We're Singin' The Reflux Blues - A Lizzie Update

Ever since Lizzie was a newborn she has suffered with reflux. Not just an occasional spit-up, I mean full force projectile vomiting anywhere from one to five times a day. When she was a little bitty, I kept expecting her to grow out of it like most infants. When she hit about six or seven months old, it became so severe that she started loosing weight and did not want to eat. I don’t blame her. I wouldn’t want to eat either if I thought it would just make me vomit.

It has been very heartbreaking to see her suffer like this. I cringe every time she coughs, because it’s not that uncommon for it to end with her throwing up. She just looks so miserable when it happens, and it takes her a few minutes to recover each time.

When she started loosing weight, I took her to a GI doctor. He put in a feeding tube to use when she doesn’t want to eat. We found that it had the added benefit of getting the air off of her tummy from incorrect swallowing. All this helped for a while so we decided to start on some solids. Big mistake! Things only got worse again.

We have tried just about all the reflux med’s on the market, and continue to be unsuccessful in getting the reflux to stop. We have also had several tests and scans done to make sure everything was “hooked-up” okay, and it has all come back normal.

We have to feed her like a newborn, small amounts every three hours and keep her upright for at least thirty minutes after each feeding. Sometimes this helps, sometimes it doesn’t.

The other day we had a visit with our development disabilities doctor at Scottish Rite Hospital. He said that because there is an underlying brainstem issue, as evidenced by her breathing problems, medications would not help. She needs a surgery called a Nissan. This is a procedure that I don’t know a whole lot about, but basically they can tighten the sphincter muscle at the base of her esophagus/ top of her stomach. The problem is that there is a fine balance between making it too tight – you can’t eat solids, and not tight enough - you still reflux. You have to do just right, and there are only a handful of doctors in the area that do this procedure.

Please be praying for two things. . . well make it three:
1. Complete healing from the reflux, and no need for surgery at all
2. The upcoming doctor appointments with the GI surgeon
3. For the surgery to be a complete success and Lizzie’s ability to eat normally with no concern for reflux