Thursday, October 1, 2009

Back on track

Looks like this is another situation of "we may never know". After many x-rays, blood cultures, stool cultures, and many other tests, they still haven't determined why she was having bloody stool or a dilated intestine. Yesterday her problems seemed to have ceased and everything had come back negative, so they decided to start her feedings back up. She'll be weaned back up to full feeds over a few days. She started with 30mL yesterday, and sucked the bottles down pretty fast each time. Today she moved up to 60mL and is doing good again. Hasn't taken every feeding by bottle, but basically back to where she was when this all began. Hopefully tomorrow she'll go up to 90mL which will get her back to full feedings. As they've moved the milk amount up, they have been weaning the TPN down. Will be good to get her feedings back to normal so we can get the IV out. She has pulled a few of them out again, which is not a good thing. Since the formula was the likely culprit for her latest issues, our guess is that she'll begin getting the vitamins again when the TPN is stopped instead of the formula for nutrient supplements.

Despite not getting any milk the last few days, she's still gaining weight. Tonight she was up to 4905 grams, or about 10lb 12oz. Her oxygen needs have continued to be real low, and down to room air when she is calm and sleeping. Yesterday they finally were able to do her follow-up EEG and we are happy to report it was "normal". There were no signs of abnormal electrical activity or seizures, so that means she can be weaned off the phenobarbital. They will slowly wean it down over 16 days, since cutting it cold-turkey would give her some major withdrawal. This is a huge thing for us, since once she has the feeding tube removed once and for all we would have to mix it in her milk. It has a very strong rubbing-alcohol taste to it, so very hard to take in a bottle. Will be nice to have it down to very little when we get to that point. She is due for another round of immunizations, but they chose to put it off until she's out of this latest phase of problems. Hope to get them in a few days, before we leave the hospital so that all the fussiness that usually follows will have to be handled by the nurses and not all of it by us, ha!

Pam is still able to get Riley to take her bottles better than anyone else, so she's spending quite a bit of time at the hospital. I think I said this a few posts ago, but we are going to look into having Pam stay at the hospital with Riley for a day or two to get her doing more bottle feedings. The nurses tend to hook up the feeding tube a lot quicker when we aren't there to work with her more on the bottle. They don't have the time to sit there for 30-40 minutes each feeding "fighting" Riley the whole time, where as Pam has the patience and the time to do just that. Depending on how that goes, we may be able to do that this weekend.

Haven't taken many pictures the last few days, but here's kind of a funny one of her during the EEG. They didn't even have to sedate her, and she slept right through it! And ironically, thanks to the diuretic, she had filled her diaper and was laying in a puddle of pee! She had soaked the bed, but yet wasn't even fussy. Check out all those wires on her head...poor little thing.

Also wanted to show this picture to everyone. Now that she is so big and doing so well, I can look back at this and realize how lucky we have been. I don't think at the time the severity of everything really hit us, as we did everything possible to remain positive. I recently got this picture from my sister, and it really opened my eyes. Check out how small she was, taken right after her birth, really gives you perspective:

Tomorrow, October 2nd, Riley will be 4 months old. Wow...can't believe how fast this has all gone by. Let's just hope she isn't still there at 5 months. But at this point, we quit trying to guess or hope for a particular date - just take it one day at a time and let Riley decide when she wants to come home. It will all be worth it soon enough...

1 comment:

  1. Riley is definitely a fighter Love and prayers Pat Goller Cinci, Ohio