On Jack’s fifth day of life, we got to the hospital early (5 something) so we could hold him one more time before he went to the OR. We didn’t know that would be the last time we would hold him (alive).
We sang worship songs, snuggled him tight and then the call came that the OR was ready and we had to start moving. A transport guy and his NICU nurse walked us down to the PACU. We met the senior surgeon (we had only met the junior surgeon the day prior) and the anesthesiologist - he squeezed his hand, gave him lots of kisses and they wheeled him off. We went upstairs to a waiting area on the peds floor which was mostly empty (COVID rules were still in place so very few visitors). We watched the office on the giant tv, I think I did some charting since I was supposed to go to a long term care facility that week. We got text updates every hour or so.
We knew the gist of the events that would take place. First they would sedate & intubate him then cardiology would do some measuring and imagery. When they did a transesophageal echocardiogram, they noticed his heart was slightly crooked (not totally wild) and that all of his valves on the left side that they thought were too small were actually measuring as big enough to use. The cardiologist told us they measured 40 times. He asked another cardiologist to review it and give an opinion. He called an offsite cardiologist, same thing. The senior surgeon and the cardiologist called and said “where are you? Jack is ok but we want to come talk to you about the plan.” 15 min later they practically BUSTED into the waiting area. They told us what they saw and said they felt confident he did NOT need the 3 part palliative surgery to treat hypoplastic left heart syndrome. They felt certain they could fix his narrowed aortic arch and close a small hole between his right and left ventricle and it would be sufficient. A one and done surgery. No need for follow up surgeries. The graft on the arch would grow with him as it was human donor tissue. We felt like this was a miracle. We agreed and they ran out of there as fast as possible.
We waited the rest of the day - got food, walked around a little (I mean a little… still feeling like I got hit by a truck and my ankles were more swollen now than before giving birth!)
For more context, during open heart surgeries they have to use a cardiac bypass machine. I don’t know the details (#dietitian and #notmyspecialty) but I know that it reroutes the blood through an exterior heart so your heart can be worked on. Around 3pm, they gave an update that they had taken jack off the bypass machine and monitored, then realized there was a small leak that needed to be patched. So they put him back on the bypass machine (giving him some more fluid to keep his BP up) and then when they tried to take him off again, he couldn’t tolerate it. We met with the surgeon briefly and he explained that Jack would come out of the OR on ECMO - a machine that does a similar job as cardiac bypass, an external heart. ECMO was to be temporary until they removed fluid and his heart could do its job a little easier.
They prepared us before this day that he would get a lot of fluid during surgery and be pretty edematous/puffy and not look at all like himself post op. They reminded us of that again before we saw him that afternoon. When we got to his room, there were about 8-10 people there - setting up ECMO equipment, iv poles for drips, plugging in things, sorting lines and wires. It was chaos.
His bedside nurse for the shift stepped right up and in true heroic nurse fashion she gave us the run down on what lines he had and what the tubes and wires were and explained the basics about his open chest. (If you’re squimish, I’d stop here) When I saw open chest, I do truly mean that his chest was left unstitched - in tiny babies there is so much swelling that they often can’t close the chest for a few days. For Jack, that was part of the reason it was left open. The other part was he had three tubes sutured in place to filter blood out to the ECMO machine to get oxygenated and sent back to his body.
In one hand I think: that is extremely complicated. Genuinely insane that it exists.
In the other hand: that was absolutely brutal to see my baby look that way when I had just held his sweet tiny little perfect body 10 hours before.
There was so much to process that day. My baby just went through hell and back and worse (we hoped that would get better, it didn’t). My body still felt like I’d been through hell & back recently (that got better PTL). I’m now learning and absorbing TONS of new medical jargon to understand WTH is going on (that continued).
We did eventually leave and meet Ike’s siblings for dinner and then go home.
We felt relieved that night - that Jack had gone through surgery, he didn’t need the huge complicated surgery (or follow up surgeries) we thought he would, yes he was on ECMO but we thought it was temporary.
To be continued…
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