier but I was still feeling a lot of pressure with only 8 days left before Brynn's arrival. My list of things to get done felt long and I had lost some of my stamina from the day before. And then our cardiologist called at 4:01pm. She calmly informed us that the medical team had met that morning and that due to a scheduling conflict our delivery has been moved up to Friday. As in THIS Friday, 8/12 at 7:30am. I'm still not sure if it is a conflict with the OR or the surgeon or maybe there is just a really good ball game on television that everyone wants to see. Whatever the reason, we were informed that instead of the 8 planed days we had left...we now had two. The OB called to let us know she had been filled in on the plan (apparently she wasn't planning on catching the game) and had cleared her schedule for Friday so that she would be able to deliver us. I got online and looked up "how to prepare for a C-section". Today, we firmed up our finances, paid bills, installed the car seat, ordered our kit for cord blood banking, packed our suitcases, double checked our insurance coverage, and spent one more night in our home as married couple without kids. </div><div>
<br /></div><div>Tomorrow, Tony goes back to his classroom to try to get it as ready as he can before school starts on the 24th. I'm going to try and tie up any loose ends around the house and finish up some paperwork before we head to the hospital for the pre-op (blood draws and meet with the anesthesiologist). Then we will get to my parents house where we will be staying for the next few weeks to unpack and get ready for our 5:00am wake-up call. Gone are our plans to have the nursery finished, Tony's lesson and substitute plans completed, my thank you notes all mailed off, etc. If I thought I was going to lose my mind with 8 days left, I have certainly had to prioritize my time with less than 36 hours to go.</div><div>
<br /></div><div>I guess it shouldn't surprise me. Brynn has been very eager to get into this world from the moment we knew about her existence. She has made it very clear that she wants to be here ASAP! Knowing that this pregnancy is about to end has really made me reflect on the journey we have had along the way. My feelings about Friday are a mix of anticipation, excitement, hopefulness, and fear. Before all of this, I would have been terrified at the thought of having blood drawn, an epidural, and surgery. Now, all of that is just a few more hurdles I need to jump over to get to meet my daughter and know if she is going to be okay. </div><div>
<br /></div><div>I've been reading this book called "When prayers aren't answered: Opening the heart and quieting the mind in challenging times." I know it sounds like a downer but really it is all about deepening your faith and relationship with God during difficult times. It helps to remember that God's love doesn't always come in the form of giving us what we want but it is always enduring, ever present, and eternally available. This has been a challenging lesson but a lesson that I learned the day we found out something was wrong with Brynn. </div><div>
<br /></div><div>Up until that day I had prayed every night for a healthy baby. When we got the call that they thought something might be wrong and we needed to come in for more tests I felt broken and betrayed by God and by my own body. I continued to pray that the doctors would be wrong and we would find out that she was healthy. And then, on the day we went in for the more detailed scan I stopped praying for a healthy baby and started praying instead for the strength to deal with whatever news they gave us. It was of course much worse than I could have anticipated. But somehow I was able to cope when they gave us the news that half of Brynn's heart was missing, and then while they put a 10 inch needle into my belly to pull out amniotic fluid.</div><div>
<br /></div><div>Finding strength over the next 48 hours as we waited for the amnio results was much more difficult. I stopped eating. I didn't get out of bed. I don't even think I changed my clothes. Amazingly, it was Brynn herself who gave me the strength to prepare for the test results. Up until that point I had barely felt her move and Tony hadn't gotten to feel her all. That weekend she suddenly started kicking with a strength and frequency that reminded both of us "Hey! I'm still in here! Don't give up on me!". When we finally got the results that all her chromosomes were normal we had already made the decision that we would have this baby despite her heart malformation and the serious health problems she might face. Apparently, about 50% of couples choose not to continue the pregnancy. </div><div>
<br /></div><div>I think about all the lessons my daughter has already taught me about strength and faith. As the Prayer book points out; in many non-Western cultures when a baby is born the entire community gathers to celebrate the birth of a celestial being, the divine, an angel, a form of Light in this world. Babies in our culture are also celebrated but almost immediately people begin to hypothesize about who this baby will be, what they will accomplish, and who they will become. Almost as though the real meaning and importance of their life comes later. With Brynn, the truth is we really don't know what to expect or know how much time she will have on this Earth. Every breath, every moment, every heartbeat is a miracle and a gift. How blessed Tony and I are to have been given this special gift and to have been taught by such a sweet angel how precious life really is. How lucky we are to have been given so much support and love from a community who anticipates the arrival of our daughter with prayers and positive thoughts. </div><div>
