I just wanted to send you an update as to what is going on with the boys as of this morning (saturday). They have been up and down several times over the past 9 days…each time we think they are beginning to stabilize, something else happens. The doctor told me this morning that he has never in 10 years seen a case present itself like this. We are basically just waiting to see what happens and trying to stay ahead of the symptoms as they arise.
This morning, it looks like Barrett is starting to rebound again. His billi levels were down yesterday morning, and this morning they have doubled. He will have another test run at 2 to see if they are still rising, and most likely he’ll be back in the box this afternoon.
Noah is still in the box and his billi level is coming down, but this morning his crit level dropped drastically (in that case, low is bad). We will be doing a blood transfusion this morning. The good thing is that this is a different kind of blood transfusion than we had been looking at before. This one is not as risky as they are only putting new blood in and are not having to remove his blood at the same time. Basically, the problem is that his red blood cell production is not keeping up with the red blood cell turnover as we fight the billi levels…which is leading to some significant anemia. The blood transfusion should help that issue, and might help the billi issue as well.
Thank you for continuing to pray for the boys and for us. We are really ready for things to settle down a little. The hardest part is not being able to predict what the next few hours will hold, and I think that is frustrating the doctors and NICU staff as well…. they are pretty much experimenting at this point.
We are thankful that both boys seem to still be feeling okay right now. They are eating well and gaining weight. I have been working with both of them on nursing…Noah started several days ago and Barrett finally figured it out yesterday. Barrett has not had an apnea spell since Monday, so we are getting close to our 7 day mark. (The doctor says he has to be 7 days apnea free before he can be off the monitor). Barrett’s heart issues seem to be going away as well (he had 2 small heart problems that they expected to self-correct). They cannot hear the murmur with the stethoscope anymore, so that is a great sign. He’ll have another echo-cardiogram before we leave to be sure.
Overall, we are really thankful that our boys are doing so well, despite all of the setbacks. As difficult as this has been with the ups and downs, watching them go through all of the testing and prodding, knowing they don’t feel well when they are rebounding, and not being able to hold them nearly as much as we’d like… we look around that NICU and can’t help but praise the Lord that our boys are doing so well. There are some babies in there who are in much more dire situations, and I can’t imagine what it would be like to be dealing with something like that. Speaking of the other babies in the NICU, please pray for them when you pray for our boys. Some of them are going to need miracles.
Thanks for keeping up with us and for praying for us. We are just taking it day by day, but we are ready to get off this roller coaster!