"Not where, but who you're with that really matters.."

( You can see how Colby looks at whoever is working with him)
( This gives you and idea of his little "bottle".)
(Yup, tired again after having some milk)
( A neat shot of Colby in his incubator. They have openings on both sides to put your hands in. One side folds down and that's how we take him out.)
( A picture of Colby napping. We have the side of his incubator folded down here. The preemie clothes are still too big, so he gets his sleeves rolled up and his feet swim around in the bottom.)

The pictures above show Colby feeding from his "bottle". It's not technically a bottle as the amount he eats is too small. But they put a nipple on a small tube and he takes his milk that way. He continues to do well. I can't tell you how relieved we are when he shows steady progress.

We're still waiting for him to poop now that he's getting milk. The nurses say that because he's taking in such a small amount, that there simply isn't much to pass through yet. BUT, they are upping his feeds today and will continue to do so slowly now unless they see problems.

I think Colby will get another eye exam either today or tomorrow. They're spacing out his ultrasounds to every couple weeks now, so I don't know when they'll do the next one.

Although Colby is bigger than he was, he's still very tiny. I'll need to get his latest length. He still isn't as long as my forearm and hand yet. We've had some new babies come into the NICU and compared to them Colby is small.

I've been in contact with a couple people who have had babies with grade 3 brain bleeds. Their babies are doing very well. Each one has mild issues, either minor cerebral palsy or delayed learning or something like that. But given what I've read on the internet and been warned about, their stories still give me hope. I know it's very early on but I continue to be so hopeful that our little boy will do well.

I'm starting to wonder if it's even possible to strike a balance with work, family and hospital while Colby is in the NICU. It seems lately like no matter where I focus, some other piece gets left behind a little. That's been difficult for me. I wonder if things are really out of balance or if we're simply beaten up a little from a long 2 1/2 months of trying to juggle things. The nurse remarked the other day that our stay in the NICU has already been longer than most. And we still have a good month or so ahead of us. And yes, we've heard over and over once Colby comes home, there will be new challenges. But I have to think that having him home will be good for us. No more daily travel to see him. We can spend much more time together as a family and start to make memories at home.

Tracey and I continue to be touched by the support and kindness show during our journey. Bev and Henry, thank you for the meals you dropped off ! Jamie and family, thank you for the bears and the blankets ! Those are special to us. Doug & Lori, Mary and Randy, Sue and Ron, thank you for the outfits. Thank you to Mary's friend who knitted his hats. I don't like naming names because I know I'll miss someone and I don't want anyone to feel like we don't recognize what they've done. Thank all of you for your support during our dinner. Thank all of you for your regular visits to the blog. It's neat to see the poll results. I'll change the poll about once a week. And thank all of you for your e-mails and comments. I look forward to logging on to read them. You have all made this journey much easier to bear. The in the title of today's blog sums it up. It's not that we're in the NICU, but that so many people are with us in thought and spirit that makes a difference to us. Thank you.

The Blog

(Colby sometimes seems to hold his binky in his mouth. Every once in a while when I bring the binky to his mouth, he'll open wide as if he's ready for it. This shirt, as with all his other ones, was too big and I hadn't rolled up the sleeves yet. So he was holding his binky with his long sleeves on.)
(Colby always seems to grab his cannula or his binky.)
(Sleepy boy. You can see the tube in his nose. This goes to his belly and feeds him when he cannot take all his milk from the bottle)

I was a bit shocked when I went to the NICU last night. Colby wasn't in his spot. The place was empty. That certainly gets you thinking for a minute. I didn't think anything bad happened, but I wondered if they took him upstairs for a procedure. Or maybe he already went on to special care. I approached one of the nurses I know and asked "Ummmmmmm, where's Colby?". She smiled and pointed to the corner of the room. There he was, sound asleep. I guess they moved him to make room for some new babies that were coming in. I told him he's lucky now because he's got the corner office !!

He was doing well, continuing to take milk both with a small nipple from a bottle, and then he usually needs to finish the rest via the tube into his belly.

