Fussy boy

Colby had a bit of a tough day today. He was pretty fussy as his belly continues to hurt him. I have been feeling his belly to see if it gets hard or if there are any hard areas and as best I can tell, everything is soft. He had a massive poop this morning. While I was changing him I had my first experience of what seemed to be more poop ending up in my hand than in the diaper. Uuugggghhhhh. Nasty stuff. But it's all part of the deal.

The visiting nurse is coming tomorrow and we're going to ask her about his belly. I feel that it's just a case of an irritable belly and just time will take it's course. But it's good to have someone keep an eye on it being that he's had belly surgery. The nurse weighs him and I'm anxious to see how much weight he's gained.

Thank you for your ideas about getting help with the Pregestamil. We're going to look into both avenues. I was surprised today when I was in Babies R Us that they didn't carry it there. Huh...

This week Colby has a follow up with the neurosurgeon. We've been feeling his soft spots on his head and they continue to feel soft and "empty". When his hydrocephalus was progressing, the soft spots felt firm and full. Almost like a blister would. I'm not sure what the doctor is going to do on Wednesday, I'm assuming an ultrasound to check if there's been any change over the past week.


Colby's room is coming together. We've got the Crib and changing table. And today I ordered his dresser. That should arrive at Baby's R Us in a week or two.


Some of you have asked how Hamilton is doing. Well....he's pretty bummed. He's been moping around and when he lies down, he's been letting out a deep groan as he lowers his body. So we've been doing what we can to give him some more attention today and he's loving it!


My week coming up is relatively slow work-wise given that New Years falls on Tuesday. That's a good thing as it's been quite an adjustment for Tracey and I. I think between the lack of sleep and change of sleep routine, plus we went from 5 months in the hospital, to then sleeping in the hospital and trying to square away a little bit of Xmas shopping, to having him home. One after the other. So we think it might take a couple days....maybe a week to get settled in.


I know there are a good number of you who read this blog who recently had children. Others who had kids a little longer ago. How long did it take you to "adapt"?

Pictures.....

(Hamilton doing his best to open one of his Xmas presents)(Success at last) ( "I can look sophisticated if I need to")
("Hey baby....")

(The hat says it all)

(That's my boy. )

Everything is going very well with Colby. He had his first pediatric doctor's visit yesterday and everything went very well. He's now 6 pounds 8 ounces. He was on a mix of breast milk and formula when he was in the hospital but his belly was really bothering him. He would cry when he ate and he had some nasty diarrhea. So the day before he came home, we switched to 100% Pregestimil and that seems to have done the trick. Holy crap, that stuff is expensive! He's much less fussy and his poop seems to have become more normal. So I think that may have a lot to do with him putting on some good weight. The doctor asked many questions about his behavior and development. At least for now, he really seems on track.

It's a small world out there. While we were in college and for a couple years there after, Tracey and I lived in an apartment near UCONN. We had some neighbors who were our age and we'd hang out a bit. We each moved on and went our separate ways. Well, when Tracey was at the doctors yesterday, the woman who came out to give her some paperwork looked familiar...it was Beverly our old neighbor! I know it means nothing to all of you but I'm often surprised at how small the world is.

Colby is sleeping pretty much the entire time between feedings. He's taking anywhere between 50 and 90 cc's each time he eats. The only thing is that he hasn't pooped since earlier today. However after looking online, I guess that could be normal for babies especially if they just went to 100% formula. All you parents out there must get a kick out of reading about my nieveness....and probably all the more because I'm a guy. Hey, it's all new to me and I'm doing what I can to learn about it all. I've already mastered holding him in one arm so I can get stuff around the house done and I'm getting really good at changing his diaper in record time while guarding against not getting peed on.

At least thus far, Tracey and I have taken turns during the nightsnights. The night I was sick, Tracey took care of Colby. Then, every since, Tracey has been working so I've been getting up at night. I think that we may end up splitting the nights sometimes too. For those of you who have kids, how did you end up working it out?

I continue this blog for a various reasons. But the main reason is for you guys....friends and family. While Colby was in the NICU, things were changing pretty much day by day. Now that he's home, things are going to mellow out a bit (at least I hope so), so what kinds of things would you guys like updates on? I know....many of you have told me you want PICTURES!!! LOL I'll certainly continue to post them.

But seriously, let me know the kinds of things you would like to know so that this blog stays interesting for you.

