At the playground

Rory enjoying the weather with mommy & daddy. It's supposed to rain for the next 4 days.

Rough Night

As I suspected, Rory had a rough afternoon and night. She was crying and whining most of the afternoon, which is totally not like her. It must be the dang molar, plus she was gassy, which is really rare for her. Her little tummy is not used to too much food. She completely refused to take a bite of supper last and eventually had a meltdown. Then, I was rocking her to sleep and she kept holding her breath. I was wondering what was wrong and then she tooted. LOL! She cried on and off all night, and was up with the birds at 6am. This meant a 10am naptime, instead of 12pm and our whole day was out of whack. On the plus side, I got a lot done this afternoon, when I would normally be napping. :) I made some cold salads this afternoon, we'll be bbqing and going out for ice cream. Hopefully she won't be too tired, since she only napped until 12:30pm. Bedtime will be early tonight. YAY!!! It's so darn hot in here. Not that I'm really complaining, I suppose.....but, well, yeah, I am...it's gross in here!!! We have zero air circulation in the apartment. YUCK! Rory is back to her normal self today, not wanting to eat. I wonder if her high chair is playing a role? She ate a wonderful lunch yesterday....at the coffee table sitting in her recliner. Something to consider, I suppose. Maybe we should get her her own table and chairs???

Blast from the Past

Rory has never ever been a good eater. First it was fighting the bottle. She drank her first 6 oz bottle at 8 months of age. Then we started cereal.
This video is when Rory first started eating baby cereal. She didn't much like it, but we knew she was getting some. She has always been so aware of everything, as you can see. This video makes me laugh cause she is so cute, but she's been stubborn from the start. These feedings are what we now refer to as the good ole days. She eventually boycotted cereal for good a few months later.



This next video is when she began refusing cereal altogether. She even holds her breath at one point. She definitely knows what she doesn't want, even at this age.

Spit up? What's up with that?

Rory has never ever "spit up". She's always been an all or nothing puker. I know I mentioned yesterday that she was spitting up in her mouth. Well, today while we were coloring she bent down to pick up a crayon and spit up about 2 tbsps worth on her coloring paper. She looked up with the most disgusted look on her face!! I threw the paper away and wiped her mouth and she carried on about her business. It's just so odd. As I've thought all along, I think prevacid is crap for Rory. Both her GP and Pediatrician have refused a medication switch in the past, stating ppi's are all the same. (Proton Pump Inhibitors-they're supposed to stop acid production). Well, I can assure you her spit up smelled like acid. I feel bad for her because this has happened to me on occassion, bending over and throwing up in my mouth...YUCK!!! I don't know what her deal is lately. She didn't eat lunch or supper yesterday. I made quacamole to try, but she didn't like it. I let her try to feed it to herself at suppertime since it's thick and sticks to the spoon. Well, she gunked it all up in her hands, got an itch, and smeared it all over her face and in her eyes. She freaked and I wiped her off as good as I could....and while she was crying it was coming out of her eyes!! UGH. Why do I bother. Today, though, she was an eating machine. She didn't eat breakfast, but for snack she ate 6 cheerios, 2 Gerber lil' Crunchies, and for lunch she ate a tbsp chicken brocolli soup, 8 very tiny pieces of ham, and 6 very tiny cheese cubes....not to mention she kept taking bites off my cheesecake!!! Seriously, this is the first good eating day in FOREVER!!!! It's hurting her tummy though, cause she's already cried out 3 times during naptime, which she never does. I hope this doesn't mean she'll be up tonight.

I have a suspicion that since we cut her prevacid back, and switched her from a split dose to a nightime dose that she may be getting hungrier during the day. Prevacid has always screwed with her appetite. It would also explain why she is puking and spitting up. There is less of it in her system during the day. I don't want to start messing with things too much before her appts, but I am thinking about adding Zantac in the morning to see if that will help. She hates it, and it makes her gag and retch and occassionally vomit.....but it might do the trick if she can get it down. We shall see. I also have to run it by Mike. Will keep everyone posted.

She puked AGAIN!

I don't know what's going on with her? It must be the new bottles....maybe she's getting too much air....it can't be the ham cause she only ate that today, and this is the third time she's puked this week. Well, there's no way I'm investing even more money on a new bottle system for a 14 month old. These bottles were so expensive....I bought them out of my child tax and didn't tell Mike how much they were, cause I knew he'd have said NO WAY. But I got so sick of her spraying everything with the playtex ones. I'll give her another week, then I might have to go back to them. I thought the puking days were behind us. 3 times in a week isn't really bad, but when you get use to not being puked on.....well, it kinda stinks (LITERALLY).

