Friday, February 15, 2008

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.


Anonymous said...

We're still thinking and praying for you all the time! I check the blog every day. I'm so sorry to hear about the recent struggles! We will also pray that you don't get too sick! Please post on your blog if there's anything we can do to help your family. We love you!

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24weeker's Mama said...

Dear Shanon,

I am glad that you and Kinnick are home now.
I just wanted to share with you about Sam's feeding issue. He's been using a thickener for his milk since he was in NICU. The thickener called "SIMPLY THICK". Eventhough the swallow study result was ok without the thickener now, but we decided to continue with it because he seems to get fed better and got more volume. Without the thickener he only can get 2 oz to 3 oz per feeding and it takes too long, but with the "Simply Thick" he can get up to 5 oz per feeding and it much quicker.
You may want to ask your doctor about this thickener. You can check their website too, here is the address:

I hope you get rid of your cold quick. You can also wear a MASK, i did it before when i was sick.

Yani Hawaii

23wktwins'mommy said...

I think it is so sick that Carver doesn't have nursing. Both Serena and Edwin qualify and they are only on a very small amount of O2. It makes me angry to think about how someone who deserves help has to fight to get it. I'm sorry about that.
I hope Carver begins to take his bottles again and I hope Kinnick's belly feels better. I don't know if you can do this, but we came home on Similac Advance and have a sheet with how to mix formula to get a certain cal/oz. For example, the kids are on 25 cal/oz formula, and that equals to 47 mls/ one scoop. So I will pour 188mls of water and add 4 scoops to make a bottle. If you need the breakdown of how much H20 and how many scoops to make anything from 21 cal-30 cal/oz, let me know!

Anonymous said...


I just wanted to let you know that I'm still thinking of and praying for you all!

Sarah Hingst (Hayden's old teacher at NorthRidge)