Tuesday, April 27, 2010

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.


  1. Serious...You are an amazing Mom and person! Your blog is snazzing up! Love it!! Next step....Twitter!!!! Courtney

  2. Hi danielle, I love your blog!! Keep posting!

  3. 2 for 2. I'm impressed!

    I felt the same way about things when Charlie was a guest of the NICU. My kid looked like he was misplaced...a linebacker amongst paper thin butterflies. Everyone has a story Danielle~EVERYONE. I'm glad you're telling yours.



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