<br /></div><div>I'm not sure how things are going to go on Friday. The doctors aren't sure how things are going to go on Friday. If things go badly I don't know if I will be able to take all the lessons Brynn has taught me and all the strength she has given me to get through what we might face. However, I do know that we are never alone and we are never forsaken. And I know that Tony and I are truly blessed to have been on this journey together. </div><div>
<br /></div><div>If you happen to be awake at 7:30am on Friday morning please say a prayer for us and keep us in your thoughts. No matter what happens, Tony and I are finally going to meet our daughter! </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-36501430517601988122011-08-06T22:05:00.000-07:002011-08-06T22:51:29.454-07:0010 days to go...As I'm sure I've stated before: Every week with this baby is an adventure and she isn't even born yet! This week has been no exception. <div><br /></div><div>It started with another hour of intense contractions early Thursday morning. At 4am for over an hour every 10 seconds. Super ouch! We decided to hold out and do the recommended home remedies (ice, tylenol, lots of water) and eventually they went away on their own. However, as my mother pointed out, I really shouldn't be counting on these episodes as false alarms considering how important it is that Brynn be born at the hospital. If it happens again in the next week we will probably go back to labor and delivery. </div><div><br /></div><div>Later that morning we headed to see the OBGYN. Everything was looking great until Brynn's heart rate slowed (apparently very common, we just happened to catch it) requiring us to spend about 20 minutes on the monitor to make sure it is not a reoccurring phenomenon. Luckily, she checked out fine. However, we were expecting to get our first dose of the steroid needed to mature Brynn's lungs and were told that they didn't have it at the doctor's so we would have to head up to labor an delivery to have the injection done there. Injection!? I had been told that it was given orally...but NOPE. Two shots, one in each cheek 24 hours apart. So...we headed up there where I was admitted to labor and delivery (oh the irony) the order was placed and filled at the pharmacy, and I left with a very sore bottom. Oh, and I missed the majority of my baby shower and pot luck at work due to all the extra time it took that morning to get everything done. Luckily, the staff saved me lots of food that I was able to enjoy after an exhausting morning. </div><div><br /></div><div>Happily, my OB and I finally got on the same page about having me start my disability leave ASAP. Another doctor that I have been working with called and advocated on my behalf that all the stress, back pain, etc. have really been taking their toll and that the best thing for me and the baby would be to start my leave right away. The OB agreed! Yay! So, my last day of work was on Friday. </div><div><br /></div><div>I had been having some really mixed feelings about having to leave work and I think I was in denial about having to say goodbye to my incredible co-workers and clients. However, in the last week or so I have really begun to shift and look forward to having some time off to prepare for this baby physically and emotionally. It was still difficult to say goodbye but I am feeling much more confident that I will be back in the next six months and have felt ready for the closure and the goodbyes. </div><div><br /></div><div>Friday morning we got up and headed back for my second shot (hardly hurt at all!) and our weekly trip to the Heart Center. The scan showed no change in the amount of restriction. We are always of course hoping that it will become less restricted but are relieved and happy that it has not closed off anymore. The doctor told us that she thinks we are still on track for a delivery on the 17th! Just 10 short days away...</div><div><br /></div><div>In case anyone didn't get a chance to view the board I made with FAQ about Brynn's health and delivery, I will post them here now. Thank you again to our amazing friends, family, and co-workers who continue to be such a source of support, inspiration, and strength. We love you!</div><div><br /></div><div><!--StartFragment--> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">Where will Brynn be born?<o:p></o:p></span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">Brynn will be born at Lucile Packard Children’s Hospital at Stanford. She will be stabilized and then taken to the NICU. Brynn will undergo her first surgery within minutes or weeks (depending on her stats) and then be transferred to the Cardiovascular Intensive Care Unit (CVICU) in the same building.</span></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">How long will she be in the hospital?<o:p></o:p></span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">Typical recovery time from surgery is 10 days. Complications could develop, including arrhythmias, fluid build up around the heart or lungs, or infection. These can delay hospital discharge for several weeks. Average time from birth to discharge is approximately 2-3 weeks (although it could be longer since she will be premature).</span></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">Will you breast feed?<o:p></o:p></span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">Hopefully! Brynn will most likely not receive any breast milk during the first few days of her life (she will be given IV fluids). There is a possibility Brynn might lose her sucking and swallowing reflex due to being intubated and sedated after surgery. Hopefully she will regain this reflex before she is discharged (up to 80% of HRHS babies do!). If she doesn’t, she will go home with a feeding tube. <span style="mso-spacerun: yes"> </span></span></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">Can I come visit?