Colby's first day home

(Someone's getting sleepy)
(Finally, the family home on the couch!)

(taken while at CCMC)
(What a good big brother)

Thank you all for your comments and e-mails. Colby's a luckily little man to have all this support and attention!

Colby's first day home has been wonderful. He's waking up every 3 hours to eat. He was very awake today....which I hope will mean he'll be very tired tonight. At noon the visiting nurse came. Colby now weighs 6 pounds 4 ounces and is a whopping 20 inches long. The visiting nurse will come about 2-3 times a week. I had mentioned earlier that birth to 3 would come tomorrow...I was wrong. It's Colby's first pediatric appointment tomorrow afternoon.

Some people have asked me if it feels weird having a baby home. Actually it feels completely natural. Tracey and I are just happy to have him home.

Luckily, I'm feeling 100% better now. It was just one of those bugs that hit you quick and hard. Tracey works from 2pm to 10pm on Thursdays and then works at 6am to 2pm on Fridays. So Thursday nights will be one of my nights to take care of Colby. So it's the Colbster, Hamilton and I camping out in the living room. I think we'll soon sleep in our room. But for now the living room works out well. My sister in law, Amie came over to watch him this afternoon as I didn't want to be near him until I felt totally better. Thank you Amie!

Evan has been wonderful with Colby. Even while Colby was in the hospital, when he was at his dad's house, we would call to check up on his little brother. Tonight, he offered to stay in the living room with Colby so that Tracey and I could get a good night's rest. So we're very lucky that Evan is such a good young man.

Well, I'd better set up camp on the couch because Colby should be getting up between 1 and 2 in the morning to eat and I need to get a couple hours rest before hand.

The new chapter begins..............

Well, here we are, home at last. And so begins a new chapter in our family's journey. I honestly can't thank you all enough for your support though out these past couple months. I'm amazed at how we've all connected. I continue to get e-mails from new people who are all over the US. Some of you I've never met in person, yet we have this connection and that's a neat thing. Babies tend to bring people together I guess.
I will certainly continue with the blog. If anything things will get more exciting. We still have numerous doctors visits and medical events that have yet to play out. I know the visiting nurse is coming today. I think Birth to Three is coming tomorrow. We've already got follow up appointments booked for next week and well into the future. But what I look forward most to posting on the blog are the "normal baby things", the stories of smelly diapers, of his first's, of his interactions with our 105 pound dog, of Evan the big brother and how he does with all of this....... the little family things that we've been looking forward to for years.

A kitchen conversation at 3:30 am

Uggghhhhh, I haven't been this sick in years. I think the past couple nights, staying at the hospital with Colby and getting very little sleep wore me down. One of the nurses said that there was a bug going around the floor and I guess it somehow found me.
I can finally keep water and cool aid down which is good because I'm dying of thirst. My fever is on it's way down so hopefully this is just one of those 24 hour things.
I just meandered into the kitchen to get myself some water and some ibuprofen as my head is pounding. Tracey heard me up and stumbled from the living room into the kitchen. I looked behind her and saw the cosleeper up against the couch. She stayed on one side of the kitchen and I at the other. We've wanted this for almost 5 years now....and it's finally come to be, we have a baby at home! When we were going through infertility we would often talk about the day when we would bring our baby home and how we'd just work as a team to get through any hurdles we encountered. It's great to see that this is coming true. We would watch the Baby Story, Bringing Home Baby and all the other baby shows on TLC. And now we have our own story, our own baby and man there's just nothing better than that.
As we stood in the kitchen, each of us with bed head and squinted eyes, we laughed that this isn't exactly the way we thought it would all happen...but either way, here we are.....home with Colby and hopefully in a day or two I'll be back on my feet. We called the doctor and he said that once I'm no longer showing any signs of sickness, I can be around Colby. I think even for the first day or two after that, I'm going to take some precautions.
Thank you all for your comments. I love the optimism! And you're all right....this is just a hickup in the big picture and the good thing...we're both home with Colby. Life is good!

If you like drama....this blog is for you!

Don't worry, Colby's home.

My title refers to our currently situation.....

