Another quick update

I realized that I hadn't said much about Hamilton's leg and I've gotten a couple e-mails about it. He's doing fine. No limping or favoring the leg at all. So I think he must have just twisted his leg or something.
It was great to have an uninterupted night of sleep with my lovebug. I tossed and turned a bit. Colby's head growth is on my mind. I know he's getting surgery on Monday, but I just don't want any pressure prior to the surgury to do any damage. I don't know enough about the brain and all to understand if that's a real concern or not. I just wanted things to go as "normal" as they have been until Monday. But life rarely goes as planned.
I'll post some more pics later today.
Thank all of you for your continued interest in our story. It honestly makes a difference!

quick update

Just a quick update as I'm tired and am on my way to bed. My mom is staying with us for a couple days so that Tracey and I can get some rest.
Colby is doing OK. It's funny sometimes how things seem to happen for a reason. Colby has surgery scheduled for this coming Monday. Thus far his head has been growing relatively slowly. But I've noticed his head getting bigger lately. Yesterday his head was just over 40 cm's. Tonight I measured it and it's up to 41 cm's. So we're going to keep an eye on it and if things progress, well need to call the neurosurrgeon.
That's about it really. We're going to crash early and get some rest. I'll post updates as we have any news.

Colby's operation scheduled on Monday, February 4th

Colby laying on mommy and daddy's bed.

Tracey called the neurosurgeon today to ask them when they were going to perform Colby's operation. At first they came back with February 23rd or something like that...way out into late February. She called me on my cell phone to let me know. We questioned why they at first said they wanted to do it relatively soon, then all of the sudden it was almost a month away. And were they going to monitor things during this month? Tracey decided to call the neurosurgeon back and push for answers. After a bit of pushing, they agreed that this coming Monday would be a good day to do it. Why the change? I don't know. And in all honestly, I don't care. The bottom line is that if Colby does in fact need the surgery, then we want it done sooner than later.

To recap....his hydrocephalus is getting worse again. This was found after a follow up ultrasound was done a couple weeks ago. The doctor is going to try to do a endoscopic third ventriculostomy. However, he said that sometimes once they get into the brain, they find that for one reason or another it just isn't right for that patient in which case they will need to make a decision in the O.R. to then put in a shunt.

We don't know any other details at this point (i.e when he'll be admitted, how long he'll need to stay, information about his surgery or recuperation time). As we get those details I'll fill everyone in.

Many people have asked us how we're doing now with this latest upcoming challenge. It's not too different from the past 7 months.....just keep our heads and spirits up and do as well as we can to be there for Colby. We do feel that we just want to get on with things...we want Colby to progress, to get on track with his development, etc. Right now he's behind a bit. We're hoping the surgery, if it goes well, will help him overcome some hurdles.

I was reading another person's blog today. Her family has also been dealt an unexpected hand, their son has a form of dwarfism and also has hydrocephalus. In one of her postings, she writes about how it's hard not knowing how her son will be in the years to come. ....What will the quality of his life be? Will he be picked on? I would have to say that those exact questions/feelings have gone through my head countless times. That's not the way things are "supposed" to be. For me this has been the hardest part. I think about this most when I'm driving to appointments. Alone, in the car, just thinking...... It's out of our control, at least to some degree. So what can we do? Just try as hard as we can to empower Colby to be and do all that he can. I have the largest lump in my throat as I spill my guts here. But it's the truth. Sometimes life is tough. If you're keeping score, then sometimes life is unfair. People have different ways of dealing with hard times. For us, we just want to make the best of the situation we're in, focus on all the good that can happen.....spend our energy on how we can positively affect Colby, each other and others. If we do this we feel that we've had a good life and done all we can to help Colby have the best life he can.

So this coming week, Tracey and I will work together to be there for our little boy. Tracey is already off Monday through Thursday next week, so that's not an issue. I'll need to rearrange my schedule a bit, but that should be a problem. As we learn more about how long he'll have to stay in the hospital, we'll coordinate how we'll juggle staying there between the two of us. Luckily this hospital stay should be relatively short compared to before.

