Update and Announcement
Yesterday was another harder day for Micah. We have been really blessed that her only real issue presenting itself right now is her lungs. However, this is a big issue. The thing Micah Ahava needs most right now is still growth. Everything about her treatment has been about helping her grow as quickly as possible; about rest and nourishment.
One thing they tried this week was lowering her steroid suppliment. You see, we all have a natural amount of steroid our body uses to control inflamation (like in your lungs) and do other necessary tasks. With micro-preemie's like Micah, this is one of the things their body hasn't learned to produce enough of, so suppliments are used. Yet, steroids also inhibit growth. Thus, the thinking is that Micah has been growing pretty well with the steroids, but will grow even better with fewer.
Unfortunately, Micah did not respond well to the steroid reduction. It was difficult to tell at first, but she quickly reached her threshold. Her oxygen requirements, signs of stress and irritation, and CO2 levels all increased drastically. Micah was quickly is distress. The timing of these signs was also difficult to interpret because Micah did need to have her tube changed out for a larger size, and this process was irritating to her.
It's so hard for the doctors to know how much, how quickly, and in what proportions to reduce. But, they have to try, because while Micah has been "holding her own," her lung development has not been advancing like they would like it to. Holding her own is better than getting worse and worse, but in the end it might not be enough. Also, she needs the chance to produce more steroid for herself. In this case, an attempt to take an important step forward turned into a step backward, a hard step backward. All of the energy she would have used growing slowly (rather than more quickly as they had hoped) has been used fighting this battle and recovering from it.
So, Micah has been on increasing support this week (which causes more damage to her lungs) as a result of the decreased steroid. They tried changing vents and sedation with no success, so they started going back up on the steroids yesterday. It took about 7 hours before the effects started to show, and until well after midnight before they found her stopping point for the day. Her support settings and CO2 levels are still higher than we'd like them to be, but much better than they were. Unfortunately, she still needs a pretty good dose of steroids just to maintain even these numbers. Of course, the longer she stays on them, the more dependant she becomes, the less likely to produce enough of her own, and teh harder it will be to get off of them well. Also, (as many adults can testify) attemping to get off of a steroid treatment can be very uncomfortable, even painful.
Micah is still growing. She is now 2 pounds, 10 ounces!!! But, this has been a set-back, with more lung damage and a more difficult road ahead of her in terms of her lung development vs. lung damage ratio.
One of the hardest things for us this week has been seeing Micah sedated. The sedation helps her conserve her energy and remain comfortable (with her tubes, etc.), but it is an unnatural rest. It is hard to see. Her normally bright eyes are dim and dark when they are open, and they don't open widely. She looks confussed. She is barely responsive to our touch and our voices. Sometimes, she hardly looks alive. The way her ventilator shivers her chest doesn't help the image any, either.
But, she is alive! She is still here. Her feeds are up. She is resting. Nothing new (and there are myriad possibilities!) has presented itself. She is holding her own, even now. She is better than she was yesterday and the day before. Her oxygen support is down to 50% now, which is not terrible. We had hoped it would be as low as 35-40 by this morning, but Micah couldn't handle going any lower than 50, and sometimes had a hard time staying there.
Also, we did notice that her IV site (from her transfussion early in the week) was showing evidence of localized infection, and they have been able to treat that with just a topical cream. We are praying for no infection to develop, because infection is always a hugely dangerous risk for our daughter. She may need another infussion soon, because she is already looking pale and mottled. I am not surprised after the hard week she has had. She had to use so much energy because of the lower steroid dose, that she probably just wasn't able to keep up on her blood production.
Now, for the announcement:
Stephanie Ellison, a sweet friend of ours from Abilene who is also a photographer, has offered to raise some support for Micah by selling artwork made especially for Micah by her precious daughters Abby and Emma. She has very graciously offered us 100% of the proceeds to go toward Micah's care. To view this artwork, please visit her site at www.simplyencourage.com and follow the Order Prints link. You will then see an image and link for Micah. There are 5 paintings, but I won't ruin it for you by telling you which are my favorites. These paintings really speak to our situation.
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