T's heart

Here is a post from Kimi and Rob - please keep them in your thoughts and prayers!

Hi Friends and Family:
Some of you know (and some of you don’t know) the events of yesterday. In a nutshell: A new nurse practitioner, who had never seen T, spent a little more time than usual with him yesterday, because she “didn’t already know him” and wanted to be thorough. She heard a heart murmur yesterday (no one had heard one before) and ordered an echocardiogram to check it out. She also thought he was lethargic and working too hard to breathe, so she had blood drawn. She also put his pulse-ox monitor back on him (he had been off it for at least 1 ½ weeks), and his blood oxygen saturation was in the low 90s while it had been at 99 and 100% when they decided a week ago to take him off of that. The blood draw showed he is a little low on his red blood cell count, which would cause him to be lethargic. The echocardiogram showed three holes in his heart. #1: PDA (Patent Ductus Arteriosus), which is a hole that closes upon birth, but in preemies, it doesn’t always close. #2: PFO (Patent Foramen Ovale) which is one that they aren’t too concerned about. #3: VSD (Ventricle Septum Defect), which is a hole in between the lower two ventricles of the heart, and causes oxygenated blood and nonoxygenated blood to mix. This is the one that they are most concerned about, even though it is “small.” It could cause his heart to work harder, sending oxygenated blood to places it doesn’t need to go, and nonoxygenated blood to places it doesn’t need to go. They stopped T’s oral feedings for one day, to watch him, and I will find out soon whether they have decided to start them back up. The neonatal nurse practitioner (NNP) that we met with last night said that we will meet with a cardiologist every month to see if the holes are closing on their own, and then at one year old he would have surgery if they haven’t closed. The NNP also said that this probably will not delay his coming home much, and that we will just have to watch for lethargy, trouble breathing, and trouble eating – that is, he won’t come home on any monitors. That news, of course, makes me thrilled (sarcasm) because I feel like it puts so much pressure on me to watch him constantly and always be second-guessing myself (is he pasty-white? Is he having trouble breathing? Why is he not eating his full bottle?).

Praise God that T had a new NNP yesterday that heard his heart murmur. Praise God that the holes are all “small.” Please pray that the reason no one heard the heart murmur before is simply because the holes are so small and his heart doesn’t “murmur” all the time. Pray that the alternative is not the case: that the holes are getting worse than they were when he was born.

As for me, I am sad and a bit in shock. I first think about the here and now, and think “ok, they say he is stable and his oxygen saturation has been back up for 8 hours now and he is not struggling to breathe.” But then I immediately go to “will he be able to play outside and keep up with L or will we always be concerned about his heart and him overdoing it?” I know that could be the least of our worries, but I just want my boys to lead a normal life and not be affected by being a preemie.

Also, please note this post is all the events as experienced and heard by me, and may need to be clarified later by Rob.
Oh, and so as not to leave sweet S out of things, they are increasing the number of his oral feeds to 6 per day. He will only be fed by tube twice each 24 hours!
Love to you all,
Kimi

Rob’s Edit: - Not much to add. T is retaining water and is now on a new medication to help remove it and not let fluid gather on his lungs or heart. In truth they are worried about both the VSD and PDA. The PDA is more common but also causes significant issues. (notably that the blood vessels in the lungs have to handle an increased blood flow and pressure, which over time causes them to become diseased) Both the VSD and PDA allow oxygen rich blood to mix with blood going back to the lungs meaning that less oxygen carrying red blood cells are going to the body. This makes his heart work harder and it could become enlarged. Last night they described his heart size as, “OK.” We have not met with the cardiologist yet. When we do I hope to have more info about what to expect in the coming days and weeks. Right now we are watching to see if T will continue to do as well as he has in the first four weeks in the NICU and wait to see if the holes will close on their own.