Wednesday, November 28, 2007

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.


Jess said...

Hi! I was just reading a little of your blog - found it after reading your comment on allaboutadyson (which I got to from a message board :) Just wanted to send you some encouragment but first say I'm sorry for the loss of your little girl. We brought home our twin boys on 10/18 after 88 days in the NICU (2 days before their due date). They were born at 27weeks on 7/22. I can identify with your video and your posts and wish you and your family all the best. Praying for the day when you can take that little guy home!!! It will be a great day when you get to take him home, but so sad to leave the friends and "family" you have made in the NICU. Hopefully your roller coaster ride will be coming to an end soon and you can continue your lives as a new family at home!!! We have a carepage if you have the chance to look! (
-Jessica McKnight

Anonymous said...

It is really good that Colby is waking up every 3 hours to eat!!!

We will be praying for little Colby's tummy trouble to resolve quickly.

Jamie, Jordan, and Maleia

Anonymous said...

Colby is really doing super fantastic considering all that he has been through. He looks so great and soooo cute.

The last month of Tyler's stay was agonizing for me. He was so slow to learn to feed/take full feeds and was on O2 until two days before he was released. At that point I just really felt that I could care for him better at home. I often had to sit back, breath, be thankful how far he'd come, and just be happy that he would be home...someday. Somedays, I felt like he was going to live there forever :)

Tyler came home on a diuretic (Aldactazide) and medicine to help with A's and B's (Aminophylline), for what ever reason his little lungs wouldn't work like they should without it. He was using it for a little extra lung support. The NICU tried on several occassions to get him off both, never suceeding. He was on both for 4 and 5 months after coming home. Tyler was also a slow weight gainer, and had terrible tummy problems with fortifier. We are still working on getting his intestines back in good shape.

I'm still keeping my fingers crossed for Christmas ;) Go, Colby, Go!!!

Anonymous said...

"Hey, I'm hungry and there's nothing coming out of this thing! What are you doing to me, Dad?" this reminds me of when I worked with infants, the hungry cry, and the warmer never works fast enough!