A video, a step back, and a helping hand

I took a little video last night of Colby. It was hard to film with one hand and try to interact with Colby with the other. But I did my best.

Colby is doing OK. As I've stated before, he's had trouble with his belly, very fussy and gassy. The doctors have been giving him some formula to supplement his breast milk intake. As the doctor explained it to me yesterday, a baby is "supposed" to stay inside and get his/her nutrients from the mother for the full term. Preemies on the other hand are forced to breath, eat, digest and interact with the outside world at a much earlier point. Never mind have the stress of going through surgeries and all. It is important that the doctors do what they can to try to suppliment the babies caloric and nutritional needs from day one. But with surgeries, medication issues and a host of other factors, it's sometimes very difficult and more of a balancing act than anything else. Right now Colby is somewhat below where he should be. Both in length and weight. The formula that they were trying to add to his breast milk seems to have been messing with his belly.

Add to this that Colby is on a diuretic called lasix. This is a drug that helps get excess water out of his body. Where's the water? In his lungs. Because they're damaged a bit they can get swollen inside and thus make it even harder for him to breath. He'll need to stay on a diuretic, but they need to transition him to a less potent one that he'll eventually come home on. And they don't want to try to mess with his drugs while he's having belly trouble because they won't be able to tell if these new drugs are causing issues or if it's just from his formula. So for the next couple days, they're stopping the formula and he'll get only breastmilk. They'll then change over his diuretic and make sure he responds appropriately to that. Once all is well, they'll try to introduce another fortifier to his milk in order to offer him more calories and extra nutrients. If that doesn't work, they'll have to try different mixtures to see what his body will tollerate.

I also asked the nurse about his oxygen test that he took the other day. Again, this is the one where they take his cannula out and see if he can do OK first just lying there, then if he does well with that, they make him cry and see how he does. Lastly, if he continues to do well, they try to feel him without his cannula and see how is blood oxygen levels do. They said that he actually did a bit worse the other day than last week.

So at least for now it's a step back in order to move forward. Just when we through we were on to smooth sailing..... But then again, we need to stay hopeful while also realizing that we have a preemie who was born at 25 weeks. And life in the NICU is rarely a smooth journey.

Given all that's going on and all that we've been through, Tracey and I are still very thankful for our sitaution. We understand that although some things in life may not go the way we intended, there are still many things that are going well. Also, there are plenty of things that could happen to make things tougher on us.

Having spent so much time in the NICU, we've gotten to know a lot of the other families as they come through. I bumped into the father that we talk to a bit on Tuesday and learned that his wife is now hospitalized. What's worse, she's not even in the same hospital their baby is in. She's about an hour away where they live. They also have a son who's 4 or 5. When I saw him he was rushing from the NICU to go pick up his son and then off to the other hospital to spend time with his wife. Tracey and I know how much support in times like this means so Tracey is cooking them a dinner or two and will drop it off for them. That way it's just one less thing for the father to have to worry about right now. It's these things, the little things, the good things, that mean so much when life doesn't go quite as you planned. We've certain seen this in the support we've gotten over the last 4 months! Hopefully in a couple days she'll be released from the hospital and things will be a little easier for them.

The boys....

Not too much to report on the Colbster. He didn't pass his oxygen test yesterday. So they're going to wait another week and see how he does off the cannula again. Tracey and I were talking and we're not too sure if he'll be home for Christmas. The reason being is that they do this oxygen test once a week. And he needs to pass the test two weeks in a row. So we'll just have to wait and see.

He's not gaining weight quite as quickly as the doctors would like. But with all that he's been through with the surgery on his belly and lately the upset stomach, the doctors said it's not an issue. They just need to straighten out his belly issues and he'll probably start packing on the pounds. Colby continues to hover just below 5 pounds now.

Evan has been such a great big brother. He's very involved, asks about Colby each day and looks forward to going to visit him. I can see that when Colby comes home and as he grows, Evan will play a big role in his life which is great!

That's about it for today. I'm in the office and need to keep rolling here. I'll probably have more to write tomorrow.

One of these pictures is not like the other.....not like the other....