I feel good that Colby is showing so many "normal" signs. He is very alert. He can certainly see because he watches our hands, our faces and all that goes on around him. I'm pretty sure he can hear. But babies don't always respond when you talk with them anyway. So we'll have to wait and see more about that as time goes on. He reacts when I touch his hands, his feet, head or belly. So I'm glad to see that. We've been told that the more involved we are, the better Colby's outcome can be. It is very difficult having him35 minutes away, having to work and all. It's been about 2 and 1/2 months now of juggling home life and then the NICU. Sometimes it feels like less, and other times it feels a lot longer!

Last night I put him on a pillow on my lap. His feet towards me and his head near my knees. We were able to look at each other. I held his hands and did the whole "Paddy Cake" thing until I realized I didn't know how the song went. So we just make it up as we went along. Colby didn't mind though. He just laid there and watched. After a couple minutes, his eyes got heavy and he was out cold.

I sat there and thought about the past 2 1/2 months. I had looked at pictures earlier in the day of when Tracey was still pregnant, of Colby and Avery's first day and their first couple weeks. Amazing. Simply amazing that so much has happened. I fully understand that we're in no way out of the woods. And I realize that statistics say that Colby will have some issues. But I'm so very happy to see all that he's already doing, to see his progress and to see that he's a happy little boy.

I'm continue to be shocked by how many people follow Colby's story. I was at a school yesterday where I have many clients. I was actually sitting in their staff lounge when I heard I was going to have twins. So many of them followed our story well before Colby and Avery were born. So many of them came up to me yesterday to express their concern and show their support. That's simply wonderful. I know some of you read this blog so I thank you. It meant a lot to me to see all of you yesterday.

So many people have asked me how I can continue to write in this blog so regularly. Others have asked me simply why I started to put his story out there for everyone to see. And then why do you open up some of your personal life and hang it out on the Internet. It's to show the world what premature birth is all about. To allow people to read a bit about a family who is going through a very difficult time.....but is still doing well. And it's because of times like these....when Colby is doing well. It's good for people to see that even when times are tough, good things can happen. I've gotten comments and e-mails from people from all walks of life and from all over the country telling me that reading some part of Colby and Avery's story touched them. That in turn touches me. I know inside me that this blog isn't just for Colby. I get something out of it as well. The blog acts as an avenue to vent sometimes. It's a way to chronicle my son's journey. It's also a simple way to keep people who care informed about the latest events. But most of all, I get satisfaction knowing that the people who read this care. And once in a while people reading this have found hope about their own situation or realized that they in fact do have a lot to be happy about or thankful for. I hope that one day as Colby gets older, he will feel some sense of empowerment that his struggles and accomplishments helped others well before he was able to tell his story himself.

That's why I write in this blog.

Go Colby, go!

Just a quick update today. Colby is doing well. YESSSSSS !!!!!!!! I love it when things progress with him. He took his first feeding last night very well and even took 1.3cc of mild from a bottle !! That's the first thing he's swallowed thus far and he's over 2 months old !! Everything else has been via a tube in his belly. The nurse said that as of last night, all was going well and he was tolerating the feeds well. He continues to hover just below 4 pounds. Maybe we'll break the 4 pound mark over the weekend.

I didn't have any new pictures. I always try to be light hearted about things so I figured this picture would bring a laugh. After Avery passed, Tracey and I needed a night away from everything so we went to Stockbridge, Mass. While there we visited a shaker village. They had this fake cow where you could try "milking" the thing. Well, given that Colby's now back on milk, I figured what the heck! It's the only milk-related picture I could find!

Anyway, I've got to get on the road and start my day. I hope everyone has a wonderful weekend !

He's a lil' stinker!

(Colby says "Hehe, I pooped") (And now he's tuckered out ..... again.)

(My little boy)

And that's a very good thing. He finally pooped. Should I really say "Yippieeeeee" to that? Well, given his situation...YIPPPIEEEEEE! Other than that, not much to report. I'm going to call in this evening to see if they've started feeding him. I'll head over there tomorrow night after my day is done and spend some time with him.

