My Son is a UCONN Health Center Honor Student

(Picture from a couple weeks ago)

Well almost......he passed his oxygen test today! We couldn't believe it. The doctors said that some babies just all of the sudden pass with flying colors. So from here we need to wait another week and they'll repeat the test. If he passes again, then they keep him there another week off the oxygen to ensure he won't have any issues. If all goes well with that, then we COULD have Colby home in a couple weeks!!!!

The home stretch........

(Colby has this new "whistle face" he's discovered. I'm still not sure what it means, but it's cute either way.)
(He's getting bigger and filling out his clothes better. You can tell by the blur in his legs that he likes to kick his legs around quite a bit.......................P.S.Remember you can click on any of the pictures to make them larger.)


Sorry for not updating the blog over the weekend. Things were extremely busy and now a days, when you don't see any entry, it's usually because there's nothing new to report.

Colby is doing well. Nothing too new to report. His liver test came back showing his bilirubin (spelling) was high. But the doctors anticipated that. Tracey and I got shown how to draw up his medication. Nothing too tough at all. We simply draw it up in a syringe, but without the needle. Then put his medications in his milk when we feed him.

His weight has plateaued a bit. He has hovered around 5 pounds 8 ounces for a bit now. The doctors want him to grow more as he's a little behind, even for a preemie. So they're adding a couple more calories to his feedings. Hopefully his belly will tolerate it well.

At this point, it's pretty much just his dependence on the oxygen that's keeping him in the hospital. I think tomorrow or Wednesday they may test him again.

They did a hearing test on his last week. His left ear passed without any issues, but they said he failed on his right ear. So Tracey, the wanna-be specialists that we are, did our best to determine how his hearing is in his right ear by covering his left and making sounds near his right ear. As best we can tell, it's in our "professional opinion" that Colby hears very well in both ears. haha

The physical therapist was saying that she wanted to see if he could lift his head. When she was watching him, he wasn't doing much. But I know that he can very easily lift his head up towards his chest. Or at times when I have him on his belly lying against my chest, he will push right up with his arms pick his head up and look around! So I take all of that as good news....but we've just got to get him to do it for the therapist too!

Yesterday was our baby shower. Tracey and I had a hard time "allowing" our family to do this as people have been just so wonderful is helping and supporting us from day one of our journey. But they were adamant that we needed one. It's always great to have family together, no matter what the reason! Thank you all so very much!!!

For the past couple weeks, I've had a bit of a hard time with the whole hospital thing. I've been totally worn out from going there every day. But I find that so much is in the way you look at things. I can either focus on how tired I am, or I can focus on all that we have going for us and take a deep breath and recharge as we're truly on the home stretch now. Yes, it's been over 4 months since this whole journey began, but look at where we are.....our son is doing great. He's been faced with many obstacles and isn't out of the woods yet. But we can already say that he's overcome so much.

We painted his room last week. I can't wait to start piecing his room together. What a cool thing to organize a room where your child will come home to. I can image it's a neat event for anyone expecting a child. But it has to be different when you really know your baby...have held them, fed them, etc. Each time we visit with Colby we can't help but to think that we simply want him home. It's a very exciting thing to know that he'll be home "soon". So I'm feeling rejuvenated and re energized to keep our spirits up and get Colby home!

Friday

Colby looked really tired last night. But he just got done with his last immunization shot and the nurse said he might feel a little of because of that.

I did ask about his hydrocephalus. The nurse he had last night was new to him (in other words, she hadn't had him before). So I'm not entirely sure she knew his whole situation. Anyway, she said that his hydrocephalus is getting better. She measured his head while I was there and it really hasn't changed for a bit. My only concern is that as I understand it, as his skull hardens, the hydrocephalus won't be able to push his skull outward. The pressure instead just puts pushes on his brain. So I'll ask his nurse again today to see if she has the same take. I'm also going to see if I can speak with a doctor.

Colby will have his liver checked today to see how it's working. Some of the drugs he's been on can affect his liver.

One update on his lungs.......if he fails this coming week's oxygen test, they'll probably give him a dose of steroids to help his lungs a bit. That will hopefully get him on track and help him breath without his cannula.

Tracey is already off to work (she works early in the morning a couple days a week.). I got up with her because I've got a lot of work I need to get done today before I head to the hospital. This afternoon the nurses are going to teach us about giving Colby his medications so that should be interesting.

It's funny how there are stereotypes out there. When I tell people about Colby's story, I often hear "Wow, your wife must be tired! I'll bet she goes to the hospital a lot." Now I'm not looking for a "good dad" badge or anything. But I find it funny that there's just an assumption that the mother is very involved, and that me, the father, is somehow just not that involved with the whole NICU thing. I don't get upset or anything, I just find it interesting that people take that stance.

