Wednesday, October 31, 2007
Thank you for all your thoughts and prayers. Our family appreciates your support.
Monday, October 29, 2007
(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.)
Saturday, October 27, 2007
(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)
Friday, October 26, 2007
Thursday, October 25, 2007
Tuesday, October 23, 2007
(Dad taking in the colors across the lake)
Saturday, October 20, 2007
(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.
Friday, October 19, 2007
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.
Wednesday, October 17, 2007
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.
Tuesday, October 16, 2007
( 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.
Sunday, October 14, 2007
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:
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!
Saturday, October 13, 2007
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.