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Tuesday, July 04, 2006

Disjointed thoughts/questions about poor Kaitlyn's vomiting

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.

24 comments:

Mindy said...

hey. I've been lurking around here for a while, reading up on your daughter whenever you post. I can't imagine all you guys have been through, and I admire your strength through it all. Even if you don't feel so strong, you are: I would have had a nervous break down long ago.

I just wanted to let you know that you are in my prayers. God can heal everything. Good luck, and keep posting.

Anonymous said...

Hi- I know I've posted this before, but what we did is slowly switch from bm to enfacare22 supplemented with it to that alone to Nestle Good Start. In retrospect, we should have gone just to Good Start. Its 22 cals. (enfacare) vs. 20 (in good start), and she kept more in which made it higher cals per day than enfacare in the long run.

Out of all of them, the Good Start was a godsend. The vomiting went wayyyy down. We spent the extra to get the pre-mixed version (our ped. is a neonatogist too and suggested that), and it really made a difference. I don't know if it was the water, different chemical composition, lack of shaking/bubbles or what but it worked wonders.

Here is the part I know sound wacky- the energy healer fixed it totally. ZERO vomiting after about 2 months, and she went from under 5% on the curve to the 90's over 6m. Please please please consider alternative healing to augment your treatment. It changed our lives. (Also, keep her in just a diaper when you can with a splat mat underneath). -E

Penni said...

Hi Liz, I found your blog and have been following your story. It breaks my heart. My dd was born premature as well and had horrible reflux. She vomited all the time and also never smiled. I have pictures of her as an infant and she looks so sad. Anyway, my gastro recommended switching formula to Nestle Good Start, It has the comfort protiens. I found this and her medicine made a big difference.

Also, on another website, I know a women who had a micro preemie like you and had the fundo surgery. It helped her tremendosly. Please email me privately if you want more information. Penni318I@aol.com

Good luck and I am rooting for you.

Kellie said...

First of all, (((((HUGS)))). This is incredibly hard to deal with and you are stayin as sane as anyone could. I'm glad that Kaitlyn is seeing a new GI in three weeks. Three weeks is a long time in "20/day throw-up world" but hopefully this new GI will have her/his head out of their butt. Kaitlyn needs a few tests. First of all, a pH probe is the catch all test for GERD. It IS the diagnosing test for GERD and it's amazing how many children are treated w/o ever having the test, especially our poor kiddos with severe GERD. Secondly, it sounds to me like Kaitlyn needs a gastric emptying scan. I'm not sure if she has had one but I would definately request one at her appt. If she is throwing up undigested food and gaining weight very slowly, it most definately could be DGE (delayed gastric emptying). These kids do much better on continuous feeds at slower rates and they tend to vomit massive amounts with bolus/hour feeds just like Kaitlyn. It's definately something to at least look into. Also, the thickening. It is worth a try. I know that you said she has never been on the thickened feeds. We used Simply Thick for 5 months with Eli for his aspiration b/c it is the only thickener that is able to thicken breastmilk. It may work for Kaitlyn and it is something simple to try. You also said that Kaitlyn is "attached" to her IV pole while on feeds. Have you looked into any of the Zevex pumps from your HHC?? You can have your doctor/GI write a script for them and fax it to your HHC for a Zevex Enteralite or Infiniti pump. They are amazing for infants/toddlers. They are lightweight, small, portable, have a "super mini backpack" (specifically request this), and work in any position. They will pump upside down and sideways with no flow error messages so they are perfect for children. They allow you to not be tied down to the IV pole during feeds. Eli was on Continuous 24hr/day feeds for over 3 months and we went everywhere thanks to our Zevex pump. I'm rambling on now and lost my train of thought but if all else fails, have a glass of wine and come on-line to your preemie parent friends for a good vent and cry. We're here for you!

Kellie
Carson 6-17-03 ~ 30 wkr
Elias 6-17-05 ~ 25 wkr

Stacy said...

Liz -

My heart breaks for you guys.

Call the new GI doctor - beg, plead, offer to take any available apppointment. Ask to speak to the Nurse Practicioner in their staff. They have the ability to get you in so much more quickly than a regular scheduling nurse.

We were told if it were reflux that Tanner would be irritable. One sign of irritation in an infant is if they hold their hands up in a "surrender" position. We were also told that one thing that would help Tanner's reflux was sleeping on his tummy. I know, that's a big no-no for SIDS, but it helped Tanner alot.

