Journal entry by Lisa Oredson —
I realize I owe everyone an update and whew I don't even know where to start.
Last Saturday Wesley gave us quite a scare. He started having many brady events shortly after I arrived at the hospital. Bradycardia is a slowing of the heart rate (he typically sits from 140-170 beats per minute and his heart rate drops out to 50s-60s) and the events were back to back. For reference, as I stare at the monitor right now, Wes has had 2 brady events in the last 24 hours (very common to have a few).....on Saturday he had more than fifty in a matter of 4 hours - terrifying. He became quite lethargic and we could hear him gulping and refluxing non stop.
They quickly started running all...sorts....of....tests. Poor guy was poked so many times :( They ran an xray, lots of blood work, started an IV of antibiotics, and even had to have a lumbar puncture to test for meningitis. They were concerned about a couple of different things, one is infection and the other is NEC (Necrotizing enterocolitis (NEC) is a serious gastrointestinal problem that mostly affects premature babies. The condition inflames intestinal tissue, causing it to die.) The antibiotics were precautionary to help kick any early onset infection until the cultures and tests came back. His x-ray showed his bowels were dilated (inflamed) on one side which they needed to watch closely. The only way to do so was to put him on 'bowel rest'...meaning they had to stop feeding him and continue with serial x-rays to see if it would resolve on it's own or if there was infection happening. We stopped feeding him at noon and knew we would not be able to feed him again at least through the night.
My mama heart was broken and terrified. To watch my stable and strong baby turn around so quickly was the scariest experience we've had in the NICU so far. I was also so sad knowing this was a step backwards in our journey to go home but I knew they had such a close eye on him. Long story short - the tests all came back cleared and no infection was found. His serial x-rays showed resolution by morning meaning NEC was no longer on the table. He stabilized himself by afternoon and through the night only had a couple of self limiting brady events meaning he was able to resolve them quickly on his own. The doctors had said they are not sure what happened but they're calling it a 'premature blip'. Some baby's go through all this growing and then their body needs a break to catch up. They're thinking this is what happened with Wes. While we don't necessarily have answers as to what was happening, I'm super grateful it wasn't an infection brewing and he's continued on a stable path after.
Another exciting thing happened this week - they finally updated the visitor policy and GUESS WHO GOT TO MEET THEIR SIBLINGS!!!!!! We were shocked and so excited to bring the big kids to the hospital to meet Wes (more videos to come). Jack was the most helpful big brother and I was quickly reminded just how much my big kid has matured in the last couple of months. Isla on the other hand - she got to hold him and was about 90 seconds in when she proclaimed "okay mom, I done" hahahaha - as expected from the attention span of a 2 year old. I think she will quickly fall into the big sister role once she realizes she's about to have a real life baby doll living with her at home.
This brings me to my next update.....are you ready for this one?
On Thursday I headed to the hospital to see my TWO MONTH OLD. I showed up (yes, only five days after his episode) to find his face was free of his oxygen cannula!! I couldn't believe it as he's been hanging on to his 'whiff' of oxygen for weeks and just couldn't seem to kick it to the curb. Then it came time for his morning feed and he shocked me yet again by finishing his entire bottle for the first time!!! When the doctors did rounds they announced to me that they would discontinue his caffeine now that he's proven he can be stable off the oxygen. It takes a week for them to be completely weaned from the caffeine and - WESLEY COULD POTENTIALLY COME HOME AS EARLY AS NEXT THURSDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I was in utter shock! No way in heck could you have told me one week ago as I held my lethargic baby in tears while praying for answers that we'd be discussing his go home plan a mere few days later.
This week has been a complete roller coaster and I simply cannot believe how far he's come. We've been in the NICU for 8+ weeks at this point and while I can't believe how it's already been this long, I also feel like this has been the longest few months of our lives. He still needs to build up to taking full oral feeds (as of yesterday we were around 60%) and continues to do well off of his oxygen and caffeine. I'm trying not to get my hopes too high as he just proved to us that things can change in an instant in here but I just can't wait to get this boy home and appreciate any prayers sent our way this week!