OK, so for the past 4 months, Tracey and I have been running on empty, lots of stress and little sleep. But for the most part, we kept ahead of getting sick. Now just today, the day Colby finally comes home, I started to feel sick to my stomach and my belly started hurting. As we were waiting to be discharged, I just kept feeling worse and you know when you're going to get sick how your mouth kinda waters...well, that started happening. So I bailed out of the hospital, left Tracey there and drove myself home where I proceeded to throw up and spend a lot of time in the bathroom! I've got the stomach bug or something!!!

Luckily our living room is on the entire other end of the house so Tracey and Colby will live there and I'll live in the bedroom/bathroom until I feel better. We called the doctor and asked what I should do. They simply said to keep my distance until I'm feeling better.

So that's where things stand....Colby is home and Tracey is settling in and I'm trying keep to myself and not throw up on things.

Finally

I've got tears in my eyes as I type this......but our day has finally come. We're taking Colby home in the next couple hours. We still have to do all the discharge ppwk, but we'll be home by this evening.

More to come......

Is today the day...?

(Colby Pre-bottle)
(Colby post-bottle)

Last night went pretty well. He was very fussy before midnight, and then again at each feeding, but apart from that, he slept very well.

This morning has been a busy one thus far. The nurses have come in to follow up on a couple things. The Neurosurgeon's assistant came in to look at Colby's head and I just came back from bringing Colby downstairs for his ultrasound. We don't know the results yet.

Tracey is on her way in from home. Today MIGHT be the day he comes home. It depends on what the ultrasound shows. So I'm sitting here equally anxious to see Tracey or the neurosurgeon...whoever walks through the door first!

Latest and greatest from Colby's room

(Mom holding Colby last night)

(Colby's crib at the hospital)

(Colby liked his bath...)(...until he got out.)
(We got a bouncy seat for him and luckily he seems to like that.)

I told you that I'd probably be posting a lot now that I'm staying in the hospital with Colby. Above are a couple pictures of Colby's new setup.

Things seem to be going well. The neurosurgeon came in today just before I headed home and said that all in all, Colby's situation seems to be pretty good. They're going to do an ultrasound tomorrow to see if his ventricles have filled again after they did his spinal tap. If the ultrasound looks good, he said they'll send him home tomorrow. OR.....if it shows that all the fluid has just come back, then they'll keep him and do a shunt probably Thursday or Friday.

Man, things are never dull in Colby's room!

Last night was my first night staying with a baby and it was....well...an experience. LOL He ate a lot at around 9:30 and then again around 1am and slept through until about 6am. But as any new parent can attest, you hear every moan, groan and in Colby's case...every grunt followed by a fart. His belly continues to bother him and he although he is able to go poop, it has to work pretty hard to get thing moving. They're giving him something to try to help him have less gas and hopefully that will help him feel better.

On top of Colby making all kinds of noises, our room is directly in front of the nurses station. And we have what seems to be the social hub of our floor right outside our door. Lastly, because we're in a children's hospital, there are kids in all the rooms around us. And a couple times last night I could hear a poor boy crying loudly and shouting "I want my mommy.......!". Poor guy. It's got to be scary for a little boy or girl to first of all be going through whatever medical challenge they may have, but secondly to be put in a strange place and at times be left alone without family around.

So tonight I'm going to try to put some white noise on or maybe the TV or something to drown out some of the commotion outside our room.

It's just Colby and I tonight. In a way I kinda like that. I of course love spending time with my lovebug, but it's neat to have one-on-one time with your baby. Plus I have the crew of nurses just outside my door if I need anything so it's a gently transition to being home alone with him.

For me....there's a couple things. First it was to spend so much time with my wife and my new son over the past day or so. Secondly, we have a bit of a tradition that when Evan comes home Christmas Day (Evan always goes over his dads Christmas Eve), we always put on some holiday music and the three of us have our little Christmas. Evan has loved this since he was little and it's just our little ritual. So that was neat....that amid all the chaos that's swirling around us right now, we still held onto this piece of normalcy. As for the material stuff....I'd have to say it's the nice LL Bean wool sweater Evan and Tracey got me. I love LL Bean.

So what about you guys? How was your Xmas? What was your favorite part of the holiday?I don't know who will be checking this blog given it's the holiday. But to the extent you're able to and want to share, please feel free keep in touch and give me something to read. : )

Merry Christmas to the Colby Fan Club!

(He didn't like the whole Santa costume thing much....)

From Scott, Tracey, Evan and Colby

Christmas Eve At CCMC

Hmmm, where do I begin? The last day or so feel as if they could have been a week. Just a lot going on. I guess we'll go in chronological order.

