We were still staying above the NICU so even though they told us to be there before 6am to talk to the doctors before surgery, we were still early. My parents had asked if they could be there for the surgery waiting room part, but wanted to give us some time alone with Jonah in the morning. I again told Jonah to be brave and listen to the doctors, I again promised that as soon as he was better we would take him home where it would be a lot more fun. That there was a nursery and a dog and lots of toys waiting for him so he had to be strong and work as hard as he could. The OR nurse asked if I wanted to give him a kiss and I was so grateful, up until then I hadn't been asked and therefore didn't since I wasn't sure of rules because of germs. Later I thought back at the absurdity of everything a NICU mom misses and how easy it is to become NICU-ized where you're used to doing exactly as you're told and nothing else. I recommend asking first (of course) but getting as involved as possibe as quickly as possible and doing as many "normal" things as you can.
I managed not to cry until after they wheeled him away, then I couldn't help it and my husband gave me a hug. The nurse tried to reassure me that the surgeons were wonderful and that it would all be all right but she didn't seem to understand that in my head I knew all that but that it didn't change the fact that my four day old infant was being wheeled off for major surgery and I was scared.
The OR nurse promised to call us in an hour and a half and recommended we wait in the surgical waiting room so we headed down there to wait. After about an hour my parents showed up as scheduled and we waited. The 1.5 hour mark came and went and I had just said that if it got to be 2 hours I was going to ask for an update when the phone rang and they called out asking for the family of Jonah. The nurse didn't have much of an update, they had gotten a slow start and they had actually just begun and she promised a call in another hour. More waiting, reading stupid magazines and making small talk and waiting. One positive thing is that my husband managed to connect with the manager at the job he interviewed for before Jonah was born and accepted an IT Manager position at their company. They agree on a start date in two weeks, enough time to make sure Jonah is stable and hopefully on his way home!
When the OR nurse called a second time she said it was going well and they would be finished in another 30 minutes at which point Dr. Lal would find us. I asked whether the thoroscopic procedure was successful or whether it had moved to being an open surgery and she said thoroscopic. I asked whether they had needed a patch and she said no, there was enough diaphram to pull it closed. Both excellent outcomes! Dr. Lal came out later and pulled us all into a consultation room. He let us know that Jonah had done very well and that he was very happy with how it had gone. He was less able to give us long-term prognosis. I wanted to know whether this would affect him long term, did we think asthma might be a problem, reflux, oxygen dependancy? He said that he didn't think so, but you just never know. He did mention that there was an increased chance for reflux as an infant but that he would probably grow out of it just as a regular baby would. He also explained something that every CDH parent needs to be aware of, or any caregiver of a CDH (or really any) child. If a child vomits green bile, there is a chance that their bowels are malrotated. This is possible with anyone, but there is a higher chance with CDH kids because their bowels have been moved out of alignment when they were in utero and didn't have a chance to settle in just right. If that ever happens, its necessary to take him to the ER immediately as the bowels could die if starved of oxygen too long.
Second thing for a CDH family to know is that when the surgeon tells you that the child may get "sicker" before he gets better, trust the doctor and prepare yourself. I thought he meant that he would look sicker, retain water, feel pain, I somehow didn't prepare myself for the fact that we would need to go up levels of care and onto a new ventilator, that scared me when in retrospect it was exactly what Dr. Lal had warned us about in the consultation room.
We had to wait another hour as they finished closing Jonah up and got him resettled in the NICU. Then we went to see him. As promised, he was knocked out cold when we saw him, but he looked pretty much like I would expect, pretty rough but with teeny tiny incisions and overall pretty good. We decided to go out for a celebratory lunch, after all, every single thing had gone our way, Jonah tolerated the surgery, they did it thoroscopically, they didn't need a patch, it was a success, everything was great, right? We went just down the road to Mayfair and I was enjoying my (low LOW fat still) lunch when about halfway through I got very uncomfortable. What was I doing being so far away? Of course I had my cell phone and the nurses knew to call me, but I wasn't THERE! I was just convinced someting was wrong and I was scared to death. I practically flew back to the NICU (so much for the doctor's orders not to walk too much or too fast so soon) and as I turned off my cell (no cells on in the NICU) and washed my hands and went down to our "Pod" I saw at the end of the hall there were a ton of people in Jonah's "room". As any NICU mother will tell you, more attention is a bad thing. You want your child to be nice and boring...more attention means that something is wrong, the well kids they leave alone to grow and get better.
I looked around for someone to explain what was going on, Children's Hospital of WI is great in that they try to keep the parents very informed/involved. It was explained to me that they thought there was a leak in his lung so they were going to stick a thin tube in his side to see if they got air. They didn't get any, thank goodness. But they did decide to move him up to an oscillating ventilator, which, thanks to my power researching in the 11 days between the diagnosis and his birth, I knew was not a promising sign. Oscillating ventilators are very gentle, but they represent the next level of assistance, so essentially a step in the wrong direction. This machine would give Jonah 600 breaths per minute, making his chest "wiggle" (that's a neonatologist's term for it, not mine). He assured me that this was mostly a precaution, they would rather move Jonah onto it before he really needed it so he didn't have to work too hard. OK, but I really don't like it, I thought, but you know best.
With the oscillating ventilator in the room, there wasn't a whole lot of room for us, we kind of sat just outside the room or stood on the other side of his bed. It was kind of noisy too, and while he was on it there was no chance of us getting to hold him. Luckily he was on the oscillating ventilator only a little over a day and we moved back down to the regular ventilator. They kept it in his room for a few days, the nurse lovingly joked that they were keeping it there to scare poor Jonah, "see what's going to happen if you don't behave" sort of a thing. I knew the truth though, one false step and he'd be back on it quicker than I could blink. Between that and his billy lights for his jauntice (pretty typical for a preemie and the least of our worries) we always joked he looked like he was at the spa, he had little sunglasses on, a "tanning" light, and his chest was vibrating as if getting a massage. It's a joke I've often heard repeated, that's how much it looks like that, plus, it at least makes you feel a bit better as it brings soothing/calming thoughts to mind. I'll see if I can post a video, but for now a photo will have to do.
Overall the surgery day was scarier than anything we'd been though and I wouldn't wish it on anyone. And that's with everything going relatively well except for a few setbacks, I cannot fathom the pain and anguish of parents where the surgery did not go well and my heart goes out to anyone in a similar situation.
