Tuesday, April 20, 2010

Thumb Sucker

video

Sunday was the day to change all of Graham's tubes. It's so strange to see him with all of them off his face. He seemed to really enjoy not having them all stuck on him so we went without for a short while.
He has a new favorite pasttime of sucking his thumb and of course we all watch on oohing and ahhing like we're watching a fireworks spectacle. It's just too darn cute!
We continue to let this little being take over our lives. He wakes up with that smile and it's still planted on his face when he goes to bed.
A couple of days after Graham's last swallow test, I decided to see if he would breastfeed. Sure enough, he did! I can't believe after 3 months of not doing it, he remembered. He's been improving by nursing more frequently and for longer periods of time. We still have the majority of his food coming from the feeding tube, but we're starting to transition away from it.
The next step toward getting our baby tube-free will be on April 27th when we go back to Riley. The pulminologist will hopefully take Graham off the small amount of oxygen he's receiving.
Our little guy needs to continue to gain weight and I think we'll have a pretty healthy baby on our hands.

Wednesday, April 7, 2010

Swallow Test

As you all know, Graham has been on a feeding tube since he started back on food again a month and half ago. He failed the swallow test a month ago when we were still in the hospital because he was aspirating the liquid when he drank.
We were all anxiously awaiting the test today since Graham has grown a bit and is much stronger than he was.
Well, the G-Man has proven that he is now a good test taker! No more aspirating! He is still having some difficulty swallowing, the milk pools and sometimes will start to penetrate the vocal cords (beginnings of aspiration) but will correct itself and go down the right tube.
The part Graham did the best on was the baby food. Since it's a little thicker he did better with it.
We have gotten the go ahead to start Graham on a bottle. 10ml twice a day. Now 10ml isn't that much, but it's a start and will get G aquainted with eating a new way. The rest of his feeding will be through his feeding tube. We were also given the go ahead to give him some nibbles of babyfood throughout the day as well.
We'll slowly increase the amount he's getting through the bottle based on what Graham tolerates. Another swallow test in 6 weeks!
With Graham turning 4 months tomorrow, Bill and I couldn't help but reminise on those months on the way to Riley today. We just shake our heads at what our little guy had to go through and it still brings tears to our eyes. One thing we both agree on is that we couldn't have gotten through what we did without the love and support of our friends and families. We survived because of you and I know we say it all the time, but Thank You.

Monday, April 5, 2010

Central Line is Out and Easter

Last Thursday, we went for our first check-up at Riley post discharge. It was a little strange going back, but we were in a different part of the building. My main goal for the check-up was to take out the central line that Dr. West was keeping in "just in case." Sure enough, she took it out, they were very pleased with Graham's weight gain and progress at home. We're back to Riley this Wednesday, April 7th, for the swallow test. It would be nice if we could continue this tradition of removing a tube per visit back. We'll see...

This weekend was a lot of fun! We had Bill's side of the family here for Easter. Graham ate up all the attention and captured everyone's hearts with his smiles. It was nice to see Grandpa up from Flordia. AND Uncle Andy and Aunt Kirsten from Cinncinati will be giving Graham a cousin in October!!!