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!
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.
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.
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.
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.
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!
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.
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.
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.
No comments:
Post a Comment