Wednesday the 19th they did rounds and a few more members from surgery came by to discuss details about the what the surgery entailed and what they planned to do for recovery. Honestly, like a lot of things, it went right over my head. For someone who isn't medically trained it's best to not use medical terms. What do I know? Anyway, they planned to do it by the weekend and had me sign consent for anesthesia and for surgery. When my mom got there she spoke to the surgeons and because she knows more about medicine than anyone I know she was able to understand what their plans were. They planned to go in on her left side and move the bowel down from her chest and place it where it was supposed to be. They would then seal it with a muscle flap and use the muscle from an area where it wouldn't be missed. A concern was that sometimes babies with CDH have smaller stomachs because nothing was growing in there. They would move the bowel down and if the stomach was too small to seal closed they would have to leave her open. Essentially wait for her stomach to stretch enough to close up. They said there were two ways to do this procedure and one was to go in normally and move down the organs. The other was to use a camera to see where everything was specifically and then move it down. The possibility of herniating in the future was higher if they used the camera. The doctor we were lucky to have didn't want to use the camera and did the procedure normal. There are still possibilities of herniating in the future but the odds aren't as great. Lastly, after surgery they would give a medicine that would make her paralyzed for 24 hours. They wanted to give LeiLani as much of a chance as possible to heal without moving around and fighting recovery. Although I understood that it was still hard to swallow. I updated my family about the surgery being later in the week and then all of a sudden it was scheduled for the next day. That's something else I learned quickly in the NICU, plans change rapidly.
The next morning I found myself awake at my usual 5am. My mom left me her keys and said she'd take the shuttle to the hospital later. I had a very nice nurse who was more than ready for this procedure. She explained to me what her part to help would be and elaborated further the plan in entirety. That is something I adore about nurses. They know how to explain things and they know how to work with families. During my own recovery I wasn't eating. I drank all the water I could get my hands on but when it was time to eat I just couldn't. A tray came around the NICU with coffee and simple breakfast food. I grabbed a muffin and a cup of black coffee and sat in my chair trying to ease my mind. I brought my Koru with me and tried to project the meaning. My mom got me a Koru green stone necklace in New Zealand and it means "new beginnings". She got it for me when I was going through my new phase into positivity a few years back -if you all remember 😏.
11am came quickly and suddenly things got really crowded and really hectic. I was told I would need to leave once they were ready to start. I had an anesthesiologist introduce himself amongst the noise asking me if I had any concerns or questions. "You put my daughter to sleep right? Sounds pretty standard" I said. The main surgeon came in with a new consent form and asked me to sign. He said he hadn't seen the other form I had signed and didn't want any risks. The room was so crowded I didn't know where I was supposed to stand. Do I stand next to Leila? Do I leave? I went over to LeiLani and gave her a kiss and for a moment before my eyes opened it was just us. Before I knew it I was backed to the door and everyone started scrubbing in and changing into bunny suits. Oh, did I mention they did this at her bedside? The door shut and I was standing outside.
Walking out of the unit felt like in the movies where they blur out the surroundings and the noises are fuzzy as you are walking. The doors opened and I was suddenly brought to reality. I walked straight into the bathrooms just right outside the unit and bawled. I texted my sisters "surgery has started and I'm in the bathroom crying." They were all at home going through their own feelings of the surgery. Laura came to pick me up and took me to lunch. It was really nice to get out of the hospital and go somewhere there was life and some normality. When I went back to the hospital it was like nothing had changed. Visually LeiLani was the same. Her skin complexion was normal, the tubes were still doing their job and she was still "sleeping". She was definitely paralyzed and my heart hurt as I thought over and over "why her?"
I didn't get to talk to the surgeon until the next day since they're always all over the hospital. He told me everything was straight forward. Her stomach capacity was moderately tight meaning they could close her but it was a little roomy in there. I was thrilled to see she was closed. They sealed the diaphragm with a muscle flap and he stitched her up in a way that when she's older you wont really notice it. I liked that and I am sure she will be grateful for that in the future. I feel better sitting next to her. Even though she can't see me and I still don't know what color her eyes are I do better sitting there. The hill of surgery was indeed an emotional mountain and we are so glad it's over, that we made it through and that we are the recovery bend.
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