Andrea has gained enough weight that she is no longer the smallest baby in NICU. However, she has a reputation because she was so small at birth, and has collected a variety of nicknames. Today, I met a new nurse who affectionately refers to Andrea as "Thumbelina", which seems appropriate. She's barely two hands full.
The only change for Andrea in the past 24 hours was a decrease in the amount of pressure used in the CPAP. She's gone from 8 to 7. She still needs between 25% and 35% oxygen support, slightly more when we're kangarooing or when she's on her back in the isolette. We hope to see that improve as she grows and her lungs get stronger.
Andrea lost a little weight between yesterday and today. We have to keep looking at weeks, rather than days, because the downs can be discouraging. We're so close to the 900 gram mark - I think we'll feel elated when Andrea has finally doubled her birth weight.
Andrea continues to get the same feedings; 16 ml of fortified milk, now with the MCT oil. She has grown enough that she's moved up to Pampers Preemie sized diapers (she used to wear "pre-preemie" diapers), and the #2 size blood pressure cuff. The #1 size was about as big as a standard size "Band-Aid".
I got to hold Andrea today, and while it is wonderful to have her in my arms, it is also a scary experience. She usually needs more oxygen when I'm holding her, and there is the constant worry that she's not getting everything she needs while out of the isolette. For some reason today, she seemed to have more trouble with her oxygen than usually, frequently setting off the "desat" alarm. I know the nurse is watching, and I shouldn't worry, but I can't help it. It serves as a reminder, too, that despite her good progress so far, she still has a long way to go, and so much can go wrong in the meantime.
We are more than six weeks into this experience, and are drained to the bones. We are so lucky, because it could have been so much worse, but it's still exhausting. Thank you for all the support, both material and emotional. We really have to live day by day, because to think of the long term is so overwhelming. We are probably about one third of the way through the process. While most preemies come home fairly close to their due dates, Andrea will likely be delayed because she started so far behind.
Please continue praying for Andrea, and for us. Every day puts us closer to a happy ending.
“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”