Sam was moved from the CICU back to the NICU today. He’s doing so well, it’s been good news every day.
They have been weaning him off oxygen. He is mostly doing fine on the cannula at 1L and room air, but occasionally still needs a little more support still.
He’s also progressing well with feeds and is getting 4ml of breast milk an hour now and should be going up to 5ml per hour tomorrow.
He had an echocardiogram today to see how things are looking post-surgery. He still has a little narrowing right where the repair was made, which could just be the sutures or it could still be coarctation. Re-coarctation is not uncommon, especially for babies his size. We should know within a few months if any further action is needed on his aorta or not. If there is re-coarctation it would most likely be able to be fixed with a balloon procedure and not require another surgery.
We are also starting to learn more about a second congenital heart defect that Sam was born with. It is not a serious complication and doesn’t require any immediate action, so I haven’t really written about it yet.
The defect is called unicuspid aortic valve. The aortic valve typically has three little flaps that open to allow blood to pass through. Some people are born with only two flaps, or a bicuspid aortic valve. Sam was born with a single flap, which is more rare and called unicuspid aortic valve.
Sam only had a mild stenosis (narrowing) so blood flow is adequate and heart function is totally normal. Generally an aortic valve defect with mild stenosis doesn’t cause any problems until a person reaches adulthood, usually their 40s or 50s and sometimes even later.
His unicuspid aortic valve is not something that would be corrected now, but it is something we will watch closely his entire life. Fortunately this is a common congenital heart defect and is mild enough that it should have no impact on his lifestyle. In fact, many healthy people are living with this condition and don’t even know it.
That’s all for today. Now that we are over the biggest hurdles I expect updates will not be as frequent, but I’ll aim for a couple times a week still. Feel free to reach out to us if there are any questions between updates.