by Tracy on Wednesday, October 5, 2011 at 4:27pm
October 4, 2011 3:30am
Scott: How's Peter doing? Any news?
Tracy: I just got back from visiting him in the ICU for a few hours. It was so nice to just have him resting on my chest and in my arms. He seems SO tiny and fragile to me, especially because Lucy was almost twice his size when she was born.
He is on oxygen and has a feeding tube in his mouth that goes down his throat to his stomach. They have been increasing his feedings a little at a time each feeding (which is every three hours) and he is almost at an ounce per feeding. As he gets more fluids through formula, they decrease the amount of fluids they are giving him through his IV, which is good. This is also a good sign to me because it shows that he is developing a good appetite and hopefully will continue to grow and become stronger. The IV they are giving him also has a vitamin/mineral/fats drip to help him get all the things he needs.
They sent out another (and hopefully quicker) blood test that just focuses on the three chromosomes that they look at for genetic abnormalities, versus the one they sent out before that is a complete DNA workup, and takes longer to process. So, we are still waiting for the final word on what is wrong with Peter. To me, it really, really looks like Trisomy 18, and if it is, there are other tests to determine what specific branch of Trisomy 18 he has. I guess the real point of finding out exactly what he has is so that we know exactly what we are dealing with, but also it helps us know more specifically what to expect in terms of survival. This comes into play if we have to make decisions about whether to put him through the strain of heart surgeries and such down the road- if and when his heart starts to fail.
Right now the main thing we are focused on is his heart finishing closing up, and if and when it does close, we will see if he is okay, or if it causes more problems. Right now he has an open area that the blood is going back and forth between, which is technically a heart murmur, but because the "hole" is so big it doesn't actually make the murmur sound. The other thing that we are focusing on is him being able to eventually be weaned from oxygen, which they tried this morning, but it didn't go over well. So, for right now they are just keeping it at the level it is at, and not going to mess with it. Down the road (if we make it that far) we will probably have to look into and start thinking about flying him to San Antonio to get a stomach tube put in for feedings. But, we aren't even really talking about that right now. A typical NICU stay is an average of two weeks, and I expect Peter's stay to be longer than that, but who knows. Right now I am taking it a day at a time really.
So far he hasn't crashed or anything yet. He is stable with the oxygen, IV's, and feeding tube, and to me seems like he is doing well for his situation.
I hope that we can at least get a family picture with all four of us- him and Lucy- at some point, but for now Lucy isn't allowed in the NICU area, and he isn't mobile/I don't think they would let me take him out of there.
Long answer to a short question! Let me know if you have any other questions or anything. I'll let you know when we get the test results back and we learn anything new.
Most of the time I am okay, but every now and then I have a big emotional break down. It helps to think about all the love and prayers out there on our behalf. It's just so hard waiting... waiting for answers, waiting for the other shoe to drop.