Another good day and a special gift from good people

I was very happy to call the NICU this morning and hear that Colby was still on the CPAP. He's doing very well with this breathing. It could be because his lungs have matured, or it could simply be the steroids helping him. Tomorrow will be his last dose of steroids and we'll have to see what happens. Colby was tired today. He's having to work a lot harder than he ever has to breath and keep his oxygen levels up. I stayed with him for a good couple hours today, giving him his pacifier and holding his hands and feet. He was very content, but tired. I didn't want to hold him today because he was so tired and was doing so well. I know that in some ways holding him does him some good, but I'm sure that in other ways, it's stressful for him. Having him stay on the CPAP and hopefully progress beyond that will then enable me to hold him even more often and that's what's important for now. If he's stronger tomorrow, I'll see if I can hold him.

The doctor came by and reassured me that he was doing well. He hadn't gained any weight today, but the steroids could cause weight loss. So I wasn't surprised. He's still at 5.5 cc's of milk an hour. He'll most likely continue to gain weight once the steroid is stopped.

The nurses were talking with me a bit about the possible outcomes. Because of his brain bleed, they were concerned that we weren't prepared for what may be to come. I told them that Tracey and I understand Colby will most likely have some issues. We don't know what they will be and we won't know how serious the conditions will be until possibly years down the road. But we're as prepared as we can be. I do believe that a child with disabilities can be empowered to function better than others with the same disability. I intend to do all I can to give him a good outlook and enable him to do all his body will allow.

Over the past couple months, Tracey and I have been dealt a hand that we never anticipated. We're coping very well. There are so many families who find themsleves in tough times. And they make it through. Tracey and I will do fine as well. We have a very strong relationship. I think we have a good outlook and way of dealing with things. We don't second guess. We do what we can to make the best of all that we have and we keep moving on. We look for all the good that we have, even in the worse of situations. Life is filled with challenges. If it wasn't this, it would be something else. It's finances, it's raising a teenager, it's work, etc. This is no different, just different circumstances. We'll work hard to make the best of this. And we'll do it all together.

The nurse talked to us and said she hopes that this experience doesn't discourage us from trying to have more children. Tracey and I have already discussed this. We plan to expand our family in the future. But getting Colby healthy and home is our priority for now. We hope to have him home by year's end. The nurses said this may happen. It all depends on how he progresses. In a couple weeks, they may try to start helping him bottle feed. He may progress from the CPAP to a cannula (the thin, clear tube that you sometimes see adults who need oxygen wear. It goes over their ears, down under their nose and blows oxygen into their nostrils) Eventually, he will also progress off this. Most preemies come home with no breathing assistance.

Tracey and I were touched last night when another couple in the NICU who had twins and with whom we've talked from time to time stopped by Colby's incubator to give us a gift. One of their twins was in the NICU just for a couple days and is already home. The other is leaving the NICU this week. When we got home, we opened the gift. Inside was a card and a beautiful stained glass lamp in the shape of a lily. It has a brass base and one lily flower facing straight up with the bulb inside the bottom of the flower. The card read, among other things:

"This remembrance lamp has been specially chosen to honor the memory of Avery. Hers was a life short-lived and well-loved, a life that is deeply missed by all of us. Each time that you use this lamp, may her love, spirit and light continue to shine for you."

I was so touched by this gesture. Tracey and I are going to put this lamp in Colby's room. It has a soft light that's perfect to be used at night to feed him, read a book to him or keep some light in the room if he ends up being afraid of the dark. So in a wonderful way, his sister's memory and spirit will be with him as he grows. Thank you Dave, Vanessa and Laura for this special gift!!

A good day for Colby!

(pictures from tonight. Colby with his CPAP)

Sorry I haven't updated in a couple days. Good things come to those who wait and today brings good news.

The doctor called Tracey yesterday and said that they were going to try to give him a steroid for his lungs. They said that by now they wanted him to try to get off the respirator and onto the CPAP. The steroid is given in three-day doses which began yesterday.

We found Colby with this crazy contraption tonight. It's a CPAP. Although it looks like he's an astronaut, it's actually a step in the right direction for him. The respirator used to breath for Colby. The CPAP now just blows steady air into his nose and he has to do the work. He has tried this a couple of times before but within a couple hours they had to put him back on the respirator. So let's keep our fingers crossed that with the steroids he'll stay on this.

He seemed to have mixed feelings about his new setup. On one hand, he was very alert, looking all around him and happy to have this new liberty. On the other, he kept doing his best to pull the CPAP off himself....and succeeded a couple times. Tracey and I heard his oxygen monitor going off so we lifted the blanket that covers his incubator only to find him staring up at us with his big blueberry eyes....and the CPAP was moved down blowing into his mouth as he sucked on it!!! I did my best to try to get the thing back in his nose but with him grabbing at the tubes, the blue styrofoam things falling off and my hands getting tangled in all the wires and pulling off some sensors while he rolled about, Tracey went and asked for a nurses help. ( I almost had it though...)