I spent last night at home while Tracey stayed in the hospital with Colby. Neither of us slept well. I just kept tossing and turning and Tracey was kept up with Colby. He's been very fussy and hasn't been eating well. CCMC uses a different milk additive and it seems to be giving Colby a hard time with his belly. He'll cry when it comes time to eat, but then when he does eat, it's sporadic and at times he just won't take the bottle at all. He was eating about 60-80 cc's of milk each feeding.

Thus far today, he took 55 cc's at 9am and then I just fed him around 1pm and he only took 45 cc's. You can tell it's his belly though because he keeps bearing down like he's trying to poop but nothings happening. Sometimes he'll push and then all of the sudden just start crying uncontrollably. And as quickly as it starts, it passes and he goes to sleep. Tracey got some of the old additive and we're going to use that until it's gone. Colby couldn't eat after 4am. And when Colby's hungry, EVERYONE knows about it! So around 8:30am the surgeon came in to talk with Tracey. While at UCONN, he was talking about doing a shunt. But the plan changed this morning and he did a spinal tap instead. This is when they go into the lower spine and withdraw spinal fluid. The fluid in your ventricles connects to your spine and it circulates throughout. So the thought is to take some fluid from the spine, then wait until Wednesday when they will do another ultrasound or MRI and see if the pressure is relieved or if his condition has gone right back to where it was before they took fluid out. The surgeon said that they were able to withdraw quite a bit....although now I don't remember just how much. You you can tell the difference in Colby's head when you feel it and I even thing you can see a little change in the front on his head. If, come Wednesday Colby's condition seems to be the same as it is now, in other words if after they drew out the extra fluid, his ventricles didn't fill up again, we may be looking at coming home around Thursday. Or, they may want to keep him longer to watch over him.....or they may try other procedures or a shunt. We're still in the fact-gathering stage of all of this.

It's difficult being transferred to a new hospital because they do things differently, they don't have all the records yet, don't know Colby, use different medications and milk additives. But each day that goes by they'll get to know him and we'll get to understand how they do things.

It's funny because it doesn't feel at all like Christmas. Tracey and I aren't exchanging so we each brought Evan to let him get stuff for us. Then we obviously got Evan gifts. I wrapped his and Tracey's things this morning before coming into the hospital. Tracey is out trying to do some last minute shopping now. But that's about all the shopping we've done thus far. They have a Santa that comes around the hospital and I guess they take the kid's picture with him. When I arrived today, there was a little toy for Colby and a Polaroid of Santa standing in Colby's doorway with the toy....I guess he came while Colby was in the operating room. Sorry Colby....you missed Santa this year. : (

The hospital we're in now is a Childrens Hospital. It's all brightly colored with paintings of animals on the walls, play rooms and other kid-related stuff. It's interesting because you see all kinds of children here, from infants being carried by nurses or pulled in little red wagons, to teenagers walking the halls with IV's being pulled behind them. The floor we're on is for noninfectious conditions. So they're are children battling cancer and other infants. I continue to be amazed at how this experience puts things in perspective. Just when you start to think "Man, this sucks!" just look down the hall.....those kids may never make it out of here. Colby is here to do some good, to make him better. It certainly puts things in a different light.

I can imagine not many people will be checking the blog over the next day or so as it's the holiday. And that's really a good thing. I hope everyone is enjoying their time with friends and family because that's what makes the holidays so special! I will most likely be posting more frequent updates on the blog as I'm here in the room with Colby....and wireless internet.

Colby's moved to CCMC

Well, today was a rather busy day. We got a call from the UCONN NICU saying that Colby was going to be transported today from UCONN to Connecticut Children's Medical Center (CCMC) around noon. I guess UCONN doesn't have the specialty of pediatric neurosurgeons that CCMC does. The neurosurgeon comes from CCMC to UCONN to review cases and then if they need further treatment, the babies get transported to CCMC. They said that we should meet Colby there and that he would be on the pediatric floor, not a NICU unit. For anyone who's been in a hospital, you know how "normal" rooms are. There's a bed, TV, visitor's chairs and a little bathroom. This is exactly what Colby's room is like except he's in a big crib, not a bed. The good new of all of this is that he's stable enough to be out of the NICU. However, the poor little guy would be laying there alone in a room except when the nurses would come in to check on him. So Tracey and I are going to take shifts to stay with him day and night to keep him company and take care of him until he finally comes home. And at this point, we're not certain when this may be now.