December 5th

(Colby is a great communicator.....he lets the whole NICU know when he's hungry. And when he's hungry AND getting changed.....his message is very clear! You can see the scar that's left from his belly surgery. It's a little red but the doctors say it's probably some of the stitches from underneath just poking through and nothing to worry about. They're keeping an eye on it though)
(But with a fully belly, Colby's a happy camper. Thank you Ma Dimauro for the cosy blanket. : ) Colby loves it!)

About nine months ago, December 5th started to have a very special significance to us. It was our twin's due date. Little did we know they would arrive 101 days early. I would be fibbing if I said that Tracey and I don't ever think about if they had gone full term. Obviously things would have been quite different. But we feel that going through all the "what if's" doesn't do us any good. Things happen for a reason and we can't change that which has already happened....just how we react to it all.

So here we are, December 5th, Colby and Avery's due date.....and all is well. The past 4 months have taught us a lot. We've met some absolutely wonderful people. We've learned much more than we ever thought we would about babies, pregnancy and development. We have a beautiful new son, a wonderful teenage son and a great relationship between us all. We have done all we could to make this as positive of an experience as we could and we think we've done an OK job. And those are all wonderful things.

Colby was great today. I visited with him for a bit and he was happy and content. I like hold him in one arm, rub his head with my other hand and rock him while I tell him what's been going one. He usually just sits there, watching me and listening. Sometimes you can see that he's trying to fight to stay awake.

The doctors and nurses say he's a very content baby. Although I have limited experience with babies, I would have to say he's pretty easy going. He gets fussy when he's hungry, but apart from that, he's just content to look around and listen.

They did his oxygen stress test today and once again he failed on the first part. The specialist said that it could simply be that he's growing so quickly that his lungs aren't able to keep up. I guess that makes sense. This will be our next hurdle to overcome. The nurse said if he can get to the point where he can at least rest and cry without help, they may send him home with oxygen that he can use when he eats. But that's still a little ways away so we'll wait and keep our fingers crossed.

It's funny because pictures aren't kind and sometimes I get home and look at the pictures I've taken and think that his head is really large. It is larger than a "normal" babies head because of his hydrocephalus. I do wonder to myself if it will always be proportionately large or if he'll somehow grow into it. Since we've moved to the Special Care Unit, our doctor visits are less. In a way that's nice but we're used to the doctors coming by to give us updates. I think I'm going to ask tomorrow about his head. When I went into the hospital today, a new nurse had him. Because this was the first time having him, she wrote notes about him on a piece of paper. I saw it and on it she had written "Hydrocephalus and shunt". Now, Cobly doesn't have a shunt now, so I have to wonder if the doctors may be considering this. Just about all of the other mothers of babies with hydrocephalus have asked when he's going to get a shunt. But in the NICU every doctor we've talked to said his case wasn't to the point he'd need one. I just get worried having not talked with a doctor for a bit and then seeing this note. Yup, I'm going to ask about it tomorrow.

100 days....

Today marks 100 days in the NICU. And 120 days if you include the time that that Tracey was on bed rest in the hospital. And boy does it feel like it! For the last week or so, both Tracey and I have felt burnt out (yes...again..). We're still very optimistic about Colby's outcome. But we're tired. We're not entirely sure why. We've been very busy at home trying to get rooms ready, painting, moving rooms around which means your house looks like a bomb went off with thing things from each room being moved "out of the way for now" which really means just put somewhere until we get to putting it somewhere else. We don't get to see as much of eachother as we'd like to. Tracey usually goes to visit Colby in the day on the days she's not working. I then go after my day is done. Tracey has also been picking up extra hours at work which has made her more tired. The holidays are coming up and all that goes with that. Lastly, when Colby still had all the tubes in him and all, it seemed like the NICU was where he was "supposed" to be. I mean, he needed that high level of care and we wouldn't even think of bringing him home as he couldn't survive without it. And he still needs a lot of monitoring, but it's different in special care. We arrive and simply reach into his crib and pick up him up. We sit and rock him, change his diapers, his clothes. Give him baths. So in a way it feels as if he should come home. And I'm sure it will happen soon enough. But the daily drive and visit to the hospital is starting to get very old now. All in all it's about a 3-5 hour event to go visit him....40 minutes there. Then if you spend even just a couple hours and drive 40 minutes home....you're looking at almost 4 hours. Work a full day, then tack on 3-5 hours to visit the hospital and then arrive home at 7...8...or even later at night and you're spent. Ow...I almost forgot...do this over and over and over for months on end. You can see how it wears on you. When we were in the NICU the nurses said that once we got to Special Care, we'd be very eager to get him home. Now I know what they mean. And soon enough he'll come home.

