Rhys has been in the hospital for 100 days now. Many of the other preemies' families we've talked to had slightly over 100 days in the hospital. Not so for our little man. He is really no where near going home, however he is still doing well on CPAP. I know you can't compare these kiddos and if you consider he was stagnant in the progress department for 6 weeks while he was on the paint shaker I guess we aren't really that far behind. Rhys' O2 remains mostly around 70% and he still is not desatting like he did on the vent, with the exception of the occasional drop when he gets angry at having his diaper changed. As he lowers his oxygen requirement they can try to drop the pressure of the CPAP (which is currently on 8) and then on to the nasal cannula. It felt like we'd never get to CPAP, but here we are, so I guess we shouldn't be too impatient (but it's really hard, and those of you who know me understand that is not in my nature).
Today he weighed 5 pounds 2 ounces, but he had two really large wet diapers (totaling more than 2 ounces), so he is now below 5 pounds again. The doctors thought he was gaining too much weight too quickly so they lowered his feeds. They had been bumped up to 40cc, but they were knocked back down to 38cc to prevent him from retaining so much fluid.
Dr. Gloom is conducting a study about preemies and their brain development. He approached us and asked if we were interested in participating. This study consists of a high resolution MRI (apparently better than the one he'd typically get) and the hope is that the doctors can learn to identify damaged areas of the brain and provide early intervention for therapies that would keep the kids from long term disabilities. Rhys is at risk for CP and other development issues because of his brain bleed and every other thing that has happened since his birth. He may or may not benefit from this study, but perhaps other kids could later down the road. Cody doesn't see any reason not to do the study. Rhys would receive an MRI before he goes home anyway, but my hesitation is that if they do it soon I would hate for him to have a setback because he got so upset over it. Not sure that would happen, but Dr. Gloom pointed that out and Dr. Gloom being Dr. Gloom also mentioned that if he needed to be reintubated they have the equipment there by the MRI machine. Gee, thanks! Can you give the guy a little credit and quit spreading the bad vibes? Dr. Gloom needs to go get some sunshine. :o) Other than that not much going on.
Rhys' primary weekend nurse is on a much needed vacation so we will not be seeing her this weekend. But, Rhys says hi, I'm hanging in there, have fun and eat lots of yummy food and I will see you when you get back!!
Today he weighed 5 pounds 2 ounces, but he had two really large wet diapers (totaling more than 2 ounces), so he is now below 5 pounds again. The doctors thought he was gaining too much weight too quickly so they lowered his feeds. They had been bumped up to 40cc, but they were knocked back down to 38cc to prevent him from retaining so much fluid.
Dr. Gloom is conducting a study about preemies and their brain development. He approached us and asked if we were interested in participating. This study consists of a high resolution MRI (apparently better than the one he'd typically get) and the hope is that the doctors can learn to identify damaged areas of the brain and provide early intervention for therapies that would keep the kids from long term disabilities. Rhys is at risk for CP and other development issues because of his brain bleed and every other thing that has happened since his birth. He may or may not benefit from this study, but perhaps other kids could later down the road. Cody doesn't see any reason not to do the study. Rhys would receive an MRI before he goes home anyway, but my hesitation is that if they do it soon I would hate for him to have a setback because he got so upset over it. Not sure that would happen, but Dr. Gloom pointed that out and Dr. Gloom being Dr. Gloom also mentioned that if he needed to be reintubated they have the equipment there by the MRI machine. Gee, thanks! Can you give the guy a little credit and quit spreading the bad vibes? Dr. Gloom needs to go get some sunshine. :o) Other than that not much going on.
Rhys' primary weekend nurse is on a much needed vacation so we will not be seeing her this weekend. But, Rhys says hi, I'm hanging in there, have fun and eat lots of yummy food and I will see you when you get back!!
3 comments:
100 is such a big milestone! Congrats on all the progress he's made recently! It's hard not to compare babies. I got to be a pro at it during our stay. There was nothing harder than watching babies born at an earlier gestation than mine, be born and discharged months before we even started talking about discharge. Day of life 100 saw the oscillator coming back into our life if I remember correctly. Day 200 however saw light at the end of the tunnel.
I agree with emily that 100 is such a big day! I'm so glad to hear of all the progress Rhys is making. It is awfully hard not to compare, and when you see other babies come and go while yours camps out in the NICU another day can get discouraging at times. Don't worry though. The end is coming and before too long you'll wonder where the past __?__ days went.
Julie
It sounds like getting the super MRI might be a good thing as long as it doesn't upset him too much.
With that being said, I think the 3 ounce diaper-leaving is quite impressive: that is a little over 3 and half percent of his body weight. If I did that, it would be something on the order of 7 pounds and 13 ounces. This sounds a bit strange, but I would think that the ability to process that much waste is an extremely good thing in developmental terms.
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