This morning I posted our highlight of our day would be an echo cardiogram for Jayce’s heart. Having completed this appointment and also an evening meeting with a NICU rep, we have more information to share.
Jayce triggered our arrival to the hospital because of his possible heart concerns and restricted growth. Here’s what we found out about his heart:
1): Valve count.
There is an area of your heart that is supposed to have three valves. They function like doors, regulating the flow of blood.
The doctor is about 80% confident Jayce only has two. This is fairly common and in fact, my dad has this exact issue. It will require no surgery after birth. When Jayce is 35 to 40 years old, he will need to investigate installing an artificial valve.
(Also something my dad did. He is doing perfectly well today.)
2) Narrow aorta.
There is a passage in the heart called the aorta. Jayce may have a narrower one than normal. This also runs in my family; both my dad and my brother have it.
It is difficult to see a baby’s aorta clearly in utero, so the doctors are not sure how severe the situation is. Immediately after his birth, Jayce will be given another echo cardiogram. If he takes after Uncle Jonathan, his aorta will be narrow but will not require operation.
If it’s too narrow, cardiologists at Nationwide Children’s Hospital (4 miles down the road) will preform a very common surgery to address the issue once he is stable and has reached the appropriate weight. Reaching the appropriate weight may take a few days depending on how small he is when born.
3) Hulked-up, one-sided heart.
One side of Jayce’s heart is working harder than the other. This could be because of a narrow aorta. His heart is nicely formed, appropriately structured, and doing its job. No intervention is necessarily required; one side is just doing the heavy lifting right now.
So the heart issues amount to nothing abnormal, given my family’s history. Both my brother and dad are strong, active people who work out constantly and have great quality of life. There’s no reason to think Jayce’s heart situation will restrict his future activities any more than it has restricted theirs.
4) Inferior support system.
His heart was not the only thing that brought us here. The doctors are concerned about his size. He’s approximately 38% smaller than his sister. They want to know why.
Jayce’s placenta doesn’t seem to be supporting him as well as Justine’s. Based on Doppler tests, it looks as if the placenta is struggling to get blood to all areas of his body. In self defense, his body is prioritizing blood delivery to major organs such as the brain and lungs at the expense of spending energy on growth.
Despite an inferior support system, at this time Jayce is as happy as his sister. Both are faring well. They regularly pass their heart rate tests with flying colors. They show promising behaviors such as swallowing and practice breaths.
The current plan is to continue an hour of fetal heart-rate monitoring every eight hours. If they pass, we go another eight hours before the next one-hour test. If they don’t, we get monitored for three hours. If they continue to not do well, we evaluate and most likely take them out. They will continue their development in the NICU.
We ended the day with an informational meeting with a nurse practitioner from the NICU floor. Each kid will have a special NICU team waiting for them in the operating room upon delivery. This team will focus on making sure everyone is breathing and functioning while the labor team helps me recover from the c-section.
If the kids are born during 33 weeks (which starts tomorrow), we can expect that they will need some amount of respiratory assistance. How much? How long? Depends on the kid. They also may need some time before they can handle drinking from a bottle. Again, timeline depends on the kid.
The main milestones for a NICU baby are proving they can breathe on their own, regulate their temperature, and intake all nutrition orally. Once this happens, the conversation about bringing them home begins.
It is likely that Justine will be ready to come home before Jayce, especially if his aorta requires surgery. Both kids could find themselves in the NICU for several weeks. It depends on condition at birth, gestational age, and when they reach their milestones.
The answers vary depending on who you ask. My personal opinion, based on all the information we’ve heard, is that I doubt we go longer than two weeks before the kids are here. So far, no one seems to think delivery is imminent provided nothing gets worse. Making it one week (next Friday) will mark the beginning of Week 34. This would be great.
I will be in the hospital until they arrive. Not fun, but quality of life is great so far! Unlike many people on the High Risk OB floor, I am not stuck in bed with high blood pressure or constant fetal heart monitoring. As long as everyone passes their test and I maintain good blood pressure, I can walk around, leave the ward, eat food, do whatever. Pretty fantastic!
Today we enjoyed tons of visitors. It really broke up the monotony of hospital life. We’d like to say a very warm thank you to everyone who has stopped by for a visit, sent snacks, or been in touch via text. Your prayers are deeply appreciated.
We love distraction and playing games, so if you are local, please feel free to reach out once you are done enjoying your Christmas with family. Perhaps we can enjoy a game night in the OB ward!
Tomorrow we have nothing particularly exciting scheduled. We will do another Doppler test (this will be a twice-a-week experience) to look at placenta performance. If things begin to go awry, the Doppler will help catch the problem before things get out of hand.
This weekend, we’ll enjoy a modified Christmas with our families. It’s not the Christmas we wanted, but we are thankful for the time and space to spend with each other even in unorthodox settings!
Wishing you a very Merry Christmas!