We brought Sofia home yesterday and she's still eating very well + taking the rest through her new g-tube. She's on track to really fatten up! And she's smiling and about as happy as she was before, which is great.
We're having a little belated birthday party for them today with all of the grandparents + Uncle Tim so we'll post more later.
Sunday, September 6, 2009
Friday, September 4, 2009
Happy 1st Birthday!
Thanks for all the good wishes on their first birthday. The hospital had a small party for Sofia, and Daniel had fun with his new presents at home - including his Ching dynasty hat. We will all celebrate together soon!
Wednesday, September 2, 2009
Out of Surgery
And everything went well. She now has a little button for her G-tube feeds. They are planning on keeping her on pedialyte for today and quickly bring her up to full feeds tomorrow on alimentum. We're not sure yet if she will be home for her birthday party on Sat, but likely we'll have to postpone.
However she still has 90% stenosis in a small segment. Talking to the surgeon that likely means that she will have to wait until she gets bigger and is fully off the vent before they try to reconstruct, sometime in the spring.
She's back on cpap now though which is good, and she was cranky and fussing a lot when she got up, probably from all the new tubes and surgery.
However she still has 90% stenosis in a small segment. Talking to the surgeon that likely means that she will have to wait until she gets bigger and is fully off the vent before they try to reconstruct, sometime in the spring.
She's back on cpap now though which is good, and she was cranky and fussing a lot when she got up, probably from all the new tubes and surgery.
Tuesday, September 1, 2009
Back in the hospital
Sofia was continuing to lose weight so we brought her in yesterday so they can feed/observe her before her surgery. She's doing well there. Here she is.
Daniel is doing well and crawling around and trying to pull himself up to stand! He misses his sister. Hopefully she'll be home before her birthday on Fri.
Daniel is doing well and crawling around and trying to pull himself up to stand! He misses his sister. Hopefully she'll be home before her birthday on Fri.
Sunday, August 30, 2009
Upset Tummy
Daniel (not Sofia) has been having some runny diapers and in general a not happy tummy for the last few days. We've switched him to a soy-based formula and some culturelle and are trying to make things better but unfortunately he's been very gassy and unhappy and so has been getting up a lot in the night.
Sofia is eating better and is much happier. It seems like the gas problem is resolved for now. However she is still eating a bit below her target and rather than risk anything again we are going forward w/ her g-tube surgery on Wed. That means she will probably be in the hospital for her birthday so we may end up celebrating the week after.
On the bright side though she is now on 24-hour CPAP starting today! YAY!
Sofia is eating better and is much happier. It seems like the gas problem is resolved for now. However she is still eating a bit below her target and rather than risk anything again we are going forward w/ her g-tube surgery on Wed. That means she will probably be in the hospital for her birthday so we may end up celebrating the week after.
On the bright side though she is now on 24-hour CPAP starting today! YAY!
Friday, August 28, 2009
More on Eating...
Daniel can now eat finger foods including Cheerios - although he sometimes has trouble getting it to his mouth!
Although Sofia doesn't like drinking a lot of milk lately, she did enjoy the teething cookies that Mommy baked (from Grandmommy's recipe). She now has about 5 teeth!
Although Sofia doesn't like drinking a lot of milk lately, she did enjoy the teething cookies that Mommy baked (from Grandmommy's recipe). She now has about 5 teeth!
Tuesday, August 25, 2009
No Weight Gain
Sofia grew 5/8ths of an inch, but gained almost no weight over the past month. We met with her pulmonologists and the pediatric surgeon yesterday. They fit her in for an upper GI test, otherwise known as a swallow study. She was not too happy about drinking the barium liquid. Here she is in her hospital gown (or Jedi outfit?) before the test. We have a tentative date scheduled for the g-tube, and the ENT doctors will scope her trachea at the same time.
Friday, August 21, 2009
Not eating...
For the past 3 or 4 days Sofia has not been eating well. She's had one particularly bad day where she ate about half of what she was supposed to. She's also been very, very gassy which we think is the cause of the not eating. So we've toned down the amount of neosure, switched to dr brown bottles (supposedly good for gas) and a few times tried to give her some extra through a tube. This also had the side effect of venting off A LOT of gas but of course really upset her.
Unfortunately this has caused her to lose some weight, as of yesterday she was back to 14.3 lbs which is basically no gain for 3 weeks.
So her CPAP trials are continuing but not increasing past 18hrs/day. I think she's fine in her lungs but of course the Drs are nervous and want to hold steady.
The big decision will come on Mon when we bring her to Yale for a checkup.
I (Dad) am very reluctant to put in a G-tube, especially this late in the game with her trach. As simple as the Drs say it is, there are lots of additional complications = risk and cost (it will set back her oral feeding) that I don't think make sense. And maybe all of this is a normal baby not eating thing which for her is a big deal but doesn't merit overreaction.
Unfortunately this has caused her to lose some weight, as of yesterday she was back to 14.3 lbs which is basically no gain for 3 weeks.
So her CPAP trials are continuing but not increasing past 18hrs/day. I think she's fine in her lungs but of course the Drs are nervous and want to hold steady.
The big decision will come on Mon when we bring her to Yale for a checkup.
I (Dad) am very reluctant to put in a G-tube, especially this late in the game with her trach. As simple as the Drs say it is, there are lots of additional complications = risk and cost (it will set back her oral feeding) that I don't think make sense. And maybe all of this is a normal baby not eating thing which for her is a big deal but doesn't merit overreaction.
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