Anyway, the nurses will again have their hands full tonight.

He was doing very well. As you can see he had his eyes wide open, eager to look around him. He's got pudgy little cheeks. He is so much happier on his back. Thus far he could look to his right or his left as the respirator kept his head firmly set to one side or the other. Now, we can lie on his back or side and move his head around. MUCH better for both him and mom and dad !

He gained another ounce yesterday. The steroids could make him loose some weight, so we'll need to see what happens. He was up to 2 pounds and 11 ounces I think. They upped his feedings now to 5.5 cc's an hour. I can remember when he was hovering around 1 to 1.5 cc's an hour and we would talk about how good that was. This is good as we can now start moving some of the breast milk we have at home to the hospital's freezer. To give you a visual, our freezer in the kitchen has 3 shelves dedicated to breast milk and one with some ice cream and probably some frozen pizzas or something. Even that shelf is starting to have a couple bottles of milk on it now too. I think Evan avoids the freezer at all costs because he is forced to look at the stockpile of his mom's frozen breast milk. Not something a 14 year old boy is really comfortable with. But he's doing fine with it all.

Tracey got to give Colby a bath yesterday when she was visiting. It's more of a sponge bath because he can't really leave his incubator. And tonight I got to give him his little green pacifier. He seemed to really like it as he could suck away as his eyes swung from left to right. First to dad looking in on one side, then over to mom smiling down at the other side of his incubator. I really enjoyed giving him his pacifier. I could stand there all day with him.

I can't wait to see my boy tomorrow. With a little luck I'll find him still wearing his CPAP. And if he's stable, I may also be able to hold him again !!! Lots to look forward to!!

He's a handful sometimes

(picture from the other night. The dark red tube you see is his blood transfusion. You may notice that his lip looks funny. He doesn't have clef lip. It was just the way the tape was pulling his poor little lip. After we noticed that it was being pulled like that, we told the nurse and she retaped it. Thank you Tina!!) Colby continues to do well as of our checkup last night. He looked well, had good color and very active. His feedings are now up to 4.5 cc's an hour.

He's quite a handful for the nurses at times. Mostly because of his oxygen level. When it dips at times they need to check on him and adjust the level of oxygen that his ventilator is giving him. He also somehow pulled the little monitor which keeps track of his body temp off himself the other night. This acts somewhat as a thermostat. If it reads that his body is cold (i.e. if it's pulled of his body), the incubator heats up, trying to keep his little body warm. Being off his body it was registering that he was cold and thus turned his little incubator into a mini sauna. The nurses saw what was happening and had to open his little doors and fan air around him.

They also had tried to decrease the number of breaths the respirator gave him the night before last, but he didn't seem to like that. His blood oxygen levels went down again. So they'll chalk it up that they tried and turned it back up.

He gained another ounce yesterday. Other than that, relatively little news. That in many ways is a good thing.

We had the nurse last night that we had the other day. But she was 100% better. Maybe she was just having an off day. Everyone has them from time to time.

I continue to be amazed at how many people are following Colby's story now. I know I must sound like a broken record, but I just keep meeting more and more people who say they've heard his story or that they are keeping up on his blog. It makes me feel good to know that so many people care enough to take time out of their day to read the latest news on our little boy. When I see him each evening I update him on who I've talked to and who's pulling for him. I tell him that he's famous and that he may be the littlest celebrity around! It will be wonderful some day to be able to tell him about his journey, of his parent's dedication, his own strength and the thoughtfulness of so many people he hadn't even met yet.

New favorate picture

I took this picture just this evening and absolutely love it. He looks so content and peaceful. He puts his hands up under his chin or on the side of his face a lot.

He looks awesome tonight !! They were just getting done doing his blood transfusion. His color is better and he doesn't look as run down.

He now weights 2 pounds 10 ounces !!! What a little chunker !!!

He is up to 4 cc's of milk an hour. The most he's ever gotten. Also, they are slowing the ventilator to 15 breaths an minute. This means that the machine will breath 15 times a minute for him, anything above that is all him.

Good, good news and we'll soak it all in !

Hope

(Tracey reading a book to Colby. He opens his eyes and watches her out the hole of his incubator as she reads to him.)

The last couple days have been rough on Colby as well as for Tracey and I. We have been in a bit of a funk seeing our boy look so sick and not really getting much insight into his condition. He's been needing a blood transfusion but believe it or not, the machine that cleanses the blood had been broken. We've also been worried about his brain bleed and wanting to know more about what's happening now that they've done another ultrasound. They gave us a general "nothing new on the ultrasound today", but we wanted more information.