So I'm sorry for not reaching out to friends and family very often. And I'm sorry mom, dad and Brigette for being so short on the phone. But I'm simply tired.

OK, enough venting.....

The eye doctor came to visit with him yesterday. They had been seeing him every week to monitor his eye development because he was showing signs of ROP (this is an issue with preemie's eyes when they don't develop properly.). However, on Monday's appointment the doctor said Colby is looking better and they're now starting to space out his visits. Once Colby comes home, we'll have follow up visits with the eye doctor to have a better feel for how his eyes are.

And Colby will have his next oxygen stress test tomorrow. One nurse said that it's not out of the question that Colby could come home on oxygen. I've heard of preemies doing that so we'll just have to wait and see.

The doctor also talked to me about Colby getting an MRI. There's something called PVL (periventricular leukomalacia) which are areas of the brain that were starved of oxygen at some point and the white matter of the brain is scarred. An MRI will show if Colby has suffered from any PVL. They said that they'll most likely wait until just before he's discharged to do that. The good news is that thus far, the ultrasounds haven't shown any signs. If Colby would have had any serious cases of PVL, they would most likely show up in some way on an ultrasound.

Colby's new formula seems to agree with him better than his old one did. So he's eating like a champ and continuing to add on a couple ounces a day. I think he's up around 5 pounds 8 ounces now.

Colby has become quite the star in the NICU. Many of the nurses and staff know him well. They are doing an article about a student nurse who is graduating and they wanted to get a picture of the nurse with a preemie. And wouldn't you know they picked Colby! I'm sorry that I don't remember the nurse's name or the details of her graduation. I'll get a copy of the article and fill in the details later. But I thought that was pretty neat.

Lil' Piggies

All is well with Colby, nothing really too new to report. He's up to about 5 pounds and 5 ounces and seems to be doing better with his new formula they're giving him.

I babysat for our friend's baby last night. It was a great experience and I can't wait to have Colby home.

I'm wiped out tonight and don't really have too much to report on the Colbster. Tracey and I are going to try to start getting his room ready this week. But we'll see how things go.

The pictures up above show how Colby's grown. The little foot was from when he was about a week or two old. The bigger foot is from a couple weeks ago. He's a growin' boy !!!

Either tomorrow or Tuesday Colby will have another test to see if he can keep his blood oxygen levels up when he's taken off his cannula. Come on Colby !!!!!!

Groundhog day

(pictures from last week...you can tell because he still has his feeding tube in. What a big boy Colby is becoming!)

Colby continues to do well. They've started a new fortifier in his milk and it seems to be agreeing with him a little better. He's dropped a little weight in the last couple days, but it could be because they changed his diuretic and he's simply loosing water. However, yesterday he was an eating machine. He's been taking about 60cc's of milk each feeding. Yesterday he was taking either 70 or 80 cc's. So that should help him pack on some pounds.
The physical therapist saw him again and stopped by to update me. All in all, things look pretty good. His symmetry of motion is good. He has good muscle tone, eats and swallows well. She wasn't able to determine how he tracks with his eyes because I guess he was a bit sleepy when she evaluated him. But when I was there yesterday I would move left to right and he would clearly follow with his eyes. So yet another good thing! Tracey and I have said from day one that we want to be as educated as we can to help Colby with his development and all. So she's going to give us a packet of things we can do to help him along. That will be great.
I'm sorry I didn't update the blog yesterday. From time to time I just hit burnout. I don't want to answer the phone, don't want to check my e-mail don't want to update the blog. Nothing. It takes everything I've got to get up, make my appointments, drive to the NICU, spend time there and get home around 8 or so at night. I'm torn right now because I want to go visit with Colby, but my body is telling me to take it easy. Tracey and I have a lot going on this weekend so maybe it would be best if I just hang at home and tend to the list of things that have been let go. Tracey and I laugh because from time to time, we rotate taking days off from the NICU. We say that Colby doesn't know what time it is. There's no windows in his room. So for him the past 3 months have just been like one very long day, or like the movie groundhog day. Tracey took the day before yesterday off because she was working a double. So when she came in to see Colby yesterday, I told Colby "Hey, look, Mom's here. Remember she was just here 3 hours ago?"
The NICU had a nice farewell for Dr John Casey. For those of you who are new to the blog, we first met Dr Casey the night that our daughter passed away. Not a good situation to meet someone for the first time. But he was wonderful and from that day on we just grew to respect his expertise and enjoy his company when he was working with Colby. It was neat to hob-nob with the staff outside of the NICU and I felt honored to be apart of their event.
So that's the scoop for today....some good news and some progress with his belly. In just a couple days they will try doing his oxygen test again. With a little luck he'll get a little farther. If not, we'll just wait a week and try it again.