preemie with reflux

[Callysmommy]

Cally, my four month old was two months premature due to double placental abruption caused by complete placenta previa.  She was diagnosed with sleep apnea in the NICU.  After a month long NICU stay we took her home, then took her back three days later when she stopped breathing while I was feeding her.  After a week long stay and numerous tests, she was diagnosed with severe GERD and put on Axid, and her feedings were thickened.  

We battled this reflux thing, the pain, the constant aspirating into the lungs...etc.  People really do not realize how painful and hard this monster is to deal with.  I get from other moms that "oh babies get reflux"...they say it's like spitting up, but you notice those babies don't cry in pain and arch their backs, and refuse to eat.  It is so hard to get my baby to eat.  You can see she wants to eat, but it's too painful.  We also delt with constant colic (crying all day long), gas, and constipation from the rice.  

About two months of age we switched her from formula to goat milk.  Instantly, the reflux was gone.  It was amazing.  We discontinued the rice and she was a happy baby.  We were able to get her apnea monitor off, and she no longer had problems.  Then, about a month later Cally came down with bronchiolitis for the second time, three weeks later.  The reflux had came back with a vengeance.  It is just as bad as it was in the beginning.  When I feed her, she gets a crunchy mucus sound in her back, which means it's going into her lungs.  I spent last night just holding her and crying.  Yes I'm sure things could be so much worse, and it might get better....but it's so hard to see her suffer, and refuse food.  People's attitudes of "look on the bright side" like they think they know what my child is going through is very aggravating.  I have to feed her almost every hour, because she'll only get down what a newborn eats at each feeding...and still each feeding is a nightmare.  

I don't know what to do.  I'm sad for my daughter.  My pregnancy was a nightmare, and delivery, that was worse.  I was unable to breast feed because there was so much trauma on my body that my milk never came in.  I always felt guilty for not being able to breast feed.  I tried so hard, and to this day I can't stand the sight of a breast pump.  

I'm sorry I'm being so negative.  I'm just having a very tough time and needed to talk to somebody.  Thank you for listening.  If you have any suggestions I am open to them . Thank you.  

http://sites.bundleofjoys.com/cally/videos.php?id=1408#video
Cally's Story

[Callysmommy]

I think the rice would be better than maltodextrin and corn starch...corn is much more allergic than rice.  I guess I am not alone with this reflux thing.  I tried weaning her off axid and it caused a rebound effect.  I'm not sure if I should take her back to the doctor's or what.  I'm so sad for her.  

[jeowen]

I'm so sorry to hear what a rough time you guys are having.  I remember all those crying/screaming nights from my youngest 2 boys.  All 4 of my boys had reflux but my youngest 2 were the worst.  

They had to be on combos of meds together.  Prevacid in the morning and zantac at night along with that we did carafate every few hours and a motility drug every few hours. Along with prethickened formula.  Nathan was allergic to dairy & soy protein so he was on a prescription formula called Neocate for the longest time.    He then went to an OTC hypallergenic formula.  We did a trial of regular milk for about 7 months started around the age of 3 1/2.  but then discovered that was causing IBS and uncontrollable bm's!  He's lactose intollerant.  He's now 4 1/2.

[ChitChatNine]

Here is from the website:

What are the ingredients in Thick-It?
Original Thick-It contains modified cornstarch and maltodextrin.

Extra Strength Thick-It 2 contains modified cornstarch.


http://www.thickitretail.com/faqs.html#Anchor-What-47857


From what I understand, though, have to be careful it doesn't impede nutrion bcz it fills up the baby and/or adds calories ... going by memory here .. but two things to further look into.

Cheryl

[ChitChatNine]

I am all with you on the formula can be worse .... rice milk was the answer after 2yrs for my son .... we emulsified it with added oils.

Not sure on the thickener .. maybe corn starch .. I'll try to google it.

C~

[Callysmommy]

Thank you for the info...yes her dr. knows she's on goat milk.  It's superior nutrition compared to formula in my opinion.  Formula made her reflux so much worse.  I will ask about that thickener...what is it made out of?

[ChitChatNine]

YOU ARE NOT ALONE as the pp poster mentioned.  That is #1 ..... and #2 is please promise me you will read this link below which is in the health pages above ...  if you do only one thing that is for "you" do this ... they are journals I wrote in the middle of the night as my son cried out in pain .. the pain I felt as a mom, the disappointment I had dealing with such pain when this was supposed to be a happy time after a very high risk pregnancy .. my baby should have popped out perfectly healthy .. .unrelated to reflux he had a bowel resection at 12weeks old... he had RSV @ 8 weeks old.  

YOU ARE NOT ALONE:
http://www.medhelp.org/health_pages/Gastroenterology/A-Mothers-Journal--You-are-Not-Alone---Written-by-a-Reflux-Mom-in-the-PreDawn-Hours--These-will-Touch-your-Heart-Forever/show/118?cid=182

Two questions that come to mind as I read your post:

1) Does your Dr know you are/were on goat's milk?  It doesn't have the nutritional components of formula for a 4mos old ???   and

2)  Maybe ask your ped GI about a product called THICK IT instead of using rice .. it will thicken the bottle feeds w/o using rice.

Please continue to post in the community.  Some of the veterans haven't stopped by in awhile .. I'm going to shout out to them along with our new members and together you will get all you need right here on this community.

Cheryl (dd 17, 15, 10 & ds 9)