I'm really hopeful that once Colby starts eating, he'll gain weight and strength. If he can continue to eat without any issues, we'll move to to "Special Care". Then it will be tackling the cannula and trying to get him off that. The doctors said that's a slow process that will take a couple weeks once he's ready. But we'll be there for him no matter what.

From day one, I've been big into giving Colby little massages. I'm no doctor but I have to believe that touch is a great stimulant for him. Most babies are held for a good part of the day. NICU babies are in incubators for hours on end with the only interaction being when nurses and doctors check him or when we're there. The nurses and doctors are very caring and loving towards the babies. And we spend as much time as we can with him. But it's nothing like the "normal" interaction that a baby has. So when I'm there, I love to hold his little hand, rub his arm or head. He doesn't seem to like his back rubbed much. He really seems to like his arms rubbed though. I'll hold his arm between my index and pointer finger and gently roll his arm back and forth. He'll stare at what's going on then usually his eyes get heavy. We also want to find some pictures or something for him to look at. I'm very interested to know more about the intervention and therapy we can do once he's able to be with us more to help him catch up as best he can. That will all come in time I guess.

Still waiting....

I looked back and saw a couple posts when we were "counting the good days". It's a bit of the same lately and that's nice. Colby was very content when I saw him this evening. He looked very good. No real change in his status. He still hasn't pooped. We're waiting for something to happen so they can start feeding him. The doctors will be getting more aggressive in trying to get his little digestive system moving. .

I love it when Colby is so wide-eyed. We can see progress in his eye coordination. He watches everything happening around him.

Tracey started working some new hours now. Wednesday and Thursday afternoons and evenings, then Friday and Saturday mornings. It's going to be very tricky trying to balance things when he comes home. We both need to work during the days, but daycare is out being that Colby's a preemie. That means getting someone to watch him at our home for some of the time. We'll look for a nurse who wants some extra money. One of the nurses had a good suggestion....a nursing grad student. We don't live that far away from UCONN, so that may work. Finances will get "tricky" to say the least when Colby comes home. But that's all part of having a baby.

I was speaking with the couple in our room who has a 1 month old baby who was born at 24 weeks. They're starting to feel burnt out. They're worn thin from the constant ups and downs, the daily travel and then nightly exhaustion. There's really nothing you can say to make things different for them. All I can do is listen and let them know each day is a new day. Their little one is currently fighting an infection. Hopefully that will resolve quickly. Although their baby was born even more premature than Colby and Avery were, he doesn't have any brain bleeds. So I told them in that respect they're lucky. But no matter what your little one's situation, time in the NICU is not fun and it's a long road. And it's a definite strain on the relationship. Very little is "normal" anymore. You're never home together and if you are, you're tired or doing what you can to keep up with all that needs to be done. At times, Tracey and I hardly see much of each other. It's an adjustment to say the very least.

Tracey wrote an e-mail to Oprah saying that she should have a show about Premature Birth. So who knows, maybe Tracey and I will be blasting to Chicago or where ever Oprah tapes.

Tomorrow may be my day off from the hospital. I'm tired tonight and I have to be on the road by 7am and won't be home until after 5. Plus, I'm traveling in the absolute opposite direction from the hospital. We'll just have to see what the day brings.

I'd like to place an order.....

(Soundly asleep)
(Waking up slowly)
(Ow so tired)
( A little smile )
(The famous Dr Casey!)

....for some milk please !!

Colby was doing awesome last night !!! He was very alert and happy. His weight is hovering just below 4 pounds ! They took the tube that suctioned extra fluid from his stomach out. His head circumference was actually down a tad. And today....today if he doesn't poop on his own, the doctors may help him a little. If all goes well with that....it's feeding time !!! It will be very small amounts to begin, but it's a start none the less.

We didn't hold him last night as we wanted him to stay comfortable in his incubator. When I see him tonight, I will hold him for a bit and also give him a much needed bath.

