Sunday, September 27, 2009

Another week down

Its been a pretty busy week for us, so I apologize for taking 7 days to post on here. Really not much has changed, but we've been spending a lot of time every night working with Riley on bottle and breast feeding. She's getting the hang of it, just not as quick as we would like. Pam can get her to finish whole bottles just about every time, but the nurses don't have quite the same luck. She does fight it quite a bit, she's usually pretty hungry but can't stay latched on. It takes patience, which is something Pam has a lot of.

They've made some changes to her feedings to try to push her along. She was moved to 100% breast milk early in the week, and given vitamins in place of the formula. Then they moved her feedings down to 75mL (from 86mL) in an effort to get her hungry for each feeding, since half the time she would still be sleeping and content when it was time to eat again - which kept her from being interested in a bottle. Because of the reduction in her milk intake, they swapped out 2 feedings a day with straight formula to make up for the missed nutrients. We noticed yesterday though that she has had some bloody stool, so they discontinued the Neosure (formula). They said it can be harder to digest, so after a KUB (GI tract x-ray) they determined the Neosure was the likely culprit and not anything more serious. She has been on formula before, but not this kind and it was always mixed in with milk. No word yet if they will bring it back mixed with milk or not. But just since cutting the Neosure out this morning, we have noticed her stools improving.

The move to 100% milk has slowed her weight gain a bit. She's been hovering around 10lb 6oz all week long, which is perfectly fine with us since she has turned into quite the chubster. She had her follow-up MRI on Tuesday, and passed with flying colors. Her BAER (2nd round of hearing tests) were scheduled for right after it, but she was too fidgety and irritable for them to do it so it has been rescheduled for this next week. Dr. Shah (neurologist) has her follow-up EEG scheduled for this week as well. She is 117 days old today, which means in 3 days she gets her 4-month immunizations. The nurses have been joking that they don't ever have to do 4-month shots there...guess that means we need to hurry up and go home! We took the infant CPR class on Wednesday night, and are supposed to be getting the monitor/oxygen training sometime this next week as well.

Speaking of oxygen, she has been improving in this area as well. She hasn't been needing a whole lot, and there have been times that she is sleeping so well that they have turned the O2 down all the way and she was still high so they took the cannulas out of her nose for up to 30 minutes. It has given us some hope that when she comes home she may only need the oxygen at feedings and at night. She did have a 5-day stretch with not apnea/bradycardia episodes either, but after noticing it we must have jinxed it because she had a few the next day. If she can go about 7 days, she might not have to come home on the apnea monitor after all.

Since Pam is the only one who has had a lot of success with getting Riley to feed, there has been talk of maybe getting her to stay in the hospital for a day or so to try and do every feeding. If we are able to do this, it would likely move us into that "24 hours without the feeding tube" window that we need to come home. We don't want to rush it, but if Pam can be successful with it and she will be the primary one feeding her at home anyways, it just makes sense.

Here's one of the times she had the cannulas out. Best shot of her face sans tubes yet!

Chillin in her bouncy seat...
Wide awake with Mommy today after a feeding...


  1. What a chubster! She has really grown a lot! Hope all continues to improve! Maybe mommy just has the right touch and level of patience to move her along!
    Love you all!
    Auntie Nikki

  2. She is doing so well, just the last few steps before she gets home!!
    Pam does have a lot of patience, and just the right sense of comfort for Riley. She has the magic touch! :)

  3. Kudos to Pam....we knew she had a lot of patience to marry Joey!!!! What a blessing for Pam to have that patience at this time and for little Riley to do so well for Mommy...your time will come, too, Joey!
    Love to all!
    Grandma Ginni