Not only did she puke once tonight....it was actually twice. She was nice and bathed and had drank about 4 oz, puked on herself, changed her pj's, wiped her down, changed her pamper (she pees when she pukes) and sat down to give her the rest of her bottle, then, blah, all over her, me, and the chair.....lather, rinse, repeat, drank 4 more oz and off to bed with her.

She's been doing alot of spitting up in her mouth. Mike notices more than me. He came out to the kitchen and asked for her cup so he could give her a drink of water cause she made the puke face. It was sweet, in a sad sort of way. He's really an attentive daddy. :)

Rory gained!

I took her to be weighed this afternoon because I was SURE she had lost weight....she just looked skinnier to me....It must be because she is growing taller. Anyway, she weighed in at 18lbs 1 oz!!! Which is fabulous. I just don't know how she gained almost a pound in less than a month....it is so not like her!!! And she barely eats food. Today she drank 26oz of formula though, and last week there was one day she drank 30 oz....so it has to be the formula. Which is why I'm so scared to cut back on her formula.....it wouldn't matter as far as hunger goes either. We had been trying a new schedule for the last 2 weeks where we cut out the afternoon bottle in lieu of water, so she would go from 12 to 5 without eating....nada, didn't help at all. And it gave me super anxiety because I was making her go 5 hours with eating. But we had to try it to prove to ourselves it's not hunger based. So I added the afternoon bottle back yesterday. We didn't really cut down her formula....just pushed the afternoon bottle to supper time....now we are just skipping a bottle at supper time. She is currently getting 5 bottles of formula a day: early morning, breakfast, lunch, afternoon and bedtime and at night if she wakes up!! Probably why she keeps gaining I guess. I CAN"T WAIT TO TALK TO THE NUTRITIONIST!! Maybe she can help me figure out a better schedule. It's not that I need permission, but I can't cut down her only source of nutrition without some guidance. Wow, this got long.....I must admit though, journaling in this blog has really helped my stress level. :) Mike fed Rory supper tonight too!!! Well, she didn't eat....but it was nice to hear him complain about her eating too. We need to be on the same page, and it's hard for him to understand my level of stress and concern for Rory if he doesn't experience it himself. I LOVE that he is wanting to feed her lately, and I'm really hoping the feeding clinic will request him to feed her more! :)

Rory eating soup....momentarily

My batteries had enough juice to do a video, YAY! It's dead again, but oh well. I had to capture Rory willingly taking a couple bites of soup!!! She gave up rather quickly though. It's a short video because the camera died, but yeah, there was just more swatting....no eating, so you didn't miss anything.....I just don't get her. She clearly likes the soup. Maybe she doesn't want me feeding it to her, but wouldn't hunger override the need for independence?? I don't know.....I'm still stoked that she ate the soup, especially since I added pureed BROCOLLI!!!!!! A VEGETABLE!!!!!! Oh Yeah!! 2 Weeks until her feeding clinic appointment!! Still waiting on the paperwork to arrive.

Some fun with baby tricks

When you're a stay at home mom, you find yourself doing silly things sometimes for entertainment. I inadvertently taught Rory a trick we like to call "buckethead". It started out in the beginning as just having fun, but she now LOVES to put things on her head...hats, blankets, her toybox....she does it all by herself too. I caught her this time, and figured I'd get her to dance like a little monkey too.....she's my personal monkey....hehehehe......she's a good sport though :)

To eat or not to eat

Rory has been eating! Not much, but eating nonetheless. Mac n' cheese for the last 3 days. Christine suggested trying some cream soup. I had tried vegetable and tomato, which she didn't like. Cream of chicken made with whole milk....she ate it!!! I don't know how much because I didn't measure, but she had a good ten baby spoon fulls before starting to spit!!!
It's so odd that she cycles like this. And why does she always seem to improve once appointments are made?? It drives me crazy, because of the conflicting emotions...I'm HAPPY she is eating, but AFRAID she will stop again after our evaluation.....or even before then and it's one less thing I can feed her. I've been here before, fully expecting that we've turned a corner only for her to stop again.
The reality is that just because she is eating noodles and soup this week doesn't really change anything. She still can't eat small pieces of fruits or vegetables or meat or bread or yogurt, or a quantity more than a tablespoon or two before quitting, and the tongue thrust thing is just too hard to ignore. But If I make a list of what she eats, it really doesn't look bad.

