Wednesday, April 22
Well, it's been a week again since my last real update. Sorry! Where to start...
Faith's first appointment with the CAIR clinic a couple of weeks ago was a little overwhelming. I had been told to expect that, so I wasn't surprised, but I'm not sure I could have really been prepared for it, either. I'm sure it was extra overwhelming for Dave, who was meeting everyone there for the first time...
The nutritionist made mention of Faith's age now and that we could start thinking about introducing solids, but I told her I don't think Faith is ready yet and I intend to put it off for awhile still. While I don't usually live by what the American Academy of Pediatrics guidelines say, I do agree with them when it comes to introducing solid foods, and they have changed their guidelines to recommend exclusive breastfeeding for the first 6 months. There also are the recommendations based on development, like that the baby should be able to support and lift its head and sit up supported, neither of which Faith can do yet. She's getting there on head control, but I think it'll be awhile for the sitting, so we won't be thinking about solids for a couple of months, probably.
The nutritionist also asked about Faith's oral eating, so I told her what I had been doing with the bottles, and she thought it was great that Faith was tolerating it. I told her I had breastfed her the one time, but was worried because I didn't know if she was getting too much... but she thought it would be better to just breastfeed and not do bottles at all! She talked the docs into it, so they decided that I can turn Faith's g-tube feeds off for an hour at a time, four times a day, and breastfeed her as much as she wants! She is doing great, but still dependant on the nipple shield, which I hate. Anyone who has advice on how to transition her away from that, please let me know!!
She also got decreased to 18 hours on TPN. Still the same volume, but 2 extra hours free, so now she has 6 hours off each day. I try to breastfeed her at least once or twice during those 6 hours, so that I have a little time every day where she is cordless. I love how it feels to hold her without anything attached!
We started giving her an iron supplement through her g-tube, since she is pretty anemic. We should find out with this week's labs if it is working. She seems to be tolerating it ok, it hasn't made her throw up that we've noticed. She did throw up three days in a row last week, with green throw-up on Friday, which was pretty nerve-wracking (green throw-up is never good!). She only did it one time though, so they said not to worry too much about it. And she hasn't thrown up since then, so I think it was a fluke.
I already talked about her appointment last week, where her bili numbers were so much better. She also had GREAT weight gain, from about 4.8 kilo's (a little over 10 1/2 lbs) to 5.0 kilo's (11 lbs)! It's still not enough to land her on the growth chart, but it's good news, and I can't wait to see how she does this week, with increasing her time off TPN and taking those breaks from her continuous feeds to breastfeed... I've got her continuous feeds at 17 mL/hr now, and she seems to be doing great, so I'll probably try to bump her to 18 in the next couple of days.
We had a great visit with Dave, the boys, and my mom. They left early Monday morning to go home. Faith and I are taking a couple of "down" days now to recuperate- neither one of us is used to doing as much as we did in the past 2 weeks! We didn't end up going to the circus, but we did go to the aquarium... We got a pass from the library on Hanscom AFB that got us in for $8/each, and I'm glad we did, because we all left pretty disappointed. I think it's just because we've all been to the aquarium in Chicago, but none of us thought this one was anything special, and we didn't think it was very handicap/stroller accessible, either.
Speaking of things not being accessible- I emailed a complaint to the director of the Green Line of the T here the other day. Probably at least 5 times in the second week that everyone was here, we had to carry the strollers up the stairs to get on the train, because there was not a car that didn't have stairs. My mom's not even supposed to do stairs, let alone hold the stroller so we can get it up. Thank goodness she and Dave were there, when it is just Faith and I we won't be able to get on the train at all if it doesn't have accessible cars. And then, in order to get to the aquarium on the train, you have to transfer from the Green Line to the Blue Line. The station where you have to transfer has no elevators! You have to go down a level to change trains, so we had to carry the strollers down the stairs (and it was a big flight of stairs). I still haven't heard anything back from them... but depending what I do hear (if anything) I might be contacting the ADA on that stuff too.
Let's see, what else...
Faith is doing great, you can hardly tell she's jaundiced anymore. She's alert and attentive and loves to play with toys, she recently discovered her hands and will stare at them throughout the day... she's fascinated by hands in general and will grab your hands if you put them near her and stare at them. I think she's getting another tooth finally, she's been chewing on anything she can get to her mouth (mostly her shirt, blankets, and other fabric stuff). She's bitten me a couple of times nursing, which is not cool and hurts even through the nipple shield.
We have our next appointment at the CAIR clinic tomorrow afternoon, can't wait to see how much she weighs and what her bili numbers will be this week!
(I will come back and add pictures later!)
3 weeks ago