When Tracey last spoke to the neurosurgeon it sounded like it was almost definite that Colby would get a shunt and it was our understanding that we were being transferred to CCMC specifically for this purpose. The nurses at the UCONN NICU also said that the surgeon was standing in front of them and said the same. However upon our arrival at CCMC today, the doctors who oversee the whole floor seemed to think that it was more for monitoring and that they were going to do a spinal tap first, watch him for a couple days and then see about a shunt. It's evident to us that the surgeon and the general staff at CCMC haven't talked much about Colby's case yet.

So...we're in limbo again, not exactly sure what the next steps will be. We're going to wait until the morning and get the story from the surgeon when he comes in. He has placed an order for Colby not to eat or drink anything after 4am. So he must be planning some kind of surgery tomorrow. We obviously won't let them take Colby until we know what's going on.

I did end up going out last night and had a blast. But....I got home a little later than I anticipated. Tracey and I laughed today because this morning we were lying in bed and we were talking about how we were looking forward to tonight. Our plans were to get Colby settled into CCMC, then come home, hang low and get to bed early. Well, scratch that idea! She'll stay with him tonight. I'm home and plan on going to bed early and getting a good night's rest. Tomorrow night, maybe both she and I will stay there or maybe she'll come home and get some rest. Christmas day, Evan will come to our house so she'll stay at home and I'll sleep in the hospital with Colby.

Colby is having a couple of his "firsts" today. The biggest...it's his first time out of the hospital! His first car ride....well, maybe a special transport ride but it's a ride none the less. His first time seeing the outdoors. And tonight will be his first night with one of his parents. That's all very cool stuff!

I have to say that we so enjoyed the staff at UCONN. Tracey and I were talking about that tonight as we were getting settled into Colby's new surroundings. I know some of you read the blog so should you read this, please pass the word that Tracey, Colby and I already miss you guys!

We've pretty much scrapped any holiday plans. We are going to have a little Christmas when Evan comes home from his dad's and we'll both come home from the hospital to give Evan some normalcy there. Then he and Tracey will go over my sister in laws for some family time.

So that's the scoop. Lot's going on yet again and a definite change in plans. Tracey and I have become very flexible when it comes to things changing. You just have to be in situations like this.

Still no word, Dad's going out and pics from Maine

( "Ho..Ho....zzzzzzzzzzzz")
(All wide-eyed)
(most of the pictures I take are more of his face. But the one above gives you a little bit of an idea of his head. The hydrocephalus is mainly out the back.)

The neurosurgeon didn't come yesterday. So we're hoping he'll come today. Our guess is that Colby will still come home on Christmas day now. Even if the surgeon looked at Colby's situation today, I think it's pretty unlikely that he'll schedule surgery before Christmas. So we'll probably bring him home, then bring him back for the consult with the surgeon and then back again for the surgery. I'm not too sure how the recuperation time is for something like this.

I was again a bit disappointed that we still don' have any answers. I was visiting Colby by myself yesterday so I just sat with him, held him for a bit and made the best of things.....I put his santa hat on. He cracked me up because he could feel it on his head and he'd scrunch up his eyebrows, give a good grunt and push that hat off with his hands. Little stinker!


Colby is now over 6 pounds. As of last night he was 6 pounds 1 ounce. He may fluctuate back and forth but at least he broke the 6 pound mark.


I got his car seat installed yesterday. Today I'm going to try to get to baby's r us to pick up some of the things we need. I'm anxious to get his room all together. We currently have his crib. Today I'll probably pick up his changing table and dresser and then the basics....diapers, wipes etc. I can't wait to have him home!!!! Just a couple more days!!!!