<o:p></o:p></span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">Two visitors are allowed in the NICU and/or CVICU at a time (one of them must always be the parent). Children under 12 are not allowed. Anyone who has a cough, cold, fever, or rash should NOT visit. Tony and I will pretty much be there 24/7 so please come by and keep us company if you would like (we would love it!). <span style="mso-spacerun: yes"> </span>Shift change is always between 7-7:30 AM and PM. We will not be allowed on the floor when this happens so that would be a good time to meet up for dinner or a cup of coffee. <o:p></o:p></span></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style""><o:p> </o:p></span></b></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">What can I expect to see at the hospital?<o:p></o:p></span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">The CVICU is a 20-bed state-of-the-art facility. Brynn will most likely be “on the floor” with 6 other babies. She will be connected to many tubes, wires, and monitors. Don’t worry, that is normal at this stage of the game. She will have one-to-one nursing care 24 hours a day. We might not be able to hold her during this time but can hopefully read and sing to her, touch her, stroke her face, and hold her hand.<span style="mso-spacerun: yes"> </span>Parking at the hospital is not free but there is free valet. Be prepared to check in at the entrance and let them know you are going to the CVICU on the 2nd floor. Not sure yet if we will have cell reception or access on the floor. <o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style""><o:p> </o:p></span></p><p class="MsoNormal"><span style="font-family:"Bookman Old Style""><o:p></o:p></span><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">How about when you are home?</span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">Heart babies have difficulty recovering from even a common cold. If Brynn gets sick between her first and second surgery it can compromise her recovery and jeopardize her life. For this reason we might not be able to have visitors or leave the house with her for the first three months. Please check with us before stopping by and make sure all your immunizations and flu shots are up to date if you would like to pay us a visit. Please leave your little ones at home unless you hear differently from us.</span></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style""><o:p> </o:p></span></b></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">What will her surgeries and life be like?<o:p></o:p></span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">All of her surgeries will be performed on the outside of her heart so she will hopefully never have to be put on a heart/lung machine. The most tenuous time for Brynn will be between her first and second surgeries. Her first surgery is the simplest but the most dangerous for her. Brynn’s life depends on the little piece of plastic (shunt) they place in her PDA (duct). After her second surgery her quality of life should improve greatly, and even more so after the third. She will have early intervention services, including physical and occupational therapy, to assist her with milestones as needed. Brynn should be able to do everything a normal baby, toddler, and child can do. <o:p></o:p></span></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-family:"Bookman Old Style"">What can I do to help?</span></b></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style"">A lot! <o:p></o:p></span></p> <p class="MsoListParagraphCxSpFirst" style="text-indent:-.25in;mso-list:l0 level1 lfo1"><span style="font-family:Wingdings;mso-fareast-font-family:Wingdings;mso-bidi-font-family: Wingdings"><span style="mso-list:Ignore">v<span style="font:7.0pt "Times New Roman""> </span></span></span><span style="font-family:"Bookman Old Style"">Food: Let us know if you would like to be contacted about providing a meal while we are in the hospital (yucky hospital food gets old and expensive) or when we return home. <o:p></o:p></span></p> <p class="MsoListParagraphCxSpMiddle"><span style="font-family:"Bookman Old Style""><o:p> </o:p></span></p> <p class="MsoListParagraphCxSpLast" style="text-indent:-.25in;mso-list:l0 level1 lfo1"><span style="font-family:Wingdings;mso-fareast-font-family:Wingdings;mso-bidi-font-family: Wingdings"><span style="mso-list:Ignore">v<span style="font:7.0pt "Times New Roman""> </span></span></span><span style="font-family:"Bookman Old Style"">Prayer: Your prayers and positive thoughts mean a lot to us.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family:"Bookman Old Style""><o:p> </o:p></span><span class="Apple-style-span" style="font-family: 'Bookman Old Style'; "> </span></p> <p class="MsoListParagraph" style="text-indent:-.25in;mso-list:l0 level1 lfo1"><span style="font-family:Wingdings;mso-fareast-font-family:Wingdings;mso-bidi-font-family: Wingdings"><span style="mso-list:Ignore">v<span style="font:7.0pt "Times New Roman""> </span></span></span><span style="font-family:"Bookman Old Style"">Read: We will continue to provide updates and information on our blog. <o:p></o:p></span></p> <!--EndFragment--> </div><div><br /></div><div><br /></div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-88000150897595716502011-07-29T14:25:00.000-07:002011-07-29T15:20:32.824-07:00Ready or not......here she comes!<div><br /></div><div>The doctors have finally collaborated and agreed upon a due date and arrival method for Miss. Brynn. August 17th at 7:30am by scheduled C-section! Tony and I were relieved and excited to finally have a time frame in mind and to know how Brynn will arrive. At least if everything goes according to plan...