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.

The Worlds Smallest DMB Fan

(I'm going to bring the camera into the hospital today and take some new pics of Colby. This one is from last week)

Well, we were told yesterday that Colby will most likely go for surgery this coming Tuesday. They're doing some tests on his lower intestine today to see what they are going to be up against as it's been inactive for over a month now. Colby's breathing has strengthened, his blood oxygen saturation levels seem to be more consistent then they were in weeks past, he's gained a little weight and he's 100% off of the steroid which could inhibit healing. So our little guy is just about as prepared as he could be for his next hurdle.

Tracey and I are a little nervous. I think part of it is that he's finally leveled off with his breathing and seems pretty stable. This surgery will set him back and that will be hard to see. We fully understand that if he comes out of it fine, then he will be even better. And to be honest, we're a little worried about him. He's still very tiny. I'm worried that the surgery could mess with his blood pressure, thus affecting his brain bleed and or hydrocephalus. And there's a laundry list of other things that could happen, just as with any surgery. But it's hard knowing he's already gone through so much. Focusing on these doesn't do any good. We know that Colby will be in good hands and we need to simply support him and send all the positive energy we can.

I saw a very moving show in TV the other day. Tracey is a big Oprah fan and depending on what the show is about, I sometimes watch it as well. This particular show had two people who had terminal cancer. They knew their time was short. One was a father of three, the other was a young married woman. Their stories were very touching but the whole message that both of them projected was simply to enjoy what you have today and make the best of today, because you never know what tomorrow will bring. Their stories touched me. I do my best to keep a positive outlook and not take things for granted. I do what I can to bring things into my life that support this way of thinking and I also try to limit the things that work against it. I've mentioned before that I'm a huge Dave Matthews fan (Tracey would certainly attest to this). I never liked him until I listened to his lyrics. Now, I can ( and do ) listen to him whenever I'm in the car. He lost his father at a young age. He has two sisters who he's very close to and one of his sisters was murdered. He's taken this otherwise really crappy situation and turned it into an eye opener and a catalyst to looking at things differently. He has a very good outlook on life and sings about enjoying the days that you have, being happy for what you've got and not taking things for granted.

I've already told Colby that he will one day be an avid Dave Matthews fan. Yup, the nurses laughed when they heard me, but that's OK. It's always good to be your own person. I'll bet those nurses are closet Dave fans anyway.

Lots going on

Sorry for not updating in a couple days. As I've mentioned before, I'm beat. Even just verbally updating people lately has been draining for me. I continue to try to find a balance between the NICU, work and home.

There's been a lot going on. As I mentioned in my last update, Tracey and I wanted to meet with a doctor to ask why they aren't doing anything to help Colby's hydrocephalus (i.e. putting in a shunt). For us to just watch day after day as our son's head is so large and at times getting larger is just so hard on us. The doctor did make us feel a little better. He said that at this point, the pressure his hydrocephalus is putting on his brain is probably minimal. He likened it to blowing up a balloon. The most pressure is needed to first blow it up, but once it expands, you need very little pressure to keep it that size or make it a bit bigger. He also said that putting a shunt or reservoir in isn't to be taken lightly. The risk of infection is serious. If the fluid is drained too quickly, it could cause more bleeding in the brain to fill the gap where the fluid was. Or, the quick release in pressure could cause damage and bleeding. They continued to say that if Colby showed signs of trouble. ie. if he was very lethargic, unresponsive or having apnea spells, that this would be a sign that the pressure is getting to be too much. But this isn't the case. Colby is a happy, very alert little guy. His breathing continues to strengthen. Just last night they had his CPAP settings down to 21% oxygen. That's just about what you and I breath in room air. He wasn't liking it too much but that was the first time I saw him on such a low setting. After about a 1/2 an hour, they moved it back up to 25% and Colby's blood oxygen saturation levels mellowed out.

Colby's head is growing out the back. I try to take many of his pictures straight on as his head looks "normal" this way. It's when you see him from the side and especially without his hat on that you really get a sense for how large his head has gotten. So I asked what if any problems could come from the growth happening out the back of his head. We were told that the baby's head is extremely pliable. Babies who are on the CPAP for a long time often have this condition. The reason is because the CPAP is held in place by a velcro band that goes around his head. (look at the picture above) Then two foam cushions are placed at his temples to hold the tubes in place. The pressure from the band and the tubes are just enough to restrict his head from getting bigger where the band is. The only place pressure can go then is out the back. He said that once Colby's off the CPAP, they then position him in a way that allows his head to slowly go back to normal.