Did you figure it out? Need a hint? It's the last picture. So what's different?

Colby got his feeding tube out. Well....he decided he was a big boy now and took it out himself. The nurse said she went over to check on him and there was the tube, in a wound up mess lying next to him. They said that they may need to put it back in. But he's been waking up just about every 3 hours hungry as can be. So if that keeps up, he'll be fine.

He looked great last night. The nurses have been unloading all kinds of information on us from the first day we went into Special Care. They pretty much tell us every thing they're doing, what they're looking for, what the "normal" level, amount, size, frequency, etc is for everything. We have a chart that we need to start using. We also have a list of things that we need to become comfortable and proficient with. They are just trying to teach us the ins and outs of how to take care of a baby who, for right now, has some specific things we need to do or watch for. I think that if we were only in the NICU for a couple weeks and then went to Special Care, we would be more receptive to all this information. But for right now, Tracey and I just feel overwhelmed. Our reserves are low. But continue to look at the bright side of things. Colby's doing well. We're having to learn all of this because he's on his way to coming home.

And things are falling into place. Colby is getting bigger and stronger. Our room at home is just about finished. Next we tackle Colby's room. We're registered for the shower and have that all planned out. Tracey is back working again which is so helpful. And looking at the big picture, everything is good. So we can't really complain about much.....we're just tired and that's to be expected.

Colby's belly thing seems to be quieting down. He wasn't as fussy the last couple days and isn't as gassy.

The eye doctor came in to see Colby yesterday and was pleased to see that for a while now, his eyes haven't gotten any worse. I don't think they've gotten better, but they haven't gotten worse and that's a wonderful thing!

Today they are going to do another test to see how he does off the cannula. I'm looking forward to hearing the results from that.

My day today is flip flopped. I have an appointment with a couple in the evening, so I'm going into the office, then to the hospital, then to the evening appointment. It's nice to be able to mix up my days like that though.

Tracey and I are now at the stage were we can envision Colby coming home. We could before too, but it was vague. Not too sure exactly when. Not too sure what condition he'd be in. At least for now it seems entirely feasible that Colby might come home maybe for Christmas. And aside from his lungs and eyes, we aren't seeing any stand-out signs that he has other issues going on from his brain bleed or hydrocephalus. I guess those usually present themselves down the road so we'll take them one hurdle at a time if they show up.

I know I've said this over and over, but it seems that no matter how much I say it, it just doesn't do it. Tracey and I continue to be touched by the support, the interest and the caring that we've seem from friends, family and total strangers! Tracey and I have done everything in our power to keep positive, to be good people and to help others through the years. I do believe as I mentioned in other postings that you attract what you emulate and that if you keep your head up, things always get better. This entire experience for me just reinforces that belief. I want everyone to know that your e-mails, phone calls, the baby gifts, the meals, the support and assistance you have provide to us has made SUCH A DIFFERENCE. Anyone who's gone through a tough spell knows what it means to have that support and we simply can't tell you enough that you've all made a difference with a family. Thank you.

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(Colby's new crib. A bit industrial looking, yes. But it's still better than an incubator)(Dad and son)(Mom burping Colby after his bottle)(Mom and Colby)(You can see that Colby has put on some good weight. )(Love this picture!) (Colby looking up at Tracey)

That's the number of pictures we took of the Colbster tonight. I absolutely love taking pictures of him. Granted, the majority of them were not worthy of much, but it's great to have the ability to snap away and then pick the best from the batch.

Tracey and I feel boarder line overwhelmed lately with all that's going on. We've been picking up the pace with both of our jobs. The daily drive to the NICU is something that simply wears on you. Almost 4 months now since Tracey was first hospitalized. But...it's all for good reason . Colby has moved to Special Care where there's a whole new team of nurses (the doctors are the same thank goodness) and there's more involvement on our part which is a good thing. But tons of information has been thrown at us in just a couple days. We're in the middle of trying to get the rooms squared away at home. Our room is currently torn apart because we're painting the walls. Once that's back together Colby's room is next and there's plenty of work to be done there. Tracey and I finally registered at Baby's R Us today. That was a lot of fun. It was interesting because we have talked about the day that we would register for our baby every since were first pregnant. For those of you who don't know. We were actually pregnant for our wedding. We figured it would probably take a while so we started before our wedding.....and it didn't take long! But at the end of our first trimester we had a miscarriage. Then, 4 years of TTC. So it was a wonderful thing to finally be able to do that! A bit odd I must say being that our baby is almost 3 months old. But that's fitting for Tracey and I....we never seem to do things the "normal" way. As I tell my son Evan, "Normal is boring."

