Just when you think the waters are clear... early morning January 12th, Finley went into respiratory distress and stopped breathing. Thankfully it happened right in front of me, Rick and I began CPR, revived him and paramedics arrived in a miraculous 5 minutes. If your jaw is on the floor right now I would understand! Ok, this is a long story and we are still not entirely sure what happened, there are many theories so I will try to keep it simple. Due to his omphalocele, Fin's lungs are hypoplastic (small, fewer vessels and alveoli). A simple stuffy nose/cold can impede his breathing much more so than a "normal" baby. Incidentally, this information along with some other findings would have been VERY helpful for Rick and I to know prior to this, but that is a story I won't go into here for fear of ranting. One thing we did and do know is that Fin has fairly severe reflux. In the days leading up to this event, Fin's reflux seemed to worsen causing him to wheeze and sound froggy. With reflux and an NG tube there is a danger of aspiration, which can obviously cause serious problems, so I took him to his pediatrician and was told his lungs were clear, but we sent him for a chest xray just in case. We were told his xray was also clear. I took him home with confidence, but a few days later he developed a runny nose. After a phone call to the doctor and an appointment set for the next day, I continued to take his temperature - no fever - and just tried to soothe him so he could sleep. As the night went on, his breathing continued to become more labored and Fin was not a happy camper. At around 4:30 AM, at the tail end of an NG feed, I decided to give him some Tylenol. Here's where things get crazy. What we think happened is that Fin "vagaled". This happened in the NICU many times and it's kind of confusing to explain. Basically it has to do with the parasympathetic nervous system and the sympathetic nervous system and what happens when the vagal nerve is stimulated. Fin is more sensitive to this given that he has had something down his throat since the day he was born! Suffice it to say that the perfect storm was created and at that moment, Fin stopped breathing. Had we known he was vagaling, we may have handled the situation differently, but in the absence of monitors, all we knew was that he wasn't breathing and his color drained. A parent's worst nightmare unfolded and panic followed by action ensued. After what seemed like forever, he took a gasp of air. Paramedics arrived minutes later and off we went in the ambulance to the ER.
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| In the ER |
Fast forward a week later and we are still in the Pediatric ICU (PICU). Why you may ask? Well, Fin wants to know too! He has been on a ventilator this whole time... the dreaded tube is back! He does have a viral infection which may have been brewing for longer than we knew and he also may have been "micro-aspirating" from his reflux. That, in combination with his hypoplastic lungs means that he still needs breathing support.
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| In the PICU, day 3, still so puffy from all the fluids and a blood transfusion. |
The good news is that all his other systems have basically recovered and his brain activity is normal. (Hallelujah!) We are working hard to get the fluid off his lungs, clear his infection and mucous plugs and get him extubated. He has to be restrained and sedated because our little super hero with the heart of a lion is fighting that tube every step of the way! I really can't put into words how difficult this is to watch. To say that it's hard not to blame myself for what happened is an understatement. To say that my heart is not broken because my sweet boy is back in the hospital, restrained in a crib and not in my arms would be a lie. The moment I wish things could be "normal" I feel terribly guilty for having such thoughts because Fin certainly didn't ask for any of this!! I have such a hard time with the word "normal". No, Fin is not normal compared to other babies his age, but he is normal relative to what he has been through. A good friend of mine suggested I look at Fin as a "rule breaker" and I love that. If things were any different, he wouldn't be my Fin and I wouldn't trade him for ANYTHING. This child has taught me more in 5 1/2 months than I have learned in my lifetime. He chose me to be his mom, so I have to believe in my heart that I can handle this. A quick word about Rick... Fin couldn't ask for a better dad. He remained calm during a time when I was frantic and that's putting it mildly. When the paramedics were suctioning Fin and giving him oxygen in our bedroom I turned to Rick and said "you saved our son's life" and he truly did. Now I'm going to soap box for a minute.... if you don't know infant/child CPR, TAKE A CLASS!!! Our attempt was clumsy at best, but it worked. Thank you to Karen, our friend and one of Fin's primary nurses in the NICU. She taught us what to do and she was in the room with us that night. It's something you never think you will need to use but you never know!
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| One week in, doing better but wants out of this crib! |
Hopefully, the next time I blog will be from home. It's funny because I had meant to update sooner because things really had been going well at home prior to this, so please send us your good thoughts/prayers/vibes for a speedy recovery. I know it helps!
Thanks for reading and thanks for all the kind love and support.
Love, Fin, Daria & Rick
xoxoxoxo
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| Point Dume, Malibu, 4 days prior to hospitalization. |