I'll continue to update everyone as I get more details.

Hamilton can't fly

(Looking up at Grandma)

(Silly boy trying to blow bubbles)
(The "wingman" out cold with his hand stuck up in the air and his hat all messed up making the Colbster look like a cone head)

Colby had a wonderful trip visiting with his grandparents yesterday. He usually falls right asleep when we put him in his car seat. All in all an uneventful trip, he wasn't cranky, I packed everything I needed and my parents were thrilled to see their grandson.

I was sooooooo happy to get a good night's sleep last night. I crashed around 9pm and didn't get up until close to 8 this morning. Boy did I need that. Tonight is Tracey's night again but she went into the bedroom to lay down so I'm going to try to get some work done in preparation of the upcoming week and allow her at least a couple hours rest before I head in.

Colby had a good day today. He had a spell this evening when he was just crying with no relief.....until he pooped. Poor guy. Other than that, just hanging out. He loves his swing. We're glad he has a spot that he likes because it gives us a place to put him when we need a break. I've heard of kids who aren't happy unless they're in their parent's arms and that's gotta make things tough!

Tracey is going to call the neurosurgeon tomorrow to find out when Colby is going to go in for his surgery. I'm anxious to tackle this and get it behind us. We think that he'll be in his own room again so that means we'll take shifts staying there with him for as long as he's in the hospital. Hopefully he'll only be in the hospital for a couple days or a week at the most. Being that it's going to be surgery on his head and all, I can imagine we'll have some instruction on things we'll need to do and watch for once he comes home.

He's also going to have a diagnostic hearing test in the coming weeks. They will sedate him and attach electrodes to his head. This will measure his brain activity and I guess is the only real way to know if an infant can hear. It's not like you can tell an infant to raise his right hand when he hears the sound. I'm not sure when this will be yet. It's not correlated to his surgery so it may be after he's discharged and hopefully will take place at UCONN.

Ever since Tracey was admitted into the hospital, I haven't gone to the gym, gone mountain biking or done anything exercise-related. I've really been feeling kinda crappy the past month or so. I attempted to go to the gym last weekend, only to arrive at 5:55pm, enter the gym and be told that the gym closes at 6pm. So after last night's good sleep, I finally made it to the gym today and it felt great.

Probably being overly motivated, I called my friend Josh and asked if he, his wife Laura and his dog Bacci wanted to go with Hamilton and I on a hike in the snow this afternoon. I want to make sure Hamilton feels like he's getting the attention he needs. Laura and their dog (which is very small and thin and thus not well adapted to being out on the 25 degree weather) stayed at our house with Tracey and Colby. So Josh, Hamilton and I headed to the state forest. In the forest there are the remains of an old mill from hundreds of years ago. All that's left is the massive stone foundation that's cut into the side of the hill. When you stand where the building used to be and look up toward the hillside, the foundation is a made of huge rocks cut perfectly straight forming a wall that is over 10 feet high at some points. Hamilton was doing his own thing ahead of us and had stopped up towards at the top of the foundation. He's usually very cautious and hesitant with things. I don't know what got into Hamilton...maybe he thought he could fly or something. All of the sudden, Hamilton leaped off the top, dropped out of sight and landed below with a yelp. He continued to squeal as he hobbled a couple of feet until Josh and I got to him. He was favoring his front left leg. I was really worried that he broke something or really hurt himself. We were still maybe 1/2 a mile from where the car was and no chance of getting the car any closer. So my immediate thought was that if he couldn't walk we needed to get him to help that we would need to lug my 115 pound black lab out of the woods on a snow covered, icy path. I had some treats (chopped carrots and pieces of Swiss cheese...two of Hamilton's favorites) with me, so I told Hamilton to lay down in the snow and I stayed with him for a couple minutes. I did what I could to feel his foot, leg and shoulder and didn't feel anything. Hamilton didn't mind the pressure of my hand squeezing up and down his leg either. He got up and I was VERY relieved to see that he was OK. I think the snow helped cushion his landing a bit. He continues to favor his leg tonight off and on. So at least I know it's nothing too serious as he can walk on it and even wanted to play with Josh and Laura's dog when we got back to the house. But he's a big dog and I don't want an injury now to haunt him as he gets older. We'll watch him tomorrow and if he continues to favor his leg, we'll bring him to get checked out.

