Wednesday, May 13, 2009

All OK now, but what a day!

First off, Andrea is fine. However, she gave me a huge scare today. Our morning began with waiting for the eye doctor to come for Andrea's repeat exam. The good news there is that there is nothing definitive wrong with her eyes. There is a chance that she has stage I retinopathy, which usually resolves itself. It's not definite that she even has it, but if she does, it's not a huge worry. If she had, or developed Stage II or III retinopathy, that is treatable with laser eye surgery, but the ophthalmologist doesn't think that's going to happen.

Since we had to wait for the eye exam before she could eat, Andrea's 9 a.m. meal was postponed until after 9:30. By the time I got her bottle to her, she was ravenous. She attacked the bottle like she was starving. There was slightly more than her normal 30 ml in the bottle, which isn't a big deal. Andrea usually dribbles a fair amount. Well, today, she didn't dribble, and drank the entire bottle in her usual 6 minutes. I burped her, and laid her down on my lap for some Mommy and Me time. Almost immediately, Andrea desated to 24 (the lowest I ever saw) and her heart rate dropped to below 50 beats a minute. The nurse was up in seconds, and got Andrea back in the isolette. She cranked up the oxygen and sort of massaged her chest. The entire incident lasted maybe a minute, but it was the scariest thing I've seen in NICU yet. But as I said, Andrea is completely FINE now.

Adrea's weight today is 1650 grams, (3 pounds, 10.2 ounces) and she has been moved to four bottles a day. Every other feeding is by bottle, allowing Andrea time to recover from the exertion of drinking on her own. We anticipate her being exclusively bottle fed in about a week. PT continues to go well, and the doctors are repeating Andrea's thyroid screen tomorrow. Chances are, she will need a blood transfusion pretty soon. They take a fair amount of blood for the thyroid tests, and her body just doesn't make new cells fast enough. We have a pint of blood in reserve from one of our directed donors, so it's there as soon as she needs it. Andrea is still on nasal cannula, getting 23% oxygen at a rate of 1 liter per minute (Down from 2 liters a week ago). 21% is room air, so we're getting close. The temperature on the isolette is down to 28.3 degrees Celsius. At 28 degrees, she can go in a crib!!!

As for me, I saw the doctor for yet another follow up to my incredibly icky wound. (And you all thought that was in the past!) The good news is that it's much better than in was. Ken has been packing it every day for several weeks. (He really loves me!) The bad news is that it's STILL not healed. We have to continue the cleaning and packing for at least a few more weeks. Hopefully, my next appointment will be my last.

We continue to try to remain upbeat. When we're in the NICU, we always maintain a positive attitude. We are fortunate that Andrea is doing so well. The scary thing is that stuff can still go wrong, and go wrong very quickly. The nurses, doctors and therapists in NICU are amazing - nothing seems to phase them, and they deal with Andrea's ups and downs with great calm. We hope to learn that skill from them. We have been living this unnatural life for almost 11 weeks, and sometimes it's hard to keep going. We cling to the dramatic improvements Andrea has made so far, and continues to make every day. There is a light at the end of the tunnel.... but the tunnel is longer than we ever imagined.

A quick shout out to my Demarest friends - your emails, notes, cards, gifts and meals mean more to me than I'll ever be able to express. You keep me going when I'm feeling overwhelmed, and I miss you all. You're the best group of people anyone could ask for in coworkers and friends.

"With the fearful strain that is on me night and day, if I did not laugh I should die”
Abraham Lincoln

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