So that brings us to getting off the CPAP. Right now, he's on the CPAP so much because when he's on the cannula, he works to breath a little harder. And with his intestines not being connected, Colby looses weight when he moves around a lot or works to breath for an extended period of time. So to maintain his weight and to try to help him gain weight, they allow him to be on a cannula only 1 hour a day until he's able to have surgery to put his belly back together. Colby couldn't have the surgery right away because he was on a hormone to help keep his blood pressure up. This hormone inhibits healing. They stopped his drip of this hormone over the weekend and the surgeons finally come to see him yesterday. Colby is now slated to go into surgery sometime around the middle of next week. The doctors say that this will set Colby back in the short term. When he comes out of surgery he will be back on all his IV's, back on the ventilator and they'll have to take a "wait and see" stance again. The better part of his digestive track only worked for the first week or so of his life. It's laid dormant now for over a month. So there's a question of how and if his intestines will react to having to work again. BUT....once this is done and if all goes well, Colby will gradually work back up to a cannula and he'll then be getting full feeds of breast milk which really helped him start to put on weight a couple weeks ago.

I held Colby last night. He was doing well and very content to be held. He's such an easy going baby. He doesn't cry much at all. He loves to look around and I love to see him taking in his little world in the NICU. When they weighed him last night I was very happy to hear he broke the 3 pound mark. Not by much. He was 3 pounds even. But that seems like a heavy weight compared to where he's come from. The more he can pack on before his surgery the better.

So, that's what's been happening. Quite a bit and the next couple weeks will be long ones and Colby enters surgery and then starts to recuperate.

I don't like rollercoasters!

(Hamilton saying "Aw we deew yet?"...I give Hamilton a not so intelligent voice)
(Dad taking in the colors across the lake)

(Dad and a very wet Hamilton down near the shore)

(Dad and Hamilton relaxing)

My time in Maine was wonderful. Beautiful weather. Spent time with my dad and Hamilton. And most of all....I relaxed and slept. Each night I was in bed around 8 or 8:30. I was feeling so refreshed and revived.

Colby has been doing well now for over a week. His head hadn't grown. They were planning on doing surgery to put his belly back together. But then on the way home, Tracey called me. Normal head growth is in centimeter a week. Yesterday, Colby's head grew a full centimeter in one day. It's amazing how this roller coaster of emotions affects us. We were both feeling really well. Then to hear this news just crushed us. Within minutes of hearing it, I felt tired again.

And that's not all. He had an eye exam a couple weeks back to check for ROP (see this link for some information about it http://www.nei.nih.gov/health/rop/index.asp ) and at that time, all looked well. He had another exam yesterday and now shows early signs of it.

Ugghhhhh. We want things to smooth out so that we can start to count on good outcomes. After over a week of relatively no change, we were starting to feel we were coming out of the woods. But that's just not the case when you have a 25 weeker.

I found it interesting to see how after feeling so much better, it just took this news to set me back. It goes to show that yes I'm holding a busy schedule, but probably more than that, it's the NICU roller coaster that's draining me.

Colby will have another eye exam in a couple weeks. That will give an indication of whether his eyes are better, the same or worse yet. Tracey and I are going to talk to the doctors and ask they why they aren't putting a shunt in. We understand there may be complications, but having this much pressure on his brain for this long can't be good. We feel that we want some more solid answers.

On a lighter note, I'm throwing some pics from this weekend up. You see Hamilton who just LOVES it up there. And my dad...who just LOVES it up there too.

Well excuse you, Colby.

(Colby getting weighted. He squirms around like crazy when he's unwrapped and on the scale. So it was hard to get a decent picture. But it's nice to see him without his hat on.)
(And here he is when I left him last night....back on the CPAP, looking around)

For those of you who have spent time in the NICU, the monitor above may bring back memories. It's the screen that displays Colby's stats. The green number in the top is his heart rate. Next number down, the blue number, is his blood oxygen saturation level. The yellow number is his respiratory rate. And down below, in purple is his blood pressure. He had just come off of the cannula and back onto the CPAP, so his levels were all elevated a bit. When any of the levels drop, the number blinks, a light on the top of the monitor flashes and a loud alarm goes off to alert the staff.

