Friday, January 25, 2008

A good visit to UCONN

One of the certainties in life is change. Wednesday, when I found out that Colby's hydrocephalus was getting worse it kinda hit me like a ton of bricks. Yesterday he had a follow up appt at UCONN and things went very well. First of all we just love the people at UCONN. We've heard many good things about CCMC (Connecticut Childrens Medical Center), but our experience with them wasn't the best. So to be back at UCONN was a refreshing change. We saw Dr Rosengrants who knows Colby from his lengthy stay there. He checked him out overall and said he's doing very well. His lungs are clear, his overall growth and weight gain is excellent. He did remark that his head growth is increasing more than it used to, but that's no surprise to us now. It was nice because they did an overall check up on Colby and like I said above, they said that all in all Colby is doing wonderfully! What a breath of fresh air that was for us. I was flying high after that appointment. And what a nice thing to have some great news after getting the other news on Wednesday.
When we got out of that appointment we wandered down to the NICU to see some of our old friends. I simply can't say enough about the staff there. We saw some of his doctors and a couple of his nurses. Great to see them. I love socializing and I really got to know a lot of the folks there during our stay. I can say I honestly miss talking with them so it was wonderful to spend some time catching up. I also saw a couple of the parents who are still in the NICU. Their children are progressing along and it won't be long now until they too are home.
You loose perspective when you see your child every day and you just don't realize how much he's grown. We didn't go into the NICU rooms but stood just outside to visit and I could peer in and see the nurses holding current NICU babies. Boy did they seem tiny. It's amazing to think that our little Colby wasn't much bigger than my hand when he was first born! What a long way he's come!
We still don't have a date for Colby's operation. We're waiting anxiously for the doctor to call. All the doctors at UCONN asked about his hydrocephalus and we updated them regarding the recent change and the plan to have surgery. We felt reassured as all of them recognized the procedure that CCMC is going to try to do. They all said that it's a good alternative to the shunt if it works.
I got up about 12:30 when I heard that Colby was fussing and hungry. I'm now in the living room, Colby's fed and now in his swing looking all around as if it were the middle of the day. Ugghhhhhhhhhhhhh Go to sleep my child...... haha He's eating like a champ, usually taking an average of about 80 cc's each time he eats. He just took 100 cc's. You'd think "Hmmm, if he has a really full belly, maybe he's sleep longer, right?" Nope, not the Colbster. He's serious about eating and doesn't seem to want to wait much longer than 3 1/2 hours.
As we walked around UCONN, many nurses/doctors asked how old Colby was. Tracey knew his age right away but I had to think about it. While he was in the NICU it was all about his age. Now that he's home, I hardly think about it. On the 27th (this sunday) he'll be 5 months hold! Wow...almost 1/2 a year old my boy!! That's amazing to me! We're almost 1/2 way to his first birthday! I can't wait!
I'll probably sleep out here tonight. When we got home from the hospital I stayed up for maybe an hour at the most and then went into the bedroom and crashed. Tracey did the 9:30 feeding and then came to bed. But she's got to work at 6am today. So I'll stay out here to allow her some uninterrupted sleep. Then do this again tonight because she has to work Saturday morning, again at 6am. Then.....ow's my turn to get some sleep!!!! YIPPIEEEE!!!!
So that's the scoop. I guess the tapping of my keyboard soothed Colby as he's fallen asleep. I need to do the same as it's now a countdown until he wakes up again. I'm home with him all day today so I'll probably update again. Happy Friday everyone!


Anonymous said...

Hi Scott, I'm so glad to hear that Colby had a good doctor visit! I was worried when you wrote about his hydrocephalus (did I spell that right?) the other day! Well I wanted to tell you that if you haven't already...try the swaddle me blankets, they're made by kiddopatamus, you can get them at babies r us.....I wrap Aidan in those every night, it helps him sleep, even if he is wide awake after he eats, cuz he's not wiggling out of a blanket! Well good luck! Laura

Anonymous said...

Congratulations on being such a great blogger in the zaniness (and sleep deprevation!) of a very intense time. I found your blog because I get Google Alerts for hydrocephalus.

I have been working to create an online community around hydrocephalus. I am a big believer in sharing stories and experiences to help others and ourselves. Would be really great to have your blog connected to the site. You can become a member and link to Colby & Avery's Story, your experiences will help many other people who are in similair situations. My story about my son, Gabriel is posted on the site and I encourage you to learn as much about hydrocephalus as possible.

Thank you and good luck, Leilani Schweitzer