Dr Casey posed for a picture with Colby as well. What a great person and doctor this gentleman is. It must be an amazing feeling knowing that you have a direct impact on the lives of so many little ones.

Colby's got friends on the way now. Two of our friends, Heather and Tina, both had their babies in the last couple days. Another friend Liz is due in a couple days. So as Colby gets bigger and is able to socialize, he'll have some great playmates! Congratulations Heather and Tina!!!

What a big boy!

(two pictures from when Colby was 5 weeks old. He had grown a bit from birth at that time and has certainly grown more since)


It's absolutely amazing how quickly things change with Colby. And it's just as amazing how that plays with our emotions, pushing and pulling us as he has good times and bad.

I found Colby wide awake, squirming around and looking great yesterday when I went to see him. He weighs about 3 pounds 12 ounces now and just looks good. He's lost that "preemie" look to his body and looks more like a little baby now. His head is large, at least I think so. I asked the doctors if he'll catch up to the larger head from his hydrocephalus. Dr Casey said that if the hydrocephalus stays under control, his jaw and face will eventually catch up to the rest of his head. That's important to me. You never want your child to be stared at or teased and unfortunately, I can see that if he had an abnormal looking head that kids would target him for teasing.

Colby's last IV is out of his hand. So now he has everything going through his Broviac like, a very thick IV like tube that goes into his thigh into his bloodstream. He still has a tube that goes into his belly and sucks out any acid or backup that he has as he isn't being fed. The doctors think they may be able to take that out before too long.

All was well until Colby started breathing very fast, sometimes as fast at 90 breaths a minute. And his heart rate was fast too, up around 200 at times. You could see that he was having trouble breathing when you watched his stomach and chest. His whole body heaved as he would try to breath. Then he began to cry and nothing soothed him. He's been on the humidified cannula for a couple days now and we were worried that his body was getting tired. We called the doctors over. They cleared some junk out of his nose, but that didn't help him. I was torn because I had an appointment way down by the shore that I had to make. So Tracey stayed at the hospital and called me to update me on the happenings. Unfortunately you need to leave Colby in good hands at times. There's nothing I could do if I stayed. The doctors were tending to him. Tracey was there. And I need to keep my appointments. If I cancelled every time Colby had an issue, I would probably need to miss 1/2 of my appointments.

After some assessment, Dr Casey thought he might have been in pain as it's only been a week since his surgery. So they gave him some morphine and this did the trick. He slowly calmed down and his heart rate and breathing came closer to normal. I wrapped up my appointment around 6pm and headed back up 91 to the hospital to see him. Colby was doing much better. His heart rate and breathing back to where they should be. Around 8:00 last night, Colby started to wake up a bit and was more peaceful and content. The doctors said they would monitor his pain throughout the night and help him if they saw he was hurting.


We'll see how long he needs to stay on the morphine. Our next milestones are getting him to start eating. Once he can do that the doctors have said they'll move him into the next room which is the next step to coming home.

Some people ask what the hardest part about all of this is. I'd have to say it's changing your outlook. Once we found out we were pregnant, Tracey and I would talk about the future....having twins running around the house. Who would walk first? What would thier first words be? I always thought it would be "daddy". haha Daycare...how would be do that? I even thought about being at their school and hearing two "Reeds", one after the other getting their deplomas. But things change and there's nothing you can do about it. Sometimes I'm shocked when I think about how different our life is now. We now wonder IF Colby will walk...or IF he will talk. Depending on who you talk to, we hear either that a grade 3 brain bleed with Hydrocephalus is either devistating, or not too bad. Nobody can tell us what Colby's outcome will be. That by far is the hardest thing emotionally for me. Just not knowing. This just solidifies our belief that we need to be happy for all that we do have and simply make the best of all that we cannot change.

The eye doctor came in yesterday and no change in his eyes. So at this point, Colby still has state 2 ROP. Colby's head was a tad lower than the day prior. His head now measures 33 cm's around.


I'm afraid I didn't bring the camera in yesterday. But I'll do so today.