I’ve always loved the Veggies Tales and one of my favorites has always been The Pirates that Don’t Do Anything! I can’t tell you how many times Brad and I have laughed about the video and joked about how we “have never been to Boston in the fall”. UNTIL NOW!!!
After speaking with the doctors at the Boston Children’s Hospital we have decided to take Natalie there to continue her journey. We look at her everyday and think, Wow! She is doing so well and looks so healthy, but we know that we are still just at the beginning of this long journey.
Our goal has always been to make decisions that will give Natalie a long and healthy life and with her anatomy being so close to normal we wanted to give her the best chance to have two ventricles. When we first sat down with Dr. St. Louis in Minneapolis that was our goal; two ventricles and avoid a possible heart transplant later in life. Some of the cardiologists felt like we should go with the single ventricle repair because they didn’t feel that the left ventricle would grow. I think they felt is was pointless and it would prolong the inevitable. Some of them thought the hybrid would give her a chance. We didn’t anticipate that that decision would lead us to where we are now. Had we not chosen to go with the hybrid we would never have had this chance to go to Boston.
Boston Children’s Hospital has been following and reviewing Natalie’s case since the beginning. They offered a series of surgeries that will give her a chance to have 2 ventricles and we will be starting that process soon. After our last check up here in Bismarck Natalie’s ASD is getting smaller and closing. The ASD helps to keep the pressure down in her left ventricle. As it closes, which is a natural process for most babies, her pressure rises in her left ventricle. So we need to act soon.
The first step will be to create the septum (hole) in the floor of her left ventricle into her right one. She has some unique anatomy. The right ventricle grew a “tale” that wraps around under the left ventricle. (It’s so strange to think about creating a hole instead of fixing one.) The doctors feel this will help to regulate the pressure in the left ventricle like the ASD was doing. Good news is that they think it can be done through her femoral artery in the cath lab instead of having to open her chest again. Hopefully all will go well and they can accomplish what they need to without another open heart surgery at this time. We are not sure when the next phase will happen. They say the best chance to recruit muscle tissue, like the heart, is when they are infants. I am sure the next step will be done as soon as they feel she is strong enough and ready for the next step, and if they see the results that they are hoping for.
With everything there is risk. The single ventricle route is risking to. Unfortunately, the next few years will involve a lot of risk and we pray that Natalie will do well. The doctors are very optimistic that this will be successful and give Natalie a heart that is as close to normal as possible with 2 ventricles. We pray that God will watch over Natalie and keep her as strong and healthy as she looks today. Everyday she makes me smile. I noticed today that my cheeks were hurting from smiling at her so much. I truly underestimated the love that I would have for her. I always knew I would have a strong bond with her, but I never imagined it would feel like this. I will have to upload some pictures so that you can all see how chubby her cheeks are now. She is so beautiful! We love her so much!
We pray for her left ventricle to grow and for guidance and wisdom to make the best decisions for Natalie. We pray to be able to hear God voice and remember the grace that he has shown to all of his children.