Wednesday, May 28, 2008

Continuing the Vomit plea post

I've been making some updates to the end of my vomit plea post.

But this deserved it's own post:

First of all THANK YOU everyone for all of your suggestions, I'm digesting them all, going to copy many of them and MAKE Kaitlyn's doctors do something!! I've read every single one of them (here and on Stacy's blog too, thank you Stacy for posting my plea on your blog:


Mainly though this post is a huge sense of "relief" I'm feeling tonight. I feel like jumping for joy and elation.

I think I know can better understand why I get so depressed and can't stand feeding Kaitlyn. I mean REALLY can't stand it. I think I may have been serious mental alert-watch myself if it wasn't for my nanny doing the majority of the day-time feeds 4 days a week. There is NO way I could feed her 7 days a week. NO WAY. My husband caught me the other day bawling while sitting feeding Kaitlyn, slumped over, at my wits end. (I don't normally post about this stuff). (oh, and my heart goes out there to all of you readers who have to feed a feeding disorder child every meal every day....This is serious stress for the mother here and worth a whole post on the subject.)

We started K back on Periactin 3 nights ago (so 2 full days of feeling the effects). The first morning after the first dose (5ml) her morning feed was amazing, she ate her entire bowl (or more correctly we fed her as we always do) of oatmeal, (that we can usually hardly get down with all the chocking/coughing/pghelm) in 15 minutes!!!!. And this happened with no pghlem whatsoever! The rest of her feeds also where pghelm-free until dinner.

We went all day with no vomits until the night-time feed, when she was showing some minor (not as bad as normal) signs of pghelm/coughing/throat clearing so I stopped the feed without finishing, BUT it was too late and she emptied her stomach on a throat clear.

Today (the 2nd day) we gave her a nap-time 2nd dose of Periactin (smaller, just 2ml) in addition to the night-time dose and lo and behold it was a NO VOMIT DAY.

The drug is supposed to be sedating, but I haven't seen much of that. She still took an hour 1/2 to go to sleep tonight (after giving it to her, which can be normal for her after putting her to bed if she got a long nap in).

But what I have to say the most amazing thing was when I fed her dinner tonight was that I got her whole dinner in with no pghlem. She even wanted to eat. She asked for the spoon and took about 6 bites of her own food (then refused, so I fed her the rest). I was finished in about 15 min max. It was actually a pleasure. a PLEASURE! we had fun together and giggled and played.

The love I'm feeling for my daughter tonight is especially indescribable, being forced to eat when she feels so horribly. she is one amazing little girl.

So this is how it's supposed to be??? I can now understand a bit (or have some sympathy for myself) why I'm so depressed all the time over Kaitlyn's feeds. It's really, really, really awful especially when you work at feeding her for 30+ minutes only to have her vomit it ALL back up again. It's all I know. Every meal. 4x a day. Every meal (including prep time, and vomit clean up time takes about an hour) Can I say how extremely, horribly awful it is normally? And that's my "normal" and my living-torture hell, not to mention how poor Kaitlyn feels.

Seeing how much better/easier it can be was an eye-opening experience for me. Maybe I will really be able to parent my new baby. (I've been terrified, as it's been sooooooo hard up to this point without much improvement).

I now know Kaitlyn needs antihistamines.. Now to get her doctors on board so we can come to the bottom of why it's happening in the first place (as I hate having her on the drugs, but I'm the one who suggested the periactin in the first place). I'll probably want to explore other ones (that so many of you have suggested). I don't care as much about the "appetite stimulate" side-effects of periactin, my gut tells me that if the pghelm stops maybe she'll want to eat...

(oh as I side note, I had a bout of morning sickness the other night (bleh vomiting -took my prenatal vitamins on not enough food in my tummy), and after the heaving was done (thinking about Kaitlyn the whole time), I had all this nasty pghelm in my throat that kept coming up on it's own for about the next 20 minutes. I can't even imagine being forced to eat while this was happening. Poor, poor Kaitlyn.

Oh and a few basic comments on some of the comments you've given me:

Kaitlyn's pghlem has always seemed to be in her throat (not her lungs), she always to be an EXTREMELY noisy breather (upper respiratory) until we got her on the blended diet. The Pulmonologist was never worried about the stuff, as it was upper. But it's also always been worse in the morning, she never gave me any solutions, and breathing treatments never seemed to make a difference. She doesn't snore at night unless her neck is positioned funny.

