It's the NICU shuffle

How does it go again? Oh yeah, two steps forward, one step back.
We just stepped back.

Greyson had some HUGE destats this morning. They don't tell you these thigns in the NICU. They sugar coat - I found this out by reading his chart. And good thing I did because 45 min later the doctor came in and told me he wants to put Greyson back on the nasal cannula. I was floored. He's been off of it for awhile now and when he is not destating he keeps his stats at a happy 99 or 100. But since he dropped so low this morning (in the 20's) and needed serious help to get back (the CPAP - the huge one that forces oxygen into his lungs) it's clear that something needed to happen and really I support any measure that helps Greyson.

That doesn't change the fact that I don't like it. After the doc left I just sat there holding my sweet sleeping boy and cried. When Paxton the respiratory guy came in to fit the cannula I had to leave. It just made me so sad. I got to see his whole face for less than 24 hours and now he has the cannula again and this sets us back on his coming home. sigh.

You'd think I'd get used to the ups and downs of the NICU, but no. The downs are always a shock.

Acid Reflux?

I'm starting to think that Greyson's problems involve some serious acid reflux. His stats dropped and he got really fussy and then he let out a huge burp and seemed much better. They are putting the High Flow Nasal Cannula on him right now and I decided to stop out of the room - it gets really crowded.
If this HFNC doesn't help they may start him on some meds for reflux. I just want something to work.

UPDATE: Well, they put the HFNC on and while the Respiratory Therapist said that Greyson fussed the whole time he was doing much better when I left. I hope he keeps it up!

Trying to Curb The Apnea

Greyson just won't kick these apnea issues. They've maxed him out on caffeine and it never did anything. His extended feedings don't seem to be doing much either. The good news is that his heart rate doesn't drop very often but his oxygen levels sure do (the bad). So today they are switching him to the high-flow nasal cannula. I think it will look the same as the regular cannula, but it will give him more flow and the air will be more humidified (something I could use as the hospital is SO dry).

This is one of those one step back days... We just have to get this figured out!

We'd appreciate any prayers/positive vibes that we can fix this apnea issue quickly and that our little Greyson will master breathing soon.

Apnea, Eating and RSV

Everyone is still trying to figure out this apnea thing with Greyson. The caffeine hasn't had much effect and neither has extending his feedings from 30 min. to 1 hour, or elevating his the head of his bed. So yesterday they tried reducing the flow of oxygen in his nasal cannula thinking that perhaps he is getting too much oxygen too easily and then forgetting to breath at other points. So his flow has been cut by half. I'm hoping he'll show sign of improvement soon. At this time it is his biggest hurdle.

Greyson will be getting his RSV vaccine tomorrow. Having a preemie baby in the middle of winter means he will be especially susceptible to RSV and his little lungs really don't need that. He will be getting a shot every month until winter is over and then start again in the fall. Poor little guy, that is a lots of pokes.

His feeding tube has also been moved from his mouth to his nose. He seems more comfortable this way and is taking a pacifier more easily. It doesn't actually "pacify" him, but it helps to teach him how to suck - a still he will need to master before coming home. Yesterday while up in the NICU I was thinking about how little crying you hear. I've only head Greyson cry once and it was very short lived and fairly wimpy. I wonder if that will keep up when he comes home?

Greyson with his nasal feeding tube. All bundled up and taking a nap.
(Bonus with the new tube - he doesn't try to pull it out as often!)

An Apnea Update

Greyson is still having apnea episodes but they seem to be mainly tied with his feedings. So instead of 30ml given to him over 30min he will be getting 33ml over 1 hour. He will still be doing this every 3 hours. They have also elevated the head of his bed even more, in hopes that it reduces the acid reflux issues. They started this last night and while it is helping he is still having them.

I know that he just needs time to grow out of this phase and that his body is still so small that destating is to be expected, but I really don't want it to happen to my wonderful little boy. I am so looking forward to heading up to the NICU later this morning so I can hold him through a feeding and just spend time with him.

One upside is that Greyson is champ about coming out of the destats. Often he comes out on his own and the rest of the time he just needs to be repositioned a little bit. Since he spends so much time on his tummy (in the featal position - which I can tell you he NEVER stayed in when he WAS a fetus) he has already developed really strong neck muscles and tends to get himself in wonky positions. He's moved his head several times while I've been holding him and it always amazes me... and freaks me out a little bit. It is usually after these movements that he destats because his ariways aren't as clear. I've learned to move him back and keep his chin from getting tucked, but I'm still a little nervous about moving him around too much. He is just so little and so sweet.