Hello again everyone! It’s been a while since our last post, mostly because everything has been going well and also because, wow, babies take a lot of time. What happened to “Babies sleep all the time”? Even when she is sleeping, there is still so much to do to keep the rest of our lives in tact. Brad has been busy keeping the house and the yard taken care of along with taking care of his girls!!! What an amazing man he is. Natalie and I are very blessed to have such a hard working and loving man in our lives. Brad is back to work now and I am dreading the thought of leaving my baby with someone else during the day. It’s so hard to think about being away from here all day long!
We have had several small appointments in Bismarck and made the trip back to Minneapolis once since our last post. Natalie is doing so well. You couldn’t look at her and tell that she has been through so much already. She now weighs almost 10 pounds and has begun to get those chubby little legs that babies get. They are so cute and I love pinching them along with her chubby little checks! She is such a sweet little girl. She loves mornings, outside and her swing!
Our last visit to Minneapolis left us with the next of many hurdles that we will face on this journey. We meet with the doctor about Natalie’s progress and were forced back into reality. I think both Brad and I thought that if she was doing well with the hybrid surgery, she would simply have to have the bands taken off her lungs and we would move forward with life and a happy little girl. We soon learned that was not the case and that was just one step of the process. We still need to see growth in the left ventricle and hope that the arterial septum does not close. They are continuing to watch that every week. After the echo, Dr. K started to talk about next steps and that is where things get more complicated. Because Natalie is doing so well and her left ventricle is healthy, just small, they have been researching ways to allow Natalie to keep both ventricles instead of going to the single ventricle pathway. It sounds like she has been the talk of the town lately. They have been meeting with Boston Children’s Hospital to discuss ways to move forward with 2 ventricles if possible. We will be meeting the doctors next week to talk about a procedure that has not been done before, but would possibly allow Natalie to have a 2 ventricle heart and avoid a heart transplant in the next 15-20 years. This procedure has not been done before but with Natalie’s unique anatomy they are hopeful that they would be able to create a hole between the left and right ventricles. Later they would use part of the right ventricle to increase the size of the left. I know that is hard to understand and I wish I had a picture to share, but you will have to use your imagination. We will know more next week about what is possible. So we have to be praying about what road to take. A single ventricle means 3 surgeries and a heart transplant at some point. The other procedure means uncharted territories and a procedure that has never been done before, but a 2 ventricle heart for Natalie. What a special little girl we have. Dr.K said that if this procedure works, Natalie could write a new chapter for Dr.s and future kids born with hypo plastic left heart.
Please be praying for Brad and I to have the wisdom to make the best decision for Natalie and for us to listen to Gods voice. This will be a huge decision for us about the future for Natalie.