Our Childrens House Dallas

We were admitted into Our Childrens House in Dallas this last Tuesday afternoon after a very long wait. This was our second attempt to get in though we felt more urgently about going this time than before. When Alexander first was diagnosed as failure to thrive and was put on an NG tube we did not fully comprehend what all that meant or how long he would come to rely on a tube to stay alive. We knew he needed to gain weight and catch up on his growth but we thought that once he was stronger he would figure out how to eat. It's hard to comprehend why something so natural would be so unnatural to anyone but that is our son's case.

After having an NG tube for 8 months I was close to deliver our third child and we realized Alexander was not making progress to get off the NG tube even with therapy and our sweet neighbor who had a child on a g-button helped convince us that it would be a better path if this were to become a long term issue which it has. Alexander was scheduled for surgery to place a mic-key button one week before my due date which made the hospital staff a little nervous and anxious to get us out as soon as possible. I assured them I had yet to go into labor on my due date or before and the record still stands though Benjamin was the first to not need induction despite also being late. He's had a mic-key button ever since and has only had it come out accidentally once, naturally when I was alone and with a new baby, but he was a trooper and despite being in a great deal of pain did not fight me when I asked him to lay still while I put it back in. We've seen him regress dramatically over the last year especially with what he'll take orally which has been alarming. Also despite being tube fed he has failed to gain weight and has even lost weight since July when he was almost 32lbs. When we were admitted to OCH he weighed 29lbs 12oz. We have been slowly trying to increase his intake and have gotten him to 30lbs but he's also been drinking a great deal of liquids so it's not clear how much is water weight.

Most of the kids here have a medical explanation that landed them in the world of NG tubes and mic-key buttons or g-buttons. Alexander still is a mystery but an adorable one. He celebrated his 3rd birthday today and the hospital and staff have been amazing. Being in the hospital over your birthday is never fun but they made it a good day for him. They put on a dance party in the play area and they bought him gifts, a superman doll, cyborg on his motor bike, playdough and megablocks with crayons and of course a balloon which his brother really wanted to bite and pop. I recall Alexander wanting to do the same thing at Benjamin's age and promptly popping the dinosaur balloon Jeremy bought for him on his first hospital admission. All the little attendees were properly worn out and napped later that day including the birthday boy who was too tired to eat during his 2:30 feeding session.

I've been trying to make the most of my time here and observe as many sessions as I can. I have yet to observe OT but will make a point to do so if allowed next week. I have been able to observe the speech therapy and have been giving feedback on my observations to his therapist to confirm she's seeing the same thing. For the first few days he happily performed fairly well for his therapist and feeding therapist, however it didn't take long for the novelty to start to wear and he started to push back and refuse to eat like he has at home. He will take a few bites but he shuts down after a while no matter what and they have only introduced foods we've had success getting him to eat, in small quantities but it's at least different than pediasure from a tube. They are trying to get him to take the pediasure orally. He gagged and shuddered the first time they had him drink it through a straw which they shortened so he only had a short distance to suck to get the liquid into his mouth. I don't blame him. I've never tasted the stuff but I've smelled it plenty and it is really difficult to get out of the carpet in case anyone wondered. We invested in an industrial carpet cleaner for good reason. He did take some by mouth but eventually refused it. His speech therapist starts her session off by doing mouth stretches with him. She gently strokes right above his lips and under his nose with gloves on and then under his lips between his chin and lips after that. Then she mushes his top and bottom lips in and out and rubs around the sides of his mouth. After the stretches she introduces a food by having it touch different parts of him moving toward his lips. First the tops of his hands then by his shoulders, then cheeks and eventually his lips while encouraging him to take a bite and taste it. He willingly tasted the chili I made and brought for him but was not having it with the waffle she brought for him. I've observed he only chews with the front of his mouth and left side. He drinks toward the right side of his mouth. He has a molar coming in on the upper right side of his mouth but it just won't break through and it's been stalled since August. We may need some help getting it down as I suspect it may be hindering his feeding sessions a bit. He does seem willing to eat to get the rewards to a point and then he quits. Why is the question we hope to resolve. Our first team huddle happens next week and I'm eager to hear all the thoughts and a plan of action. The nutritionist is concerned about getting his weight back up which really needs to happen regardless.