Tonight a couple friends and I are going to head out to see a local band that we really enjoy called Columbia Fields. (http://www.myspace.com/columbiafields). We've gotten to know the band a bit over time and we'll see some other friendly faces while we're out. Boy do I need a night out! LOL Tracey is doing her own thing and going to have some mom and son time. She and Evan will do a little Christmas shopping then probably grab a bite to eat and maybe a movie. Like I said before, she's a wonderful mom. : )

You know, I never posted any pictures from our time away last weekend. Here are a couple pictures for you all. Absolutely great place! I've been going to the same lake since before I could remember. I can't wait until things settle down and the whole family...Tracey, Evan, Colby and I...ow ya..and Hamilton of course, can go up there!(First things' first...sleep! Our first day up there we were snowed in and got about 8-10 inches on top of the couple feet that was already on the ground. So we kept the wood stove going, watched some TV and just slept!)(Day two we woke up to brighter skies, plenty of snow and a couple deer coming across the front yard.)(Hamilton LOVES the snow!!! It wasn't much above zero degrees, so we bundled up and headed out to do some snowshoeing. You can get a feel for the depth of the snow...there is a fallen birch tree behind Tracey. There is snow on the top of it going all the way out of frame!)

(I managed to tap into a neighbor's wireless network long enough to check the blog. hehe)

Change in plans? Maybe....

When you have a baby in the NICU, the one thing that's certain is uncertainty...

Tracey and I got the results of Colby's MRI yesterday. For the most part, things look good. There's no signs of PVL or any other "dead spots" in his brain. The mass of his brain seems to be developing normally. So we were very relieved to hear this. But we could tell the doctor had something more to tell us.

The MRI shows to a much greater degree the extent of Colby's hydrocephalus. We could clearly see that his ventricles are extremely enlarged thus pushing his brain against his skull. Here is a link where you can learn more about what hydrocephalus is and some possible treatments.
http://www.pedneurosurgery.net/hydrocephalus.php3

The doctor did say that in Colby's case, we may have a couple options but that we needed to speak with the neurosurgeon for the details. One would be to put a shunt into his brain which then has a tube which runs just under his skin, down the side of his head and follows down into his abdomen where it would drain. Another option might be to go in and somehow widen the tube which would normally allow the fluid to drain. We could see on the MRI that this tube is very narrow in his case. We're not sure what this would entail. The doctor said that when we talked with the neurosurgeon, he would give his opinion on what would be best and explain them in more detail.

We arrived at the hospital at 10:30 am. Tracey had to go to work for 2pm so I stayed and waited for the neurosurgeon to come. At about 6pm, the neurosurgeon called and said he was stuck in a surgery and couldn't come. He said maybe he'd be able to come talk to us today (Friday) or Saturday.

So...that's where we are...in limbo. We're not sure if this will jeopardise Colby coming home for Christmas. We're not sure when they'll do his surgery or what surgery he may get.

As you can imagine, this took the wind out of our sails. It's been a long couple months and at this point, Tracey and I have very little emotional reserves. We need things to fall into place a little. A shunt is a relatively common procedure now a days to treat hydrocephalus. However, we thought we were beyond that possibility. For the past couple months we'd ask the doctors if Colby needed a shunt and they said probably not....now just days before he's scheduled to come home, the story changes. The reason is that the MRI showed in greater detail Colby's situation, but we're frustrated that if this was the case, why did they wait so long to do the MRI.

Water under the bridge..... We now need to focus on today, then tomorrow. We still need to go through the motions of getting ready for Colby to come home on Tuesday. It's hard though because we're not sure he will. So today I need to go get his car seat inspected at the police station and maybe get some of the last things we need.

Tracey and I are totally out of touch with the holidays this year as you might imagine. If Colby were to come home on Christmas, we would stay home Christmas eve, probably go to the hospital and start preparing, then on Christmas day we would go get him and stay home. If he doesn't come home, I'm not sure how festive we'll feel.

Sorry for the rather negative posting today. But we're tired and frustrated.

I guess in the big picture if this is what Colby needs to help him along, then it's best that he has it done and that's what we need to focus on.

Happy Birthday Mommy.....

Today is Tracey's Birthday! I obviously write a lot about Colby and some about myself. But what I don't write enough about is my partner, my friend, my soul mate, my love...my wife.

For those of you who don't know Tracey that well, she's a mother of a 14 year old son, Evan. And ever since I've known her, she's been 100% dedicated to ensuring the best for him. When I met Tracey she was going to school full time, working on the weekends and some weekday evenings...all while she was a single mother. Throughout our years of getting to know each other, I was simply more and more impressed with the person that she is and all that she brought into Evan's life, and now mine.

