May 20, 2012 :: Bruce Jackson turned One Year Old. Wow. I put a lot of energy and time into making it a special day for him because he truly deserves it (even though he won't remember it) and a HUGE THANK YOU to everyone who helped celebrate at one of his three parties....he is loved :)
Bruce was born on a Friday afternoon - he was one of a few or four scheduled c-sections that day. I was 38 weeks and had been having some issues with my placenta which resulted in a lot of non-stress tests at CRMC. Which resulted in hanging out with all the awesome nurses there and getting to know them. Finally, the doctor gave in and we were on the books. At 1:38 pm, we welcomed our son into the world. At 6 lbs and 6 oz, I was pretty sure he wasn't our kid - or done baking yet but he checked out as healthy as can be. A couple hours later when I got to hold him for the first time, it was like my life finally had purpose. I gave thanks over and over in my mind to be able to enjoy that moment and wanted it to last forever.
Much to the CRMC staff's dismay, we took up residence over the weekend. With the storms coming through and my spinal headache, I wasn't ready to leave yet whether it be new momma's nerves or just a gut feeling. I think higher powers in the end had a play. After a couple epidural shots and a lot of caffeine later, I was ready to take our boy home Monday morning. I hung out in the nursery for a while late Sunday night still on edge from the Joplin tornado and bright-eyed and bushy-tailed from a 2 liter of Coke. The nurse and I took note of Bruce's legs swelling around 1 am or so and she put me back to bed, assuring me she would wake us up if something happened but it was probably fine. A few hours later, she did just that. Things weren't fine.
John and I packed the room up like gypsies when she said there was a chance he would be transferred to Children's Mercy. I finally felt better to move and didn't feel like my head was going to explode but I remember the night nurses keeping a steady dose of painkillers in me being just a few days after surgery. Angels. The pediatrician came in her pjs and I knew it wasn't good. We met her earlier that weekend and she was very professional - I was excited to have met her. Then to see her in her flannel pants and hair in a ponytail at 5 am, I couldn't help to think, Shit.
The flight crew from Children's was on call because of the tornado and made good time getting to Cameron. It didn't take much looking of the chest x-ray to know something wasn't right, even though they assured us it was probably just the computer screen. Right. After the crew in the jumpsuits started a routine iv, little man was ready for his debut helicopter ride. Some kids get to ride in a car for the first time but mine got a steel bird. John and I watched from the parking lot as they took off and we were right behind. I called parents from the road, yelled at John for getting lost, and managed to stay relatively calm. Even though I yelled.
We took the last bed space in the NICU and it was clear to see the staff wasn't thrilled. No one really knew why he was here and what tests to do first. For a while that day, a midst shuffling family in and out to see him and semi-abiding by the sign-in book Nazi's ridiculous rules, we were at a stand-still. I was nursing Bruce that afternoon when the first clue came and it was a doozy - his heart rate jumped over 300 bpm and I witnessed the nurse actually tapping the monitor like in movies, then realizing what was happening. A famous CMH/KU doctor happened to be rounding and was the one who stopped it. A lifetime of gratitude to that man.
Immediately an EKG and an Echo was ordered and I will never forget the cardiologist who took all of 6 seconds to see the monitor over the tech's shoulder before he walked away. Later that night, we sat in a conference room across a table from him and about 10 other doctors, nurses, social workers, and I'm pretty sure the chaplain was there, while he drew on a piece of paper what was wrong with our son's heart. And it wasn't good. After they left the room with more than enough apologies and promises they would do their best to figure it out what was causing it, I had a breakdown where I'm pretty sure I cried tears out of my nose.
This is the point a year later where I am having a breakdown. To go from the greatest day of one's life to the absolute worst news you have ever heard just a matter of hours later, was more than overwhelming. Up to that point, I was able to find some humor in Bruce flying in a chopper and his village of people taking turns pissing the desk lady off - as long as he was ok. And healthy. And up until that point, I was living in my own happy little oblivion.
The story goes, if you have been reading at all any this last year, that we did find the culprit and treatment was started immediately, at day 13. The longest 10 days of my life to be patient while they poked and prodded and asked us questions about everyone in our families, minus the first settlers. His heart corrected itself within two months of life and is now NORMAL. Take that Dr. Bad News. I actually saw him at CMH a couple weeks ago and kept my eyes to the floor - it wasn't his fault he had to deliver the news but I will forever associate him with that horrible day. Just a part of it. I still nearly hyperventilated when I turned the corner.
It has been tough to watch the news the last few days because everywhere you turn, it's about the Joplin tornado. Later that night after our conference and we had shared the news with family, the hospital gave us a room at the Ronald McDonald house within the hospital. I shared the twin bed with John and we smuggled my sister in, who occupied the floor. The rooms aren't meant for long term stays or for anyone over 4'6" but handy to have when you can't leave/aren't willing to exit the same building until forced out of the hospital yet. I was being a pain in the ass and not keeping up on pain meds and refusing wheel chairs when anyone looked at me so obviously, sleep was terrible. But I did manage to get a little bit and when we woke up that next morning, through the paper thin walls, I could hear a dad talking on the cell phone with a Southern Missouri accent. I cursed him a bit for waking me up out of my horrible sleep to my horrible realization I was a parent of a child in Children's Mercy but immediately started praying for him and his family when I heard what he was doing - he was making funeral arrangements for one child back home in Joplin while he and his wife were up in Kansas City with another. I never saw him or heard what had happened in the end and maybe it was just God telling me that it was all going to be ok because there were worse things happening that day, I don't know. But that was the point when something clicked in my mind that my whole life was about to change.
You think having a baby himself would have been enough to change my viewpoint on the world but that day was the beginning for me. Now I have a little man who has showed me a whole new world and brought me closer to God....and good Lord willing and the creeks don't rise, I will do everything in my power to keep him happy and healthy.