All the pictures were taken last night and Colby was doing very well. He was very alert and looked good. I held him for a little over and hour. Although he was tired, he fought to stay awake. Towards the end of the hour, he was day dreaming and his eyes were getting heavy. As I put him back in the incubator, the nurse did her workup on him, taking measurements and weights. It looked like he gained a little weight yesterday. If he can put on some weight before he goes into surgery, that will do him well.

As I'm typing this, Tracey and I are sitting here, having our morning coffee and watching Babies: Special Delivery on the Discovery Channel. This show chronicles the delivery of babies which for one reason or another, are having a difficult birth. Just about all of these babies are then sent to the NICU. It's funny because although all of the babies on this show are preemies, many of them are pretty far along, say about 34 weeks or more. And although they're on the smaller side, about 4-6 pounds, they all seem huge compared to Colby and Avery. It just goes to show you how different everyone's situation is. We feel like we could be consultants to these folks. Even though these people are in a situation they never asked for, they probably have no idea of how lucky they still are. To have made it to 34 weeks gestation and to be weighing in at 4 or 5 pounds is a darn good thing. It just puts things in perspective that you always need to be thankful for that which you do have. Even when times are tough, take a minute to stop and see what is going right, what is better than yesterday and what you have to look forward to.

I wouldn't change anything in our situation. No use in second guessing anyway. It's all water under the bridge you we can't change that. We can only affect elements of our future.

You won't get any updates for a day or two. I'm heading up to Maine. I need to relax and get my legs back under me a bit. I have pictures and memories for as far back as I can remember of being at "camp" (that's what they call a cottage up there). My grandparents retired up there. I've been going up since I was born. Evan has been going up there with me now for as long as he can remember. And one day I'll be able to bring the forth generation of the Reed family to Sebec. That will be a very good day!

I'll wrap up with a funny little story. A funny little story. Colby has a colostomy bag right now. I was holding him the other night and he made a face, then I hear a little "brrrrrrttt". I wondered what the hell that was, but shrugged it off. Then, last night the same thing. Colby stops looking around, he gets focused, makes a little face and "brrrrrrrrrt". After thinking about his situation a little, I called a nurse over. She laughed and said that Colby was having gas. Sure enough, I looked under the blankets and his bag was filled with air! Huh....I never really thought about it but if you take in air....it's got to get out somewhere. And in his case, that somewhere right now is his colostomy bag. Makes sense.

