Posted By Posting
Nov 03, 2008
evan's dad
Evan born Sept. 4, 2008. 10.2 lbs Dx Reflux
Day 4 of no sleep zzzzzzzzzzzzzz..........
Well Evan finally came home with us on Thursday. 8 weeks in the NICU. Bitter sweet day considering he is now fed through a G tube cause of his food aversion. I have some questions for anyone who may have experienced something similar and may be able to provide some insight. The Dx is severe reflux but he has add eating issues even while in utero (mother had excess amniotic fluid). He has had many studies done and everything seems to be fine but his swallowing is very labored and he refuses to eat orally. He keeps everything down with an occasional gaging fit followed by frothy bubbles. We have countless appointments forthcoming and was wondering if everyone experiences this with severe reflux or is there something else going on? Maybe that's a question every parent asks themselves when there baby won't eat or sleep? Does anyone else have an infant that just refuses to take a bottle? Did it get better with time? Was it better with the introduction of solids? So many questions that Dr's can't seem to answer. What kind of meds do YOU take to cope with the stresses of not sleeping and taking care of a hurting baby? LOL Trying to keep as upbeat as possible. Thanks for the support and the hundreds of posts that keep me informed :)
Nov 03, 2008
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Well congratulations on finally bringing your little one home and surviving 8 weeks in the NICU. We never had to do a g-tube because my son was a huge comfort feeder but he always did the very labored swallowing and choking at feeds so I think some of it is normal with severe reflux. Are you going to a feeding clinic or working with a SLP for the feeding issues. I hope you get the answers you need at all the upcoming appointments and yes I think as a parent of a child with medical issues you kind of always wonder if something else is going on. Only time will tell in that department as many of us can attest to. Just try to take it one day at a time and get lots of breaks and take lots of naps to survive dealing with the stresses of dealing with a hurting baby. I never took any meds but many on here have for depression. I found therapy was a better outlet for me and still is for some post traumatic stress which you very well may have after spending 8 weeks in the NICU. I don't know if you are pumping breastmilk or not but a glass of wine is also a good stress reducing med when you need it. Hang in there it will get better. Keep us posted on your little one and again Congrats!
Nov 03, 2008
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Oh gosh, can't help you with the G-tube stuff, but taking care of a hurting baby is rough on all involved. My hubby and I thought we would lose it. We got very short with one another. Try to work as a team and try to give each other breaks when able. It's amazing how a 15 minute uninterrupted shower can have a huge impact-or even a one mile run-whatever you can fit in. I certainly had quite a few glasses of wine and of course, coming here for support helps big time. Just knowing you're not alone. My hubby and I alternated nights in getting up with the baby, so that every other night we got undisturbed sleep. This we still do, and it helps tremendously. Good luck!
Nov 03, 2008
ethan's mom
Mom to Ethan, born 4/23/08. Diagnosed with Reflux at about 1 month, started medicating with Zantac, which wasn't helpful for us. At about 2.5 months, we started on Prevacid, twice a day, and that is working much better.
Ethan is breastfed and has a few solids that he is enjoying very much.
Congratulations on getting to bring Evan home. I'm sorry that it comes with such a high level of stress.

I'm a stay at home mommy, so I get most of the child care duties, but my hubby helps out when he is able to. When night feedings were going terribly, my hubby would get up with me, just to support me as I tried to help Ethan. Now that has leveled off some, and he sleeps most nights, since he has to work in the morning. On the weekends however, I get us through to the last feeding, about 4 or 5, and then my hubby takes over until I wake up, usually 9 or so. Those few hours help me out tremendously. :)

We also snap at each other way more than ever before, but teamwork is our key to succes.

My only other piece of advice, if you can help yourself, is to not over analyze every symptom. My hubby and I both do, and I am realizing that it just makes me feel worse, and shortens my patience with Ethan when he needs me the most.

Nov 04, 2008
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
When Adriane was 5 weeks she stopped eating. She wouldn't take anything. It ended up being severe reflux as well as MSPI. Once she figured out that the new food we were giving her was helping her and not hurting her tummy as badly she started taking the bottle. It did take a while with the NG tube because she was stubborn, even at that age. She still gets that way now and it is 16 months later. The gagging is very normal and the frothy bubbles we have had. I think most on here have. There very well could be something else going on and if you feel that way don't hesitate to ask one of the docs. That is what they are there for.

I do think that the reflux can get better when they get more in their tummies. As far as meds, everyone on here has had different experiences with different meds. We have tried zantac, prevacid, reglan, axid and the over the counter stuff. Every child takes to different meds. Most of the meds won't keep them from refluxing all together but they should help with the pain and the amount of acid.

As far as how to cope, that is different for everyone also. There are still times with my dh and I are short with each other because of everything that is going on with A. One of you should be getting sleep if possible. When A was at her worst, as far as refluxis concerned, I would try to get up most nights because dh was working and it was summer and I didn't have to work. Then if I couldn't handle it any longer then he would take it for a while. Even though I didn't get good rest even to lay down and take an emotional rest is good. The emotional part drains me more than anything. All you wan is your child to be well and not uncomfortable and that takes time. You guys are doing a great job and I this place helps me so much. I hope that things start getting easier. -Amanda

Nov 05, 2008
evan's dad
Evan born Sept. 4, 2008. 10.2 lbs Dx Reflux
Thank You!
Thank you for the support eveyone. We see the GI today so we'll see how that goes.
Check with your
doctor first!