This past year has been especially challenging. After years of infertility, we finally got pregnant. But the cycles we were going through had their side affects which landed Tracey in the emergency room while only a couple months pregnant. Later we prepared for the arrival of our long awaited babies, but were presented with a very challenging situation. All through our journey Tracey has been an outstanding person, mother, wife and friend. Her outlook, partnership and support have helped me through some of the tougher times both in this past year and ever since I've know her. I simply can't explain what having her as a wife, as a friend, means to me.

Colby is one lucky boy. He's overcome so much and has so many people pulling for him. However as the years tick by he will come to realize that maybe the best part about his life is the love, caring and laughter that his mother brings to him.

Happy Birthday Tracey. From Evan, Colby and myself....we love you.

Pack your bags Colby....

("What??!!! I'm going home??!!!!")
("So mom, tell me more about my new room.....")

'cause you're comin' home!!!!

He passed his oxygen test yesterday. That's two weeks in a row. So now he's off of his cannula and at least as of last night, he was doing very well!! Tracey and I got the good news on our way back from Maine. We went directly to the hospital and spent some time with him. He looked great. Finally, we get to see him without any tubes on his face.

During the rest of our ride home, Tracey and I wondered when he might be able to come home. While we were visiting the doctor came to speak with us. If things go as planned, we'll have the best Christmas present ever! Yup, they'll send him home Christmas day! Isn't that awesome??!!!

We signed a consent form to have him get his MRI. That should be done sometime this week. We're anxiously optimistic about the outcomes of that and I hope we'll have it be the end of the week but we may not hear the results until early next week.

Tracey and I now have a laundry list of things we need to do to get him home. The NICU wants every parent to do an extended stay. This is when the parents stay with the baby at the hospital for a longer period of time, drawing up and giving all medications, taking care of the baby's needs, etc. They just want to be 100% sure that the parents are ready to have a baby who needs special attention at home. For Tracey and I, this will happen this Sunday. We'll pretty much spend the whole day there. We also have to get our car seat installed and finish getting the odds and ends we need to have him home.

We're very happy about this news. It's been a very long road. But it goes to show you that things change if you can just keep your head up and hang in there.

A growing boy and a trip away

Boy I love pictures. They help tell a story, keep a memory and put

things in perspective.

(Colby at 3 weeks and one day old)

(Dad holding Colby at 4 weeks old)

(And look at our boy now......15 weeks and 5 days old as of yesterday)

(Colby shouts "Hellooooo there. Can someone please put my clothes back on?")

(Peacefully asleep)

I hadn't seen Colby in a couple days because I was battling a cold and simply didn't want to chance going to see him if I wasn't feeling well. But yesterday I was feeling better so I went to see our little boy. He's doing great. The nurses said he had a very good day, quiet and content. He weighed 5 pounds 13 ounces. That made me happy to see that his weight is moving in the right direction.


The doctor said yesterday that they will try to do an MRI next week. Again, they're doing this to see if he has any PVL. PVL happens when areas of the brain have essentially died due to lack of blood flow. Colby is at risk for this because of his brain bleed and his hydrocephalus. I don't know when they plan to do it but we'll be very anxious to hear the results. They will also do another stress oxygen test around Tuesday.


I've noticed lately that Colby's right eye turns out. It's been gradually getting more noticeable. And it's most noticeable when he's tired. I don't think that this is anything to worry about but I'm going to ask about it. I know many people who read this blog have had babies, some preemies. So if you have any insight into this (yup, a little pun intended there), please feel free to share your experience.


Colby continues to take his bottle like a champ. He's been on the slow flow nipple but is starting to show signs that he's ready for the medium flow.

Tracey and I are off to Maine today for a couple days. We love it there.

The last time we went anywhere was to Stockbridge, MA after Avery passed away. It was at the end of a very tough experience. At that point we needed time just the two of us, time to gather our thoughts, reflect and balance ourselves. Now we're getting away again but for different reasons. This trip we hope will allow us to re energize before a new, exciting chapter of our journey.....when Colby comes home.

No news is good news

Sorry I haven't posted anything in the last couple days, but there really hasn't been much to write about. It's funny how much things have changed in the last couple months. Back then, we were biting our nails every day we went into the hospital, just waiting to hear what the day was bringing. Now that Colby is doing better, things are mellowing out, which is very nice! The latest thing is his growth. Or lack there of. The doctors are again going to try to increase his calories.
I've had a cold for the last couple days and therefore have stayed clear of the NICU. But I'm feeling better today so I'll head on in a bit later.

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 !!!!!!