Colby was doing 100% better today than yesterday. I guess my reasoning that somehow things balance out has some merit. He was very content and awake. He's eating like a machine and is just one ounce away from weighing 5 pounds! We had a good long talk with Dr Casey today. Once again we can't say enough about him. Just the way he comes across and explains things is wonderful. If I put the details of everything we talked about in writing it would be 10 pages long. But the short of the long is that Colby is doing very well. His ability to eat so well is a very good sign. Some babies with brain bleeds and hydrocephalus have difficulty swallowing, latching on or with reflux. Colby eats like a champ, latches on pretty well and has had no reflux thus far! His twitching is something the occupational therapist will most likely keep her eyes on, but doesn't seem too bad at all. His lungs will most likely be the biggest challenge for the next couple years. Colby will be more susceptible to colds and all. He will be very sensitive to temperature changes and pollutants like smoke. His development and achievement of many milestones will most likely be delayed. But at this time there's no indication that he'll have any serious long term issues. Every doctor or nurse we talk to who tell us good news, always follow their statement with "But it's still early though and I can't tell you that he won't have some issues....." Tracey and I understand that there are no guarantees in life and we're very thankful for all the good things that do come our way. So having good news about our son is a wonderful thing!

The Special Care room has a family room where parents can bring their babies when they're stable enough. We simply disconnect Colby from his leads and oxygen, carry him to the room and hook him all back up again to machines there. As I carried Colby across the room today it struck me that this was the first time I walked with my son. A very small thing for many parents but my son is almost 3 months old now and the most I could do is pick up him from his incubator or now his crib, take about a step backwards and sit down in a chair. To be able to walk about with my baby in my arms made me realize yet again that it's the little things that matter most. And it's often these things that are taken for granted. I'm going bring him in and out of that room as often as I can now!

If Colby continues to do well with his bottle and breast feeding, they will most likely take the tube out of his belly. One less tube or wire to be hanging from him. In looking at all my pictures, I don't think I have one picture of him without tubes, tape or some other contraption up his nose or into his mouth. Maybe once that tube is out I'll see if I can take his cannula out and see my without the medical stuff on him.

Thank you all for your continued support. All of your well wishing and positive energy is doing the trick as our little Colby is growing, getting stronger and seems to be doing so well for a baby that's been through so much.

