I’ve wanted to write this post for a few weeks now, but I was never able to bring myself to do it.This time around, I started by I looking at some pictures of the before and after of my son’s surgery and I felt both sad and relieved. So much has happened in his short life. In speaking to my husband about the pictures, I realized that there are full parts of that day, of that waiting process that I don’t recall. I know that my sleep wasn’t that great at the time, but it was like going through it all in a daze. Or perhaps, it is some sort of messed up coping mechanism that I have that allows me to almost detach from events that are a bit traumatic for me. Thankfully, I did write down some of my thoughts at the time, and I have some conversations with our family in my phone to go back to, in order to clarify some details.
Our surgery was scheduled for Tuesday at 1:30 pm, the second surgery of the day for the neuro team, and we had to arrive two hours early to check-in and meet with the nurse. Nobody had a great sleep that night, I guess the anxiety of everything was weighing on us all. My husband seemed to be having a hard time, and he is usually the level-headed and logical one; so, I tried to be strong for all of us. I baked some cookies for the nurses to sort of decompress. I figured it would be a nice treat, given the fact that we could be in there for about 5 days. Maybe they would appreciate it (and be a little nicer to me if I rang for assistance for the 100th time… win-win right?). Cookies, carrier, stroller, electronics, and bags of our things in tow, we set off for the hospital. The stress of the day ahead hanging heavily in the air of the car.
We arrived earlier than the 11:30 that was required, and soon met with the nurse who took basic vitals and provided us with the hospital pajamas. They were much too big, but they were the smallest size they had. There was a kind volunteer in the room who I spoke with to pass the time. The room was painted brightly, and had pictures of lots of different animals on the walls. There were games and toys spread around in a corner and a carpet to play on, as well as an area with paper, coloring pages, crayons and colored pencils. The toys may have been geared towards kids much older than my son, but I found comfort in a complex color-by-numbers sheet and tried to focus on that. I needed a distraction. I know some parents try to hold their child as much as possible, but it made me so emotional. Plus, I was afraid that my son would start getting upset that I hadn’t nursed him yet. Leading up to the surgery he was required to fast—and because I was nursing exclusively at the time, it had been a few hours since he’d had any milk. As it grew closer to “go time”, I read the words of encouragement I had put together for myself, sayings and texts to get me through this craziness. Then we prayed over our child. I can’t say we were ready, because you are never really ready for someone to cut your kid’s skull open.
1:30 came and went. We waited...
...And waited.
Nobody called us.
2 pm came and went. As more and more families were called and they left the waiting room, we remained. Trying to find something to occupy the baby as we waited. He was too young to really be engaged in anything, and we’d been in there for awhile already. I figured maybe the previous surgery ran a bit late. But as time went on, I really started wondering what was taking them so long. My son even fell asleep during the wait. But it wasn’t until almost 3 pm that we got the answer.
The neurosurgeon came out to inform us that the surgery that was scheduled before us was running way over time. In fact, the plastic surgeon was still working on her. They were reconstructing her skull. How they thought that would take only 5 hours, I have no clue, but this was the situation that we ended up in. He suggested that given the time, we wait until the following Friday (yup 9 days later). Even though the surgeons would be the same, and they were confident that they could still do the surgery that day if needed, the rest of the operating team working on our son would be switched out, so they would not be as knowledgeable about his particular case. We agreed to postpone, even though he let us know that Christmas plans could be foiled given the new surgery date’s proximity to the holidays.
I wasn’t angry at this, a bit disappointed maybe, because I was starting to wrap my mind around the thought that it was about to happen. But I tried to believe that things happen for a reason, even if I didn’t know what that reason was then. But now, came the part that I hated the most. The wait. We had waited so much already. And now 9 days more. That would be annoying.
Fast-forward 9 days, and there we were getting ready to go to the hospital for surgery. Again.
The hospital had called us the day before to let us know that the surgery would be moved from 9 am to 8 am. An hour earlier. We would need to check-in at 6:30 am. It was already so difficult to sleep, and I am SO not a morning person, so this was a terrible combination for me. But at least we were getting it done this time. I was just glad it wasn’t another rescheduling. I was up just slightly after 3 am to make sure my son got nursed for the last time before the surgery, and I just couldn’t go back to sleep. I made some cookies (yup, again!) for the nurses. I was calmer this time around, almost peaceful…very different than I had been the week before.
We arrived to the hospital before 6:30, like many other families, and were waiting outside the door until check-in opened. But this time, there was no waiting in the waiting room. After being put in his pjs, weighed and having his vitals taken, we went to a different room with all the hospital beds.
Here, we met with various members of the OR team. The anesthesiologist gave us some more information about the post-op and pain recovery plan- which did not sit that great with me, but I knew that pain management would be needed.
They tell you that one of the hardest parts of this whole thing is handing your baby off to a stranger as they take them to begin the surgery, and I can understand why. I mean, you can’t even be there while they put your child “under”. But it wasn’t that hard for me, I knew that when he would come out the other side, things would be so much better. We were making the right decision. So, when they took my son away at about 8 am, I didn’t cry. In fact, the neuro nurse spoke to us as one of them carried him off, distracting us just enough
There was a post-op waiting room, but we knew it would be awhile until he was out of surgery. We had been to the hospital enough times to know some of the cool spots, and headed to the Ronald McDonald family room. I didn’t see the purpose of waiting in a dull room where everyone in there was worried and stressed. We received a call at around 9:45, letting us know that they had started the operation about 15 minutes prior. It apparently took some time to get the IV in and get him settled. I couldn’t help but think that he fought everything they tried to poke and prod him with. I mean, they had to use a vacuum to get him out of me even with a c-section—this kid obviously had a mind of his own.
Anyway, after killing some time and mindlessly watching a Christmas movie, we headed to the post-op waiting room. While waiting, I decided to locate the pumping room (I figured I might as well get that out of the way so I could be with my son once he came out). It was around 12:20 that the neurosurgeon and nurse came out to let us know that everything went as planned. I can’t put into words how happy I was to hear this. He hadn’t lost a lot of blood and he didn’t need a blood transfusion, thank God. He would be in the recovery room shortly.
We were finally on the other side
I went in to see him first, but I guess I wasn’t fully prepared for what I would see…
This:
Although he looked peaceful, I saw that he tried to open up his eyes but he was just too tired. The poor thing! Little did I know, underneath the blanket looked more like this:
We made it, we were on the other side. The grass always seems greener on the other side, but when we got there, we were faced with other issues that we hadn’t imagined.
“...it wasn’t that things were harder than you thought they were going to be, it was that they were hard in ways that you didn’t expect.” ― Lev Grossman