Well, I belong to a few message boards where I go to find out help for Kaitlyn and all of her issues.
Her vomiting is bad. Really bad. I almost posted today a signle sentence: Help, I'm having a nervous break-down. Well, I'm thinking a bit more straight now, but I am going to post my plea for help that I've posted to a few boards - it's a few posts, hence why it's a little disjointed, but here you go:
Tonight I about had a nervous break-down. Seriously. Kaitlyn vomited about 20x yesteray and today. Yes 20 times! this is not spit-up. Vomit! Lots of vomit. over and over and over.
OK, I've about had it with my DD's vomiting, I know she's had it too. I'm absolutely convinced that she's miserable, and would be a completely different baby if I could just get her vomiting to stop. She still doesn't smile - it just breaks my heart. She's an "amazingly good baby" for all the vomiting she has to endure, she sleeps great, is content and generally good natured - she just doesn’t' eat and vomits a lot and doesn't smile or laugh like a 6 mo old baby definitely should.
My Surviving twin daughter was born 13 weeks early, she's now almost 6 months adjusted. She's now about 12.5 pounds. She's in the 5% for her adjusted age.
I'm fed up with her GI doc, I have an appointment with another one, but have to wait 3 weeks. I'm about out of breast milk - Well, I think she's got about a month or more left (frozen).
I thought I'd turn to all of you for help/advice/suggestions: Here's some "medical" background…. -paralyzed left vocal chord (it's "open") . She has a small amount of aspiration shown by her recent swallow study, but I think it was only when she first put food in her mouth, as she's not used to it - once she realized, she actually swallows quite well (as seen by the swallow study). Her first swallow study while she was still in the nicu showed no aspiration.
-g-tube fed (as she's lost all desire to suck, doesn't understand what being hungry is all about). She was always NG fed while in the nicu and when she came home. She USED to breast feed and suck a bottle decently well, she just never ate enough (according to the NICU so always had to be supplemented).
-She was taking a small amount (of cereal and some solids) by spoon, but that has since gotten bad, she now shuts her lips and wants none of it
-She vomits all the time. Sometimes worse than others. When she vomits "bad" it seems to go in cycles. Lasts for a few days.. Just when we think the vomit is a bit better, and even go a feed or 2 without vomit, then she vomits horribly
-She is fed: 3 one hour pump feeds of breast milk vol: 140 over an hour; then for 10 hours at night continuously (700 vol).
-We've started trying formulas, as my pediatrician found out that the GI doc didn't have her getting enough vol and the formula is more caloric than breast milk - she used to be on fortified breast milk, but I think it caused her to vomit more (it was phlegm thick formula vomits that she doesn't have without formula)-----We tried neosure again (that was what she was on as a fortifier and our pediatrician said preemies should be on that for a year (our pediatrician was a neonatologist - she's great); also tried some sort of milk protein digested formula called Allementum) ---when we tried these formulas, we tried them at the "night" feed time. She NEVER vomits during her night feeds on breast milk, it's at a slower rate. Well, on both occasions of the formula, she vomited horribly…..So, even though she vomits on and off with breast milk, she never normally vomits at the night feeds, and it was so bad on the formula - I stopped the feed, defrosted breast milk, changed it over, and then no problem….
-She was on reglan, it didn't seem to do anything-She's never constipated and never had NEC-She was on zantac - didn't seem to do anything, she's now on prilosec Any suggestions for us? Here's a few specific questions - -A question or thought I've always had, could she be having problems with something (diary) that was in m diet in my breast milk? Is that why the vomit gets worse some times more than others????
-What type of formula should she we try now? -Any other meds to suggest? - I really don't want to have to go the route of a fundo, as she does gain weight on her curve (although she's at the bottom of the curve - she's consistent).
-When might she outgrow reflux? I asked her pedi this, and she said that kids usually do, but that she has a 7 yr old patient who has it bad still…..ugh.
Uggh, I don't know I'm getting so desperate and miserable - I can't take the vomit any more. I want my baby to smile at me and not be so sad, I'm so tired of doing laundry (or my husband is at least), I'm so tired of always changing my clothes and having to be completely on alert for vomit patrol……I want her to eat!!! I'm tired of the g-tube and the pump. It's so awful to have to hold her while she's attached and carry around the iv pole. I know I have years ahead of me of the gtube…...
New post: OK, thank you ALL for your comments and suggestions....I'm too tired (and covered in vomit) and about to have a total break down to respond and answer your questions-
Basically we tried Neocate tonight, and I thought she was golden, fell asleep, went for about 60cc's then one vomit, then an hour later a huge vomit. I was in tears...went to change her, had her new clean pj's all laid out (I was prepared and hadn't changed her BEFORE the formula just in case), and then she proceeded to pee everywhere, then vomited over my shoulder, all over the carpet, down my shirt, and my DH is out playing hockey.....and yes it's midnight.
But as some of you suggested, this was switching cold turkey....no transition.
My ped says she needs 150 cal per kilo, hence the volume (and she's had fairly consistent weight growth), I wonder why such the big variation between docs? My ped is/was a neonatologist.
-She's ALWAYS upright, she vomits when she's sound asleep as well as awake, (no activity or pressing on belly), she had only a small vomit at her afternoon feed (on breast milk), after a huge one this am...ugggh, I'm so frustrated and exhausted and poor little Kaitlyn.
-there is a nutritionist that met with me when we last saw the gi, but I never met with just her, she sort of nodded and stuff - not much more than that.
-never have tried thickening feeds
-newest post: Well, that was last week that I posted the above and things are WORSE –
We have been trying 50/50 breast milk/neocate with no success. Incredible vomit. So tonight I gave up and for her bolus 6pm feed I went back to just BM and NO VOMIT! Tonight on her night time feed, breast milk only and NOT vomit!
I’m so afraid, because we have only about 1 month left of frozen BM. What do I do.
-I also just read a link on the boards here that her dose of Prilosec is WAY TOO LOW. She’s on 1x/day 6ml and she weighs almost 13 pounds (she just was increased from 5ml to 6ml).
-She’s never had a PH probe.
-She’s always elevated, but it really doesn’t seem to make a difference.
-And some other stuff: she’s never really upset. If this was “true” reflux, wouldn’t she be arching, upset and colicky? She’s not. She can be sound asleep, completely upright (chair upright) and the vomit will come and wake her up, she’ll projectile and then fall back asleep, then more vomit and then back asleep.
-She “burps” a lot, and vomits.
-When she passes gas or has a BM, she vomits
-Should we try Enfamil AR?
-Shouldn’t she be on a higher dose of Prilosec
-She vomited about 20+ times each day for the last 3 days. So tonight back on BM was a huge deal, but I’m almost out!
-If it were allergies, wouldn’t being on neocate solve the problem – it’s obviously not.
-Sometimes she gets these gagging/retching/turning red episodes while she tries to get stuff out of her throat (sometimes it’s just morning phlegm, no milk)
-her vomits are just liquid milk/forumla, nothing digested
-And remember, she HAS had vomiting issues on just BM, but they come and go- and it’s frozen milk, so I don’t know what I ate then.
UGGGGGHHHH, what do I do. My poor little baby. Please help me from having a nervous breakdown. I can’t deal with 20+ times of vomit a day. Sorry this is so disjointed….It’s actually about how my brain is feeling/working right now. I can’t seem to get a straight thought out of my brain that doesn’t have to do with trying to figure out how to make it stop.
There's a video of Kaitlyn vomiting on my blog if you'd like to see it from the 2nd to last post. Well, thanks for letting me vent, cry and scream here…I'd love any suggestions you may have.