Last Saturday Wesley gave us quite a scare. He started having many brady events shortly after I arrived at the hospital. Bradycardia is a slowing of the heart rate (he typically sits from 140-170 beats per minute and his heart rate drops out to 50s-60s) and the events were back to back. For reference, as I stare at the monitor right now, Wes has had 2 brady events in the last 24 hours (very common to have a few).....on Saturday he had more than fifty in a matter of 4 hours - terrifying. He became quite lethargic and we could hear him gulping and refluxing non stop.
They quickly started running all...sorts....of....tests. Poor guy was poked so many times :( They ran an xray, lots of blood work, started an IV of antibiotics, and even had to have a lumbar puncture to test for meningitis. They were concerned about a couple of different things, one is infection and the other is NEC (Necrotizing enterocolitis (NEC) is a serious gastrointestinal problem that mostly affects premature babies. The condition inflames intestinal tissue, causing it to die.) The antibiotics were precautionary to help kick any early onset infection until the cultures and tests came back. His x-ray showed his bowels were dilated (inflamed) on one side which they needed to watch closely. The only way to do so was to put him on 'bowel rest'...meaning they had to stop feeding him and continue with serial x-rays to see if it would resolve on it's own or if there was infection happening. We stopped feeding him at noon and knew we would not be able to feed him again at least through the night.
My mama heart was broken and terrified. To watch my stable and strong baby turn around so quickly was the scariest experience we've had in the NICU so far. I was also so sad knowing this was a step backwards in our journey to go home but I knew they had such a close eye on him. Long story short - the tests all came back cleared and no infection was found. His serial x-rays showed resolution by morning meaning NEC was no longer on the table. He stabilized himself by afternoon and through the night only had a couple of self limiting brady events meaning he was able to resolve them quickly on his own. The doctors had said they are not sure what happened but they're calling it a 'premature blip'. Some baby's go through all this growing and then their body needs a break to catch up. They're thinking this is what happened with Wes. While we don't necessarily have answers as to what was happening, I'm super grateful it wasn't an infection brewing and he's continued on a stable path after.
Another exciting thing happened this week - they finally updated the visitor policy and GUESS WHO GOT TO MEET THEIR SIBLINGS!!!!!! We were shocked and so excited to bring the big kids to the hospital to meet Wes (more videos to come). Jack was the most helpful big brother and I was quickly reminded just how much my big kid has matured in the last couple of months. Isla on the other hand - she got to hold him and was about 90 seconds in when she proclaimed "okay mom, I done" hahahaha - as expected from the attention span of a 2 year old. I think she will quickly fall into the big sister role once she realizes she's about to have a real life baby doll living with her at home.
This brings me to my next update.....are you ready for this one?
On Thursday I headed to the hospital to see my TWO MONTH OLD. I showed up (yes, only five days after his episode) to find his face was free of his oxygen cannula!! I couldn't believe it as he's been hanging on to his 'whiff' of oxygen for weeks and just couldn't seem to kick it to the curb. Then it came time for his morning feed and he shocked me yet again by finishing his entire bottle for the first time!!! When the doctors did rounds they announced to me that they would discontinue his caffeine now that he's proven he can be stable off the oxygen. It takes a week for them to be completely weaned from the caffeine and - WESLEY COULD POTENTIALLY COME HOME AS EARLY AS NEXT THURSDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I was in utter shock! No way in heck could you have told me one week ago as I held my lethargic baby in tears while praying for answers that we'd be discussing his go home plan a mere few days later.
This week has been a complete roller coaster and I simply cannot believe how far he's come. We've been in the NICU for 8+ weeks at this point and while I can't believe how it's already been this long, I also feel like this has been the longest few months of our lives. He still needs to build up to taking full oral feeds (as of yesterday we were around 60%) and continues to do well off of his oxygen and caffeine. I'm trying not to get my hopes too high as he just proved to us that things can change in an instant in here but I just can't wait to get this boy home and appreciate any prayers sent our way this week!
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