Wednesday, November 26, 2008

And good luck with that!

Today we went to the Johns Hopkins University Pediatric Gastroenterology Clinic to have the boys evaluated for their reflux and come up with a way to improve their weight gain. The clinic is impressively large and well organized. We got in, registered like as if we were at the DMV only much faster with less creepy people around, got the babies weighed in with their vitals and were speaking with a Nurse Practitioner within a half hour of our arrival.

We reviewed their NICU history, their diet history, their medicines history, their patterns, and symptoms. The Nurse Practitioner did a very brief physical evaluation and said that because the boys are not throwing up there isn't much they can do for us. My response was I don't think that we're getting any relief from this visit or help with their being categorized as "failiure to thrive" and why did we bother coming and she said that she'd talk with the dietician and the doctor and let us know their recommendations.

An hour later, we were just about to pack up an leave it took so long, she comes back with the doctor and they tell us that the bottom line is that because the guys aren't showing the typical signs of reflux (which is basically all the things they are doing now, but that they should ALSO be throwing up a whole lot more) that they don't think it's reflux. And because it's not possibly not reflux (because they aren't throwing up), and because they are going by the babies adjusted ages which are exactly in the middle of the peak reflux stage of most children, and lastly because they have never had a good experieince with eating due to their extreame prematurity (months of tube feeding, gas and severe bloating issues, and early reflux with vomiting that has been resolved with Prevacid) that the doctors don't have any other suggestions except to give us some antibiotics in case there is some kind of infection in their upper GI and to change their formula yet again and to call them back in about 8 weeks to see if they grow out of it. And because they think that the boys might grow out of it they won't recommend an upper GI proceedure because they are so little and it's a very invasive proceedure involving sedation and a brief hospital stay.

So there's nothing they can do to help with the process of eating. And there's nothing that the Occupational Therapist can do to help with eating eather because she thinks the problem is a medical one and will only follow up with us on a monthly basis until we get the medical aspect of all of this resolved. But everyone agrees that they are grossly underweight, not gaining enough weight, and are too small for their ages even given their prematurity. So now because they won't work with us we can't get into the growth and nutritional program at the Mt. Washington Hospital to help fix the "failiure to thrive" issue.
I'm trying to be my kids advocate but I feel like I'm hitting a brick wall yet again. I'm calling the pediatrician tomorrow to give her the update on all of this because I don't know what else I can do. I will also switch the guys back to the Enfamil Enfacare preemie formula because it has the most calories in it and we will fortify it and go back to adding the vegetable oil to every bottle for even MORE calories. And we will still take upwards of two hours to eat maybe 4 ounces.

Oh and I will start trying to introduce solid stage one foods in hopes that will help too. And I will change their feeding schedule from every 4 hours (at 8mos of age) back to every 3 hours just to keep a steady stream of food in them as best I can.

This vicious cycle is just getting worse. They can't eat, so they don't grow, and they can't sleep, so they don't develop during their sleep cycles, and throughout all of this they are screaming every time they have to eat. If this isn't forcing bad eating habbits then I don't know what else could. My babies will be anorexic before they even hit pre-K.

It's a good thing this is RSV season so that we can't go anywhere because the aspect of feeding these guys in public is just frightening. I just can't get over the fact that this is something they will just grow out of. It doesn't seem right.


Blue Moon Mama said...

I am so sorry you guys didn't get the relief you hoped for. It does seem that there has to be something they can do. I cannot imagine that your situation is unique.

Here's hoping solid foods will make a big difference!!

Trish said...

Wow.. that's..... FRUSTRATING.

Honestly, Robbie is the exact same way. He doesn't spit up very much at all. (It's vastly improved with the prevacid) but the pain is CLEARLY there.
My pedi and our pediatric GI specialist both agree it's definitely reflux.

Right now, we're chasing him with meds. The prevacid and carefate do help, but it seems like as soon as he grows even an ounce or two, they stop working. So we're to the point of adjusting his meds every week if we have to.
I bought a baby scale for home to keep up with him.

Have you tries experimenting with different bottles/nipples at all?
That's the ONLY thing that seems to help Robbie eat more. Sometimes I even change nipples mid-feed.
We'll start with a Dr. Brown's Level 2, and switch to a playtex drop-ins fast flow when he gets wimpy.

We are also struggling with the extended time feedings.
Right now, what generally happens is that he's starving.. he eats an ounce... then refuses. We take a break, (30-45 minutes) change nipples and try again. Sometimes I get another ounce, sometimes I can get an ounce and a half.
Sometimes it just doesn't work.
In the end, I just try really hard not to fight with him becaues I feel like I'm burning more of his calories fighting me than he's eating.

I wish I knew the answer. I really do. I keep hearing he'll grow out of it.. I want to know WHEN.

Claire Green said...

I am so sorry that you are having to fight so are in my thoughts and prayers.

Sara said...

Oh my gosh, Laura!! When will this end? I hope your pedi can give you another avenue to try. I am praying for you and your family. How frustrating for you. I wish there was something I could do to help. ((hugs))

Valerie said...

I'm really sorry you have to deal with this. I hope your pedi can help. ((HUGS))

kozer1 said...

I know what you are going through. I've been there and sadly, my twins ended up on feeding tubes at 7 months old (4 adjusted). It got that bad. They are 18 months old and with the feeding tubes, their weights are wonderful, but eating orally is a HUGE issue still. We are still on purees and bottles - small amounts. The reflux reeked havoc with their gag reflexes so textured foods are out of the question (gag/puke ALL the time). It is such a loooong battle. I hoped when they got bigger/older it'd get better, but it hasn't really. Has the GI or pedi ever recommended a feeding tube to you if the failure to thrive continues? It sounds scary, but they are super easy and you can rest easy that your little ones are getting the nutrition they so badly need in these early months, especially being preemies. Lack of adequate nutrition leads to developmental delays and the like. That's what happened to my little ones as well as failure to thrive overall. Once we got g-tubes, their development took off! It was amazing :)

Good luck - You are in my thoughts!!

Stefanie said...

Please email me if you want and I'll tell you all about the things we've tried with Sadie. It sound like Evan could have a fungal infection like sadie did. And the upper GI series is NO BIG DEAL I don't know why the doctor said it was not worth it. You need to push for that. But again, email me, cause you need support. This is so frustrating and I'm here with you!