Work it. Work it.....

(Peacefully sleeping. )
( I love this BW of him )
("What ma? Lil' ol' me?" )
(Ma, Dad and Colby )
( Almost looks like he's smiling. )
( Ma spending time with her little boy.)(Colby is like an entertainment center every time we take him out of his incubator. He has a bunch of wires coming out the back of his blanket. )
( Being a superstar at 7 weeks old is a very tiring job.)
Sorry for not posting for a couple days. I've felt more tired in the past couple days than I have ever since we started this journey. I think it's all just catching up to me a bit and my body is finally telling me enough is enough. So I've been hanging low and getting a lot of much needed sleep. I didn't even go to the hospital tonight. Tracey and Evan went, but I just need a break and some time to recharge a bit.
Here's a good couple pictured today. They were all taken last Friday evening. I swear that it looks like he's working the camera sometimes. The thing you see wrapped to his head is simply a Velcro thing that holds his cannula or CPAP in place. I think it looks kinda funny and I'm sure one day Colby will be very pleased with me for posting so many pictures of him with this funny thing on his head.
For the last couple days, Colby's been loosing weight. Not much, but when you weight 2 pounds and 11 ounces, you just don't have that much to loose in the first place. The doctors tonight said that it could be because his intestines are cut relatively high up, that his body isn't able to absorb enough milk to get what his body needs. So they're starting him back on the supplemental IV's. The plan now is to wait until he's off the steroids for his lungs, then Colby will have surgery again to reconnect his intestines and put them back into his belly.
Apart from that, Colby's been pretty alert. He is anemic but the doctors are holding off on giving him another blood transfusion because his bone marrow should be close to starting to produce his own red blood cells. They said that the more you give transfusions, the more it tricks the body to not produce them itself. They continued to say though that if it drops to a certain level or if he starts showing signs of distress, they won't hesitate to give him one.
Because his last ultrasound didn't show any changes, they are now spacing out his ultrasounds a bit more. I'm not sure when his next one will be. If his head grows quickly or he shows clinical signs of problems, they'll do more frequent ultrasounds.
The big news.......Colby is now the senior preemie in our room. There used to be a baby girl next to him who had been there for about 6 months. She just transferred out the other day. So now Colby is the big man on the block. It's very interesting to see all the different kinds of parents that cycle through there. I can imagine that we'll be in that room for a good couple weeks before we are allowed to move to the special care room. In Special Care, they will teach us how to care for him once he comes home. We'll learn about his medications and any support (i.e. oxygen or apnea monitors) that he may come home on.
Colby is 7 weeks and one day old now. If he were still inside Tracey, he would be just shy of 33 weeks.

Thank you!

I’ve talked about Tracey and I going through infertility, about our emotions and about the loss of our daughter. But in some ways, this is the most challenging posting to write. I’ve gone through many versions of how best to say this without it sounding wrong. So here it is…..

A coworker of mine, Patrick, approached me stating that the people in the office wanted to do something for Tracey and I. As the conversation progressed, I heard how they wanted to do a pasta dinner as a fund raiser to help Tracey and I with the financial side affects of situation. I was at a loss of words. I’ve never been good at accepting help and this was a very large gesture. They’ve done all the planning and have things underway.

They have asked that I post something on here to help spread the word and to allow people who want to do something an avenue to do so. So for anyone who’s interested, please feel free to contact Patrick at 860-368-3304, by e-mail at PCIrishC5@aol.com or visit the following link:

https://www.signmeup.com/site/reg/register.aspx?fid=VY2VDK7

Tracey and I want to publicly thank Patrick, Chris and the entire office for efforts, your kindness and your generosity. We are so deeply touched by your caring and willingness to help. Thank you!

And......Action!

Here's our little star. Pictures are wonderful, but it's so great to see him moving and be able to hear him a bit. For those of you who have had children in the NICU, the beeping and alarms in the background may bring back some memories.

Colby has been doing well. He continues to get a little more time off the CPAP and on the cannula each day. His weight dipped the other day, but it seems that he's gaining weight again. The only thing that concerned us tonight was that his heart rate kept skyrocketing to around 200, his respiratory rate was going up and is oxygen levels were dipping. The nurses assured us that all was OK, but we were still concerned. It's a helpless feeling when you feel something wrong but you simply don't know what to do. The most you can do is ask the doctors and take their word. We asked a couple different nurses and got the same answers which made us feel better.

They continue to increase his feedings. He's at 8.3 cc's per hour. He still has a broviac line ( a thick IV in his leg ) and each time we talk to the nurses, they say that the doctors want to get that out as it's a site for an infection to start. But it's surgery to put it in and take it out. When he has his intestines put back together and put back in him, he will most likely need another broviac like, so they're debating wether to take it out and put anohter in or to just keep that one in.

His movement with his arms isn't smooth at times as his nervous system is still developing. But that should smooth out over time.

I love seeing him move around and watching his little blueberry eyes look about. I hope this gives you a better idea of how Colby is doing and what life is like in the NICU.

Three generations

Yet again I'm sorry for the delayed updates. My days are spent working and my nights are in the hospital. By the time I get home, I just want to go to bed. I can't wait for the days when I'll simply come home to see my son.

