A short video of our tired Colby

(click on the little arrow on the bottom left corner to start the movie)


Tracey and I had a great time last night at the Halloween party. Have you every tried to find a butterfly net in November? That's why I'm holding a fish net in my hand. LOL Hey, it worked out fine. Tracey and I were both very tired today because we haven't gone out in months now and simply aren't used to it.


Colby is doing OK. He seems to be moving in the right direction, but had to get some morphine today to manage his pain. He was very swollen again this morning. He was given some meds to help his body get some fluid out of his system and was looking better by the afternoon. He was also having a little difficulty keeping his blood oxygen levels where they need to be. The nurse reassured us that this is all quite normal for a 3 pound baby that's just had surgery and was a bit worn out going into the whole ordeal.


It's such a long road having a baby in the NICU. There is another couple in our NICU room with a baby born at 24 weeks. They've been in there for about 3 weeks now and I talk with them whenever I get a chance. The other night we were talking and they are worn and tired. I did what I could to support them, but the reality of it all is that it's simply a long journey. The husband seems to have the same frustration that I do.....the unknown. You simply don't know what the future will bring. On the positive side, all the good outcomes are possible. But it's hard knowing that for your baby, those good outcomes are just possibilities, not certainties. I guess little in life is certain anyway.


I took a quick video of Colby the other day. I wasn't going to post it as he doesn't look too well and was pretty out of it. But I figured people care about him and simply want to know how he's doing....good, tired or otherwise. His eyes were very sensitive to light so the nurses turned down the lights in the NICU for us. That's why the movie is so dark. You can see that he's pretty lethargic. I'm not sure if you can tell by the video or not but he's bigger than I've ever seen him. He weighed 3 pounds 12 ounces the other day. I know that some of that is simply fluid that his body is retaining, but either way, that's the largest he's ever been.


I'm really hoping that in the next day or so he will continue to get stronger and be a bit more like himself again. After some good sleep tonight, tomorrow will be a better day.

Getin' better......slowly

When we arrived at the hospital this afternoon, Colby was still very sedated. Our poor little guy looks a little beat up, all puffy and very worn out. He's got so many tubes and censors on him, BUT, no more colostomy bag. The doctors and nurses said that they had to take him off his pain medication slowly because babies this small can go into withdrawal if they come off it too quickly. Tracey said he was looking better today than he did yesterday. His overall swelling is down. You can see in the pictures that he's still swollen. His belly is clearly larger. I like how he looks "filled out" though. I don't know how much of this will go away as he recovers and how much of it he'll keep on his him. Just have to wait and see like everything else I guess.

While we there there, they decreased his pain medication. Within about 15 minutes he started to come to and was pretty active. This would have been the first time he was that alert since his surgery. He didn't seem pleased at all find himself back on the respirator. The tube going into his lungs doesn't allow him to move his head. Plus, he has IV's in both arms and his wrists are taped to little boards to keep his wrist straight while the IV is in it. This makes his two hands into little clubs versus the nimble little fingers he's used to. It was interesting because even when he was still very sedated, when Tracey and I would touch him and talk to him, his blood oxygen levels would go right up into the high 90's (anything from high 80's to low 90's is normal for him right now). So in some way our contact stimulated him a bit and that was an awesome thing to see.

Dr Casey came by to update us on a couple things. He said that once they are able to start feeding him, one thing they will watch for is leakage. They don't want anything leaking form his intestines into his belly. Secondly, the better part of his intestines haven't had to work in over a month. So the bacteria that is normally found there could be way out of whack. They'll watch for that as well and if need be, give him some cultures to start regrowing this bacteria. When he does start to eat again, they will introduce food into his belly very, very slowly. He hasn't really pooped since his surgery. There was a little bit of "something" after his surgery, but not the real movement that would constitute a bowel movement. The doctors say they hear good bowel sounds and that they wouldn't expect much to happen there until he's truly being fed. We've got some time until we need to contend with poopy diapers. I never thought I'd be so anxious to see my son's poop! Weird how things are in a different perspective sometimes.

