Dec 22, 2018 Latest post:
May 22, 2020
In August of 2018 we went in for a routine ultrasound about 20 weeks into pregnancy. That day we learned our baby had something wrong with his heart, it wasn’t developing the way a normal heart should. The left side of the heart was underdeveloped. We also learned that UofM in Ann Arbor has a children’s hospital that specializes in treating babies with congenital heart defects or “heart babies”. From that point on, we went to C.S. Mott Children’s Hospital in Ann Arbor for everything regarding the pregnancy.
Our first appointment at Mott we had a fetal echocardiogram and then had a consultation with a pediatric cardiologist. She explained our baby had a heart defect known as Hypoplastic Left Heart Syndrome (HLHS). HLHS is a congenital heart defect in which the left ventricle is under developed. The ventricles are the pumping chambers of the heart, so in effect Isaiah would only have a single heart pumping all the blood to his body. In normal hearts, there are 2 pumping chambers, a left & right ventricle that simultaneously pump blood to the body and to the lungs.
The cardiologist explained Isaiah would need a series of surgeries to re-construct his heart so blood could adequately get to his lungs and body with only a single ventricle pumping. In Isaiah's case, his left ventricle was actually larger than most HLHS patients, but it was still lacking any meaningful pumping function. A couple weeks later, we had a consultation with a pediatric heart surgeon to understand the surgeries in more detail.
The surgeon explained Isaiah would need to have his first surgery a few days after birth and then a 2nd surgery at about 6 months, and finally his last surgery after 2 years old. He drew detailed pictures on a white board and explained exactly what he would do in each of the 3 surgeries. He made us feel as comfortable as we could have and we just felt so blessed to have this amazing hospital and team of doctors only an hour away from our house.
Isaiah was born via c-section on December 19th weighing a healthy 8lb 9oz. The following day we were fortunate to have a beautiful baptism in Isaiah's room thanks to the staff at C.S. Mott and especially Fr. Jason Brooks LC who performed Isaiah's baptism.
On December 21st just 2 days after birth, Isaiah had his first open heart surgery, called the Norwood procedure. The first surgery we were told is the most complex and involves connecting Isaiah's right ventricle to his pulmonary artery by surgically attaching a shunt between the two. They also create a neo-Aorta or new Aorta by merging his pulmonary artery with his original Aorta. The surgery lasted about 4 hours and went extremely well, but in recovery there were some unexpected twists.
After a couple days on the vent, he was finally extubated. However, over the next few days Isaiah's oxygen and other sats began to drop for no apparent reason. The cardiology team ran several tests and discovered the end of the shunt or tube was rubbing against the ventricle wall, preventing blood flow through the shunt. We were deflated to hear Isaiah would need to go back into the OR for another open heart surgery to modify the shunt. He was less than 10 days old.
The surgeon successfully removed part of the shunt that was against the ventricle wall. However, his recovery again had a few hurdles after being extubated. Isaiah suffered a couple seizures in recovery, he was then put on two seizure medications. The medications were loading doses and they depressed his system too much causing his sats to completely drop out, they had to reintubate him to bring up his oxygen. Our poor little guy was only 10 days old and had been through 2 open heart surgeries and intubation 3 different times. We were so worried about him, but the doctors reassured us by telling us how resilient most of these babies are and that the seizures are different from adult seizures. Sure enough he improved and was extubated again a few days later. He was in the hospital a total of 21 days and finally was able to come home.
On May 13th 2019, we took Isaiah back to CS Mott for the 2nd phase of surgeries, the Hemi-Fontan. This would actually be Isaiah's third open heart surgery. The actual surgery went well, during the hemi surgery they create a wall where blue blood from the SVC would normal flow into the right ventricle. This along with another modification re-routes blood flow from the SVC directly into the pulmonary artery which then goes to the left/right lungs, essentially the docs are lightening the workload of Isaiah's right heart by dumping return blood directly into the lungs. Isaiah's lungs didn't seem to like all this new blood flow and his oxygen wasn't well enough to extubate him the day of his surgery or the day after. In fact, he spent a total of 8 days on the breathing tube and in a heavily sedated state. This was an extremely nerve racking time as we were originally told most kids are at home after a week. Our faith in the Lord and support from family got us and Isaiah through this difficult period.
Ultimately his lungs needed time to relax and handle all the new blood flow returning from the upper body. Once he was finally extubated, he was still on high-flow oxygen through a nasal cannula, but his numbers stabilized and he did much better. We thought the worst was over once Isaiah was moved to his own room, but he then developed a blood clot in his left leg, it literally turned bright blue. This was also the leg that had an IV line, due to the clot they had to remove the line, but the Docs were insisting he still needed the line. They tried poking him in so many places to get an IV, but each time were unsuccessful. Finally, they decided to leave out the IV as he was only getting the dex medication through this line. They were able to give him other medications in lieu of the dex. Over the 2nd week of his recovery they were able to wean down his oxygen support and move him to the step down floor and he was finally able to come home the afternoon of June 1st. His total stay for the Hemi-Fontan was about 20 days, which was almost identical to his 21 day stay for the Norwood procedure.
We were finally able to bring our little guy home that's all that matters. Now it is July 17th 2019 and he is doing great. Isaiah got his feeding tube out on June 20th and has not needed it since then. Once July came, his body started to make the connection that eating made his belly full. He now loves to eat, he's taking about 4-5 oz. with each bottle and loves to eat baby food/oatmeal. Isaiah is on 4 medications total including a baby aspirin, but takes them all orally with no problem. He's been through so much in his short 7 months of life, but things are finally starting to get somewhat normal and we're all really enjoying having him at home, he's such a precious little gift and blessing in our life.