Like I did the other day, here's the e-mail I just sent out to family/friends to update them on Landon's progress. I'm off to bed, but I know there are people reading the blog to find out what he's doing, so I wanted to keep you in the loop as well. It's so comforting to know there are so many people out there thinking and praying for us- even so many that I've never met! The internet can be such a lovely thing.
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Hello all,
Yesterday we were concerned about Landon's episodes of de-saturation (de-sats) where his oxygen saturation would go down and he'd turn blue until the nurse put the oxygen mask near his face. Every time he has an "episode", the clock restarts for five days until he can come home. We were hoping yesterday would be the end of them, but when we called his nurse at 8am we found out that he had several episodes over last night and one already this morning. Obviously, this was incredibly disappointing- we were so encouraged by his progress the past few days- I think that was keeping us going. We headed out for the NICU to spend another day by his isolette feeling a little down- it was starting to sink in that it could be many more days of driving back and forth and leaving him each night.
Luckily there was some good news. We spoke with the doctor after we arrived and she didn't seem worried about his de-sats. She felt they were just bumps along the road of him learning how to breathe on his own- apparently he hasn't quite figured out that breathing is not optional and that yes, he must do it all the time. It's tough learning all these rules of surviving in the outside world! He de-satted twice this morning while he was sleeping, but each time he only needed a little nudge to remind him to take a deep breath (no oxygen mask required). This afternoon he did great- no de-sat episodes, even during his feedings and some pretty deep sleeping. We'll call his nurse again to hear how he's doing before we go to bed.
Other bits of progress: he was moved out of his isolette and into a regular crib this morning. His temperature stayed regulated so the isolette was officially taken away! He also had his IV removed (it was turned off yesterday, but they left it in just in case) so he has one less attachment. He's getting quite squirmy so I'm sure he's enjoying his increased freedom. JP and I spend most of the day just sitting by his crib watching him move around in his sleep- he's getting so much more active, it's incredibly entertaining. Now that he's doing so much better and is off the bilirubin lights, we get to be a lot more involved in his care- we fed him his bottles, burped him (our favorite photo ops), and changed his diapers throughout the day. We also spend far too much time staring at the numbers on his monitor, holding our breath every time the oxygen saturation number starts to go down. The nurse threatened to turn off the monitor if we didn't stop watching (she has her own viewer), so we're trying not to fixate on it.
JP actually just called the night nurse and he's doing great- no de-sat episodes! Hopefully we'll hear the same when we call in the morning, but as he's shown us since the moment he decided to arrive- Landon is pretty much in charge of his own timeline. As always we're thankful that we're just waiting for when he's ready to come home and not worrying about the if. Send thoughts of 96% saturation his way!
Yesterday we were concerned about Landon's episodes of de-saturation (de-sats) where his oxygen saturation would go down and he'd turn blue until the nurse put the oxygen mask near his face. Every time he has an "episode", the clock restarts for five days until he can come home. We were hoping yesterday would be the end of them, but when we called his nurse at 8am we found out that he had several episodes over last night and one already this morning. Obviously, this was incredibly disappointing- we were so encouraged by his progress the past few days- I think that was keeping us going. We headed out for the NICU to spend another day by his isolette feeling a little down- it was starting to sink in that it could be many more days of driving back and forth and leaving him each night.
Luckily there was some good news. We spoke with the doctor after we arrived and she didn't seem worried about his de-sats. She felt they were just bumps along the road of him learning how to breathe on his own- apparently he hasn't quite figured out that breathing is not optional and that yes, he must do it all the time. It's tough learning all these rules of surviving in the outside world! He de-satted twice this morning while he was sleeping, but each time he only needed a little nudge to remind him to take a deep breath (no oxygen mask required). This afternoon he did great- no de-sat episodes, even during his feedings and some pretty deep sleeping. We'll call his nurse again to hear how he's doing before we go to bed.Other bits of progress: he was moved out of his isolette and into a regular crib this morning. His temperature stayed regulated so the isolette was officially taken away! He also had his IV removed (it was turned off yesterday, but they left it in just in case) so he has one less attachment. He's getting quite squirmy so I'm sure he's enjoying his increased freedom. JP and I spend most of the day just sitting by his crib watching him move around in his sleep- he's getting so much more active, it's incredibly entertaining. Now that he's doing so much better and is off the bilirubin lights, we get to be a lot more involved in his care- we fed him his bottles, burped him (our favorite photo ops), and changed his diapers throughout the day. We also spend far too much time staring at the numbers on his monitor, holding our breath every time the oxygen saturation number starts to go down. The nurse threatened to turn off the monitor if we didn't stop watching (she has her own viewer), so we're trying not to fixate on it.
JP actually just called the night nurse and he's doing great- no de-sat episodes! Hopefully we'll hear the same when we call in the morning, but as he's shown us since the moment he decided to arrive- Landon is pretty much in charge of his own timeline. As always we're thankful that we're just waiting for when he's ready to come home and not worrying about the if. Send thoughts of 96% saturation his way!
(sending thoughts of 96% saturation)
ReplyDeletegood luck!
He's so cute!! Hope that his sats stayed up all night and that he is much improved today. :)
ReplyDeleteDefinitely fingers crossed for 96%. I am lovin' the pics - boy is he a cutie pie!!!
ReplyDelete