Sometimes I Write

Sorry for the long silence, but, up until today, there hasn’t been much to update.

Guinevere is in the hospital because she has long had issues surrounding eating and feeding. They are, indeed, medical, not behavioral, issues. I haven’t mentioned this much to many because I get sick of explaining it long form and half the time still have people confusing it for her just being a picky eater or obstinate, and the other half still barely gripping the concept but getting that there’s “something” going on.

The bottom line has been: she hasn’t been eating well. We’ve structured our entire lives around getting her to eat. It was consuming the vast majority of our days. There were no “days off” from dealing with this. Occasionally, she’d have a good day, but she would only be able to consume about half of the calories she needed to survive on her best days. And those were about 1 in every 10. We had been jumping up and down, screaming for help for her since July of last year with little success. Her care team, including numerous specialists, could all see that there was something going on, but it was nearly impossible to get an appointment with the therapists and specialists that she needed to see because they were under such high demand.

So, last Thursday, Jen took Guinevere in to see her pediatrician. She explained everything, again, and in more detail, about all we were doing to feed her with such little success. Guinevere had actually lost weight since her last visit, and hadn’t gained any, overall, since November. She was only up 2 lbs since her birthday. The pediatrician could see that there was no other way to get the assistance we needed, so she ordered Guinevere hospitalized under the diagnosis “failure to thrive.” In the hospital, there is access to all of the specialists we need.

So, for the first 48 hours, we were visited and observed and recorded, etc. They were measuring her caloric intake, as well as everything that “went out.” That has continued.

Yesterday, they decided that they were going to place a nasal gastric/NG tube (a tube that goes down her throat into her stomach through her nose, and has a snap enclosure that hangs down at the end of excess tube that hangs over her ear and down her back) and give her 400 calories of liquid nutrition over 10 hours as she slept. By their count, she’s taking about that much in orally during the day, and she needs 800 calories a day to be healthy and grow.

The placement of the NG tube was a difficult experience, but she has shown no proclivity to yank it out, which is pretty amazing. She’s such a trooper in that.

Last night, they gave her the first supplemental feeding. Today, she was a completely different person.

I had the best day of my life today. I’m not using excessive hyperbole. It was. It beats the day I got married. It beats the day that we found out she was coming. It beats the day that we brought her home from the NICU in August of 2011. Today, for the very first time, I saw my girl chew food. She has never chewed before. Ever. This morning, we were giving her little bites of blueberry muffin, which she would generally just mash around her mouth with her tongue before swallowing. I couldn’t believe what I was seeing. I saw her jaw moving up and down. For the first time. Ever. With food. In her mouth. She ate about the same as one of her best days without the tube assistance, but feedings were much faster, and she was more participatory.

She held her soy milk container herself. Before today, we wouldn’t have let her hold it for fear she would drop it. She would not have had the strength or coordination/fine motor skills.

She climbed up on an ottoman and onto the couch in her hospital room. She never would have had the strength to do that before. It blew me away. At home, we always had to help her onto the couch or chair she wanted into.

She went over to another little girl, a good 25 feet from us, and she engaged her to play with the same thing. She would have never gotten 5 feet from Jen or dared engage another child socially without our provocation. A week ago, I would’ve told you that you were stupid and didn’t know my daughter if you tried to convince me I would witness that today.

There are other things, and I could go on and on. But, we had a really good day today. We have a long way to go. Do not get me wrong. We are no where near the finish line and my tough little person has so much work to do. But, today, instead of acting like a cautious 9 month old, my daughter acted like a confident 21 month old. And she chewed her food. It was the best day of my life, thus far.