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!!