</div><div><br /></div><div>This last week has already brought several surprises and unexpected forks in the road. As you might have read on Facebook earlier this week, all of the "back spasms" I have been having are actually contractions. This was discovered at 12:30am last Saturday after they started happening every five minutes. A trip to labor and deliver and five long hours on the monitor confirmed this. Luckily, IV fluids and a very low dose of morphine was able to slow, then completely stop, the contractions. They are not entirely sure what was causing the contractions (blood and urine work ruled out a kidney stone or UTI) which is a little scary because that means they could come back. I am trying to stay hydrated and as well rested as possible. </div><div><br /></div><div>This is proving to be somewhat difficult since my OBGYN has refused to allow me any disability leave before the C-section. The August 5th date we had agreed upon last week was changed to August 15th (yes, two days before I am supposed to deliver) after the C-section was scheduled. Luckily, I am blessed to have very understanding co-workers and supervisors who are looking the other way at my coming in to the office for only 2-3 hours a day. </div><div><br /></div><div>We were also informed on Tuesday that the cardiology team now believes that something environmental must be causing the PDA to restrict. They have asked me to start keeping a strict food journal and to stop all medications. This news is frustrating since the first question I asked six weeks ago was "Is there anything I could be doing or not doing that might be causing the restriction?" and was reassured over and over again that there was nothing to support this claim. There still isn't any literature or study that supports the claim but the doctors are trying anything they can in an effort to stop the restriction. </div><div><br /></div><div>Today was a somewhat difficult appointment at the Heart Center. Dr. Doom is proving to actually be much more caring and knowledgeable then we originally gave her credit for but she still likes to give us bad news so the name has stuck. :) The scans confirmed continued PDA restriction. Luckily, there is still no fluid around the heart and the pulmonary artery is only slightly smaller than it should be (indicating that the restricted PDA hasn't restricted blood flow and growth to other areas of the heart). </div><div><br /></div><div>The doctor shared that she has spoken to several pediatric cardiologist from Canada to Florida, including the "grandfather" of pediatric cardiology who literally "wrote the textbook" and that none of them have ever seen PDA restriction in HRHS babies. For this reason, the doctors simply do not know what will happen after Brynn is born. She is currently being exposed to prostaglandins in utero but the hope is that they will be administered at a higher dose after she is born and this will allow the PDA to stop restricting long enough (hopefully several weeks) to give her the best chances for a successful shunt operation. If her oxygen stats are too low (say in the 30s) she will need immediate surgery (they have blocked off the OR the morning of her delivery to prepare for this scenario). However, this can be difficult since the shunt they will have to use might be too big for her premature heart, causing too much blood flow and causing her heart to work too hard. She will then most likely need tube feedings on special formula to speed her growth so that she can grow into her shunt. The doctor told us it is reasonable to believe that even a very sick baby like Brynn might be will be able to gain enough weight quickly to decrease the strain on her heart. </div><div><br /></div><div>Best case scenario, her stats are stable enough (at least in the 60s or 70s) that she can spend a few more weeks growing after she is born before undergoing the operation. In the meantime, the continued restriction still worries the doctors so they are going to have me take steroids to help mature Brynn's lungs in case they decide to deliver her early. They are hoping that the restriction will have not progressed even more when we go in next week, increasing our chances of a crash c-section. </div><div><br /></div><div>Tony and I are of course hoping for the same thing. I wasn't sure we would make it to 36 weeks when they gave us the news six weeks ago about the PDA so if we do make it to our scheduled delivery date it will be a miracle in and of itself. We continue to prepare for her arrival, and are so grateful for the time we have been given to get as prepared as possible for her birth and delivery. Please pray that Brynn is able to hang in there a few more weeks and that the doctor's predictions and hopes for a stable delivery are correct. We are holding on to the fact our baby's kicks and movements are strong and that her premature arrival is just another sign of how she simply can't wait to be with us. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-16395041581686663272011-07-22T22:11:00.000-07:002011-07-22T23:26:29.124-07:00Meltdowns and due dates...This has been a difficult and exhausting week. <div><br /></div><div>It started with a frustratingly slow referral from my OB for physical therapy. I have been experiencing increasingly bad back, hip, and leg pain that has decreased my mobility and caused bouts of insomnia. The spasms are so intense I often wake up in the middle of the night and hunch over the toilet due to nausea caused by the pain. Walking, sitting, and lying down are all pretty excruciating most of the time. Despite my frequent complaints and requests my otherwise competent OB is apparently unfamiliar with how to make a referral to an in-network physical therapist covered by my HMO. Three weeks and 4o phone calls later I finally have my