My prayers are with you - I know you just want you happy daughter back. And, I can't imagine being happy if I were vomitting 20x/day.

miraclebaby said...

I am so sorry you are going through this with your baby girl, it must be so frustrating. I wish I knew what to say to help you but I am thinking of you....

Maggie said...

Liz-
I can't offer any advice that you haven't already gotten. Please know that you are in my thoughts and prayers. I can remember when Sarah did her few months of vomiting 3-4x a day followed by an hour of screaming in pain. My hubby and I were at each other's throats. The stress, lack of sleep and too much worry made us all miserable. We ended up changing pedi's who then worked with the GI doc to get us in within a day.
Hugs~

Shannon said...

Oh Liz, I'm so sorry that you guys are all dealing with this. I'm sorry that I don't have any advice or words of wisdom for you. Darsie bottle fed with Good Start and she had the least amount of throw up from this. I would try to get her in to the GI doc sooner, too. I can't believe they are making you wait 3 weeks.

There is a Kaitlyn smile just around the bend...it will come!!!

Anonymous said...

If you have to try soy milk because it could be the dairy in the formula too. Just a suggestion.

Kim said...

I, too, wish there was something I could do for you. If there is, don't hesitate to ask. Thinking of you...

Jenny said...

this may help to get her to eat. check out this product. http://www.medela.com/newfiles/professionals.html

Jenny said...

i forgot to add that the nipple shield is not what i am talking about. its the other product :)

IME said...

I wish I could offer you some good advice -- I'm so sorry you and Kaitlyn are having such a rough time. Max just had moderate reflux -- he was really spitty and sometimes it seemed to cause him discomfort and sometimes it didn't. He didn't entirely outgrow it until about 15 months, but it would come and go in spurts. When he was younger, I did think there were certain things that I ate/drank that set him off (caffeine being the most noticeable). When he was older and mobile, there was definitely a relation between his physical exertion (straining, bending over, sitting up) and the spitting.

I'm sending all of you lots of prayers and positive thoughts -- I hope you find some answers soon.

Anonymous said...

Hi Liz,

I have been following your story for a long time. Your poor baby! It just breaks my heart. Get a new doctor! This is just awful, does he know what you go through, daily??? No, something can be done. I would keep trying until you get some REAL answers. If I can do anything to help, let me know.

Gary said...

Hey sis, wish there was something I could do to help. If nothing else, know that you have tremendous support from family, friends, and people across the globe. When things look dark, remember you've got all of these people sending you all lots of positive thoughts and energy.

Owen and River's Mom said...

I have micro-preemies that are almost 2. They had terrible vomiting, reflux and refusal to eat.

This is what worked... 100% Neocate fed, Prevacid 2x/day (around 10mg total at your daughter's age), night and day sleepy feeds, held upright for 20-30 mins post feed and burped frequently (which took forever), frequent feedings of small volume (less than 3oz).

They are 3rd percentile for weight, 50th for height. My kids followed their own curve for growth and never ate the calories that they were "supposed" to. In hindsight I would have fed them less now that I see they have always been able to grow. Especially as they got older, eating less was much more comfortable (2/3 of what docs told us was right).

As far as the timing of reflux resolving, we still have it, but it is much better. I've heard the stories of older kids having it, which can happen. Our feeding clinic says they see many kids like ours and most start to get better around 1 and by 2 can be off meds.

My biggest piece of advice is get your reflux medication right (Prevacid/Prilosec). After a few weeks, the pain will lessen. We thought one of our twins was just an unhappy personality. It was just because he was in pain. My kids rarely smiled or cried when they were younger (NICU babies, I guess), so perhaps your daughter will smile when she feels better. Now they are so happy.

This is just a part of our story. My email is jjohnson.nyc@gmail.com if you you find any of this helpful and have more questions.

best wishes!

Momma Monkey said...

I am by bo means an expert, but my Cousin has a premie with an oral diversion. She was born at 28 weeks and is still a tad behind, but doing much better. She is almost 2 adjusted.

She had similar problems with her vomiting during feeding and her tube. Same frusteraitons and everything.