A dose of reality

Sometimes I find myself thinking that this is all just a short term event. Colby will get bigger, he'll get stronger, then he'll come home and all will be fine.
We met with the doctor last night to talk a bit about Colby's condition. The doctor showed us the ultrasounds of Colby's head. It was very interesting. Colby's Brain Bleed is a Grade 3 bleed. This means that there was bleeding within the ventricles with some clotting. You can clearly see on the ultrasounds where the blood is and where it's clotted. As a byproduct of this clotting, Colby's cerebrospinal fluid that's normally generated and would usually drain down out of his brain is backed up filling the ventricles of his brain. On other slides, we could see just how large the ventricles in Colby's head have become. Everyone has ventricles which are reservoirs of cerebrospinal fluid right in the middle of their brain. But in Colby's case, as his body makes more fluid and as it backs up, pressure builds inside his brain pressing outward. If the pressure is strong enough, it will actually push the brain against the skull and thus enlarge the head. This is what's happened.
For right now, it looks like the clot is slowly resolving. Because Colby's head isn't growing very fast, the doctors believe that there is at least some draining happening. And this is good. We asked at what point would they intervene. They responded that if Colby starts showing clinical signs of excess pressure on his brain, they would need to do surgery to release some pressure. They are avoiding doing this as it can cause an infection and an infection in the brain is not a good thing.
I asked given Colby's current condition, what is the possible outcome. We were told that there are some cases when the baby's issues are minor, i.e. mild cerebral palsy. Or, others where it's more devastating. I asked when we might be able to know more specific information about Colby's outcome. He said that at this point, most of Colby's movement and behavior is instinct and unconscious activity, meaning that Colby's not really doing it on purpose. At about 2 to 3 months normal birth age (i.e. Colby should have been born on December 5th, so about 2-3 months after that), a baby usually begins to really try to utilize different areas of his brain to function. It will be more at that point when we'll be able to see what kind of affect Colby's condition has left.
The doctor said two things that can affect a babies outcome after having a brain bleed. The first is the timing of the bleed. The younger the baby, the more the brain can compensate for damage. For example if a particular area of the brain is damaged, at times the brain will use another area for this function. The other factor is the socio-economic situation of the family and their ability to provide therapy and support that the baby needs.
Then we had a group meeting with a pulmonary specialist. It was very interesting to hear her talk about the different machines used to help babies breath. She also talked about what scarring and damage may be done from being forced to breath so early. In Colby's case, he needed to breath 3 and 1/2 months before he was supposed to. So his little lungs although formed, were very stiff and immature. The specialist talked about how the babies lungs continue to create new avoli up to about 3 years of age and through this time, the babies lungs will be growing and repairing as best they can. Things that are minor to you and I, like the common cold, can reek havoc on a preemies lungs. So they said to keep Colby away from anyone who's sick or thinks they may be sick. Also to limit people touching him in the beginning as peoples hands can carry all kinds of things that are dangerous to a preemie.
Tracey and I in some ways felt better after last night's discussion. We have told the doctors from day one that we didn't want anything sugar coated and that we want to really understand what we're up against. We're fed tidbits of information every day, but sometimes it helps for a doctor to string all the details together into a comprehensive story.
When Colby does come home, he'll most likely have many regular doctors appointments. We'll need to hang low, which if it's during the holiday season will be different for us. And even once he's home, we'll continue to learn more about his condition and outcome.
For now, Colby is back on IV's. The doctors are giving him half of his calories from his milk and the other half through his IV's. In about a week to 10 days they hope to operate on him again.
Anyway, I feel more informed about Colby's situation. I need those little doses of reality every once in a while to keep me grounded. In some way it feels like a slap in the face, wrecking my perfect picture that I've formed in my head. But in other ways, it simply allows me to correct my still perfect picture to include a more realistic outcome. Either way, I believe that Colby will do well. I'm looking forward to raising our little boy.
It's a bit of a rainy day here in Connecticut today. I don't have any appointments and I'm going to do my best to hang as low as possible. This past week to week and a half I've felt emotionally and physically exhausted. More than I've ever felt before. My whit, energy and stamina is all but gone lately. I need to strike a better balance between the hospital, work and family as best I can.

Our two boys

My dad and I found Colby sound asleep when we went to see him tonight. He was out cold. He looked really good though. His color was good and I swear it looked liked he grew a bit. After a of holding his hand and talking to him, he awoke. Then he was wide eyed and looking around.

The doctors are trying to gradually reduce his steroid that he's been taking. I guess they Colby can't have surgery until he's off that drug. So when he's able to get completely off it, they will do surgery to put his belly back together. Once that's done he'll be able to digest more of his milk and start gaining some good weight back. The nurse on this evening said it may be in the coming weeks. So we'll keep our fingers crossed. He is back on his supplemental IV's now. The doctors don't want to keep him on those for much longer now because prolonged exposure can end up damaging his liver.

As you can see from the pictures, Evan got to hold his little brother last night. He was very happy to do so and Colby seemed very content and interested in his big brother. Evan asks just about every day how Colby is doing. He's going to make a very good big brother once Colby comes home.

Tracey bid on and won some micro-preemie clothes on e-bay last night. Now that he's getting a little bigger, he'll be able to wear them once the come in. One piece was a Halloween outfit. I can't wait to see him in that!

I'll end on a very interesting note. A good friend of the family who's been following Colby's blog wrote my dad and said she found a very interesting coincidence. She looked up the meaning of "cannula". It turns out it comes from the Latin word meaning literally "little reed", like the plant. Don't believe me? Go ahead and google it!

Thanks for sending that note along, Chris!

Work it. Work it.....

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

Thank you!

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

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

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

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

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

And......Action!

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

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

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

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

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

Three generations

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

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

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

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

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

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

Kodak moments

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

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

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

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

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

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

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

I'm loving this good news !!