first appointment scheduled...in 10 days. </div><div><br /></div><div>In addition, we received two of what I assume will be many dreaded letters from our HMO reporting "the requested service has been denied". Although these letters ended up being a misunderstanding due to our surgeon having two listings they still caused a series of nightmare scenarios in my head that all ended with Tony and I homeless and destitute due to medical bills and expenses not covered by our insurance. I am so grateful for my mother who happens to be a manager in my healthcare network. She picked up the phone or sent off emails countless times this week to get to the bottom of the letters and failed referrals. I don't know what I would do without her. </div><div><br /></div><div>We had our appointment yesterday with the OB. I was looking forward to firming up delivery plans and scheduling my last day of work. With all of the stress facing us and all of the physical pain I have been in it has been difficult getting up and going to work every day. My job requires a great deal of empathetic nurturing and can be physically demanding, especially during the summer. I have really had a hard time keeping up with my responsibilities and being emotionally available to my clients and their families. It didn't seem like a completely off the wall time to bring up starting my leave on disability. </div><div><br /></div><div>Apparently, I was way out of line. Despite being told by the neonatologist last week that I should expect to be induced around 36 weeks (3 short weeks away), I apparently cannot start my disability leave a day before the 36 week mark. My doctor even went so far as to say I was jeopardizing her medical license to even be asking. She also informed me that she opted to not take her leave at all when she was pregnant and "worked right up till the end.". Thanks for sharing! She finally agreed that I fall into a high risk pregnancy category and could be delivered at 39 weeks, allowing her to start my leave at 35 weeks (approximately August 5th). She also reported that the likelihood of them inducing me at 36 weeks was very low due to the risks it presents to the baby. </div><div><br /></div><div>So...imagine our confusion today at the Heart Center when the cardiologist told us not only should we expect to deliver at 36 weeks but that she is recommending they don't even try to induce me and just schedule a C-Section. Again, this afternoon was filled with frustrations. The technician was very sweet but little Brynn refused to get into a good position (she only wanted to show off the side of her heart that functions perfectly) and as a result it took them 90 minutes to try and get decent images of the duct (I am very very sore). Finally, the tech gave up and just went to get the doctor. </div><div><br /></div><div>We were hoping for the same sweet doctor who has followed us the last three times and were disappointed to come face to face with the cardiologist we call Dr. Gloom and Doom. Her bedside manner leaves something to be desired to say the least. She informed us that the duct is "progressively restricting" and that she feels this will cause additional complications and health risks at the time of delivery. For this reason she doesn't feel it is safe to induce me since I could still take hours or even days to deliver and she believes the medical team needs to be prepared and present at the moment of birth. She requested that we come back next week for an additional echo and that we ONLY BE SEEN BY HER for the remainder of our echos. </div><div><br /></div><div>I told her the OB's concerns about delivering the baby early. She said she will call the OB with the echo's findings. I will let them duke it out. I contacted the OB by email as well to inform her, and I emailed the cardiologist Tony and I like and feel most comfortable with asking her to review the scan and give us her medical opinion. </div><div><br /></div><div>Like I said, it has been a exhausting and frustrating week. Luckily, I am so blessed to have such a wonderful and supportive husband. And we are so lucky to have such incredible friends and family who keep our spirits high with their hope and prayers. </div><div><br /></div><div>So it looks like we might get to finally meet our little Brynn in as little as 3 weeks. It certainly seems like she cannot wait to get here! Our goal six weeks ago was to make it to 36 weeks (which they told us would probably not happen) so I am grateful and prepared to deliver her then if that is what they tell me is best. Please pray that no matter how Brynn arrives she will be given the best care and the best chance possible. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-21900004895755013512011-07-20T17:38:00.000-07:002011-07-20T19:23:28.399-07:00I will never get sick of hearts. :)These last two weeks have been a busy time for myself and Tony. We got a welcomed break from doctors appointments but our planning and preparing for Brynn's arrival has certainly picked up!