The Post I Never Wrote

A couple months ago Alex and I were talking about Jaxson’s heart surgery. It’s something we rarely talk about as it’s in our past and behind us. But for whatever reason it was the topic of conversation. Alex then brought up ‘the incident’….. She asked my why I’ve never blogged about it and never talk about it.

That got me thinking….. I don’t think it’s intentional…. Maybe it is a little…… Most people don’t know about ‘the incident’, in fact very very few people know about it. It’s something I don’t like to think about, much less talk about. But here it goes….

After 5 and a half anxious hours of waiting to hear news about how Jaxson’s heart surgery went and how he was doing, we watched his surgeon walk out of the O.R. and head straight for us. He took us aside and sat us down. He started off with “Jaxson is doing great, BUT the surgery didn’t go as well as I hoped….” He then went on to tell us that Jaxson’s common valve (the giant singular valve that split his 2 gaping chambers) was the worst he’s even seen. He told us that he didn’t have much valve tissue to work with to make 2 valves out of. He did the best he could with the little he had to work with but he was confident it wasn’t going to hold. He prepared us for the high likelihood of Jaxson having to go back to the O.R. within the next 24 hours to receive an artificial valve.

In that instant I think we both felt totally deflated. We were so thankful that our 11 week old baby had made it through open heart surgery, but the fact that he was most likely going to have to go back very soon for another was almost too much to handle.

Reeling from that crappy news we grabbed our belongings and headed over to the hallway of the PCICU to wait for the ‘all clear’ to go in and see our baby. After another 40 minute wait a nurse came to fetch us and lead us to Jaxson’s area.

Jaxson was so tiny laying on that crib and had so many attachments. They were in the tail end of transferring all of his meds, equipment, and lines over. Little, tiny Jax was surrounded by RT’s, doctors and nurses. We stood back, out of the way, and watched the organized chaos that I am very familiar with when it comes to transferring a critically ill patient.

Thats when it happened. One alarm starting dinging….. no big deal I thought,  it’s obviously a sensor that isn’t picking up what it should. Then the dinging turned into the loud alarm. Instantly my eyes shot up to his monitor. One flashing number turned into two, then three. Instantly the number of people around his bed doubled. Jaxson was completely surrounded and the organized chaos turned not so organized. Then the apnea alarm sounded. The loudest alarm of them all. Thats the alarm that tells you the patient is no longer breathing. At this point people started shouting and moving fast. Very very fast. But no matter what they did that alarm kept going….

Time all of a sudden went into slow motion. I knew what was about to happen next. I knew that apnea in an unstable infant won’t last long until his insanely fragile heart that had just been on bipass, cut, and stitched up just stops. My head had one million thoughts flying through it all at once but the thought that screamed the loudest was “I can’t stay and watch them code my baby.”

I left. My shaky legs carried me back to the hallway where I collapsed against the wall. I couldn’t breathe. I panicked. The single most horrendous feeling of my entire life. I was angry, I was so angry….. All I could think was we got our perfect child, we’ve fallen completely in love with him and he’s being taken away from us. Just like that, in a blink of an eye.

I sat in that hallway for what seemed like an eternity, but I think it was only 10 minutes or so. I couldn’t bare to go back in there to see the scene that was surrounding Jaxson. eventually the social worker from the PCICU came out and sat down beside me. The only thing I could get out was “is he alive?”. When she smiled I knew everything was ok and I got my legs back under me and walked back in.

To this day I am amazed that Alex was able to stay in there and watch it unfold. She’s so strong and brave! I think I’ve been a part of too many bad situations just like that and still have those scenes burned into my brain. I just couldn’t bare to have the most horrific scene of all piled on top of all the other ones.

In the end the culprit of the apnea was a large mucous plug in his endotracheal tube. Alex said it took them a bit to figure it out but once they pinpointed the problem and resolved it, everything stabilized quickly.

Not a day goes by that I don’t thank the universe for Jaxson and for keeping him here for all of us to enjoy ❤ (and on a side note, that fragile valve that was probably going to have to be replaced within 24 hours is still holding strong a year an a half later with no signs of failure!!)



5 thoughts on “The Post I Never Wrote

  1. I know how unbearable the feeling is and it breaks my heart to hear your story! I think of your little Jax often. He is a lucky little boy to have the two of you!


  2. Wow ! That was hard to read ! I to know the feeling of having those patients but cannot bare the thought of it being my baby! You both seem to be the perfect pair complimenting each other ! Xo


  3. I can’t even imagine – for us, our surgery should have been 6 hours, but it was 4.5 – he should have been in the hospital for around 1.5-2 weeks, he was 6 days, and even still, every cough, cry, movement was enough for me to panic a bit… Even out of the icu I slept in the chair beside him, and helped him with the pain meds. I can’t even fathom being there for anything like that…..our guy was almost 5 months old for his AVSD repair, and he felt too small! So glad everything is checking out ok after a year and a bit! Jaxson is an inspiration for me for sure 😃 I love every post and if you guys ever end up on the east coast would love for him and Aidan to hang out!


  4. Hi! I just saw your intro on the queer mamas fb group page. This was very hard to read indeed – thank you for sharing – I felt like I was right there in the room with you. My older half-brother has downs and just turned 39. He’s had his challenges over the years and can still be quite a handful at times, but his heart is so incredibly large, he is very creative, energetic, and he’s always up for big adventures. Your family is beautiful! Xx


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