As I've said over and over again, things can change. And they finally have. Tracey asked to speak with the doctors this morning in more depth and learned a bit more about Colby's condition. He's finally getting a transfusion today. That will help him with his energy and all. They've taken him off his antibiotics because he seems to be in the clear for now. They continue to up his feedings. Most importantly to Tracey and I, his head seems to be about the same. That isn't anything new, but after Tracey spoke with the doctor she's learned that his bleeding is relatively small. The growth of his head seems to be more of a natural growth with a bit if hydrocephalus. We have been wondering about the impact all of this can have on Colby's brain and the doctor shared that he thinks it's on the lesser side.....for now. That's the best news we can ask for. We understand that it's not a promise and that things can change, but we just didn't know and were worried and wondering about where we stood today. They said that the ultrasounds are a much better barometer for his condition than his head circumference. The latest ultrasounds haven't showed any worsening and gave them a good view of what has taken place. They said that his current situation is about 1/5th of what Avery had. Even just typing that statement sends a bit of a chill through me and feels as if my shoulders are lifted a bit. hmmm...maybe I should type it again....

Hope. That's what helps us get from day to day. And today we were given a good dose of it.

I'm heading to an appointment but will then go to see my little boy this evening. I simply CAN'T WAIT to see him today !!!!! ....and I'll bring the camera so we'll have some new pics up tomorrow.

Round and round they go

I have some time between appointments this morning, so I wanted to get an update out.

Tracey and I went to see Colby last night. Our little boy is having a tough time. Although I can't really describe it really, he just didn't look well. His color was poor. The doctors said that his blood pressure was low. His oxygen saturation and heart rate kept dipping too. When they pricked his heal and squeezed out blood to do his blood work Colby didn't twitch or move at all. He just laid there and that really bothered me. They are doing some tests to try to determine what's going on.

There's some positive news though. They started his feedings again and he's back up to 3 cc's of breast milk and hour. Thus far, he's digesting that OK. Also, his ultrasound came back with no change. We always hope to hear that thing are getting better. But no change also means his brain bleed isn't getting worse. I think his hydrocephalus keeps getting worse though. His head circumference continues to grow. Yes part of that could simply be normal growth, but at times it's more than 1/4 centimeter a day. The back of his head look really big lately. I feel so helpless looking into his incubator. I need to believe that he's in good hands and things will turn out as they're supposed to.

Thus far, we've been very pleased with the NICU staff. Last night was the one exception. The nurse he had just turned me off in the first minute I met her. She seemed totally disinterested in Colby's condition and didn't offer much insight into his situation. She's never had Colby before and hopefully she won't have him again. If so, I think I'll speak up and ask for another nurse.

The doctors have changed too. Every two weeks, the doctors rotate around from one area of the NICU to another. We've been very lucky to have an absolutely wonderful doctor, Dr Casey, for the past two weeks. He's just the kinda guy that you feel really cares, he does a wonderful job conveying information and is very personable. All around just a great guy. We're counting the days until he rotates back around and we have him again.

Tracey had her first day back at work yesterday. She's happy to be working again. These past couple days have been rough on us with Colby's condition seemingly worsening. We try very hard to keep a good outlook, but at times we just wear out. So we keep enjoying the positive things....he's getting breast milk again, his brain bleed isn't any worse....and we move on knowing that tomorrow will be another day and things will always change if you give them enough time.

Proud Parents

(pictures from Saturday night. The little blue sign was made by one of the great nurses in the NICU.)

We're moving along. Colby is 5 weeks old today. Tracey starts working again today. And it's now been two weeks since we lost Avery.

As you're all well aware, Colby has been through many ups and downs, but given his situation, he's doing well. The doctors are going to do another ultrasound today to check on his brain bleed. It usually takes a day to get the results back. We've got more feedback about his current brain bleed. It was a level 1/2 (level one on one side and level 2 on the other). The hydrocephalus had increased within his ventricles which made it all go to a level 3/3. The good news of this though is that his change from 2 to 3 is from increased hydrocephalus, not from increased bleeding.

Tracey has been out of work ever since she went into the hospital back on August 6th. So just about two months. She's been wanting to get back to work. It will be good for her to fall back into that routine. It will be good too to have another income coming in !!

It's hard to think that it's been two weeks since our little Avery passed away. It often feels much longer. Probably because of all that's been going on with Colby. But when I start to think about it, it still hurts as if it was yesterday.
Tracey and I were talking last night and it's amazing to think that our normal due date is still 65 days away! Colby and Avery would have still been in her belly for another two months! Wow! I can't even imagine that now. Tracey was getting so big at 5 months, I can't imagine how big she would have gotten had she gone full term. We still look to that date though because doctors usually shoot to have a preemie home for their normal due date. That's a target and by no means the rule. We'll have to see how Colby progresses.

I asked the doctor what "adjusted age" meant. In Colby's situation, he was born about 3 months and 2 weeks early. So many of the developmental milestones need to be pushed back as if he were born on December 5th. He was technically born on August 27th, however developmentally, the time he's in the NICU is meant to simply allow him to develop as if it here still inside Tracey. His real "milestone clock", if you will, doesn't start until December 5th. Thus, all his milestones will have an additional 3 months added to them. For example, if most children achieve a given milestone at 1 year 3 months, we might expect Colby to hit that when he's 1 year 6 months old. They use this adjusted age until about 2 or 3 years of age when most preemies are able to catch up to full term babies. Interesting, huh?