The first day after post-op was a long one. Little did we know the curveball that Adeline was going to throw at us. It was the first hiccup after surgery, one of many.
Adeline had a few “episodes” overnight where she was having some dips in her oxygen saturations. At the time, Jeremy and I didn’t pay much attention to that number as we do now. I am not sure how low these dips were getting, but enough that they were starting to become more concerned.
The other thing that continued through the night was that fluid was continuing to accumulate around Adeline’s belly. They were still not sure what was causing it as they felt they had done everything they could think of to pinpoint it.
This hiccup after surgery meant Adeline was still intubated (the breathing tube in). At the time, since I was so unaware of things, I was just sad to see she still had the breathing tube. As much as I wasn’t looking forward to Adeline screaming, which is encouraged after surgery, I wanted to hear her again! I did not realize at the time just how concerning things were starting to get.
Adeline kept holding onto her fluids and she wouldn’t put out any urine. Her tummy was starting to look like she was a balloon. Cardiology had been by to see her, but they couldn’t see any concerns from their perspective. I guess it was a good thing, but it sucked that they didn’t have any answers we desperately wanted.
The doctors decided they would do one more x-ray and ultrasound to see if they could see anything.
Nothing was showing up.
The doctors were running out of options since something was obviously not right.
Their last option was to take Adeline down for an exploratory surgery.
Since Adeline was collecting so much fluid in her tummy, the doctors knew they had to put a belly catheter in to help drain the fluid. The decision was made that they would bring her down to the operating room; if they found something more, they would be able to manage it in a controlled environment.
As Adeline went down to the operating room, I was so scared for what lies ahead of her. Hopefully, they would find nothing, they would just put the catheter in her tummy, and she would come back up – recovery could resume.
After Adeline went down to the operating room, we waited in Adeline’s room for word of what they found. After a little while our ICU consultant came to give us an update on what was going on. The surgeon had decided that he had needed to open Adeline because it was going to require more than a belly catheter. After they opened Adeline’s tummy up, they had found that part of her intestines had died from something called NEC, Necrotizing Enterocolitis. This is very common in newborns and preemies. Adeline had it happen for a different reason, it was due to the perfusion in her body not being very good after surgery.
I was devastated.
How did this happen?!
I brought my baby in for surgery, she seemed healthy when we got here, what is going on?!
This can’t be happening.
The nurse told us surgery had went well and that the surgeons would probably be by to talk to us later. She asked if we had any questions and left us be.
I was in shock.
My little girl, not even a month old, already went through her second surgery. This recovery process was just supposed to be 5-7 days. Now, what was it going to look like? I just wanted to go home.
Adeline got back up to the room, and it was crazy busy as the operating room doctors gave our nurse a rundown of everything. Before too long, the pediatric surgeon was by to see us. He explained what had happened, why they made the decisions they did, and so on. Honestly, I do not remember a word he said; I just remember staring at him, overwhelmed.
When he left, Jeremy and I sat back in our chairs and watched everyone work. He held my hand as tears streamed from my eyes. I just couldn’t get past the thought of what was happening.
Soon, things started to calm down. The nurse told us if we wanted, we could come by Adeline and see her new stoma if we wanted to. I could hardly move, but Jeremy took the opportunity to go look.
The ICU Consultant, the midlevel’s, and the nurses would check on us and apologize for what had happened.
I am going to get a little science like on you now, so bear with me. Part of the thing that made this so difficult for the doctors to diagnose was Adeline wasn’t giving the typical red flags that something this serious was wrong. Usually, when perfusion is not good after surgery, someone will have a high lactate, and they do not like it over 2. Adeline’s never got over 2. Having elevated lactate would have been a critical indicator that Adeline was potentially having something happen like NEC. But, instead, the only symptom she showed was a swollen belly.
Because of Adeline’s new battle wound, she would now have an ileostomy. We weren’t really sure what this meant, we just knew it was there.
That night, when we left the hospital, I fell apart in the car. I just felt so overwhelmed by what had happened. First, Adeline had heart surgery and then a significant complication shortly after. Who knew what this would do for the recovery process as well as for her future?
I just couldn’t process it all, I needed some sleep to reset myself.
Little did we know, this is how Adeline rolls. She never fits the mold, nor does she do what she is supposed to. The next few days become even more difficult; this was just the first major hiccup after surgery, of many.
If you would like to go back and read about Adeline’s first surgery, start here.