<div><br /></div><div>Last Tuesday Tony and I met with the cardiothoracic surgeon who will operate on Brynn's heart and the neonatologist that will care for Brynn right after she is born. The night before our appointments we sat together anxiously reviewing our list of questions. We worried that we wouldn't like him or that we wouldn't be able to trust his abilities. That morning the anxiety only increased. As we sat in the Falk Cardiac Research Facility we both had the realization that this man literally holds our daughter's life in his hands. What if we didn't ask the right questions? What if he couldn't provide the answers we were looking for? Both Tony and I had such a sense of wanting to be as prepared and as informed as we possibly could be for our daughter. It occurred to me that this was so important; our parents should be there with us. But just as quickly I realized: we are the parents now! </div><div><br /></div><div>I was embarrassed by my damp handshake until I realized that one of the leading cardiothoracic surgeons in the world probably doesn't shake many dry hands. :) Luckily, Tony and I felt very at ease in his presence. He reviewed each surgery in detail with a model of the heart. Most of it was information we had heard before but it felt totally different coming from the man who would actually perform the surgery. He gave us a lot of helpful information we hadn't known before too. He informed us that Brynn should never have to be put on a heart/lung machine during any of the surgeries, since all of the operating will be done on the outside of her heart. The surgeon also told us that the first surgery should be the simplest to perform (they insert a tiny piece of plastic (shunt) into her PDA (duct)). However, the period following the surgery will be the most tenuous for her. Her whole circulatory system depends on that little piece of plastic and anything from getting sick, to an infection or pneumonia could be life threatening. </div><div><br /></div><div>The good news is that four months later the second surgery will be performed and Brynn's health and energy levels should increase greatly! He told us that a program has been started through the hospital that will help us monitor Brynn's health and heart function between her surgeries (we will of course be seen regularly by her cardiologist and pediatrician as well) and that since this program has started they have not lost a baby in between surgeries. </div><div><br /></div><div>In addition, he told us that tricuspid and pulmonary atresia (on the right side of the heart) is more rare than the valve atresia that effects the left side of the heart, but it is the better of the two to have. Basically, Brynn has the side that is the stronger pumper. Among other things, this means that I might actually be able to breast feed! Only 30% of HRHS babies go home from the hospital with feeding problems since they generally have the strength to feed normally and can gain back their reflexes (as opposed to HLHS babies where close to 70% need feeding tubes). He also informed us that our initial hospital stay should be roughly 2-3 weeks, much shorter than the 6 weeks or so I had been anticipating. </div><div><br /></div><div>The scariest thing he told us was again about that darn little duct. He said in his 25 years as a surgeon he has never seen one close before a baby is born but that doesn't mean it isn't possible. If it does close we are looking at a crash C-section followed by immediate open heart surgery (think OR table in the same room I deliver in) to open the valve and save Brynn's life. </div><div><br /></div><div>The neonatologist was also very helpful and informative. She gave us a tour of the NICU, where Brynn will be brought immediately after she is born to be stabilized and monitored before her first surgery (she will recover in the cardiac intensive care unit). She took us through step by step what to expect, who will be in the room, and how to prepare for the delivery. She told us that most likely they will induce me around 36 weeks. If the duct continues to get smaller the risks are just too great to wait and let me go into labor naturally. At 36 weeks it will be safe enough to deliver her without a huge risk that her lungs wont be developed enough. This will also allow the OB, neonatologist, cardiologist, and surgeon to coordinate and prepare for the delivery. So we might actually get to pick our due date! </div><div><br /></div><div>Last week, we also got another huge step closer to preparing for Brynn's arrival...we had her baby shower! My mother in law and her good friend Jody gave us the most beautiful shower I have ever been to. Every detail was perfect from the little homemade tea sandwiches to the shower games to the beautiful decorations. We were blown away. I was worried that people wouldn't feel comfortable talking about Brynn's heart or acknowledging the difficult health problems she is facing. But from the moment we got there women gave us their well wishes and told us about their prayers for Brynn. I was especially blown away by my mother in law's co-workers, many of whom I have never met. I was so touched by their words of hope and encouragement. The day was a perfect balance of celebration and supportiveness. </div><div><br /></div><div>Everyones generosity was incredible. People drove hours to be there, and my sister even flew in from NYC for the weekend just to attend. It meant so much to me to have her there. My friend Amy, Aunt Martie, and Aunt Jeanie made Brynn beautiful blankets and quilts I can't wait to wrap her up in. Jody gave me a beautiful heart necklace with Brynn's name engraved on it. And the clothes! Clothes, clothes, and more clothes! Brynn will be the best dressed baby on the planet! I cannot wait to put her in every little outfit. It will be a day I will cherish forever. </div><div><br /></div><div>We go back to the OB and heart center this week so I should have more updates soon! Thank you to everyone for all of your support, prayers, baby gifts, and positive thoughts. Tony, Brynn, and I have never felt more loved or cared for. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0tag:blogger.com,1999:blog-5047962304916572148.post-8542600059360567372011-07-09T18:21:00.000-07:002011-07-09T19:08:59.717-07:00Two more weeks!Friday we received some welcome news from the OB and the Heart Center: The duct hasn't changed in size since last week. Both the OB and the Heart Center reported that Brynn's heart function looks good and she continues to get bigger every week.