Monday, June 7, 2010

Mom Wearing Puke

I am beyond exhausted.

Granted, I did get more than two hours sleep but still, beyond exhausted.

We were up with John last night and I say we proudly as my husband who could usually sleep with a crying, screaming baby laying next to him in the bed, kicking him in the head, woke up to John's discomfort and accompanied me downstairs to try to settle our unhappy little boy. Although I was not happy being up, not that I'd fallen asleep, it was nice to have company in my misery, our misery. Not sure if it was the teething, the stomach or both, but John was not a happy baby last night, and nights are usually his forte. Although he has had his moments, for the most part fast asleep by 9pm up around 5:30am. Not bad and I can't complain about that, especially in a 6 month old.

By his toothless smile that will melt your heart in nano seconds and chunky baby thighs, you'd have no idea that John has suffered with stomach issues since birth, let alone stomach issues at all.

John has acid reflux, and not just the garden variety kind.

The puke-up-to-5-times-after-he-drinks-a-bottle-kind, retch-in- pain-scream-and-holler-kind. The kind that makes you call the doctor because you think something is seriously wrong, not want to give you baby another bottle kind. The kind where you feel that everything that goes in his stomach is doing more harm than good kind. And it's not JUST Acid reflux, he's got a little Delayed Gastric Emptying mixed in there too.  

This has been something that has plagued him since day one, when in the hospital, my husband went running over to the John's hospital crib because he thought he wasn't breathing, and there he was, choking on his vomit.  After a brief stint in the NICU and test, after, test, after, test, we have found that so far it's just reflux with DGE.

If it was only as simple as it sounded.

We've had plenty of spit-ups, where you wonder if he even got any of the bottle. And plenty of vomits where you wondered when you infant son suddenly transformed into a geyser. Although messy and slightly disturbing, it's not the vomiting that has been the real issue, it's the irritability. The bouts of irritability that can last up to an hour multiple times a day, that leave my very happy, calm and cheerful baby, retching in pain, back straight, face red and screaming. The irritability that makes you close to tears, on the verge of thinking you should immediately drive to the ER, wondering how to give him some relief and wishing your child could get a break from this seemingly harmelss thing called reflux.
You'd think the 4 medications, equaling 12 doses throughout the day, that he was on, Prevacid, Ranitidine, Maalox and Eyrthromycin, would give him some relief, and it does give him some relief, but it doesn't seem like enough.

And, here at 6 months, what we've come to find is that, solids are not our friend.

This is the age when he is supposed to be trying new fruits and veggies from green beans to bananas.This is also the age I was hoping to get some relief, after all, most my friends whose children have experienced the same issues received relief when their child was more mobile, sitting up and starting solids, so naively, this was what I was expecting. But John's first, oh wait, second stint at veggies, proved to be yet another set back. After we'd gotten more relief than expected from starting Eyrthromycin, I actually thought we'd beaten this thing, for a week after starting his fourth medication, he was perfectly fine, no irritability and very little vomiting. A day or two into starting solids, the vomiting returned and a couple days later, the irritability was at full force, he was once again, retching and twisting in pain for hours on end. So here we are, back to baseline, back to his bottle spiked with rice cereal, barely what he does best.

It hasn't been easy, especially when you are really just waiting to see if and when he'll grow out of it. I'm learning that dealing with reflux, is a trial and error, wait and see kinda thing and that's hard to do when your child is in pain, when the pain is daily and there really are no answers.

You feel helpless.

So, in my search for some type of online forum or support group. I came across this group, which has since changed their name, but used to be called Moms Wearing Puke, as if there couldn't be a better title. But for one reason or another they are now called, Kid's Health Support, and I love it, along with the great doctors we have been lucky enough to have, it has been my saving grace. I posted a thread one day and two days later had 5 responses. And sadly enough, there is nothing like connecting with moms who along with their children have been in your shoes. Nothing like knowing that acid reflux doesn't always go away in 6 months or even a year, some type of food intolerance isn't unheard of, and that they too have struggled. It's somewhat comforting to hear of other's journeys, paths, disappointments and success' when it comes to Reflux and DGE.

So for now,  I've become probably a big pain for my doctors, calling every time things go from good to worse, taking notes, making close observations and trying to educate myself and inform myself on how to help my son until he grows out of reflux.

If you can't be the voice for your infant, no matter what the issue, who can?

I guess I've just got to accept that fact that until we get this thing under control, they'll be plenty of vomits, steps forward, as well as steps back and days holding him while he retches in pain.

And until we get his reflux under control, I'll be a mom wearing puke.

If you child is suffering from Reflux there are some great websites out there for online support:

Kids Health Support

Reflux Rebels

Living with Reflux

If you know of any other websites or support groups that have helped you, please let me know and I'll post them. And as always, I love to hear your stories and comments.

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