Road Trip

Colby slept 4 1/2 hours last night!!! It's just one time but hell, I'll take it!!! And I hope it's a sign of things to come.

He's doing very well. His belly has been hurting him again a bit on and off. When it's bothering him he's just cranky, poor guy.

Thank all of you for your e-mails and comments regarding his upcoming surgery. Time helps things feel a little better and it's sitting better with me now. We still haven't heard about a date. As soon as we do, I'll let everyone know.

His diaper rash is all but gone. That Triple Paste stuff worked great! He pooped on my yesterday right when I was putting it on his bum...yeah...good times! LOL

Tracey's working today, 6am to 2pm. So in about 1/2 hour I'm packing Colby's things and he and I are going to take a road trip to see Grandma and Grandpa over in Thomaston. It will be his first trip over that way. Hamilton has been enjoying a rather long stay at Grandpas. But we're missing him here so I'm going to bring him home too.

I'm also bringing the camera and hopefully will have some pics by tonight or tomorrow morning. I don't know why but I just haven't been much in the picture-taking mood. Probably just a rut and it'll change. : )

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 yes...then.....it'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!

4am postings

(Not happy!)
(Gettin' bigger. He's outgrown his preemie things and is now in 0-3. What a big boy!!!)
(Colby says "You're going to put that Triple Paste stuff where?!)
(On daddy's chest after a bottle.)
(Out cold at about 2am the other morning.)

Thank all of you for your comments and e-mails. It does help. : )

I'm feeling a little better now. It was just the shock of the news I guess that bothered me most. I've had time to digest it a bit. We're now waiting to hear from the hospital to see when exactly Colby will go back in.

We have an appointment this afternoon with the pulmonologist. We've been told that Colby has issues with his lungs as a result of being born so soon. It's called BPD (bronchopulmonary dysplasia). Here's a link about it.

http://www.kidshealth.org/parent/medical/lungs/bpd.html

However, when we don't know exactly how extensive his condition is. So this afternoon we're hoping to get some kind if idea from the specialist.

Tracey pretty much hit a wall yesterday. She's been pushing hard to take care of Colby and thus allow me to take care of my business. But you can only go so long until things catch up to you. She took naps in the afternoon and then went to bed at around 9. I stayed out on the couch with Colby to allow her some uninterrupted sleep. My day today is relatively slow. Just an office meeting in the morning, then wrap up some paperwork and finally our doctors appt this afternoon.

Well, it's taken me over an hour and 1/2 to get this posting done. Colby has been a little fussy. His belly is hurting him as he'll fuss and cry, then there will be a nasty eruption in his diaper followed by an indescribable odor. I gave him a bottle about 1/2 an hour ago and now he's in his swing...out cold.

Thank you for the suggestions for his diaper rash. We heard from many people that the Triple Paste is the best so I picked some of that up. I know it's the whole first time father thing, but I had to think as I smeared thick paste all over my son's butt and butt cheeks that this was just a very weird experience. Ahh, yes, all the parenting introduces you to!

My mom came over yesterday to see Colby and hang with us for a bit. I love it when my family comes over. I do wish we lived closer to my home town. We're currently about 1 hr 20 minutes or so away. It's certainly drive-able, but it's still a little far to just blast over to have dinner with them or something. I was away after college, first out of the country, then up at UCONN where I met Tracey. We've lived on the other side of CT ever since. Maybe once

Evan is out of High School, we can look for something a little closer. Most of my client base is in North Eastern CT, so we'll need to balance that. Tracey's family is also over this way. What about Colby's fans? Do you live close to family? Do you wish you did? Or maybe you have a "Everything Loves Raymond" thing happening and wish you were a little farther away. haha