Colby the Crank Pot

Poor little Colby is cranky today. I think it's because they've added fortifier to his milk and that's messing with his belly. The nurses may look for alternatives if Colby continues to show signs of problems.. I stayed with him for over 4 hours today and at times it was impossible to quell his discomfort. He would cry, his arms would punch, push and pull his blanket that I tried to wrap around him. His legs were kicking about. Then he'd stop, catch his breath and kind of look around as if to see if I was paying attention, then start at it again. I had to chuckle inside though because I've heard about this....about a baby just being cranky as hell and the parent not knowing what to do or how to make things better. Well, here I am, experiencing it first hand and let me tell you.....not fun. I also did my best to give him a full bottle and burp him. He's only been taking a bottle for about a week or so and many times it would be when I wasn't there, or if I was there a nurse or Tracey would walk me through everything. That had mixed results. I've never burped a baby before, at least not that I could remember. My big hands and his little body made for an odd combination. I'm sure that over time as I get more used to it, it'll become second nature.
Colby got his broviac like out yesterday. He has a bit of gauze covering the site where they took it out and then some clear, tape-like stuff covering that. He pooped 2-3 times while I was visiting him and on one of my attempts to change his diaper I got the tape from his diaper stuck to the clear tape covering the incision site. The poor guy. He was already uncomfortable and now this! I had to call over a nurse and they then got a couple people together and ended up having to cut away a little bit of the tape to get the dirty diaper off.
So as you can probably tell, it was a long day for Colby and I in hospital today.
The physical therapist has visited Colby. She said that all in all he's looking good so far. They did remark that he's twitching quite a bit. His movement for the most part is fluid, however he'll have phases when it's more twitchy or jerky. I simply don't know what to make of it because you read one thing that says it's normal. Then the next article says it could be a neurological issue. I prefer not to worry too much about it now.
Tracey and I are having a meeting with the doctors and nurses tomorrow so that they can inform us about Colby's bronchopulmonary dysplasia (BPD). BPD or Chronic Lung Disease can result from being on a respirator with high levels of oxygen being pumped into a premature lung. As I currently understand it though, the human lung continues making new lung tissue for years. So although Colby has some damage, over time this will get better. I'll learn more about it as it pertains to Colby's situation tomorrow.
I continue to be amazed that even after 3 months, just about every day presents us with new challenges. From what I read and hear from other parents of preemies, that's something that won't change for a very long time. So we'd better get used to it.
I'll end on another funny story. Last night we went over Liz and Chris' as it was Chris' birthday. They have a newborn, Caitlin. Liz fed Caitlin, burped her and all was well. I had gone out to the mall yesterday and bought a new shirt to wear to the parry (yeah, you know where this is going). Caitlin visited with Tracey without inceden. Then, I was holding her and she was looking up at me. I thought all was going great when all of the sudden, without any warning what so ever, this river of formula came shooting straight out of her mouth as if it were sprayed from a hose. Yup, I got a good dose of warm baby throw up from my right shoulder, across my chest and down my left side.
I believe that things in life balance out. So given that I got puked on, my son was already a crank pot and then I accidental stuck his diaper to his wound, tomorrow is bound to be a better day!

Life in "Special Care"

(Pictures from Wednesday. Colby was out cold for a bit. Being a preemie and trying to grow and all is hard work!)



First and foremost, I hope everyone had a great Thanksgiving.

We were told that once Colby got to Special Care, things would move quickly...and they are. He's out of his incubator as of last night and is now in a crib. He's off of his IV's which supplemented his milk feeding. Today he gets his broviac line out. Once he has that out and is healed, we can give him a "real" bath versus just a sponge bath. He's Also really getting the hang of taking a bottle and is even starting to breast feed! He's currently being fed every 3 hours. But before too long, the timing and amount will be more on his schedule.


I asked Dr Casey now that he's in the Special Care, how long until he comes home. The answer depends on Colby. He needs to come off the cannula. They test him once a week and what they do is simply take the cannula out of his nose and see how his blood saturation levels, heart rate and all do. If he does OK with that, they then tick him off to make him cry...and again watch his numbers. Lastly, they'll give him a bottle and see how he can do by totally breathing on his own while he tries to swallow and all. If he passes all three in a row, they repeat it the next week and if he passes it again, he comes off the cannula. They already did his first test and he did great with just laying there. But once they got him upset, his levels dropped. So they'll try again next week and see how he does.


The doctors and nurses also said that he'll have regular doctors visits once he comes home. Maybe even a visiting nurse too. The NICU sets up all the appointments before we even go home. Then I guess we simply continue the appointments there after.

Lot's happening but all for good reason. Wow how things change. Sometimes the past 4 months seem like a long time, other times it seems like it goes by so quickly.

Tracey and I are kicking it into high gear to prepare for Colby to come home. We know that it won't be until maybe a month or so, but time flies and we want to be as ready as we can.

On the move!