<div><br /></div><div>All of my blood work came back normal and my weight gain is steady (measuring exactly 30 centimeters at 30 weeks). The OB told us that they don't believe a closed duct will have a huge impact on Brynn's oxygen supply or heart function while she is in utero because she gets her oxygen supply from me. Physiologically, very little blood is currently being pumped through the duct at this time anyway, and that it closing would not change that. The problem would arise after she is born and no oxygenated blood is being pumped through her body due to her heart malformation. It will be critical to reopen the duct as quickly as possible to prevent brain and organ damage. They will due this by administering prostaglandins immediately after birth (something they would do anyway since the duct needs to remain open in HRHS babies). She also explained the difference between the baby being "in distress" (super emergency) vs. "compromised" (critical but not necessarily life threatening). Unfortunately, there is no real way for me to tell if either situation is occurring unless I am hooked up to a monitor. For that reason she encouraged me to keep track of all fetal movement and to come in immediately if I feel like Brynn isn't moving as much or as often. I'm trying not to make myself crazy keeping track of this. Exp: I haven't felt a kick in the last 20 minutes. Should I call the doctor? Should I change positions? Is she just sleeping? You get the idea. </div><div><br /></div><div>The Heart Center visit was also very promising. We had a really sweet (and gentle!) technician and Brynn was in the perfect position for good views of the heart. She was very fast and gave us a some views of the rest of the baby (she kind of looked like a human pretzel all curled up in there). We got the same doctor we've seen almost every time and she gave us the green light to come back in two weeks instead of one. All in all, we spent less than 3 hours at the doctors office on Friday, which is sort of a record for us lately. We go back to Stanford on Tuesday for our consult with the surgeon and the neonatologist. </div><div><br /></div><div>I am feeling much less panicked about an early arrival and am relieved that I will actually get to attend my baby shower, do some more nesting, and get a chance to say goodbye to my clients and their families. Despite the good news I am still feeling kind of blue. This emotional roller coaster of disappointment and hope is hard to keep up with. I am trying to practice emotional and mental flexibility so I don't get too attached to any one idea of how things are going to be but I still feel all over the place. </div><div><br /></div><div>I have really been trying to cultivate peace in my heart about our situation. Tony and I made a choice to have this baby, knowing that the odds and chances of her having a long an healthy life are pretty slim. I am grateful for every day that she remains inside of me, for every kick, every hiccup, every flutter. And I know that I will be grateful for every precious moment we have with her after she is born. There is a lot of uncertainty in our near future but I am trying to remember how blessed we are to have been given this little life, given our supportive friends and family, and given the amazing gift of love and devotion to one another. Please continue to pray for Brynn and for our family that we have the strength and the faith to make it through whatever lies ahead. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com1tag:blogger.com,1999:blog-5047962304916572148.post-54435489674409850982011-07-01T21:53:00.000-07:002011-07-01T22:50:56.994-07:00Waiting is the name of the game...Today seemed to set a precedent for what our lives will be like over the next few weeks...waiting.<div><br /></div><div>We started the morning with my overdue glucose test which was surprisingly not as bad as I was anticipating. The orange stuff was gross and I felt pretty nauseous and headachy for the hour we had to wait to get my blood drawn but the whole thing went by quickly. Lately, I have really been trying to get over my whole needle and shot phobia. I think about all the needle pokes and tests my daughter will need and I know I cannot set a bad example or be a wimp when it comes to my own health. The stick really wasn't that bad and they only took two vials this time (last time it was eight). </div><div><br /></div><div>Following the test we drove up to Stanford for our echocardiogram. More waiting. The hospital was busier than I had ever seen it. Kids being rolled around in wheelchairs with little bald heads and feeding tubes. Mother's being wheeled out with tiny babies. Toddlers bouncing off the walls with impatience. We waited almost two hours before being seen. </div><div><br /></div><div>The wait gave us time to see observe an interesting and touching scene in the waiting room of the heart center. Two teenagers sat with their perspective parents, both waiting for the same test to measure their heart function. The teenage boy sat sleeping with legs propped up and his mouth hanging open. His mother talked to the nurse about his upcoming transplant. The girl sat across the room with her father (she had apparently requested that her mother not be allowed in). She began crying and arguing about having to take the test and feeling like she has no control of her own body. Her father began pleading with her to calm down and allow her mother to join them. Eventually, the boy woke up and walked over to them to let the girl know that the test is really not that big a deal and not to worry. Tony and I were really touched by how sweet he was and how reassuring he tried to be. It was at that moment I had a glimpse into our possible future. </div><div><br /></div><div>As most people know I have made it very clear