Saturday, February 7, 2015

Two 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.

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.

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). 

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. 

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. 

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. 

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. 

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. 

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! 

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.

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.

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!

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.


Saturday, January 31, 2015

Here we go again!

Hey Everyone!

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.

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.

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.

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.

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.

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. :)

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.

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.

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.

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!

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!

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.

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.

Thank you again to everyone. We will be updating the blog with pictures and her progress as often as possible. 

Saturday, May 5, 2012

A 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.

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.

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.

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??

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!

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!

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.

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.

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.

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.

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.

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.

Tuesday, February 28, 2012

Balance shmalance

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 :)).

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.

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).

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.

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!).

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.

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.

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.

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.

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.

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. :)

Thursday, January 19, 2012

The next chapter

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!

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.

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!

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.

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.

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.

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.

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.

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!

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.

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!

Tuesday, December 20, 2011


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. :)

This 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...

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.