When we found out that Lincoln has severe acid reflux we made an appointment at Children's Hospital to have him fitted for a "wedge". Apparently babies with reflux like to sleep at a 30 degree angle, so the PT department at Children's makes custom foam wedges that you take home, where your baby sleeps, to help lessen the pain. I have had friends who have gotten them for the babies and it's suppose to work like a charm! When we went in for that appointment the physical therapist also looked at how Lincoln ate and was worried about how loud he gulped his bottle and winced in pain when he swallowed. So, a swallow study was ordered, which we did last Friday. This is where they take a video x-ray of him drinking a bottle to watch how he swallows (which apparently is the most complex motor coordinating process your body does!).
I have a bachelor's degree in speech therapy and learned all about swallow studies in college. I'm sure I'd seen about a million of them by the time I graduated. I remember thinking they were so interesting. So, it was ironic to find myself looking yet again at another swallow study, but this time, of my son.
above was the chair they strapped Lincoln in to feed him the bottle and x-ray his swallow.
below is what his little mouth and throat look like on screen.
They found that Lincoln aspirates when swallowing, which means he does not close off her air way and sometimes allows liquid to go down into his lungs. He of course could choke when doing this and long term it could be very damaging to his lungs. He had a high chance of developing pneumonia. They told me they were admitting Lincoln to the hospital that day and would be putting in an NG (nasal gastric) feeding tube to help get things under control. I of course was devastated and worried beyond belief, as I know way too much about this stuff. When the SLP (speech language therapist) doing the swallow study told me they were admitting him to have an NG tube placed I started to cry. She said it would be ok, that it was short-term and he would be eating again in no time. I looked at her and said, "I have a Masters Degree in Special Education. I know there is more to this than just that and oh how I wish it were that simple." She said nothing.
Here is Lincoln sleeping in his hospital room, on his wedge. They did a number of tests, found nothing structurally wrong with his mouth or throat, ended up putting an ND tube in (which goes past his stomach into his small intestine) and taught us how to put in the tube (incase it comes out) and how to work the pump. So much information in so little time. Currently Lincoln is being fed a small amount of food 24 hours a day by a pump, in hopes that he will gain weight, get stronger, swallow better, stop aspirating and decrease his acid reflux. It's been a long week. The entire thing overwhelms me but I realized that I just need to have faith and take things one day at a time. I sure won't ever take my children's health for granted. We were in the hospital for two days (and one night) and I about went crazy. I can't imagine having a child in the hospital long-term. Here is our sweet Lincoln, ready to go home from the hospital with his ND tube.
and here is my new accessory- the black backpack that holds Lincoln's food and pump.
He has gained weight since putting in the tube, but still not as much as they would have hoped. We go back to the hospital next week for more tests and to see the dietitian. We pray he gets stronger quickly! Thank you for all your love and support!