When Tracey was visiting with Colby yesterday, she was told that Colby is moving to Special Care! The plan was to move him sometime last night. We've been told from our first day that we wanted to work towards moving out of the NICU and into the Special Care Unit. I'm not sure if technically they're both part of the NICU or not, but I'm sure that the doctors and nurses who read this blog will correct me when I'm in there today. haha
I can't tell you what this move has done for our spirits. Not like we were down or anything, but yesterday Tracey was in the best mood than I've seen her in a long time. We've been told for so long that this was a goal to reach for and look .....we've made it. Colby's made it!
As I understand......and I'll learn more as time goes by....but special care is still 24/7 care, but less insense than the NICU. The Special Care foom is right next to the NICU. There's just a sliding glass door between the two. The babies in there are more stable and it's within this room that we will learn more about how to care for Colby once he comes home. I'm not sure if he'll still be in his incubator or not. There are other babies in there who are in somewhat normal cribs. It would be wonderful to be able to hold his hand, touch him and peer in without having to do so though little doors in his incubator.
I did stay away from the NICU yesterday and was in bed by 8:30 last night. I was just wiped. However I feel much better today having gotten a good night's rest. So I'll head into the hospital after my appointments today and check out Colby's new home.
I've got a busy day ahead of me so I'm going to keep this posting short.

Daddy's sick?

Maybe? I'm feeling like I may be getting sick this morning. Just an aching throat and a little bit of a runny nose. So given this, I may need to stay away from the NICU today. I just don't want to take any kind of a chance that I could pass something on to Colby or any of the other babies there.

Colby is now 12 weeks and one day old. Gestationally I think he's right around 37 weeks. Can you believe that if he would have gone full term, he would still be cookin' inside of Tracey for another 2 weeks! Most twins do come a little early, so if Colby and Avery would have gone close to full term, I suspect that we would probably be delivering sometime soon.

Colby was up to over 25cc's of milk and taking all of it by bottle when Tracey fed him yesterday. I was there for a while but it never coincided with his feeding times. It continues to be more of the same....he added in a couple ounces, they went up on his feedings a little and things are looking good.

It's starting to set in now that I'll have a newborn home at some point. I'm sure you understand that in the beginning and especially right after Avery passed away, we wondered if the day would come when Colby would come home. Then ever since, it's just been an odd experience having Colby in the NICU for so long. I was thinking about it yesterday......yes, I have a son, but if you walk into my house, you wouldn't know it. I mean there's no toys around, no diaper bags, no highchair in the kitchen.....nothing. And if you looked around at the room, there's not even a baby's room yet. Thus far it's like we've just visited our son as if he's living in someone else's house. I think only parents who had children in the NICU for extended periods can really relate.

I've mentioned in the past that there's another couple in our room who had a 24 weeker born just about a month after Colby. These parents are having a tough time. I think they're hitting the 2 month mark about now and that's when Tracey and I felt everything was just way out of balance. All I can do for them is simply let them know that we were in a similar situation and that things DO get better. Maybe not at once, maybe not quickly, but they do get better.

It's been very nice to be able to hold Colby more lately. Now it's just the tangle of wires that are attached to him that makes things uncomfortable. One by one his wires and tubes will go away.

So that's the scoop for today. Depending on how my day goes, I may or may not end up seeing him. When I'm run down sometimes I just feel crap in the mornings until my body wakes up. So maybe today is just another one of those days.

The Colbster

I was thinking on the ride home from the hospital today how much things have changed. I mentioned this before but we're counting the good days now. Colby is doing so well. He's now at 24 cc's of breast milk every 3 hours. Just yesterday they added some fortifier to his milk to add a couple calories. His weight has been hovering around 4 pounds, 5 ounces. It seems like his belly is working as it should be.

When I was visiting with him today he was very tired. I took him out for a short while and spent some good time with him. He got fussy after a bit so I put him back into his incubator. He's a growing boy now-a-days and that's bound to tucker a guy out.

Tracey, Evan and I have been busy the last week trying to start to get the house in order and ready for Colby to come home. We live in a cape. Tracey and I have had our bedroom upstairs along with a spare bedroom where I keep all my clothes. Downstairs we have two bedrooms, one of which was Evan's and the other was the oddball room with the weights, guitars and anything else we just didn't have a place for. Evan is moving up into our room, we're going into his room and the guitar/weight room will be Colby's. Thus far we've painted Evan's new room and moved the beds. Today Tracey and Evan spent a lot of time moving clothes from room to room. We still have a long way to go, but we're making headway. We are thinking that Colby may be home before the year's end, which gives us about a month and 1/2. However, we're not quite living the "normal" life. We have little free time so we're trying to nibble at it little by little. Friends and family have offered to help. We'll probably do a "painting party" when it comes time to paint Colby's room and ours.