What she will eat:
Cheerios
Cheddar/Mozzarella cheese cubes
Gerber Lil' Crunchies
Cottage Cheese
Cream cheese
Mac n' cheese
Mashed potatoes
Chicken Soups

I mean, it looks like she's just picky.....but when you look at quantity and how selective she is, she's not eating enough....UGH...the whole situation is going to put me in the nuthouse. Am I just crazy?? I hate feeling crazy when my kid eats!!!! Then she has a meal where she doesn't eat, and I'm like, "okay, I'm not crazy".......how SAD is that???? Well, I'm HAPPY today, that's what I know for sure....because I cracked a can of soup that she liked, without having to make it homemade.....I'm starting not to care too much about sodium and sugar and processed stuff....I just want her to eat...it's not like she's eating a whole can of soup anyway, or pounding back twinkies....YAY for canned, high sodium, cream of chicken crap!!!!
Well, naptime cometh.....not feeling very well today....but HAPPY!!!! :)
Boy, I think I am crazy. LMAO!

Reflux reflexes

So, Rory threw up again this morning. I'm guessing it's because of that molar she's cutting. Children with reflux tend to flare up when they are teething. It's amazing how fast the mother of a puker can think....I like to call it the reflux reflex...........as soon as I feel her retching this morning, I think, "couch, carpet, or coffee table?".....so I plop her on the coffee table where she proceeds to empty her tummy. Hey, it's better than the couch or carpet....they've already taken the brunt of the reflux in the past. So I sop it up, wipe her off, change her pamper, disinfect the coffee table, and make another bottle. C'est la vie!

I Love Mike

I was out for the afternoon to a wedding shower, and left Rory with Mike. On the way home, I kept thinking about what I was going to try to feed Rory for supper, and when I walked in, he had already fed her supper ( mac n' cheese again), cheezies and cheese cubes! It was sooooo soooo nice to have a break from doing it. I'm thinking we'll have to have daddy feed her more often! YAY! I was hoping she'd have a big poop for him (since he doesn't DO poop), but nope, she dropped it as soon as I walked in. Oh well, still didn't have to feed her.....YAY. She probably won't poop for 3 days since all she's eating is mac n' CHEESE, CHEEZIES, cottage CHEESE, and CHEESE cubes. Wish she'd eat a stinkin' vegetable.

Mmmmm....pancakes

Supper was a huge success last night. I had hoped since she occassionally eats a few bites of Kraft Dinner, that she would like it....and she did!!! I don't get excited anymore when she does eat, it's more like satisfaction until the next meal. She's done this before. Anyway, I decided to try some homemade pancakes again. I haven't tried them in awhile. I was hoping that she could hold them and take bites herself, which she prefers over me feeding her. Yummy pancakes smathered in syrup.....she didn't like them. Oh well, not surprising. At least I have leftover mac n' cheese for lunch. :)

Why, oh WHY???

Why is it that my wonderful daughter, who sleeps through the night 90% of the time, always always always has a shitty night when I want to have a couple drinks????
It's not like I get drunk, no no no (I know better). But I have just enough to kick insomnia's butt for a very rare good night sleep. And what does she do?? She decides to cry off and on all night. There are a few possibilities as to why....(1) She ate 8 whole pieces of homemade macaroni and cheese for supper (that's 16 bites btw!!! YAY) (2) She is cutting a molar, which is odd since she only has 4 teeth and(3) She thought it would be poetic. :)Who knows, but one thing is for sure, I AM TIRED!!!!

Rory having breakfast

This is the video I took to the pediatrician. I was going to do some new videos for the blog but my camera batteries are dead. :( Go figure. Oh well. Funny story, when the pediatrician was watching the video, she asked if I was serving "quiche", and I was like, "no, it's burnt toast and cheez whiz". LOL. This day I was trying to see if she'd eat "crunchy" toast since she likes crunchy cheerios. She won't eat soft, buttery toast, so it was worth a shot. Needless to say, she doesn't like burnt toast either. I don't blame her though. This is how crazy I've become with meal ideas!!!

Spider-baby

Spider-baby, spider-baby, does whatever a spider-baby does.....

(and yes, she does this on her own!)

Rory's Rash last week

This is why we think she might have food sensitivities. Usually she breaks out in a pimply red rash around her mouth, but this rash was different. Still haven't figured out why. Thankfully in went away after a couple hours.

Improvisation!

Okay, so I used spoons! It was all I had. The 200 popsicle sticks I bought are now useless so these will do. I'll save the other six spoonless ones for feeding her myself....hopefully if she likes them, she'll let me feed it to her. :)

The Homemade High Calorie Ice Cream Pops That Weren't

Thanks to Jedd's Mommy over on the reflux boards, I was inspired to make some homemade popsicles for Rory. 1 cup whipping cream, 1 package Carnation Instant Breakfast, 1 banana divided by 14 ice cube slots equalled about 75 calories/pop. I bought some cute little sticks so she could feed them to herself and after all was said and done......the sticks were covered in a dye that spread on my fingers and through the pops!!! Can't feed that to her. :( But, I didn't give up and improvised on the next batch!! Taste test later!!! She didn't like it unfrozen, so we shall see!!!

