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

Colby's Followup appt with the Neurosurgeon

Colby had a follow up appointment today with the neurosurgeon that did the spinal tap on him before he came home. The idea was that they were going to check him to see if his hydrocephalus has stayed down or if it's come back.
I need to keep as busy as I can Monday-Thursday so Tracey brought him for the followup. She called me on my cell phone to let me know that the ultrasounds show that his hydrocephalus is getting worse. This hit me harder than I expected. I think it's because he's been home for a while now and I just want things to be "normal". I want the future to be "normal".
So, here we go again....
I just have spotty details as I was gathering information from Tracey over the phone as I wrapped up one appointment and headed to another. But as I understand it, the neurosurgeon is going to try to do a Third Ventriculostomy. They will go through the top of Colby's head with a camera, go down into his ventricle and make a hole in the bottom of the ventricle to drain the fluid. The doctor says that it doesn't always work and there are risks, but if it does work it's more of a "one and done". If upon going into his head they find it just doesn't look like it will work, they will put in a shunt.
Timing? It sounds like it will be within the next couple weeks. He's be admitted for a bit after his surgery.
That's about all the details I have thus far. I'm sorry that some of you who may be expecting an e-mail or phone call to let you know of this are finding out via the blog. But like I said this is hitting me harder than things in the past and I honestly don't feel like talking much. I need to save what spunk I still have as I need to give a presentation to a school board in about an hour. Isn't it funny how life just keeps pushing you sometimes.
I talked with Tracey about it and we're both of the same opinion..........although we don't want to be going through this, we just don't have a choice and we need to make the best of it all. And if it's what Colby needs, then it's what we need to do.
As I get more information, I'll update everyone.

Attack of the diaper rash

Poor little Colby is having his first experience with diaper rash. It is localized around his bum right now so we're doing what we can to stay ahead of it. It doesn't seem to bother him as he's not too fussy when we clean him. But we just don't want to let it get worse.

I think Tracey and I might be into a groove with Colby at night. Last night I crashed around 9:30 and slept until 5am. Then I got up with him and will stay up until I leave for work. This lets me sleep through most of the night but then lets her sleep in the morning for a bit. I love getting up early....always have. I can get some work done, enjoy my coffee, watch some morning news, enjoy the quiet the house .....all before the sun comes up.

I don't know if any of Colby's followers watch the market, but it's been an interesting couple weeks. Now the international markets are starting to follow with fears that the US is teetering on a recession. Boring stuff to you? It's what I deal with every day and when the market acts like this...things get very busy! So I anticipate work getting busier again. I wonder if Colby will have an interest in the market as he gets older. Only time will tell.

So I'm doing my best now to continue to update the blog more regularly. I know that I'm still missing pictures. No excuses....I'll get some up soon.

I'll end with a couple of questions. Feel free to reply via a comment or shoot me an e-mail.

Do you follow the market much? And secondly, do you or did you ever hope your child would eventually do what you do for work?

RSV (the common cold) and Preemies

I just wanted to post this link quickly. I know a lot of our friends read the blog and have been asking when they can see him, when their kids can visit, etc. Tracey and I have been strict about having visitors and it's simply because of Colby's health. He was born premature which is a risk factor in itself. But what seems to really set him apart from full term babies is that he has lung disease. Although full term babies can get the cold quite easily, they have a much better chance of fighting it off and staying relatively well while they're sick. If Colby were to get the common cold, it could settle into his lungs, he could be hospitalized again and it could cause an infection which could be fatal for an infant with lung disease.
So it's not that we don't want to see people (quite the opposite, I'm dying for some socialization!) and it's not that we don't want people to see him, it's just that we need to be so careful. If we were to say OK, come on over with your kids and just have them stay away from him and if anyone had a cold and didn't know it or the cold germs on them and Colby ended up getting sick....it just isn't worth it.
Anyway, I just wanted to explain why we're being so cautious.
Here's the link
http://www.preemiecare.org/rsv_resourceshtm.htm
Thank you for your understanding.

