Wednesday, May 19, 2010

Grow G-Man Grow!

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.

Wednesday, May 5, 2010

Still moving in the right direction

Graham had a couple appointments last week down at Riley. Dr. West was very happy with the progress he's made. We saw a wound care nurse about how his omphalocele has been healing (or not). I was a little concerned that we really hadn't seen too much of a change in his wound since we left the hospital in March! We are now doing a new sort of dressing on it that gives it a little more air and it's made all the difference. Right now there is just a nickel-sized scab on the front of his little hump, so I feel relieved about that.
G also saw pulminology and he is off oxygen during the day. One less tube...kinda. He is still on oxygen at night, but I am totally fine with that, it can only help.
Today, we went to the pediatrician and Graham weighed in at a whopping 12 lbs. 8oz. Everyone couldn't be more pleased.
Our next goal is to come up with a plan to be able to get off the feeding tube. We will be starting therapy right here in our home with an organization called First Steps. They are sending an occupational therapist to help with Graham's muscle tone to help with things like pushing himself off the floor while on tummy time (made much more difficult since he doesn't get true tummy time). He'll also eventually need help with sitting up, crawling, etc. since his core muscles are not where a normal baby's are. We will also be working with a speech therapist who specializes in feedings and swallowing. Graham has decided he wants nothing to do with a bottle, which can be normal with nursing babies, but it is vital to getting him off the feeding tube so we can supplement feeds and make sure he continues to gain weight.
Developmentally, Graham is just about right on track. Every week, he is doing new things. He really focuses in on faces and toys. He is reaching out and grabbing objects and attempting to put them in his mouth. I think since he has grown and can see so much more of the world around him, he is that much happier. And as we've all discovered...when Graham's happy, we're happy.