We asked Dr Casey about the latest on his hydrocephalus. He said there's no real change. As long as things don't get blocked and pressure doesn't build again, he's hoping that his brain will eventually grow and start to push the extra fluid out. He said this is a slow process. But it's something I wasn't aware could happen. So that made me feel much better.

When we left, Colby was a little tired but still moving about. We told the nurses it would probably only be a matter of time until he got frustrated and pulled his respirator tube out of himself.

About 15 minutes ago, the phone rang. Caller ID showed it was the NICU. They rarely call and whenever they do, our hearts race. Luckily, it was simply the nurses keeping us up to speed with Colby's antics. He did indeed try to pull his tube out. They took it all the way out and put him on some kind of humid cannula. I'm not sure what this is as I haven't seen it yet. But Tina (the nurse) said that they didn't want to put him on the CPAP as that forces air into his body and with his recent surgery, they don't want to force air into his nose, down his through and into his belly. The cannula simply feeds him oxygen and he has to do the breathing himself. I'm not sure how strong he is having just come off the meds, but the doctors will watch him closely and if need be, give him assistance with his breathing.

Tracey and I are doing our best to carry on a bit of "normalcy" in our lives. We're heading to a Halloween party tomorrow night. We like to dress up in costumes that go together. So this year, she's a butterfly and I'm a butterfly catcher. I need to give her the credit for this one as she came up with the idea. However, she's getting a butterfly costume from her sister. Done. My butterfly catcher costume....whatever the hell one of those is supposed to look like .....is up to me to create tomorrow. We figure just some kind of safari-looking thing, maybe with some props, would work fine. So I'm off looking for something to make me look like an official butterfly catcher tomorrow.....but only AFTER I see my little boy.

Words just don't do it

Colby continues to do well. He's still not with it yet as the doctors have him all drugged up. However they anticipate getting him off of his medications by the end of this weekend. He was kept sedated to help keep him mellow and not move around a lot until his belly healed a little. The pictures above are from Wednesday, the day after his surgery. You can see he had IV's in both arms and his incubator was a bit different. We loved being able to have him in the open air and be able to freely touch and talk to him. I wasn't able to see him yesterday, but Tracey did. She said that he was doing OK, but very swollen. His entire body was swollen. The doctors reassured her and said that's "normal". I'll head over there today and spend some time with him.

Last night was a very special evening. People from my office along with friends and family organized a benefit dinner for us. I simply can't express how Tracey and I feel.

Tracey and I were talking on the ride home and we realized there was a special and unexpected side effect as a result of the dinner. My side of the family, Tracey's family, so many friends, some new friends and other's I haven't seen in years were all together in the same room. That alone puts a smile on our faces and give us strength to carry on through the tougher times. So simply by all of you coming together, you gave Tracey and I yet another special experience.

From the day Tracey and I entered the hospital, the support people have shown has been so moving. "Thank you" doesn't begin to express our gratitude for everything all of you have done. It's such a good feeling to know that there are so many good people who care. I want everyone to know as you carry on your days that you have made a difference. You have positively effected my family and impacted on our lives. This is something very special and words simply can't do justice and properly express what Tracey and I feel. It's a feeling that you just can't understand unless your in our shoes. Thank you, thank you, thank you!

It will be a wonderful day when I can tell Colby about the extended family that supported him while he was just a little, little boy.

Colby's Surgery

Colby's surgery went well. We visited with him before his surgery then again in the evening. He made it through with out complications. His color is good and he looks comfortable. He is a bit out of it due to the pain meds. They will keep him on them for a few days to make sure he isn't in pain. Once he is able to poop they will start his feedings again. Hopefully, once he starts the feedings he will start growing which will make him stronger and his lungs and digestive system will start to function on their own. The quicker this happens the sooner he can come home.

Thank you for all your thoughts and prayers. Our family appreciates your support.

Boooooooooooo!