She asked a few questions regarding the tube and Jordyn had grown so much since the tube was put in, it was no longer in the 'right spot' in her belly. That is it was too high and her formula was backing up into her throat. It was also doing that because although she 'required' a certain amount of calories, it was just too HIGH of a volume of liquid for her little belly tol hold at one time. So they fed her a bit, turned it off for a while, and started it again. Sure it seems like she was eating all day, but it greatly reduced her vomiting...

Tonya said...

OMG Liz.. *hugs*

I so wish there was something I could do to help you. I know exactly how you feel because I have been through the same thing however we found out the problem within weeks so it was dealt with. I cannot imagine having to go through it this long :( Whenever you talk about her vomit my mind goes right to "Bowel obstruction" Im sure she does not have one or they would have found it im sure.. I just wish there was more advice I could give you.. Hang in there.. all of you *hugs*

Anonymous said...

Would it help to leave the ped world and go to the GI world for some additional help/different perspective? The GI specialist I recently went to filled me in on some amazing new research/findings in the GI field. If nothing else, perhaps he could send you to somebody that has a strong background in ped GI issues...even if it means travelling.

Let me know, Liz. Thinking about you.

Maria Kallmeyer

Kristin said...

Hiya Liz... I've just finished reading your journey so far and the same thing kept coming to mind all the way thru your projectile vomiting routine.. lactose intolerance. Presleigh, my preemie, is lactose intolerant and we spent many many many hours cleaning up after projectiles.. at first we were looking at pyloric stenois as her father's family has a huge history of it (it is generally a boy disease, however, it is possible for girls), and then we switched to Alimentum for a bit but it was too expensive.. almost $30 a day in formula. Presleigh is now on Enfamil Lactose Free and we are finally almost sane at 5 months (3 months adjusted). Feel free to visit our blogs or email.

Julie said...

Liz- I am so sorry you are still going through this! I don't have any experienced advice but to say that Sugar Bean does take a high concentration of Enfamil with Lipil and Iron- a little more than one scoop per ounce of water to help her gain weight and the more concentrated it is the less spit up. She has been gaining weight on it- her little system just can't take in enough at a time yet. I would guess it is worth a try. I am praying for ya'll!!

Anonymous said...

Liz, I'm so sorry for all you and Kaitlyn have to go through every day I can't imagine how difficult your daily life is, I wish I could waive a magic wand and make every thing better.
Love
Kimberly

HHH said...

Liz- my heart breaks for you. I have been there , though not 20x a day. All preemies are differnt but I can tell you a few things that helped Hallie stop throwin up. We started Prilosec 2x a day. Her GI said 1x a day can never cover 24 hours? We tried all kinds of formula and the best for us were Neosure and Nestle Good Start. Hallie still is only 15-16 lbs and there is no way we could give her even 6 oz and she not throw it up. She eats on her own now but there was always a fine line between too much and just the right amount and I would make the dr tell me how many oz she needed of her 28cal formula a day, and I would make how much/many feeds she got. It seems like K is getting a whole lot for her size. I would deffintly try lowering the volume and adding a feed during the day. That would be the first thing I would try. Like I said, this worked for Hallie , hopefully K will start getting better. Hallie had to get her throwing up under control before she started taking a bottle again. Hang in there, I'll be keeping your family in my prayers. I cant really imagine how hard it is, 5x a day was killing me.

Anonymous said...

Hi, I am new to your BLOG but wanted to write, I hope I don't tell you things you already know.

My daughter has atypical reflux and multiple protein intolerance. She is on Zantac and Domperidone (licensed in the UK) and Neocate.

I discovered early on that it was the milk proteins and later other foods that cause her gastric pain and reflux. I switched her to Neocate after a fight with the hospital consultant and GP as I read it was the only formula available that she could not react to. It took AGES to work. At least a week - far longer than the Neocate website suggests.

After the week was over it was like magic. She started slowly to become like every other 'normal' baby. The acid smell had gone, she started to sleep, the eczema went, and the pain went out of her eyes.

I wanted to email and tell you to hang in there and give Neocate a chance before you switch again. There is a very good yahoo group called Neocate Kids. It is Australian based, but the people on the group are very knowledgeable and welcome new members – they have tons of experience and can support you.

Good luck. H

Ps. my daughter can't cope with dairy, soya, potato, bananas, onions, brussel sprouts, cauliflower, tomatoes - she has no allergies that we know of just intolerance. All gastro symptoms occur if the proteins travel through breast milk or direct (she is nearly 2 now).