Monday, September 15, 2008

Best for Hope

From the Department of "Damn Irony, How Could You Be So Fickle": Two people who've never been known to pass up a brownie are raising a girl who can't put on weight no matter how hard we try.

It'd be funny if it weren't so worrisome.

Over the past few months, Hope has fallen off her own slow-but-sure growth curve of about 2 ounces a week or 1 pound every two months. It wasn't ideal, but it remained consistent since she was in utero, allaying concerns with the knowledge that she's humming along at her own slow course.

But Hope has remained at 8 pounds, 4 ounces for three weeks and gained 1 pound in about 3 months. We stuff her with prunes, oatmeal, sweet potatoes, carrots, boring stories and silly songs. We re-institute the 4 a.m. feeding we were so relieved to forfeit.

Zippo. No matter what we do, the scale doesn't move.

We're rapidly approaching the point where intervention may be necessary. Dr. Spitenup, who is as conservative as they come, first floated the idea of a fundoplication and G-tube surgery about two weeks ago.

The procedure would close off the upper part of the stomach to thwart acids from coming back up and install a feeding tube into her stomach to allow us to continually pump her with calories while she's sleeping.

We can't say we were surprised. But we were saddened. Feeding tubes are fairly common among those with CdLS, and Hope's lack of one was a point of pride that we perhaps naively interpreted as a good sign.

But after a while, you realize your pride isn't doing her any favors. Her inability to pack on pounds no doubt further hinders her development. She still hasn't sat up, perhaps because she's not large enough. The more we feed her, the more she vomits -- helping no one except our disgusting dog, Lulu, who ranks vomit as No. 3 on her favorite foods behind soiled diapers and dirty socks.

So we've come to accept that a feeding tube not only is a good idea, but we need to start moving on it quickly for Hope's sake. It would supplement -- but not replace -- normal feeds, and countless CdlS kids have thrived with them.

When Hope was born, her Grandma Clem said we'd have to throw away our expectations. She was right, but so much of this year has also been about learning to move behind our pride to do what's best for Hope.


Heidi @ GGIP said...

Those are such great pictures. I am hoping that a day will come that we are even allowed to try to do feedings by mouth.

Doing the g-tube was a no-brainer for us, but doing the Nissen was a point of contention that most of the doctors couldn't even clearly make a decision.

In the hospital, one of the nurses told us that "these kids don't play by the rules." And that is something I have found to be very true, and also very helpful.

Misty said...

i know the agonizing decision that you are facing...

i am thinking of you guys!!! sending big squeezes through cyber space to hope!!

Rachelle said...

I know you guys are faced with a tough decision. Although Joey has never had to have a feeding tube, he did have a fundoplication this past January. It got to the point that he was vomiting 2 or 3 times a night every night ( it tested positive for blood) and taking reflux meds 3 times a day. The surgery is the best thing we could have done for him - he has been thriving ever since and has put on a whopping 6 lbs! Before that he maybe gained a couple pounds a year. Good luck with your decision - I know you will do what you think is best for Hope. Take care!

Anonymous said...

Tough stuff, I know. But please don't beat up on yourselves. You've done what's best for Hope, to the very best of your ability and understanding, every single day of her life. Give yourselves and her big, big hugs. You are the best parents a girl could ask for.

Bushels of love from
Grandma K.

Rhonda said...

First of all, she is adorable. I love that red hair. When Sean was born we were told that there was nothing that could be done to stop his vomiting. We carried around a bucket for years because it was easier to catch it than to clean it up afterwards (and we didn't have a dog!). His crib was so elevated he had to sleep in a sling to keep him from sliding to the bottom of the bed. Other than that, that was all we were told to do. He was not even on medicine. Finally, when he was about 5 and still tiny I got info. from the Foundation that said he didn't have to throw up all the time. I took this to our pediatrician and an appointment was made with an adult GI doc. That did not go well but at least it got his problem noticed. He was diagnosed with a hiatal hernia and severe reflux. From there we went to the Children's Hospital in St. Louis and he began being treated with meds. We were never offered a fundoplication until he was about 16. Even then, the surgeon didn't want to do it and referred us for a second opinion back to St. Louis. The doc. in St. Louis didn't want to do a fundoplication and increased his meds. to an enormous amount of Nexium - 100 mg./day. Now, he has Barrett's Esophagus and there is nothing that can be done to reverse that. We are going to see an adult GI doc. in November because the ped. doc. doesn't know anything about Barrett's. So, we'll see how that goes. I don't know if him having a fundoplication early in his life could have prevented this but now I'll never know. This is a very personal decision for you but with all I've heard about other kiddos having it, it seems to help. You will make the right decision for Hope. Trust yourselves.