Last Monday night, I was faced with another hard decision over what I needed to do for Nora. Eating has always been a struggle since her early birth in 2012. It isn't even the fact that she will be three in a few short weeks and weigh a whopping 21 pounds. The only reason she is getting concerned looks from Doctors is because she has been 21 pounds for over half a year. She hasn't gained at all, in fact she has lost ounces.
The few days leading up to last Monday Nora was eating less and less and forcing what she did get down, back up. Just a couple days passed, and more and more frequently less and less had been staying down. Finally, that Monday evening Nora wouldn't eat. Not a single thing. She kept trying to bring food up, but no one could see anything. "Throat hurt, mommy" she had said to me. I checked her lip color, listened to her breathing. Everything had checked out. Her lips were a nice pink and her breathing sounded clear. I decided I would call first thing in the morning and give her milk for the night. She was excited for her bottle when she reached for it. Instantly, I saw her eyes go from relieved for milk to scared in just seconds. Then, I saw her fear. The milk just poured back out over her lips. She was choking, on milk. Zack and I cleaned her up and checked her throat once more. She was raspy this time. It was all I needed to go on that something was wrong even if I couldn't see anything looking in her mouth.
I grabbed her diaper bag, extra jammies, diapers, toys, phone charger, wallet, and Caroline. The three of us were buckled with readiness and there I found myself driving the 45 miles to Brenner Children's Hospital once more. Something so sudden like an un-planned trip to the E.R. with Nora and going from "okay" to "unknown" has become a trigger for me. Suddenly, there I was again with my baby in an unknown situation, in a hospital I both loved and feared, but needed in order to protect Nora.
The parking deck echoed as my and Caroline's shoes raced to the Brenner E.R. doors. It was cold and you could hear the cold suck behind us as we stepped pass the sliding glass doors to the check-in desk. It took no time before we were sent to triage, then to our own little room for the moment. Nora's files were extensive but at least each trip back "home" everyone on the floor knew Nora and her story. That's how they said it, her story. They already had her surgeon on the phone getting orders for what the situation called for. It was late, Nora's vitals had been stable since arrival. It was clear to everyone that something was wrong in her esophagus, but it was safe to hold-off until morning when the surgeon could come in.
Until then, Nora and I were being admitted and they needed to put an I.V. in Nora since she wasn't able to take liquids orally. Fun. Nora hates white coats, latex gloves and any sort of invasion of her person. I had Caroline with us and she was watching as three nurses held down her sister, wrapped her in a fashion to prevent kicking and arms wailing. Nora screamed louder which each breath. Caroline was witnessing her sisters struggles first hand this time, she had never been in the room before. Caroline grew scared and started crying for Nora. I had to hold Caroline so the nurses could keep Nora from hurting herself or someone. Well, as sad as we all were to see the sisters cry for each other, as soon as Nora heard Caroline's cry over hers she sat up so quickly with a look that read "who made my sister cry". Nora's height didn't reach over 3 feet tall but she had the tallest attitude in the room. As scared as she had been, no one was allowed to make her sister cry. I found that moment amazing, my girls fighting for each other. The nurses noticed this and felt the urge to cry with us.
Monday night, I didn't sleep. I watched Nora. She was sad, uncomfortable and had been trying to tell me as best she could that day what was wrong. I felt helpless in a hospital that night. 6:30 am came with no alarm just the many rhythmic footsteps which told me "Rounds" was walking in our room. "Rounds" or also known as Nora's team of specialists. They went over the needs for an esophagram. Nora may have a foreign object lodged, a stricture, or tightening in her esophagus. There was even a chance there could be severe inflammation. An esophagram would reveal the unknown, they thought.
Nora had never been a willing participant for any procedure. Even at 3 pounds (She sprained her foot from kicking to hard). She was not going to help along an eshophagram. Luckily, her speech therapist from the day one in the NICU heard rumors of her arrival and talked to the imaging department to spread out Nora's schedule to give them more time to work with Nora in a more positive way, to try to ease some fear. No, it didn't work but it was the thought and efforts that make a difference overall. Nora saw through the plan and retaliated. That had been expected as well. We got through the esophagram which showed evidence of a very wide opening at the top and a very small opening where her original surgery connected both ends of her esophagus.
Our afternoon was spent in O.R. prepping to go under for surgery. Nora had been convinced with a million Mickey mouse toys by her side, a book and mommy. It was me that was unsure of letting go. Anethstesia scared me. I been there several times for her anethstesia, but each time watching your child going to sleep and the last thing they see is your face and you know she knew something was coming next, and knowing I couldn't stop it because it was going to help her. Trust me, it's a trigger. I can't help but feel this way. Seperation has never been my and Nora's thing.
"Ring, Ring, Ring" It was surgery calling up to room 803 to give me a progress report. They had gone in first, with a camera and to everyone's amazement found a big wad of food lodged in her esophagus right where they saw a stricture. They removed the food and would go over everything after surgery. Wow, I thought. Nora knew something, tried to tell me and I still had no clue.
That evening when surgery was over and Nora was placed back in my arms the surgeon and I talked. She said she didn't expect to find food, but because it wasn't wood or metal it wouldn't have shown on the esophagram anyway. I agreed. We were both surprised. The wad of food was the size of my thumb knuckle to the tip of my thumb. A piece of chicken didn't make it's way down completely and everything headed down afterwards just stuck to the first piece. They did widen the stricture to an appropriate diameter and we were both in agreeance that it was going to help relieve the eating issues. Speech would come in the morning to go over our new diet with a list of foods and tactics to help Nora and her chewing.
Nora and I made it home on day 3. It served as a 3 day reminder on how quickly things can go from "normal" to "unknown". I wept, you fought. I wondered, you proved. I prayed, you overcame. Nora, my warrior.