Sure enough, Tuesday they decided to take Riley off the C-PAP for the third time. She did great all day again, but around 10pm she had some A/B fits and basically got tired of breathing again so they had to put her back on. Poor thing, guess we'll try again in a few days. Yesterday, they went ahead and turned the C-PAP down to "3", which is the lowest setting. In the past, they haven't gone below 4 before taking her off. Hope this helps! O2 needs are still staying in the 21-25% range. She is really enjoying being held, and that seems to be her lowest O2 settings of the day is when she is in Mommy or Daddy's arms. Pam has been trying to do skin-to-skin just about every day on her lunch break, which will hopefully help Riley as well.
Her weight is still slowly going up, tonight was at 3555g, which is 7lb 13oz! Not too far away from the 8lb mark. Her feedings are up to 67mL, which the feeding tube syringes don't go past 60mL, so they have to split it up into two. In talking with a few of the nurses this afternoon, we are pretty sure she is the oldest baby in the unit now - which holds around 40 babies in the NICU and 20 in the Special Care Nursery. It's about time for her to come home, wouldn't you say? This Saturday (29th) is her original due date, so she hit 12 weeks old on Tuesday of this week.
They decided to get a consult from an ENT (Ear, Nose, and Throat) doctor today - there was some concern based on the way she was squirming and arching her back, and the fact that she still is making very little noise when she cries, combined with the fact that she just isn't doing well off the C-PAP. He came in tonight while Pam was in there, I had been in earlier in the evening and was already gone when he showed up. After examining her, and scoping her nose and throat, he determined there isn't any reason that he could find why she should have trouble breathing. However, her vocal cords are under-developed (condition is called Lonyngomolacia??). We are assuming this is due to the fact that she was on the ventilator for almost two months - a crucial time in her physical development, and the ventilator ET tube was restricting her vocal cords from functioning the entire time. He said this will correct itself, and should be caught up by the time she is 3 years old. Not sure yet if this means she will be a quiet crier the whole time, or if she'll have trouble talking later on. It seemed like he wasn't concerned about any long-term effects.
Here's a photo from Tuesday, during her 12 hour stint on the nasal cannulas. So great to be able to see so much of her face. You can see the irritation on her forehead from the tape from the C-PAP tubes, her skin is still a little sensitive.
From last night while I held her. She is always very calm when we hold her, she definitely knows her Mommy and Daddy and prefers us to laying in the bed.
She was very alert and awake this afternoon when Pam and her mom we visiting, looking all around and very interested in what Mommy was doing. And of course, since she was awake she was very squirmy, which made it hard to hold her and keep her calm.
Glad to hear what the ENT doctor had to say. These pictures are soooooo precious.
ReplyDeleteShe may be the oldest baby in the nursery but she's also the cutest!!!
Love,
Grandma Ginni
Aww! I think these are some of the best pictures yet - just adorable. And I just want to pinch those chubby cheeks:) Sorry to hear the third time wasn't the charm but hopefully she'll be able to get off the CPAP soon.
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