Adventures with Ellie: One Year Later

A year ago today I sat in our room in CICU and anxiously awaited our meeting with the surgeon. I had my little notebook ready with my list of questions. I sat next to Ellie and gave her a little pep talk… the kid hadn’t been awake in nearly a day, but I was optimistic. She was going to come through this surgery in two days with flying colors and we were going to move on to step two and step three and we were going to go home and yadda, yadda. That was my plan and that’s what I was ready for. Dr. Morales walked in and sat across from me (have I ever mentioned that he only came in and shared good news with us once? Just once.) Today was not that day. Today was a day when he’d come in and talk to me and the very depths of my soul would pour out into a puddle on the floor in front of me and I would sit paralyzed in fear for what felt like an eternity… I'd stare down at my questions which were no longer relevant and then over at our daughter and fumble for my phone because I had to make an impossible call to my husband. A year ago today was the worst day of my life as a parent… hands down. It was the day when our surgeon walked into our hospital room and essentially told me that there was little hope for our baby girl. He said that she was remarkable and exceptional in the worst possible ways. That her little body was doing things that he’d never seen before… that “the likelihood of mortality is quite high, really”. Those were his words. Those were the words we had to process just a day and a half before her first major heart surgery. Ick. And I tried to find hope in the midst. I said, “Well, if this doesn’t work, she can have a transplant, right?”. No. If this didn’t work… she couldn’t have the next step in her single ventricle repair, and without that, she couldn’t have the second step. With the complications she was experiencing, she absolutely would not be eligible for a transplant, either. At this point, our sweet girl would have been left to live what little life she had left with the very broken heart she had. God had other plans, of course.

I called Brandon and gave him the news. My voice trembled through it all. He fell silent on the other end and then began to weep and I could hear how this news broke a part of him deep inside. To be honest with you all… that part is still very broken to this day. I called my mom, too… but I couldn’t talk beyond that. I spent the next day sobbing, listening to Matt Hammitt’s “All of Me” album, praying and crying out to God. That night, out of complete exhaustion and total desperation, I took to this blog. I wrote the “When being exceptional is a bad thing” post. Thanks to Team Ellie Bug, that post remains the most popular post on this blog. It was shared hundreds of times and there were thousands and thousands of hits to the blog in the 24 hours leading up to Ellie’s 1^st heart surgery on New Year’s Eve 2014.

When they wheeled Ellie off to the OR that morning, I wasn’t sure if we’d get to see our baby girl again. I was hopeful, of course. I told them to bring her back to me… but I was so very afraid.

When we arrived in B3 (the surgical waiting area in Cincinnati Children’s), the receptionist said that Dr. Morales had quoted our surgery at 600 minutes (ten hours), which meant that we’d be in the private waiting room. Let me explain that only the longest surgery of the day gets the private room. Our surgery was only supposed to be two to three hours. At first, I was totally confused. This was nice, because it meant that our family could all sit together and have some privacy… but later I realized that maybe our surgeon didn’t think Ellie was going to make if off of that operating table that day. I think he over-quoted her surgery (by a LOT) because he thought we’d need that private room that day. One of our best CICU buds, Jameson Locklear (Abby’s dad) popped into the room to wait with us. This was one of the nicest things anyone ever did for us while we were in the hospital. He’s been in this position with his Aberdeen. He knows what it’s like to wait for your child while they’re in surgery… he knew how serious Ellie’s condition was… and he stood in the gap for us that day. This is why these people mean so much to us!!

A few hours later, Dr. Morales came into that private room with a look on his face that I can only describe to you as shock. He was shocked! Ellie blew him away with how well she responded to surgery. That’s my girl! Heart surgeries are rated on a scale of 1 to 6. The PA band surgery she had on New Year’s Eve last year was a 4 on that scale. A heart transplant is a 5. What Ellie had done in Boston in May is a solid 6. What happened on New Year’s Eve last year was nothing short of a miracle for our family. Our little girl was incredibly sick… so sick that a world-class surgeon was pretty certain that she wasn’t going to make it off the table. She shocked the hell out of him. That’s how she rolls!

Can I tell you how thankful I am that December is almost over? I never like to wish time away… but the first 4 months of Ellie’s life were really hard months. As we lived those days, we had to mentally process and move forward. We had to take it in and go, go, go. This year, I was living with constant flashbacks of those memories. On Thanksgiving I remember thinking, “this is when we finally had a team from neuro in our room to diagnose storming” and on 12/3 it was “this was the day of her first heart cath/ MRI/ scoping procedures". December 12^th marked her first major surgeries when she went in for her g tube and her trach. Big stuff. The first four months were hard... but December 2014 was HUGE. December 2015 was so much fun. Ellie is a riot these days. She’s stubborn. She’s learning to try so many new foods. She’s playing with her brothers and she loves that they’re not so good at being gentle with her – you can see in her eyes that she so badly wants to wrestle with them. She spent Christmas at home (hallelujah!) and found out that wrapping paper is way more fun than presents. She gets to have family movie nights with us and is practicing standing in therapy. She’s learning to army crawl across the floor and when I had her in church this weekend (for the first time since October), she was so full of it. She’s beginning to act more like a toddler than a baby and I’m in love with this stage. She loves to make faces at herself in her mirror and bats her eyes to flirt.

I look at her now and I’m flooded with thankfulness. Thankfulness for never giving up hope. Thankfulness for all of you who have lifted her in prayer since day one. Thankfulness for the countless people who had helped medically, professionally, spiritually, financially, personally along our path. The days have been long at times – but 365 days later – gosh, what a difference a year makes. What a joyous place we're in now. This place still has its struggles… it still has hills and valleys, for sure… but how do you measure the progress made in one year?? Now I want to break out into song… “five hundred twenty five thousand six hundred minutes” (that’s from the musical, RENT, for those of you who don’t know). I’ll just leave that right there for ya.

Much love to you all. I hope you all had a wonderful Christmas. I hope you were able to spend time with the ones you love and hope you got to fill your bellies with something delightful. I hope you have a safe New Years. Nothing will ever compare to the celebration we had on New Year’s Eve of 2014… but we’ll be celebrating as a family and hope to have a safe and happy New Year’s Eve of 2015, all the same. Stay safe out there… and if you’re a fellow Ohioan, try to stay dry, too. Ick.

A close-up so you can admire her curl over her ear :) When she's tired, she sucks her thumb and twirls her hair... it's pretty much the cutest thing ever.