Well, we had some fun with Colby this evening.....maybe at his expense. LOL. Even the nurses were getting into it and laughing. Colby...well...we wasn't too sure what to make of the whole ordeal. Because Colby is having surgery tomorrow, he won't be able to be dressed for a while, he'll be back on the respirator and may have some extra tubes running from him for a bit. Tonight was our opportunity and we took it and Colby got his first taste of Halloween two night's early.

Tracey had found a Halloween Onezy thing on e-bay. Like everything else right now, it's a little big on Colby. But we managed to tuck him inside of it. Then we took the incubator cover that Tracey made and laid that over a pillow. Lastly, we propped Colby up and snapped away. : ) I think he enjoyed it though. He was watching me with the camera,Tracey and all of the nurses laughing. So as you can see we did our best to keep a fun, light hearted mood for him this evening.

As for his "medical stuff". His results from his eye exam came back. Last week he had stage 1 ROP. Stage 1 is just the beginning of any signs. This week....stage 2. There are 5 stages in all. A child may only progress to a certain level and stop. We're keeping our fingers crossed that he's done at stage 2.

He's also getting another blood transfusion tonight before his surgery. He's been a little lethargic and his blood numbers have been a little low. So this should make him good and strong before his surgery tomorrow.

Other than that, no real news today. No results yet from his head ultrasound. We'll probably find that out tomorrow. Tracey and I are headed to the hospital first thing in the morning. Colby is scheduled to go into surgery at 1pm, so we want to see him before they take him from the NICU.

These past couple weeks we've seen Colby's weight bobble around. His head grew, but then slowed down. And now the start of ROP. Tomorrow will be no different than all the other days. We will just take it one day at a time, one hurdle at a time and no matter what happens, we'll just make the best of things. Given all that Colby's been through, he's a very content little boy. He rarely cries. He loves to look around. He loves to hold your finger (he can't really hold your hand yet as his whole hand barely goes round my finger). I like to think that our being with him so often and doing what we can to help him keep his head up through all of this is in some way making his stronger and making it a little easier for him to get through things. It's that same sense of being there for him to help him deal with things and overcome the obstacles that life brings his way that I look forward to.

Many people have said that they don't know how we can continue to keep going or how we can keep a good outlook. Honestly, it's not easy. But Tracey and I understand the alternative. We could tumble over and say how tough things are. We could sit and cry and talk about how this is the farthest thing from what we envisioned when we started trying to get pregnant 4 years ago. But why? Crappy stuff happens every day. And if it wasn't this, it would be something else......finances, work, relationships, raising a teenager....or even the weather. It's all the same. Just stuff you sometimes can't control. And although you can't change it, you can change how you react and how you get through it. So we recognize the reality of the situation we're in, but do our best to focus on the good in life. We focus on all that we DO have, on the good days Colby has and of the possibilities that are still open to Colby and our family.

Your support, comments and e-mails have had a big impact on us. We are not alone during this journey and that makes a difference. I want to say thank you to everyone for all you've done and all you are doing. It certainly makes it easier to keep our chin up and to continue trudging through some of the harder days.

Monday Morning

(Colby taking a nap while I hold him) (Even preemie clothes are too big for our little Colby right now. This shirt goes up to his hears and down below his belly. He's hot his knees bent up near his bellly in this picture which makes the shirt look even larger on him.) (Colby all stretched out before he gets changed)
(Another of Colby before he gets changed.)

(And here's our little boy all snug and ready for the night. You can see we roll up his sleeves to make them fit.)

Colby has had a good couple days. Nothing too new to report. He's gained a couple more ounces which puts him just above 3 pounds now. We've got a lot going on today. Dr Casey has ordered another ultrasound of his head. We usually don't get those results back until the next day though. Colby's also having another procedure done on his belly to prep him for tomorrow. And lastly, he should have another eye check to see what's going on with his ROP. I've got an office meeting in the morning, then an appointment in the early afternoon so I'll head over to the hospital late afternoon or so.