And as for baby stuff....well...we have quite a bit of clothes, but that's it. Family and friends have offered to help with certain things. Tracey and I felt very awkward about having a baby shower because people already stepped in to participate in the March of Dimes Walk and then for our benefit dinner. But friends and family are adamant that they're going to do something to help us. Tracey and I understand that people are doing it because they want to help, but it's still just plain awkward being in our shoes. Everyone says that if the rolls were reversed, we'd understand. And we do. So our families are going to do something small just to help us out and that's wonderful.

I went to see our friends Liz and Chris' baby, Caitlin, tonight. She's adorable! And I can't get over how big she is compared to Colby. I've never felt comfortable holding a baby before. But now after holding the Colbster so often, I felt right at home holding Caitlin. Things are in a totally different perspective. I watched her move around to see if I could see a bit of her in Colby or visa versa. Being that I've never really paid much attention to a babies movement before, I simply don't know if Colby's movements are "normal" or not. I've been reassured by many that his sometimes jerky motions, his odd faces and his squirming about are all status quo. But for a first time dad, it's all new. And now having a preemie to boot just adds to the unknowns. So I'm just trying to take it all in and learn as much as I can.

The NICU does a great job offering classes and other opportunities to learn about preemie care and some things that surround that. They offered an infant feeding class the other night. Tracey thought she was getting a cold so I ended up going alone. I learned more about boobs than I ever wanted to know! But it was very interesting and although the father has limited involvement with this end of things, I think it's still important for them to understand what the babies and their mothers are going through.

Tomorrow night we have an infant CPR class. I'm looking forward to that. Not that I ever hope to have to use it, but the more you can learn about things, the more empowered you are.

I've taken a short video of Colby and hope to have that up in the next couple days or so.

PS....I put up two new polls on the top right.

A little rest goes a long way

(I still love the black and whites of him!)
(Colby is like an entertainment center when we take him out with tons of wires handing off the back of him. The white tube going into Colby's right thigh is the broviac line that I'll talk a bit about in his blog today.) (I often just hold his hand and rub his head when he's sleeping.)
( Nine out of time times I end up going to the hospital from my last appointment. So I just take off the tie and roll up the sleeves. I usually take a couple minutes and talk to Colby, ask him how his day was, tell him how good he looks and update him of all the people supporting him. Ow....and I talk to him about his blog. hehe. He's a star!!!!)

I took a day off yesterday. Well, I still worked but it was a day off from the hospital, from the blog and I just tried to get some much needed rest. Tracey was working and Evan is at his dad's, so I had the house to myself. I had won tickets to go see Dave Matthews over in New York for a show he was doing last night, but with everything going on, it just wasn't feasible for me to make it. The show was broadcast on the internet. I spent last night, just Hamilton and I, watching the show (yeah, I've turned our dog into a Dave fan too...he just doesn't know it), having some wine and playing the guitar. Good stuff. And today I feel a little better.

Thank you all for your comments. I'm simply amazed at how many people read about our family and don't really know what to say other than "thank you"! I've said it before but it's so true, that Tracey and I wanted so badly to make some good out of this situation and based on your comments, I feel that it's been a success. And then to see that people are from all over the just blows me away. I think my next poll will be how you heard about the blog.

Lorna, thank you for your e-mail and I think you're right. I really didn't have a chance to process things when Avery passed away. I was still all wrapped up with Colby's situation which at the time was day by day. Now that Colby seems to be doing better, I'm starting to think more about Avery again. That makes perfect sense.

Tracey went to see Colby yesterday. He was doing very well. He drank most of his milk from his bottle and was very alert. He gained another couple ounces which puts him up to 4 pounds 3 ounces.

One thing I have yet to do is to change a poopy diaper. Thus far, he's pooped when we're not there. So that will be an interesting day. I'm sure that after a couple times it will be like old business. But it's like the first time giving him a bath, or taking him out or whatever, I'm just not sure how to go about it. So that will be an interesting blog to write for sure.