for many years that I did NOT want boys. I have been warned of how difficult and moody teenage girls can be but I have always thought that was a good tradeoff to rough and tumble little boys. Today's observation gave me another perspective of how reasonable and easygoing teenage boys can be and how chronic conditions can affect boys and girls differently. It seems like there will be different kinds of challenges all along the way. I hope that no matter how Brynn handles her health challenges we will be lucky enough to be sitting in that waiting room with her as a teenager (even if she won't let me be there with her). :)</div><div><br /></div><div>We finally made it back for our scan with Olga again. This time it was much shorter, only about 25 minutes and not nearly as painful. I'm not sure how good the quality of the photos were but they did show that the duct has begun to close. The doctor reported that right now it does not seem to be affecting Brynn's heart function and she is tolerating the small duct well. However, they are not able to predict how she will respond if it closes completely or how long it could take to close up. So, I will now be monitored weekly by the Heart Center in addition to our OB appointments. If Brynn appears to be in distress, they will deliver her immediately. Ideally, we make it to 39 weeks or at least 36 weeks. We are 30 weeks on Sunday. I'm not sure how realistic it is that we will make it that much longer considering the duct has become noticeably smaller in two weeks. All we can do is hope and pray. The doctor tried to assure us that our surgeon has performed many open heart surgeries on premature babies but we also know that her lung and brain development at this stage would contribute to further complications. We of course had a million questions and always leave feeling like our five minute consults aren't nearly enough time to process or request adequate information.</div><div><br /></div><div>The doctor did send us upstairs to the perinatal diagnostic center to meet with the coordinator who will arrange our consult with the surgeon that will perform Brynn's surgery. Following our consult we will get a tour of the labor and delivery unit and a rundown of everything that will happen after Brynn is born. They will also perform some additional scans to get a more accurate idea of how much she weighs and how everything else is looking. They will also perform the stress tests here to see how we respond. </div><div><br /></div><div>We are so hoping that she can hold on for as long as possible. I feel so unprepared for her arrival. We haven't taken any of our childbirth, infant care, or CPR classes yet. We have very few of the things we will need to care for her at home. She doesn't have a pediatrician yet. We haven't even had our baby shower yet! Not to mention I don't know how this affects my role at work. I guess I really need to start terminating and transitioning my clients if I want to give them the chance for therapeutic closure. To know that Brynn could be born anytime between now and September makes me feel out of control and helpless. But...all we can do is wait. </div><div><br /></div><div>Please continue to pray for Brynn that her duct stays open for as long as possible. And please pray that her mommy can get her act together and start getting prepared for Brynn's possible early arrival. We appreciate everyones support and understanding as we wait out these next few weeks. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com2tag:blogger.com,1999:blog-5047962304916572148.post-55010796559744368072011-06-17T16:08:00.000-07:002011-06-17T16:35:08.271-07:00What's black and blue and sore all over......my tummy! Thats right, today's cardiac ultrasound left me pretty bruised thanks to Olga the technician and her scary wand. Actually, she was very nice and explained that as Brynn gets bigger it becomes more difficult to get good images of her heart. And she has been getting bigger! I put on 4lbs last week (although I think that was more from going on vacation with a personal chef)! <div><br /></div><div>We saw the OB yesterday who measured my at 28 centimeters (normal) and clocked Brynn's heart rate at 14o (perfect). Today's cardiac appointment went very well. Tony's parents were kind enough to accompany us in spite of warnings that these appointments can be long and difficult. Olga gave them a brief view of Brynn's face and body. She had one hand up over her eyes drama queen style. :) They weren't able to get great pictures this time but the doctor reported that the ductus has not changed size! It is still small but does not seem to be affecting her growth or putting her in any distress. The doctor reported that due to the fact that Brynn's whole circulatory system is different from other babies there is no way to tell if her brain development has been affected at all until she is born. Many of the babies are fine, however, some do experience delays. </div><div><br /></div><div>The doctor said they will continue to monitor me every two weeks, alternating with my OB so I will be seen at least once a week for the rest of the pregnancy. I am really relieved that we won't have to wait a long time between visits to get confirmation that Brynn is doing well. </div><div><br /></div><div>It's hard knowing that they could possibly deliver me any time between now and September but we are hopeful that Brynn will continue to grow and that the ductus will continue to stay open. Please continue to keep us in your prayers...I really think they are working! I know my own faith is strengthened every time we get positive news. Thank you for everyones support through this whole process. It means so much to us. </div>Erin Moranhttp://www.blogger.com/profile/03075872845404652358noreply@blogger.com0