Oh the irony!!!

So, Rory hasn't vomited in about 6 weeks, ever since we eliminated eggs from her diet....until I decide to create a blog about her reflux. What does she do? Vomits her bedtime bottle all over us! I kid you not! It could be for a couple reasons. (1) She fell and put her tooth through her lip and cried and bled a lot. (2) She ate a few bites of potato for supper. (3) She thought it would be poetic. :)

About Rory

Birth weight: 8lbs 11 oz
Current weight at 14 months: 17lbs 13oz (not on growth charts)
Current height: 28.5 inches
Upcoming appointments:
Feeding & Nutrition Clinic June 10th
Pre-op appt with GI June 26
Gastroscopy June 27

We're beginning to suspect Rory may have other issues related to her GI system besides reflux. Since she's been on medication since 1.5 months old, she should be responding to treatment and eating. We suspect food sensitivities play a part. Either that, or her reflux has caused some behavioural feeding issues, such as tongue thrust, refusing to swallow, spitting and throwing food, swatting, etc. Either way we are on the brink of further investigation (FINALLY). It took me taking video to the pediatrician for her to listen to me regarding her feeding problems.

Rory's Lunch - A typical feeding May 22, 2008

GastroEsophageal Reflux Disease (GERD)

Rory has GERD. Children with GERD are not your "typical" refluxers. They are thought to have reflux with complications, including but not limited to failure to thrive (poor weight gain), feeding difficulties, pain, poor sleep, and vomiting. These children usually require medication to protect the esophagus from the acid in their stomach. The acid comes up because of an immature LES, the sphincter between the esophagus and the stomach. Most children outgrow their reflux between 6 months to a year....oh, how many times were we told that in the early days???? Rory might have stopped projectile vomiting across the room multiple times a day at 6 months, but now she has what is called "silent reflux". She learned how to swallow it. That is not to say she didn't vomit anymore. Occassionally she would vomit on her Prevacid or her Zantac (that stuff is nasty). Or she would stick her hands down her throat like a baby anorexic and up it would come....then there are the colds and coughing.....the inexplicable reason as to why she vomits after eating eggs? Nope, she's always good for a surprise vomit once and a while.

That's where I'll start I guess. The vomit days :). Those horrible days that are so vivid in my mind still. I will honestly admit we were traumatized. Me, Mike and Rory. Two fools in love who made a baby that came out spewing like Niagara falls. We knew very little about babies, but we were pretty sure, as we studied the vomit sprayed on the wall and the floor and the baby and us, that this was NOT cool!!! 6 months of puke....some days 4 times a day, some days 6, some days once, though these days were few. We fed her constantly.....feed, puke, clean, repeat. She never drank more than a few ounces, but it ALL came out every time. Doctors would say, "oh it looks like more than it is".....When she's turning red in the face from retching, she's dry dude!!! Oh, and they said, "only feed her every 3 hours no matter what she takes"....well, had we done that, she'd have been dehydrated and on a tube.....I know it!

Failure to thrive, that was her diagnosis in the hospital at 2 months old. How could this baby, who we've been slaving over trying to feed and keep still and elevate not be thriving. It was a huge slap in the face. No one got it. Hospital for reflux??? What the hell is that woman doing to that baby? Doesn't she know how to feed it??? It's just reflux........UGH!!!!

But the puking eventually waned, and our struggles to feed her continued. "Reflux gets better with solids" the doctors told us. What they forgot to tell us was that some GERD children can have major feeding aversions.....something we soon found out for ourselves.

While I'd love to chronicle every moment of her past, been there done that.....so, on to today....this is our struggle with feeding Rory.......Oh, and I'll add some fun stuff too....Cause she is such a fun, happy, social baby. Smart as a whip, despite her reflux.

Life with Rory

Rory has been a dream come true, life with Rory's reflux.....not so much.
Now, most people know nothing about reflux, or they're under the same misconception I was before having her...... Reflux means spit up. Period. End of Story. What I have learned over the past 14 months is that reflux is so much more than that. And while I've created this blog to chronicle our own struggles, I want people to know that we are the lucky ones and that I am aware of that. Many families deal with chronic vomiting, tube feeding their children, dehydration, malnutrition, excessive crying and sleepless nights.....For us, our biggest hurdle with reflux has been getting Rory to eat. I hope that this blog will educate people about reflux, but mostly I am creating it for my own sanity. We have 3 weeks until Rory's feeding evaluation, and I'm expecting it will be a long 3 weeks........