When I look back, even just a month ago, it shocks me how much things have changed.....and for the better. There is less and less to report on regarding our little boy. He's stabilizing and that's wonderful. It's simply more of a growth thing now. I love taking pictures of him and sharing them so that's always something I can post. One thing he'll have coming up with again may set him back a little is that he has to have his broviac line removed. This is the thick tube that is placed in this thigh and goes up into his body. It's used as a more stable way to deliver medication than IV's. It's surgically put in and as I understand it, there is a but if a cuff just below his skin which helped keep the line in place. By now, that cuff probably has some tissue which has grown in around it. So when they take it out, they'll probably put him under again. I need to find out more about that and then find out when they think they'll tackle taking it out.

Apart from that, barring any drastic changes in Colby's situation, our main goals at this point are to get him eating from the bottle as much as possible. To pack on some pounds. And eventually to try to ween him off the cannula. People still ask me when he's coming home and we simply don't have an answer. He has much to overcome yet and it's not a linear progression, so we'll take it one hurdle at a time. As the day nears, we'll certainly let everyone know!

Anyway, that's the scoop. I'm anxious to go spend some time with him today. I need to get into the office for a bit then have an appointment at 2pm. But I'm headed to the hospital from there.

P.S.....if the new slideshow messes with you being able to view the blog correctly or with the loading the page, please let me know and I'll take it off.

It's all in how you look at things

( Dad and Avery holding hands)

(Mom and Avery)

I've been very tired the last couple days. And when I'm tired, it's sometimes harder to keep a positive outlook on things. Colby has been doing very well, but he has a long road ahead of him. Tracey and I have a long road ahead of us. And much is still uncertain.

When I went into the NICU tonight, I was told that they ordered another ultrasound on Colby's head. I haven't sat down and talked with a doctor about Colby's general situation in a while, so I tried to slow down and put things in perspective. I can't change whatever Colby's condition might be, but I can educate myself about what's happening and then determine how I want to address it. I talked with a couple nurses and two doctors. They all reassured me that Colby is doing well and doing most of the "normal preemie stuff". He is behind on his feeding, but that's to be expected given his ordeal with his belly, then his surgery and not having been fed for so long. Yes, he does have ROP, but it's still minor and at least we know he can see.

The doctors have upped Colby's milk feedings yet again. He's now getting 16 cc's every 3 hours. His belly is able to digest things quick enough so that each time they go to feed him he has an empty belly. His digestive system continues to work and he's pooped yet again (aren't you wondering when I'll stop reporting on my son's poop?). We're hoping that if he continues to do well with his feedings, that maybe in about a week or so he may be able to come off of some of the IV's which currently provide him with supplemental nutrients and all.

Dr Casey has again rotated out of our room and we currently have a new doctor who I haven't seen in months. I asked him about Colby's brain bleed and hydrocephalus. He looked at Colby's ultrasound and said that to him it looks like Colby's hydrocephalus may be resolving a little. And the brain bleed may be starting to get reabsorbed. I'm still trying to understand how that all works. I guess in the simplest of terms, if there was blood in the brain, the body is simply soaking some of that up. That made me feel much better. Sure, my son has wires and tubes coming from every direction. He's not home and probably won't be for a while yet. And we have a long road ahead of us. But he's eating again. His belly is working. He can see. He can hear. His lungs are getting stronger. His heart rate is more consistent. We can hold him much more often. And best of all......he's my son and I can go and spend time with him whenever I want.

I don't know why but I've been thinking a lot of Avery yesterday and today. I just miss her, that's all. And it's absolutly amazing how things happen sometimes. I was walking down the hall of an an elementary school today when a girl down the hall from me was calling her who was somewhere behind me. Her friend's name was........ Avery. I had chills. I looked behind me to see who she was calling. From down the call came a beautiful little girl, with long brown hair and a big smile. I stopped and let her pass me. As she walked by I smiled. She looked up, smiled back and was on her way. When I got to my car, I had mixed emotions. I was sad for obvious reasons. But after a minute or two, I felt happy inside. It's the littlest things that make a difference sometimes. Yes, my daughter passed away, but she'll always be with me. Whether it's someone calling her name or simply things that remind me of our short time together. I don't like to use the term "I lost my daughter". Because I didn't loose anything. I gained so much from my time with her and that's something that for as long as I'm alive, can't be taken away.