Tomorrow is Colby's big day. His surgery is slated for 1pm. We probably won't know too much until later tomorrow when we talk to the surgeons and see how things went. Then it will be yet another "wait and see" thing. Man, I don't like that !!! We've had to "wait and see" about his brain bleed, a couple different times when he was showing signs of infection and, well, just about every other hurdle he has encountered. I guess it makes sense though. The doctors do what they can, but then you really do just need to sit back and wait.

I do my best not to let things in life bother me. But the last couple nights I've been tossing and turning a lot. I'm not sure but I wonder if Colby's surgery is on my mind. Everyone will be better once Colby comes out of surgery and we see he's doing well.

So that's about it for today. As we get information about his tests today, I'll do my best to update the blog. I don't know how tomorrow or Wednesday will go. So depending on what's going on, I may or may not update for a day or two.

Colby's two months old now!

(Colby giving us a little smile) (Tracey and the nurse trying to unwinde Colby's wires and tubes to get him dressed)
(Nothing fits Colby as he's too little. Even Preemie clothes are too big)
(Nothing like mom and son time)

(Colby all tucked away back in his incubator and ready to take a nap)

(Mom and dad holding Colby's hands. You can see the hydrocephalus in the back of his head)

Wow, two months old! It feels like he should be two years old given all that he's gone through. Happy Two Month "Birthday" my boy!!!

We found Colby doing well last night. He was pretty tired because he had to go for some procedures on his lower intestines in the morning. We asked the nurse if they sedate him during all of that and they said they didn't. So I can imagine that he was upset and tired out from that ordeal. The surgeon came in very quickly and said everything was looking good for Tuesday. He said that another surgeon would be in touch with us to go over the procedure and all. So we'll need to wait to hear from them.

Colby gained a little more weight last night. 3 pounds and now 2 ounces. It's a far cry from his one pound and change that he weighed at birth. But to look at him, he's still pretty thin. I honestly wonder how much of that weight is the fluid in his head.

I brought the camera to the hospital last night. I LOVE taking pictures of him. When I got home and downloaded them, I realized I had taken 116 pictures !!! It's easy to do when yo have a digital camera. And half of them were blurred or similar to other ones, so they get deleted. That's the good thing about a digital camera, you can take 1,000 pictures and pick out the 5 good ones.

You may remember us talking about a doctor that we really liked, Doctor Casey. And that the doctors in the NICU rotate in and out from time to time. Well, Dr Casey just rotates back this weekend and will be with us for the next two weeks or so. Tracey and I were very happy about that. The other doctors were all wonderful too. But you know when you just have a good feeling, or a connection with someone? That's all the more important when that someone is taking care of your little boy!

This past week I've made a conscious effort to try to rest up and get back on my feet. I've gone to bed really early, come home during the day if I didn't have appointments and slept, and just tried to find a balance again. I'm feeling sooooooooooo much better ! Kind of funny how it all works because I'm just back on my feet and what's around the corner?............Colby's surgery. haha. Hey, that's the way life goes sometimes.

Thank you, Katie, for posting your comment and sharing your story. I'm soooooo glad to hear that our story in some way has helped you and your husband. I can't tell you how motivating it is for me to hear that our ups and downs help someone else through their day. Tracey and I said from day one that we didn't want to simply trudge through this journey, but rather do whatever we could to make something positive out of what otherwise could just be a very long couple of months....and maybe now years. So thank you, thank you, thank you for your comment. : ) And know that in time, all will work out fine.

I think...and I may be wrong....for those of you who do want to post comments, I think you can click on comments at the end of any of my blog entries. Then type in whatever you want. But then select "anonymous" under were it says "choose an identity". This allows you to bipass entering a username and password. When this is done, you can then press Publish your comment.

Anyway, I'm going to do a little work this morning.....then off to see my boy. We have a new Cabela's store here in CT and I'm going to bring my stepson there this afternoon. They're supposed to have a lot to look at. I hope you all enjoy your Saturday!

Ow....and Happy 2 month Birthday again, Colby !!! Hey, maybe I should by him a Dave Matthews CD as a present or something? I looked for DMB preemie stuff but there just isn't anything out there.