Yesterday we had our second appt. with the cardiologist at All Childrens. First we had an hour long echo, the sonographer and coordinator, Aleta, is phenomenal. She took her time and explained everything she was looking at to Scott & I and even gave us a few shots of his cute little face! :) Right after the echo we met with Dr. Nardell and she basically gave us an HLHS 101 class. She had several pictures for us and explained exactly why Evan’s heart can’t function the way it is, and then went thru the basics of each of the three surgeries. She also confirmed the only anatomy problem with the heart is the left ventricle, and closed mitral valve (basically no other heart complications except hypoplastic left heart). Scott & I both really like her; she took her time and answered all of the questions we had. So, on to the information we got yesterday.. Evan’s cardiac profile right now is a 10 out of 10. Basically his heart is working great right now (that, of course, all changes once he’s born). The head of pediatric surgery at All Children’s, Dr. Q, will be performing Evan’s surgery 5-7 days or so after he’s born. We will meet with him a few weeks before the baby’s born.. The first surgery is called the Norwood. It’s the riskiest surgery but Dr. Nardell said the survival rate at All Childrens is 85-90%!! The purpose of the surgery is to give the heart a more permanent solution to mimicking the blood circulation the way it was in the womb. This done through a BT shunt, which will allow blood to go from the aortic side to the lungs. The main part of the surgery is changing the Pulmonary Artery to be part of the small aorta. This has to be done because Evan’s is so small it’s not effective. This procedure will still require the right ventricle to function for itself and the left ventricle.. Recovery time in the hospital will be 4-6 weeks. Luckily, All Children’s recovery rooms are big enough to accommodate parents too so Scott & I can stay with him at all times. He won’t be able to come home on oxygen, but there’s a possibility of him coming home with a feeding tube through his stomach if there’s a feeding issue (praying he has no problems!). The “riskiest” time for Evan will be between the first and second surgery. The second surgery will be done closer to when he’s 6 months old. It’s called the Glen procedure. During the Glen, they will remove the BT shunt and make a bigger connection from the Superior Vena Cava (SVC) to the pulmonary artery. Recovery time is 1-2 weeks and the purpose of the surgery is to let more blood flow to the upper body and replace the BT shunt (it doesn’t grow with the baby so it will be too small to keep for forever). Evan will be fine (if everything goes well) and can start a more “normal” baby routine after the second surgery and until he has the 3rd surgery. The 3rd surgery is called the Fontan and will be done between 2-3 years old. The purpose of this surgery is to connect the IVC to the pulmonary artery to allow for more blood flow to the lower extremities. The right ventricle will always pump blood for both sides, but these procedures relieve the work load for the right ventricle. Make sense? Probably not.. lol I took notes while we were talking and Dr. Nardell gave us the diagrams which helps a lot to understand what’s going to happen. Evan won’t be able to eat before the first surgery or right after surgery, poor little guy, and then they will start introducing breast milk a little at a time through a feeding tube and gradually move on to a bottle. He may even be able to nurse! :) It’s a lot of information to take in but Scott & I both feel really good about this and we still feel so blessed to be able to give Evan a chance at a normal life, no matter what sacrifices we have to make.
So that brings me to our next bit of “big” news. We talked a lot about it and have decided I am going to quit my job and stay home full time with Evan. Now if you know me, you know that’s a HUGE deal. I love my career and a few months ago I got promoted and it’s going to be so hard to leave it, but we are willing to do whatever we have to in order to be there for Evan. We’ll have to take the baby to Dr. appts weekly, biweekly, then monthly for a while and it would be difficult to try and rearrange schedules to make sure one of us is there with him. It will be a lot less stressful on both of us knowing I don’t have to worry about taking time off of work. We both will also feel 100x more comfortable knowing I’m there with him. I don’t think we would ever be able to get over it if something extreme happened and neither of us was there with our little man. Hopefully we won’t be as stressed when Evan comes home :) Yes, we will still be staying in our house and Elli will still be going to Pre-K. Scott has already given up his big truck and traded it in for a smaller, more fuel efficient truck. (Evan you are blessed to have such an awesome Daddy..) We’ve also decided we will not be drinking alcohol anymore. (not that I’ve been able to in the last 7 months anyway lol) Evan won’t be able to drink/smoke when he gets older and we want to set an example for him. Who knows, maybe Elli will follow our example too when she gets older.
We are now just waiting to hear back from the coordinator to see which OB I will be seeing for the rest of my pregnancy and waiting to be set up with a social worker at All Childrens to help answer questions we have on insurance. As you all know, there’s no way we will be going back to my current OB in Lakeland.. OH I almost forgot, the preliminary results of the amniocentesis came back and everything is normal. Unfortunately, the hospital last week sent the results to my Lakeland OB and they never bothered to call me with the results, go figure!! Our next fetal echo is in 3 weeks back at All Childrens.
Keep on praying for our sweet baby boy. We should know here soon when we will be induced. Once we find out the date and information on how many people can visit, etc. we will let everyone know.