We had an interesting and encouraging conversation with the surgeon. They are going to perform surgery tomorrow at 1:00 pm, and they have decided not to go with the Norwood surgery. They said Natalie’s heart is in too well developed to shut down the left side completely. Instead, they will be performing a hybrid surgery that will allow her left side to remain functional. The recovery time will be much less, and we could possibly be home next week sometime.
They will continue to monitor Natalie in Bismarck, and she will be getting an echo done every 10 days in order to make sure that the heart is functioning properly. If all goes well, the left side will develop, and her heart will be very similar to a normal heart sometime down the road. We are very thankful.
Sorry we haven’t posted in a while. We just haven’t had a lot of new information, we’ve been in kind of a holding pattern. Natalie is doing okay right now, the fluid in her body has gone down and she’s looking and feeling better. Her left ventricle couldn’t quite keep up, so they have her back on meds to keep her right side doing most of the work. They are tentatively scheduling her for surgery on Thursday morning, but that could change.
She is quite unique in that her heart is almost completely normal other than her small left ventricle. Most patients like her have small aortas and other parts, but hers are all normal. So, they really would like to find a way to perform a surgery that will allow her to still use both ventricles rather than bypassing the left altogether. The doctors keep telling us that she is really making them think.The surgeon has sent all of her files over to the University of Boston to get an opinion from them as well since they deal with a higher volume of patients of this type.
So, the plan is to do a cardiac MRI tomorrow. After they analyze the results from that, then they will sit down with us and decide which route to take. We’re praying for a surgery which will allow Natalie to use both ventricles, as this is more ideal for her in the long term. However, if they don’t feel that will be successful, then they will proceed with the surgery that they had been planning initially. Then they’ll do the first phase on Thursday, the second phase toward the end of this year, and the third phase in 1-2 years.
This is Heidi! I do exist still! What a wild ride we have had and it’s been hard to find the time to communicate to you all. Each time I think that I have time to sit and call or email, the time just gets away from me. Between spending time with Natalie and “doing my chores” the time just disappears. I want to say thank you to everyone who has been praying for us and sending positive thoughts and love our way. We can truly say that through this whole experience we have felt your love in so many ways. We are so blessed to have such great friends and family. Gods love and the love of our family and friends has helped us to stay strong and focused on what is best for Natalie.
Today has been a pretty long day waiting for rounds at 4:30 to get any updates from the doctors. Over the past days we have watched Natalie grow and get stronger. After removing the PGE that was keeping the ductis open we were very hopeful that there was the chance of not having to go through the surgery. She was doing so well and was very calm and content sleeping and eating like all newborns do. The last few days we have noticed a lot of change in how she has been reacting to being able to eat, and if she would be able to thrive without medications. First they started her on a medication to help her left ventricle pump better and move the blood out to her body. The left ventricle has been functioning but not able to pump the volume and relieve the pressures in the right ventricle which has caused her to develop fluid on her lungs. With the fluid build up she has not been able to breath as well and her breathing patterns and saturation levels have dropped.
Well, between paragraphs Dr. St Louis came back to the room. After viewing her echo from this morning they have decided to restart the PGE, so that means that her heart is not able to regulate the pressures and that they will have to do some sort of surgical intervention. We will have to wait for the ductis to open again and then we will talk about what the doctors will do and when. We won’t know more about when and what until later this weekend or possibly on Monday. Keep the prayers coming! Brad and I are very sad that she will go through this, but we know in the long term it will be what is best for Natalie and that God is watching over her and knows his plan for her life! We are so blessed to have such a beautiful little girl!
We got somewhat discouraging news this morning. Apparently, Natalie’s heart isn’t responding quite as well as we’d hoped, and she is developing fluid in her lungs. They have used medication to counteract this, but it looks like surgical intervention may be necessary. We won’t know much more than that until we meet with the medical team this afternoon. The surgery won’t be as intense as the three stage surgery we had expected when she was born, so we are thankful for that. We’ll update when we know a little more.
I got to feed Natalie her first bottle today at 6:00, and she gobbled it down after a short time of figuring out how to do it. Heidi is feeding her second bottle right now, and we’ll see tomorrow how well she’s responding to the normal diet. We’re praying that everything keeps going as well as it has been. I’m posting a picture of her drinking her first bottle.
We really need to thank a lot of people for all they have done. We’ll do this in more detail tomorrow. Foremost, we need to thank God for all he has done in our daughter. The way her heart has recovered is nothing short of a miracle.