February 15, 2008

Kinnick came home on Tuesday afternoon. The distention was not explained. They took all feeds away for 3 full days - completely emptying her bowels. They suspect the formula was causing the problem. Her Neosure formula has always caused her to be extremely gassy. She is now on a new Similac formula - Alimentum. This is only a 20 calorie formula, but it is supposed to be easier to digest. It's also missing a lot of vitamins and minerals that are found in the Neosure. I'm not thrilled that we had to down grade, but I feel like we didn't have any choice. She is doing so much better on the new formula. We have increased her volume slightly to make up the missing calories. She has been burping a lot lately - on the old formula and the new. This seems odd since she had a Fundo Plycation. I've asked the surgeon and her GI specialist and both say it's ok or normal. Just seems odd to me. Her GI specialist prescribed Prevacid - acid reflux med. She thinks that some of the burping will go away if we control the gasses. Poor little Kinnick has had so many IVs that there just isn't anywhere else to put them except her head. They shaved a bunch (in patches) of her hair for IVs while she was in the hospital. I feel sorry for her - she looks like she has mange. Hopefully it will grow out soon and we can get it cut to look a little better.

Carver has been refusing his bottles again. We are struggling to get 15 oz of formula in him a day. I'm afraid that he's going to end up with a G-Tube if he doesn't start eating again. He was doing so good. I'm not sure what has caused the change. He's acted strange lately - fussy and his heart heart has been about 30 higher then his norm.

We are still waiting to hear about the ACIL/TA waiver programs that are going to be combined effective 7/1/08. Currently, Carver does not qualify for nursing via the TA waiver. The new plan doesn't look very promising, either. However, if he ends up with a G-Tube to make up feeds at night, he would most likely qualify. This is the only positive thing about getting a G-Tube.

So, everyone is home and now I've come down with a nasty cold. Since the babies were born, I've only been sick once. The last time was a tummy bug that lasted a couple of days while the babies were in NICU. This time they are home and I'm the primary care giver. Please pray that the babies do not catch my virus - mostly cold symptoms.

Thank you all for your kind words of encouragement. I read all of your comments. I can't always respond because I don't know how to reach you. But, please know that I do appreciate all of the article links, help, and prayers.