So many of you read my blog out there, that I'm pleading for help. I'm at my wits end. Kaitlyn continues to vomit and my docs don't seem to have any answers (I've given up in the past about getting an answer) but I was hoping and praying that it would just go away. It's not going away. it's HORRIBLE. This is our life. It SUCKS. It sucks for poor Kaitlyn . It sucks for mommy, daddy and Julia too. (our nanny). Please help us!!
She's still phlegmy! And the the phlegm is what causes her to vomit. Here's an example....
Called: "All Done Vomit"
She does this typically every day. Oh and did I mention that after she finished eating, she vomited again in the kitchen sink??? Well my nanny was able to catch her before she vomited and carted her to the sink (you become very experienced at knowing when when she's about to vomit the the pghlemy sounds she makes.) I actually heard pre-vomit sounds from my office, found my camera and caught the above vomit on film.
We work soooooo hard to get the meal in her and then to have her vomit it all back up, and pour it down the drain... it's a waste of everything, the food, the money, the time, our45 minute efforts per meal, her ability to gain weight not to mention poor little Kaitlyn having to "get used" to this and damage to her teeth and esophagus.
If you have any suggestions as to what we can do to eliminate the phlegm I will be eternally grateful!
Update post otherwise:
I think I had mentioned that Kaitlyn got sick AGAIN, the 3rd time in about 6 weeks. Luckily she only lost a tiny bit of weight and we continue to NOT doing night time feeds! This is huge. We've even been able to get a few oral meds in her (this could never happen before, as she gagged and vomited it up (along with anything that she had eaten before)....so maybe, maybe we can take out the tube in the "near" future? Now we still give her 2 tube water/drug feeds each day. One at night one during nap. Right now it's not bad having it, just knowing it's there is a relief actually, just in case. (and I have to say, it was quite nice to giver her Tylenol when she was sick at night without having to wake her up - hey trying to look at the bright side of having a tube)
I switched her back on to Prevacid Solutabs (for reflux) as her breath smelled horrible and I worry about acid damage....it doesn't seem to make any difference in her pghlem (and vomits). (wonder if it's worse?) As I recall last time I removed the drugs, she was less pghlemy?
I had a frustrating time last weekend, I went to a good friends 3 year old birthday party and when all the kids sat down to eat, I was hunched over (Not easy being pregnant) sitting on a child's chair on the other side of the room trying to feed Kaitlyn and became very jealous of how easy it is for the other parents. Pity party here (warning), but I have to say when I'm at home feeding her I don't "realize" how easy others have it sometimes. I think it's why we rarely go anywhere.... it's just a lot of work to feed her. A LOT of work. Now that she's older it's much more noticeable how different she is. I came home very bummed out. I hate feeling this way. I wish I could just be happy-go-lucky and not get jealous, but I have a hard time with comparing my daughter and my situation to others. Does that make me a horrible person? I feel that way.
I also spent the entire time chasing her around, no sitting down calmly for Kaitlyn doing art projects...she rarely sits down calmly....My gut still tells me that she has developmental issues, she seems very different to me than other children her age (or even age 2).
Yes, I tried to sit her down, even thought she said "cake" she wouldn't sit and have anything to do with food and joining the group.
OK, enough with the pity party....
I'm 26 weeks today! Wow. I delivered the twins at 26 weeks and 6 days. I had been in the hospital by this point for a week already and had been on bed-rest for almost 10 weeks. Here I am up and about with no seemingly complications (except of course that my placentia is completely covering my cervix and could start causing serious issues at any time (or no issues). I have a ultra/sound today, so wish me luck on it clearing! I feel great pregnancy wise. With twins by this time I was having a really hard getting comfortable and sleeping (maybe had something to do with the fact that I never got out of bed), but carrying a singleton is so much easier.
I'm stressed over other issues: Maybe it's all hormonal being pregnant, but life's been a bit difficult lately, primarily financially. The real estate market has obviously been hit hard and that has hit our families wallet directly. It's frustrating to work a lot and not make any money. Seems pointless at times. Our house is little, so we are trying to sort and organize to get ready for the new arrival. The kids will both share a room. AS I need my 3rd bedroom for my office (again seems pointless at times)...Brian built closet-built ins to help fit both of their clothes, but then there was no room for my clothes (which took up 1/2 Kaitlyn's closet). Feeling cramped, cluttered and broke. Not a great time personally.
Oh again, enough with the pity party.
Gratitude thoughts: Kaitlyn is eating 100% orally, she's maintaining her weight, she is talking up a storm (hope you enjoy some of that after the vomit fest on the video), I am pregnant and I'm still pregnant, We are all healthy, We have a lot of friends and family who love us and care about us. (oh and just realized I've had over 200,000 visits to my blog since it's inception!) wow!
Thank you all for all of your suggestions/ideas, please keep them coming. Many of you have had questions, so I'm going to give some more detailed medical background of our vomiter:
-No nissen, we've refused. The GI has been ok with us not doing one, as K has gained weight on her own little nice chart (albeit with a LOT of work on our part making up for the vomit). I truly believe this will not help her. I know with a Nissen she would continue to gag and get phlegm - it will just stop the vomit from coming up, but isn't going to solve the problem of the phlegm
-Her left vocal chord is paralyzed from her PDA ligation
-I often take her in the shower with me in the morning, hoping it will help clear her pghlem. Also for a while she was on daily morning steroid (Pulmicort) breathing treatments, but it never made a difference in reduction of the pghelm morning vomits.