Plan B

(this is the smaller playset I got him the other week, there are toys that hang down from the blue arch that we try to get him to recognize and play with. The pillow thing around his head is what we use to try to keep his head either straight or to his left. When he was in the NICU, his head was on the right side most of the time and thus the back of his head is flat on the right and pushed out a little on the left. It's hard because he favors his left side and tries to pull his head to the right as you can see he's doing here.)

Well, sometimes things just don't go as planned. Colby was looking pretty pale yesterday morning and just wasn't acting himself. So we ended up not going to Thomaston and stayed home instead. He was really sleepy in the morning and continued to look a bit off. But by afternoon he was pretty much back to himself. I was really tired and ended up taking a nap in the afternoon which made me feel sooooooooooo much better. So I guess in the long run it was better we didn't go.

I still wanted to have a dinner with Tracey, one that we didn't have to cook. So we ordered out and had dinner together.....on the couch. Wasn't quite the same but nice none the less.

What a difference a couple extra hours of sleep does. Hopefully I'll be back on track with the blog and will update it more regularly this week. Today's a normal work day for me but at this point I don't have any night appointments so it should be a little easier week.

Here are a couple pictures of Colby that Tracey took the other day. (yes, I know..I need to start taking pictures again too)

Overdue update

Sorry for the long delay in posting an update. Monday-Wednesday I had relatively busy days and didn't get home until 8-9pm. Then I would do my best to help around the house, visit with the family and wrap up loose ends from the office. Thursday was a long day and then I had a friend over in the evening. The idea was that we would make some nachos, have some wine and play around with the guitars.....well...Colby had other ideas. I had Colby duty part of Wednesday night, all Thursday and most of Friday night. So I'm 110% tired, maybe even a little cranky and I simply haven't felt that social or that much like even going online much. Anyway....that's my sob story about why I haven't been on the blog in the last couple days.
Now onto better things....the Colbster! He's doing very well. Depending on what scale you believe, he's broken the 8 pound mark. I've seen improvement in his ability to keep his head up when we hold him. He has plenty of muscle to pull his head backwards, but it's bringing it forward that seems to challenge him the most. Nothing too new with his belly. We've been giving him some diluted pear juice every day and that's gotten things moving along. He continues to get up every 3 to 3 1/2 hours to eat. Although I'm finding that sometimes at night he eats less than during the day. I'll tell you, I love him and all, but he looses some of his charm once the sun goes down! Come 1am to about 5am, when I wake up to hear him screaming away and go in to change and feed him and NOTHING seems to sooth him....ow yeah......good times. I just bite my tongue and keep reminding myself this is all part of the deal. It's definitely worse when I'm really tired. But like I said...all part of the deal.
We've been sleeping in our room and putting him in his room. We can literally see his crib from the bed as it's right across the hallway. We can still hear his every little grunt and groan, but the 15 feet or so between us now helps Tracey and I get a little more rest. And like I said above, once he's up....we know about it!
He had an appointment to get a follow up ultrasound on his head this past Thursday. An assistant did the ultrasound and was going to have the doctor look at it. We haven't heard the results yet.
Colby had his first trip to my office yesterday. Fridays are my day to watch him. When he's sleeping, I'm able to get a lot of work done, either wrapping up paperwork from the prior days, doing research or catching up on e-mails. But yesterday I had to get into the office by the end of the day so I had to bring him. Everyone in the office was excited to see him. I unfortunately had to ask that people not touch him as we can't take the chance of anyone being sick and not yet knowing it. It was fun. I can't wait until summer when the cold/flu season is behind us, the weather is warmer and we can bring him for walks and all.
Tomorrow we're heading to Thomaston, CT. My hometown to see my mom and dad. They both want to see Colby. But Tracey and I also need some "Scott & Tracey time". So we'll let then watch Colby while Tracey and I blast downtown for a dinner. Boy are we looking forward to that!!!
I'm afraid I don't have any new pictures to post. I know you all keep asking that I keep them coming. I'll probably take a good amount tomorrow.
I just gave Colby a bath and then a bottle so he's out cold now. Tracey went to pick Evan up from his dad's and then is going grocery shopping. So I'm going to take advantage of a quiet house and relax for a bit. More updates tomorrow.