New here and MAJOR issues

[Anonymous]

Hey there. My DD is 7 weeks. We have been through the mill and back with her. She is now on Neocate as she has, the worst the Dr. has ever seen, MSPI. She also has reflux. She is on Neocate. She has a VERY stron suck and I have tried EVERY bottle that I could find. We finally settled on the Dr. Brown wide necks with a Preemie flow nipple (they dont make these yet, I was able to come by some though). The problem is even with these she chokes and cries through most of her bottles. She has even aspirated so severely that we have had to call 911 (she spent a week in the hospital after this). I now have bulb syringes in every room of the house. She has had a PH probe, Upper and lower scope and a upper GI. She is currently on Prevacid three times a day. We tried thickening with Beech nut BUT her allergy is so severe that she reacted to the minute amount of protein contaments that are in Beech nut. Yesterday I bought Thick it and she ate much better HOWEVER….last night she SCREAMED from 8pm-1am!!! I discountinued the Thick it. NOW….today I called a Speech therapist and she gave me some Simply thick. She did much better on this. Though I am not thickening much. I packet Honey to 24 oz. I am afraid to make it too thick all at once and have her hurt. I am also dreading cutting nipples. I cant readily get Dr. Browns nipples as I am in Gulfport, MS and there isnt much left since Katrina!!! Has anyone had the screaming from the thick-it? I cant figure her out. At one point I was scared that she had a brain issue—–it seemed that she couldnt figure out how to suck. She would suck but nothing would come out! She does this often. I can use the same nipple for EVERY feeding in a day and it wont be thickened and she will do this sometimes. Does anyone ever have this problem? Any advise would be appreciated. I am at my wits end. I sat on the couch at 5am crying in frustration!!!

[Anonymous]

I am so sorry that you are having such an awful time. I do believe regarding the thick-it, that it’s made of corn starch, so if your baby is MSPI and allergic/intolerant to corn, that could cause the screaming. Regarding formula not flowing from the nipple, for us, the problem has been that little clumps of formula that aren’t mixed well clog the hole and don’t let the milk pass through. The only way I’ve solved this is by taking an extra nipple up with me when feeding her…when I see her sucking, but nothing coming out, I switch it, and 9 times out of 10 it solves the problem…when I go back and look later, there usually was something blocking the nipple. I know how awful this can be, as it’s been a long, and tiring road for us as well. My daughter also chokes on her feeds, though it’s not as bad as it used to be. When she was small, as soon as she choked, she would refuse to feed anymore regardless of how little she actually took in, but thankfully, she did not seem to aspirate significantly, though she did always sound gurgly after a feed. Know that you are not alone. Hang in there.

[hellbennt]

hi and welcome!

please take the time to read the following, as it’s my welcome/intro that I post for all newcomers- it’s loong, but FULL of information to help you! https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

glad you found us!

~laura

[Anonymous]

Thick it is made with a modified starch which most babies can not handle. In most cases after a few days of use it causes major diarrhea. Simply Thick is a better option and is tolerated very well by most babies. If you need Dr. Brown nipples you could ask and see if anyone would be willing to buy some and ship them to you. I would be willing. I don’t think we have the preemie around here. You can also order them off the internet. Maybe someone will post a good place to buy them.

[Anonymous]

Hi there and welcome! Same problem here. Thick it really did cause alot of gas and stomach problems for my dd. we use simply thick now, the honey consistentcy was to thick so we use nectar. At that age we used the number 2 dr. browns, and now #3. Also, we use pulmacort daily to strenghten her lungs in case she aspirates again. sort of a preventative measure. she also sleeps on her tummy on a 45 degree angle wedge in a tucker sling. they gave it to us during our week long stay in the hospital. i would try going online to babies r us and ordering the nipples. it will take a couple of weeks to get the reflux under control. it usually peaks around 2 months as well. Also, we couldn’t use any beechnut rice or oatmeal, but around 4 months we started using the barley and have had much success. good luck. sarah

[Anonymous]

Hi – no advice unfortunatley, just wanted to say welcome and to tell you that most everyone can relate on some level to what your going through. . .you found the right place for support and I hope you find it as comforting as I did to “talk” to others. I know its small comfort now but I am so glad for your sake and your babies that you know so early about what issues you are up against. .. atleast you can make decisions based on that. We didn’t know about my daughters MSPI and I remember nights that I just thought I wouldn’t make it through with all of the crying and the misery. We found the swing was a godsend . .. there were nights she just stayed in the swing on high speed because it was her only source of comfort.

Hang in there and big hugs. .. I know its a lot to handle on top of having a newborn. Sounds like your doing a great job though . .. btw, some babies just take longer for the such reflex to kick in completely.. .don’t think you have anything to worry about on that side of things unless shes just plain not sucking at all? Have you tried elevating the bed yet at night?

Keep us posted

~Liz

[Anonymous]

She was in an elevated bassinett when she refluxed and choked so bad we had to do the hymlick (sp?) and call 911!!! She ended up im the NICU for several days then stayed in the peds unit for 5 days. She now sleeps in a Fisher Price Papsan, which I find to be a Godsend. It doesnt bend her like other infant seats/carseats. I still am sleeping on the couch with it pulled up as close as possible so that I can here her choke. She also is on an apnea monitor and it is a pain to move it at night when she wakes so I stay where I feed her!! LOL. Soon I will move back to my room. I miss my bed and my husband!!! By the way, since my oldest also had MSPI we were aware early with this one. My oldest SCREAMED about 15-20 hours a day for 8 weeks. Then at 8 weeks she got Bronciolitis and hospitilized and they finally believed the extent of her problems!! She ended up having a + hemocullt and they put her on NEOCATE. She improved immediatly. Paige on the other hand is on Neocate and she is still VERY finicky. She acts as if she cant suck from her bottle sometimes and screams when I feed her. I am going NUTS!! I just tried to feed her and tried 5 bottles and nipples thinking that this was the problem. Why do I keep doing this? I know that this has never worked. I keep thinking that the new thickened formula isnt flowing well. I cant tell. She fusses/acts so wierd when I feed her. Today I vow that I am going to use one nipple all day. If she eats well one time that will be the “winner”. Then I will know that it isnt the bottle (Dr. Browns) it is just pain/congestion.

[Anonymous]

I am so sorry for all you are going through. I am glad that you have had luck with your swing. I hope following the advice of other moms here can give you some relief. Take it one day at a time.

[Anonymous]

Thanks. This website has been my one source of HOPE!!

[Author]

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