February 27, 2010

What a week! I'm am mentally and physically drained from a week filled with major ups and major downs. Let me explain....

On Sunday I visited Avery and noticed that her heart rate was increased compared to what it normally was. I asked the nurse about it and she explained that Avery's temperature was a little high and that could increase her heart rate. They were trying to bring her temp down and they were confident that her heart rate would also come down. Well, needless to say, I got a phone call from the NICU doctor at 11:00 p.m. on Sunday night telling me that Avery's heart rate would not go down. They had tried everything. The dr. had a few ideas of what the problem might be but they wouldn't be able to confirm anything until Monday morning when additional tests could be done. The dr. assured me that they would keep a close eye on her overnight and make some decisions in the a.m. Around 7:45 a.m. I called the NICU and spoke to Avery's primary nurse who informed me that Avery was not doing so well. Her heart rate was in the 220's (it is normally in the 140's and 150's) and she was not tolerating being touched at all. We knew that her little body couldn't handle such a high heart rate for very long. I put Brielle on the school bus and raced up to the hospital to see Avery and find out what was going on. After a very agonizing morning of tests and lots of waiting and worrying they finally figured out that Avery was severely dehydrated. Lots of little changes to her feeding and some additional medication she was getting caused her to have diahrrea and that resulted in the dehydration. Her body is so small that any changes have a significant effect on her. I stayed with her all day and watched her heart rate slowly go back down and waited for blood work to let us know that her levels were getting back to normal. It was a VERY scary day and it made me realize (even more than I already did) that her life is so fragile.

She has gotten better every day since then and is finally back on track. Which leads me to today (the major "up" of the week)....Avery was taken off the ventilator!!! Finally! They made the decision this a.m. to extubate her. So far so good. She is on CPAP and is doing well. The doctors and nurses keep reminding me that she may have to be reintubated at some point, but I'm glad that they gave her a chance to get off the ventilator and breathe on her own. I know she can do it! Keep your fingers crossed!

We had the chance to do some "kangaroo care" a couple of times this week and we both enjoyed it. I spoke to her doctor a little while ago and he told me that at this point the major goal with Avery is to get her to gain more weight (she is currently at 2 pounds 3 ounces). She is healthy and is progressing well. I will post some pics of her without the ventilator tube in her mouth later in the week. Keep her in your thoughts!!!