You can leave objects behind when you pass away. But objects can be replaced. It's the memories, the feelings, the things you can't touch that stay forever. At times, thinking of things that have happened, some happy, some sad, put things in perspective for me. For this reason post two pictures of Avery today.

I'm very thankful that Colby is doing as well as he is.

Quick Update

I don't have much time to write today. Yesterday was a loooooooonnnnnnnggggggg day and today looks to be about the same.

Colby finally pooped....and not just once, but twice! His feedings of milk are up to 12 cc's every 3 hours now. I tried feeding him with a bottle last night but he didn't want to work. So it all went via his NG tube (the tube in his nose that goes into his belly).

We're starting to wonder how long until we go into special care (the room next to the room we're in now). Babies go there once they're more stable. In that room we'll learn more about how to take care of him once he comes home and all.

Congratulations to Chris and Liz! Colby's future girlfriend was born yesterday morning. I told him all about her and he seemed excited to hear the news.

Flashback to Sunday, August 12, 23 weeks

(picture of Colby's ultrasound)

Good morning everyone. Colby was doing awesome yesterday. Still just under 4 pounds. Tracey and I love watching him develop. He's moving his head a little to look left and right. Tracey and I held him for a good hour or so. He was very alert and content the entire time. He was at 2 cc's of milk every 4 hours right after his surgery. As of yesterday, he's up to 8 cc's every 3 hours! The eye doctor saw him again yesterday to check on his ROP. It's still the same. As long as it doesn't get any worse, we'll be happy. And one day hopefully it will get a little better.

I thought on days like today when I don't have too much to report, I'd look back to the e-mails I sent out before I created this blog and before our twins were born prematurely beautiful (see A.P. told you I'd steal your term, haha, I like that.....prematurely beautiful). Then I'd copy and paste some of them here. For those of you who don't know, we were on bed rest for 3 weeks. Tracey started at one hospital and was then transferred to UCONN once we were close to 24 weeks. Poor Tracey had a horrible time while on the magnesium to stop contractions. This was an e-mail from when we just got transferred to UCONN. We were 23 weeks pregnant and still gaining information about our situation.

"Things aren't looking good. After a good night's sleep last night, today has been filled with persistent contractions. One med didn't work, so we're back onto the Magnesium. The doctors are being cautious this time because last time Tracey had Magnesium, she ended up having to be put on oxygen, her blood pressure bottomed out around 60/30 and she could barely move. So we don't want that to happen again. But the contractions continue now through all the meds and with increasing doses of Magnesium.
The doctors are going to perform an amniocentesis where they are going to take a needle and take some of the amniotic fluid from each baby's sack to determine if there is an infection in Avery being that her sack has been broken now for almost a week. If there is, then the babies need to come immediately and that could be the reason for Tracey's body to try to expel them now.
We're being asked by the dr's what we want to do and we're at a loss. If we knew what the outcomes would for everything, we'd have a straight answer. But each options has it's challenges, risks and problems.
They've been kicking a lot today. maybe they somehow know that they're ready to come out. We're early and at this point, they wouldn't have had the chance to get their lung hormone shot, so it will be tough for them. They're big for their age, so hopefully that will help them.
The Dr's still say that hopefully they can stay in there for a while, but as the contractions keep coming, it's less and less likely.
As you can tell, we're worn out and beat up from today's events. And our outlook has been affected too. I expect tonight to be a long night and tomorrow to possibly be longer."

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

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

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

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

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

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

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

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

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

The Blog

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

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

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

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

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

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

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

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

That's why I write in this blog.

Go Colby, go!

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

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

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

He's a lil' stinker!

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

(My little boy)

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

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

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

Still waiting....

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

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

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

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

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

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

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

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

....for some milk please !!

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

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

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

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

What a big boy!

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


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

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

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

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

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


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

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

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


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