Yesterday was a long day. We had three appointments at Riley starting with Developmental Pediatrics in the morning. I was really looking forward to this appointment, I knew we would learn a lot about where Graham is right now, where he needs to be and how to get him there. In all honesty, I thought this appointment would point out the obvious of things we already knew as far as his muscle tone development because of the omphalocele and so on. He also had another swallow test, which I thought would be a slam dunk since he had been exclusively nursing for over a week. (This was of my doing after conducting an experiment one day to see what he would do without the feeding tube for a day and he nursed like a champ. I had called Riley and talked to the swallow test nurse and she thought that sounded okay as long as he seemed happy and had plenty of wet diapers. Graham loved being tube free for that week and was his same old cheerful, smily self.)
He also had a heart echo which we do not know the results of yet.
Well, as we learned so well just a few short months ago, it's not really the best idea to set sights so high. We are on Graham time, remember?
Graham has "fallen off the chart". He was in the 3rd percentile of height and weight because he was so sick for so long and now is even lower. He is the size of a three-month-old baby. This news was quite a slap in the face, as he was nursing every two hours and had even started solids.
His swallow test did not produce the results we had hoped for as well. There is still penetration of liquid getting past the vocal cords toward his airway. He is not aspirating, but close. We have had issues giving Graham a bottle, he usually just refuses it which can be common with nursing babies, but is vital for supplemention if he was going to get off the feeding tube. We had to come up with a plan to get more calories into Graham and to get him gaining weight. So, it was back on the NG tube for Graham. Good news is, I will still nurse during the day. We will give him feeds of high calorie fortified breastmilk through the feeding tube during the night while he is asleep.
It was hard putting the tube back down his poor little nose last night after he had the week off.
As much as this seems like a step back, I have to keep reminding myself of how far he has come. As much as I hate the feeding tube, it will help make him stronger. And at the end of the day, it is my own personal issues with wanting him off the tube that I need to deal with. I look at him through my teary eyes and he is just smiling back at me like "Relax, Mom...I'm cool with this". He handles things so much better than his Mommy.
So that's where we are. We've had his First Steps Occupational Therapist come see us twice now and she shows me exercises and stretches to do with him everyday. We'll be going in for weekly weight checks to make sure he is gaining again and then hopefully we'll be back on track.