Gut Wrenching

It is a terrifying and heartbreaking thing to watch your child and her body refuse the very thing she needs to live.

Since the day she was born, Gracie has struggled to tolerate feedings. Whether it's calories or just hydration, getting what she needs into her little body has been difficult. In the early years, we'd be able to "force feed" her, literally making her be on the pump every single second she could bear it in order to keep the proper hydration and nutrition in her.

For the better part of the first three years of her life, she struggled with abdominal migraines/cyclical vomiting syndrome on a very predicable schedule... every 11 to 17 days and they'd last anywhere from two to five days (sometimes seven). She'd be truly down for the count... intolerant to light or movement. She'd tolerate a cool washcloth on her forehead, but not much else. For the first day or two, we'd literally have to stop all caloric intake and just give Pedialyte... but usually, she'd need to have a break from anything at all for at least 12-24 hours and it would take a week to get her back up to full strength formula. We learned how to manage it as best as we could - - knowing at what point she'd need to be admitted for IV fluids, knowing the signs that she couldn't manage an increase in the richness of the formula... all of it was down to a science. Finally, we found a combination of meds that seemed to help manage the intensity and frequencies of the cycles. As she got older, she started having fewer abdominal migraine symptoms and presented more like regular migraines. Again, through trial and error, we found a combination of meds that helped keep it all at bay. She's never been truly "cured," but the severity and frequency improved drastically.

It's no secret that the last handful of months have been a struggle in our house health-wise. Since January, we've not gone two weeks without someone having something. Nearly every family I know with more than one child has had a somewhat similar winter and spring, so I didn't pay too much attention to the details of the recent patterns (that is to analyze them - - I still make note of everything related to Gracie... charting little notes each day related to her feedings, especially), until now. Going back on my "Gracie calendar," it's seems pretty clear that the cycles are back. Whether they are actual abdominal migraines or reaction to the pain from her recurrent ear and sinus infections is not clear... though I think it's likely a combination of both. Or... is it that the increased intolerance to feedings creates increased, tenacious secretions which, in turn, cause fluid in her ears and sinuses to build up thus causing the infections. One thing is certain, the pattern is about every 16-22 days and it lasts about five days. It's most definitely the reason that we can't get weight on her and struggle to maintain.

This is not a new problem - - it's always been a problem. Her highest weight was at four years of age... 30.5 pounds. Since her pacemaker generator replacement in August of 2008, she has dropped from 28 pounds to 23. She's teetered between 24-26 over the last several months and now is back down to 23. We are scared. She is wasting away. Her face is so thin that her cheek bones are protruding slightly and you can actually see the bones around her eye sockets. Her pacemaker is clearly visible on her left side.

On Monday afternoon, a feeding caused Gracie to become absolutely hysterical. Monday night she was so upset that she required constant suctioning for the better part of three hours. She was clearly in pain - - hitting herself in the face, pulling on her lips, biting her fingers to the point of bruising. We had to vent her G-tube the whole night and stop all fluid intake of any type to help her calm down and relax. She was so worked up she spiked a fever of 103. On Tuesday, we struggled to keep her hydrated (she'd already missed so much the night before) and with every small bolus, she was sweaty, cried, retched, gagged and hit herself in the face. She'd require nearly constant suctioning for about 45 minutes afterward and then, a switch would turn and she'd be fine again... until the next time she needed fluid. Forget about hooking her up to the feeding pump for a slow feed... she absolutely hates being tethered to it on a good night and becomes self-injurious if connected while awake.

It's heartbreaking to see her like this... we are helpless... she is in pain, we can't help her. When you have a baby, feeding him or her is such an intimate connection... it's nurturing, it's loving and the very thing that sustains your baby's life. Gracie's body does not easily take in that nutrition. Her desire to eat orally is cruelly contradicted by her body's inability to swallow... and yet, even if she could eat, her body can't process it.

We want to have her admitted, but are so hesitant. Her GI doctor is on vacation... the GI doctor we saw previously said to solve the problem we should just force feed her. Not a solution. That's what we've been doing her whole life during these times... forcing fluid into her. When she stops violently retching, gagging and reacting to the betrayal she feels and the pain she's experiencing, she literally just passes out from exhaustion. She checks out - - sleeps - - in an effort to escape the pain. She has literally missed yesterday and today. No, she's not dehydrated because we are forcing fluid and nutrition into her, but she's not present. Our child has her best days when she is not getting anything at all - - no formula, no water. It's an unthinkable pain we are experiencing as her parents... feeding her is torture. Yet, so is not feeding her.

Knowing she is in the beginning stages of heart failure again only compounds this issue... she needs surgery soon, but cannot possibly have it without weight gain. We ask for your love, positive thoughts, prayers, support... whatever you have in you to give and send Gracie's way as we try to navigate this problem, yet again, with doctors who barely know her or us.