Better Day

After a number of frustrating days, Kirsten and I finally feel like the roller coaster is headed in the right direction again. Madeleine is doing very well with the slowly increasing feeds and she's slowly improving with her bottle feedings-- of her 8 feeds yesterday, she took 4 of them completely from the bottle. We expect that its going to take a few more weeks until she uses the bottle all the time but we're fairly confident that she's headed in the right direction. Additionally-- and perhaps more importantly-- it looks like her intestines are processing the food effectively. There was concern last week that she was "dumping" meaning that food was essentially passing through the gut without being absorbed. This can cause immediate dehydration issues and long-term impedes one's ability to grow effectively. We're hoping that by slowly increasing feeds, Madeleine won't have further dumping problems.

In addition to the improved news with the feeding, we also feel better about her breathing issues. Madeleine is still on a nasal canula and is getting some oxygen-- last check it was 30%. (room air is 21% oxygen.) The reason for the breathing support and oxygen is that madeleine has been breathing fast (intermittent tachypnea) and has also desaturated a few times-- meaning she stops breathing effectively or for the less medically inclined-- she starts turning blue. (we all love the smurfs but its not cool.) What has been really frustrating is that desatting and thakypnea are problems that affect premature babies but since her heart surgery, Madeleine has had no problems until recently. This morning, we think we finally determined the cause-- her sinuses are plugged with a lot of fluid and need frequent suctioning. The cause isn't entirely clear-- it isn't infection-- but now the doctors know what to focus on and we're hoping that it will either clear up on her own-- completely possible-- or the doctors can find an effective way to eliminate the problem.

Assuming that this breathing issue gets resolved in the next week and Madeleine doesn't have any feeding problems over the weekend, our scheduled path home is as follows:

1) Reach full feeds on 6/24. Bottle feed as much as possible.
2) Take out PIC line, Friday 6/27.
3) Remove breathing support-- NLT next Friday, 6/27.
4) Have a boring, safe, growing weekend in hospital-- 6/28-6/29
5) Go home with bewildered parents on 6/30.

If you've read any other posts on our blog, you'll know that the timeline above is extremely tentative and we're very likely to deviate from it. However, we're crossing our fingers and hoping that things continue to trend in the right direction.

That's all on our end. Have a great weekend.

Brent and Kirsten