Good News!

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.

They weaned her off all of her medication and took out both central lines. Huge steps th-

at finally allowed me to hold her on Wednesday (an amazingly moving and soul satisfying experience to say the least).

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

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.

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).

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.

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.

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.

We keep on trucking...:)

What an amazing rollercoaster we are on! I wish I had the time and energy to post every day.

I was discharged from the hospital on Tuesday afternoon. 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.

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.

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.

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.

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.

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. :-) )

She is here!

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.

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!

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.

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.

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.

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!

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.

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.

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!

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.

Rescheduled 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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

10 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.

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.

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.

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.

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.

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...

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!

Where will Brynn be born?

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.

How long will she be in the hospital?

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).

Will you breast feed?

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.

Can I come visit?

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!). 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.

What can I expect to see at the hospital?

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. 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.

How about when you are home?

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.

What will her surgeries and life be like?

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.

What can I do to help?

A lot!

v 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.

v Prayer: Your prayers and positive thoughts mean a lot to us.

v Read: We will continue to provide updates and information on our blog.