The last couple days have continued to go well for Colby. His ultrasound came back with no real change. We don't want to see it get any worse so we're glad to hear that news. He's now on a cannula for two hours a day and will increase his time on that little by little to get him off the CPAP. They've discontinued his feeding via IV's and is now fed only by a tube that doesn't down into his stomach. Hopefully in a couple weeks, he'll be able to try to bottle and breast feed. He's graduated into a different incubator now that he's a little bigger and isn't needing as much support. It's still enclosed on him, but it just doesn't have all the bells and whistles that his old one did.

All of this just goes to show us that during the hard times, just keep your head up and over time, things will get better. Sometimes it does take some time. In our case.....almost three months after we were first admitted to the hospital.

Colby will still need to have another surgery to put his intestines back together and put everything back into his belly. He'll need to have a thick IV that's currently surgically inserted into his leg and goes up into his chest removed. His lungs are damaged from all he's gone through and they'll need to get back on track. His brain bleed will most likely have some affects which we won't realize until down the road. But given the strength that he's demonstrated thus far and the expertise of the NICU staff, we're keeping our fingers crossed and hoping he'll do well through these challenges.

Colby has now met his grandparents. Above is a picture of my dad, myself and Colby taken the other night. I got to give him a bath that evening. I've also done my best to change his diaper. That didn't turn out so well, but I'm learning.

Tracey and I realized our video camera is a digital video camera. We're going to take some video and do our best to upload it. That will probably be done over the weekend.

Kodak moments

Finally, a picture of me and my boy! As you can see I got to hold him again last night for over an hour. Tracey has had a cold and therefore can't visit the NICU.

He was doing well again last night. I'll try to quickly update you on all that's happening. He's now up to 7 cc's of milk an hour. He goes from the CPAP to the cannula for an hour a day now. The CPAP blows harder than the cannula and therefor keeps his lungs from collapsing. The cannula doesn't keep his lungs open. So they'll start with an hour a day. Then go to two hours a day and keep increasing his cannula time until they feel comfortable that his little lungs will stay open.

He had his first eye exam yesterday and it came back good. Preemies can have a detached retina which can lead to blindness. Thus far, our little boy's eyes are doing well. The doctor said he's not totally in the clear yet and will check him again in two weeks.

His color is off. He's very yellow. The doctors said that his liver isn't working right yet. So he'll start on some drug to help his liver get up and running.

His head circumference seemed to have gone down the last two days. It can simply be the way the nurses measured it, but we like to believe it's actually going down a tad.

In another couple days,they hope to have him feeding only on breast milk. They wanted to do that yesterday but needed to keep his other supplements going for a bit.

So that's the scoop. I'm leaving the house in a couple minutes and will go right to see him from my last appointment today. I'll bring the camera and see how he's doing tonight.

I'm loving this good news !!

Counting the good days now

(picture of Tracey and Evan this past summer up at the lake)

Colby had yet another good day yesterday. He was still on the CPAP all day long. I really hope that this is here to stay now. He's just so much happier being able to move his head around and all. Because he was doing so well, I was able to hold him last night for about 45 minutes. We do what's called Kangaroo Care. That's when you hold your baby on your chest against your skin. The skin to skin contact helps keep him warm as he's still too small to stay warm himself. They can also hear your hear beat and you breathing which is supposed to help them.

He was very tired yesterday. I'm not sure if it's simply because he is having to work so much harder to breath on his own or if it's something else. I mentioned to the nurse that I thought he was more lethargic and she said she'd keep an eye on him.

They are going to do another ultrasound either today or tomorrow. If this again shows no change, they will most likely discontinue weekly ultrasounds unless they see clinical signs that something is changing.

He's also up to 6.5 cc's of milk and hour. With a little luck now that he's off the steroid for his lungs, he'll start to pack on the pounds again.

I'm tired this morning. My days have been starting before 8am when I'm on the road to either the office or an appointment. Many days I go right from my last appointment to the hospital and arrive around dinner time. Then after staying there for a couple hours I end up at home anywhere between 8pm and 10pm. Do that day after day and you start forgetting what day it is. I'm starting to feel as if I need a little vacation. Now that Tracey is working and with her odd schedule (monday, thursday, friday and saturday) it will be more difficult to get away together. But we'll work something out. Even if it's for a night or two. We've got a place on a lake in Maine and we both love it up there. I've been going to the same lake since I was a baby. It means a lot to me now to be able to bring my family up there and carry on the tradition. I can't wait until Colby is home and healthy enough for him to make his first trip up to the lake.

I was speaking with some other NICU parents and they come from very far away. Some even needing to stay over night near the hospital while the other parent is at home. Other's are finding it hard for both parents to work and one parent needs to stay out of work, thus affecting the families finances. Yet other families already have 2 or more little children at home which make it very difficult to take care of them, work and be at the hospital. So all in all, we are very lucky to both be able to work, to be only 35 minutes away from the hospital and Evan is old enough to be independent when we need him to be.

My name is Scott and I have a 6 week old son, Colby.

(above: Colby at 5 days. below: Colby at 5 weeks and 5 days)
I do love saying that !!!


Our little boy is 6 weeks old today. He's come a very long way.

HAPPY 6 WEEKS, COLBY !!!