Does she really need a motility agent???

Let's see how the next week goes....I'm also already afraid of when I'm supposed to "cycle off the drug"...

Deep breaths

A funny video of Kaitlyn a month ago practicing some "deep breathing" I think she got that from watching a Dora video or something. You'll also hear some of her quiet talking as well as some seriously bad eating behavior (trying to work on Katilyn feeding herself (which we know she can do as seen by a prior video). Once we get back to "our feeding her" she shapes back up to her post Feeding Therapy behavior.

She's sick in this video, but her cough at the end is very typical as to what we hear all the time (with feeding) when she's not sick.

It made me giggle. Enjoy!

Monday, May 26, 2008

26 weeks 6 days

My beautiful twins together for the last few days (October 2005, 26 weeks)

This night (in 2005), when I was 26 weeks and 5 days pregnant, I started going into labor in earnest that couldn't be stopped. Not long after midnight, my fever really started breaking and we know that I had to deliver. I remember this night like it was yesterday. I had just spent the last 3 months lying in bed and I remember telling the L&D nurse over and over No, no, no, it's too soon, I'm keeping these girls inside of me until I'm 30 weeks. I guess nature had other plans for me and my daughters for the future.

Tonight, on the other hand (2008), I'm going to bed (my own bed) with no signs on impending labor, what a difference. I'm actually enjoying being pregnant! I feel great! (PP worries aside)

The pictures above were taken just a few days before I delivered in 2005.

Wednesday, May 21, 2008

Please help solve our vomit issues...


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) 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 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....

My pregnancy:

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!

UPDATE (5/25):

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)

UPDATE 5/27:
-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

Monday, May 12, 2008

Happy Mother's Day 2008

What a fabulous Mother's Day I had!!

Brian handed me breakfast in bed (even though I said I never wanted to "eat" in bed again after 10 weeks of it forced on me), flowers and the sweetest card, addressed to "Kaitlyn and Corinne's mommy" which of course made me cry. Brian fed Kaitlyn every feed yesterday, which is the best break of all for mommy. (Have I indicated how much I HATE feeding Kaitlyn?)

Kaitlyn woke up SICK again, (I guess we should have figured when she vomited in her bed the night before which she hasn't done in ages). Poor thing, I was complacent on turning on the monitor (it had been so long since she vomited once in bed) and Brian heard her crying when he walked by her room. Her cry is still so quiet we can't hear her. She was covered in vomit saying, "I'm ok, it's ok", my heart just melted.

Anyways, back to the good news of mother's day, even thought she was starting a cold, we decided to go ahead with our plans and take her to Train Town
in Sonoma County, which has trains to ride on, and mini amusement park rides. Kaitlyn had so much fun and of course I teared up again. Knowing that Mothers Day is all about seeing the joy in your children! Here are some pictures from the day! (as well as a few other recent pictures!)

Some Misc Pictures:
Pregnant mom holding Kaitlyn
Kaitlyn attempting to "smile" on comand on camera, she's not much of a smiler
Kaitlyn modeling her safety goggles
Belly pic of mom at 24 weeks
On a rare warm day, putting on sun-screen about to go in her kiddie pool

Kaitlyn has recently REALLY been looking at things up closely, this is new. We have to get her eyes checked out again.

Mother's Day pictures:
Kaitlyn on the plane ride, this was K's first "ride" on her own! No adults allowed
She couldn't figure out how to make the plane go up and down, but she tried!
Kaitlyn's first roller coaster ride with dad! She looked a bit nervous on the ride, but seemed to enjoy it!
Dad and Kaitlyn in the miniature firehouse in Train Town
A view of the "small" train as well as the miniature buildings of Train Town. It was so cute!
Dad and Kaitlyn getting ready for our ride (yes that's a washcloth pinned to K to wipe her constantly running nose)
A rare smile on camera!
Mom and Kaitlyn on the merry go round, what better mothers day could I ask for?
The family!
What a great day we had

On the ferris wheel
Feeding the goats
Mom and Kaitlyn feeding the goats

After we left Train Town, we went downtown to the town of Sonoma and picked up some bread and cheese for a picnic. We then went to a winery and had a picnic and I celebrated with a 1/2 glass of wine. Dad fed Kaitlyn and we headed home. (K didn't have a nap so she was one tired girl by the time we got home).

Wow, what a great Mother's Day I had yesterday! Thank you Brian!