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

[momoftwo378]

Did you happen to check out the posting about Colic Calm?   That has been a lifesaver for my family and my son.  

[Callysmommy]

another update on Cally.  Only reflux ONCE yesterday during a feeding.  It did go into her lungs but didn't last for the whole feeding.  I remember when we had her on formula in the beginning, she cried in every feeding, and stopped breathing.  She's come such a long way.  

[Callysmommy]

Devoted? I wish! There's times where I just about lose it! But I'm sure alot of people do with the reflux issues.  People that have babies who don't have true reflux don't really know how much of a serious condition it is.  I also was bottle fed as a baby.  When I was born I had that staph infection from the vaginal canal.  So I spent a week in the hospital.  They didn't have the cool pumps they have today like Medela makes (medela by the way is a better pump than the one at the hospital).  My mom tried to give me goat milk but I didn't like it...so she put me on cow's milk.  I didn't have health problems until I turned 23. Then I came down with allergies, ITP (bleeding disorder) and asthma and sinus problems.  What's awesome since I gave birth my asthma and sinus problems have improved by 95%.  Sorry for my life story there.  Just getting to know you all.  

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

[ChitChatNine]

WOW..............you are such a great, devoted mom ................stick around this community .... we will all make a difference for everybody who reads our posts who has a refluxer.

Don't look back.  Not once.  Did I mention my son is 9.5yrs old and thriving!  No allergies like his sisters; no arthritis, a tad of asthma when ill but not true asthma, plays football and is a happy kid .................the what "if's" in life .............not worth going there ever again.  Could have, should have, would have and what 'if" ... not in my vocabulary anymore.

C~

[Callysmommy]

wow I cannot believe your doctor said that to you! People just act like you're a lazy mom and you don't feel like breastfeeding.  I too had a c section, I lost alot of blood and had alot of trauma on my body...let alone being able to let down to a pump with my FIRST baby who was in the NICU for a month? I remember the nurses making comments too, it was really annoying.  I just wanted to get my baby out of there.  Sorry that happened to you.  I tried so hard to get my milk to come in but nothing.  I never got engorged, nothing.  To this day I cannot stand to look at a breast pump.  While running back and forth for a month and sleeping on the floor while getting violently ill from food poisoning, I still tried to pump for my baby.  I still deal with guilt by not being able to have breast fed her.  Fortunately there are friends that I have who had compassion on Cally, and is donating some milk.  I would have another baby just to have another chance at breast feeding! That's how bad I wanted to do it, but sometimes it doesn't work out.  Some people who haven't been there don't understand.  

I found that with using goat milk, it's hypoallergenic and non allergic...my baby couldn't even tolerate nutramigen.  Made the reflux worse believe it or not.  She's doing so well btw, eating all her feeds, and even eating more! This recipe did the trick.  Making the diet more alkaline worked....so far...and it was my fault, because I had been adding brown sugar to her bottle to sweeten it (for extra calories).  The brown sugar is very acidic, and of course it's sugar so how healthy can that be.  

[momoftwo378]

I am not sure if you checked out the posting labeled.....To all with Children that have Acid Reflux- dated May 21st.   See what you think