Comfort designed by Mom

Since I've got Reflux on the brain, I might as well share, I just can't say enough about The Nap Nanny.

Since birth my son had trouble laying flat on his back from his reflux and would wake up every hour in pain, crying. We were afraid to let him sleep flat for fear that he'd choke on his vomit. And after feeding him we had to keep him upright for at least 30 minutes and then throughout the day, UGH! The wedge under the crib never really did the trick. And neither did the bouncer. But thanks to my friend Courtney, The Nap Nanny did. Upon hearing of our troubles with our little one, Courtney, whose son also suffered from reflux, introduced me to The Nap Nanny and kindly suggested I borrow hers. How could I refuse? Literally within days, John was sleeping through the night, more comfortable and more secure for both him and us. This amazing recliner, designed by a mother, is designed to increase comfort and improve the sleep of babies with colic, reflux, gas, colds, earaches, the flu and other special needs.And this couldn't be more true.We almost immediately found relief at night and it was a great device to sit him in after feedings, during feedings and everything in between. And when he suffered a bout of bronchitis at 6 weeks, The Nap Nanny helped him breathe better, sleep better and reduced the discomforts associated with Bronchitis as well. It is light, portable, we've taken it to my parents house multiple times and it's easy to carry it up in down the stairs, with a baby in your arm, unlike those chunky bouncers. It also comes with a washable cover, which is perfect for all you mom's of reflux babies out there, no stains, no mess. So now that he is growing out of it, he can turn loose from the safety belt, except from the occasional use when he is seriously miserable, we will be sad to see it go. But so happy and relieved we'd found it.

John today in his Nap Nanny after a feeding!

Tip: I know it comes with a hefty $120 price tag, but try sites like Amazon and Ebay, you might find a gently used one for less. Also try Buy Buy Baby, if they sell it in your local store they take coupons, their own and their competitors (rumor has it they also take Bed, Bath and Beyond coupons as well). Or maybe you have a baby and know of someone pregnant who might like this for their newborn, spilt the cost and everyone makes out in the long run.

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.

And we wait

When we found out we were pregnant with our third baby, I somehow felt we were testing our limits. Even though, I felt this baby would complete our family,we'd had 2 healthy children and 2 great pregnancies, I was sure we were testing our luck.
I'd gone to appointments with worry that spiked high blood pressure and held my breath until the heart beat was heard every time. And I'd sat through ultra-sounds with fingers and toes crossed. I didn't want much. The babies sex didn't matter, although I knew my tomboy of a princess Sophia would be completely challenged if it turned out to be another girl, competing for daddy's attention. So when it turned out to be a boy and a happy one at that, I'd felt like I cheated life's tendencies to throw you loops and turns once again and that someone must be looking down upon me. And then John's brief stint in the NICU and his daily struggle with reflux, DGE and the numerous tests he's have been through made me feel like maybe I was wrong.

Like I said before, I know there are worse things then reflux but nothing is worse than worrying about a child, waiting for a test result and looking for answers you're not even sure you are going to get.

His latest test, an Upper Endoscopy, took place Friday morning at CHOP after the Dr. moved up our previous scheduled date, probably hoping she could get answers too. And John handled it way beyond his 5 months. Taking it in like a champ, even my husband and I were shocked at his bravery. As the staff nurses entered the room to see this happy, toothless, smiling wonder, he flirted with them one by one, throwing chubby faced drooling smiles in their direction. He took needles like he'd had them hundreds of times before, no flinch, no wince, not even a look in the other direction to see what had happened, he just kept chewing on his Binky, smiling away.
And in the procedure room, as I held him and the meds took effect, he just dozed off, into his drunken state, comfortable, stable and trusting of what was going on around him.
More confident then I, the one who carried him into the procedure and signed the consent for for the doctors to sedate his little body to go poking around for answers.
More confident then I, who at the last minute, as the doctor dimmed the lights, and the team of nurses took their place and my husband stood by my side, doubted, in my quest to find out what irritability had been plagueing him, for a quick glimmer that I'd made the right choice.

And now we wait.

As the doctor returned to the room, he mentioned he noticed the small intestine seemed very pale in color, but the biopsy would tell us more. What does that mean? What is that? Anything? Something? My mind goes wild with thoughts, conclusions and diagnosis and my fingers go free on my keyboard as I search the Internet looking for answers that I don't find. And my thoughts dissect the doctors every word and expression.

And we wait.

And I watch my bouncing baby boy smile, grow and develop. He now sits confidently, he's found his fingers and recognizes his name. He shakes his head, smiles when I enter the room and makes my heart melt every time.

And we wait.

Maybe we wait for something that isn't there.

Reflux by any other name.......

" Mommy! John puked up again!"



This is a call my 3 year old daughter Sophia makes multiple times on as daily basis.



While my other children had no problems with their stomach, except for having trouble finding the right formula for Sophia, John's first 5 months have been plagued with challenges. Even though he is generally a very happy baby, bouts of Reflux can make his face red, his back straighten in pain and give several hours at a time of him being downright miserable. If he's not spitting up or projectile vomiting, he is dealing with this "chronic reflux cough". And it didn't matter what he was being fed, breast milk, regular formula, lactose free, whatever kind, it all came up one way or another. He takes Zantac, Prevacid and multiple doses of Maalox on a daily basis. He also drinks formula, thicken to resemble a milkshake, just to keep it down.

This isn't a problem that slowly developed or revealed itself. It's been since his first feeding day one. I remember my husband running to the side of the in-hospital crib thinking that John wasn't breathing and there he was, started to choke on his vomit. Within 12 hours after his birth, we were informed by the pediatrician on staff that John was to be transferred by ambulance to CHOP on suspicion on having a blocked or twisted intestine. I remember the doctor assuring me that I would be able to see him before he left, only I had no idea it was looking through the mobile incubator surrounded by the CHOP critical care team. Luckily his 5 day stint in the NICU found no serious issues. But unfortunately, the stomach problems didn't stop there and still continue today.

We have seen doctors whom we love and are great at CHOP but they all want to wait it out and see. It's so hard as a parent, when you see your child suffering and not improving, to wait it out and see. Finally, he has a MILK scan on Friday so we are hoping to get some answers as to what is going on and giving him trouble.

But believe me, I know it could be a lot worse. We could have a child with serious issues and when it comes down to it, reflux is bothersome yes, but deadly, no. I remember sitting in the NICU with my husband looking around at the babies there. Some seemed they had been there for months, their cubicles decorated with pictures and toys from home, the metal hospital crib replaced by a nice wooden one with soft bedding. I remember seeing the look on the parents faces. We'd met one couple, the woman had trouble conceiving and had experienced multiple failed pregnancies. Finally, after 6 miscarriages and many times at IVF, she gives birth to a beautiful baby girl, only to end up with her in the NICU and not much chance he would be coming home soon.

Ironically, her baby girl happened to be born the same day as John.

And I will never forget the look on her face as she stood crib side, unable to hold her newborn as I gripped mine extra tightly for fear of ever experiencing that emotion.

I will also never forget passing her, on the way out of the hospital, finally taking John home. She was surrounded by family, sitting on a bench just across the way from the elevators.

They had seemed to be consoling her.

But in her moment of grief, she looked up and asked "Baby John gets to go home today?"

Yes, I replied feeling almost guilty that I was leaving with my child while she was still there with hers.

"Way to go baby John!" she replied.....and smiled.

I will never forget her or the look on her face as she took time out from her grief to congratulate John leaving the NICU.

I just hope she is home right now, holding her baby.