-She has her tonsils and adenoids (never been looked at), as I hate having her scoped as she is already so oral averse. Does not have ear tubes. She had 2 ear infections this year and 2 last year, minor ones.
-she is a very good pooper, never been constipated, EVER. That's why I've never felt her issue was delayed gastric emptying.
-She used to vomit up to 20x a day when gtube fed, she was fed 10hrs straight at night without vomiting mostly.....she could only tolerate breast milk, any formula and she vomited at night too (this was donated breast milk so it wasn't "dairy free diet" breast milk. Because she never/rarely vomited at night, I've always believed that she didn’t have a milk issue. It's when she's awake that causes more problems. As an infant she slept on in include. NO longer, and was tube fed (BD) laying flat with no problem whatsoever.
-We had tried all the hyper allergenic formulas at one time or another, and no reduction in vomit. (a long time ago)
-she recently (5 mo ago) tried a goats milk only diet (no cow dairy) for 2 weeks, with no difference in reduction of phlegm
-when she was RAST allergy tested (at 14 mo), no milk allergy shown
-never had any other signs of allergy (no blood in stool) no rashes (except for some recent eczema on her feet and ankles)
-I just set an appointment to see an allergist (which is months away)
-it was when we switched to a BD (Blended diet) that her vomiting finally got under control 2-3 times a day and we could much more rapidly give tube feeds and we even were able to get rid of the night pump. We still gave her last BD feed after she went asleep, but we finished by midnight, and she never vomited. Her BD is milk/yogurt based, (again, remember at night we could feed her BD asleep with no issues of vomiting and she was lying flat)
- Her vomits are now one of 3 types: - phlegm induced (she tries to clear her throat and ends up emptying her stomach), gag induced (she's a horrible chewer and often swallows food whole which results in a vomit) or occasionally unannounced reflux type vomit (just comes all of a sudden, but this is VERY rare).
-She's been on prevacid solutabs for almost her whole life (after zantac didn't do anything, nor did prilosec), then again, we never saw any difference with prevacid either (no reduction in vomit, I know, PPI don't stop vomit, just reduce the acid)
-I took her off prevacid about 3 months ago, and felt strongly that her phlegm seemed to decrease. I just started her back on it again, as I'm afraid of the damage to her esophagus/teeth from the vomiting., but I happen to strongly think that it's increased how much phlegm she is dealing with.
-we tried a few weeks on Periactin and went 3 days without vomit and hardly any phlegm (first time EVER), then she got sick afterwards 3 times back to back, so we haven't tried that again.
-she now eats 100% orally, only purees and doesn't "like" to eat, especially when she has all that phlegm in her throat (for obvious reasons) Not a good chewer, although she tries to chew meat, it takes forever, and for us to get calories in we have blend her food
-her lungs are doing quite well all things considered, she doesn’t have asthma, has never had pneumonia since leaving the NICU (which typical refluxers get a lot of pneumonia) (although has had some serious colds that go into her lungs - one time bronchitis) and has had oral steroids a few times.
-She's been on probiotics for years now.
-she never writhed/screamed with eating like you think of "typical" refluxers, not signs of being uncomfortable except the refusal of eating.
-She was on reglan upon first coming home from NICU, no reduction in vomiting, stopped years ago.
-we've tried Claritin for 3 days in a row with no reduction in phlegm/vomit.
Here are my ideas:
- She needs something to stop the production of phlegm. I think I’m going to take her off prevacid again and see if we get a reduction in phlegm like I think I did last time) as a trial. I'll put her on zantac to reduce the acid damage to her esophagus.
-now that she's not sick any more I'll put her back on periactin
-contemplating trying Domperidone (which I know isn't legal in the US), but my thought on Dom is that it is supposed to speed up processing time of food, don't know if she needs this but I've heard form quite a few other moms that it was a miracle worker for their vomiters. I'd like to know more why this drug was pulled in the US and how much of a dose I should give (Kaitlyn weighs just under 26 lbs)
-Mother's intuition...I KNOW her vomits are pghelm related not GERD. I took her off back off the prevacid on Saturday (not much difference in vomiting and pghelm), put her back on 2ml of Zantac (last night) and last night gave her 5ml of Periactin before bed, and LO AND BEHOLD, she wolfed down her hot cereal this morning in 15 minutes, at the ENTIRE bowl (again with us spoon feeding her - we normally Can NEVER get the entire bowl in her due to all the pghelm and knowing she'll vomit if we push it), and NO pghlem and NO vomit!!!!
The question now, should I give her a daytime dose of periactin also? Last time on Periactin I gave her 5ml at night and 2ml at nap time. We had 3 days of no vomit (which was a first ever).
what's causing her pghelm? I know periactin is given to oral averse kids to increase appetite, but it's also an antihistamines, right? Claritin didn't seem to do anything