I feel as though every time I find the time to sit down and blog here, I start by commenting on how absurdly long it's been since my last post. And then I say that I'm going to blog more regularly starting... wait for it... NOW. And then... months pass. So, let's try this again.
I'm not sure it's realistic at this point to capture every detail of Adelaide's journey, as it's now been well over a year since she was transported to Childrens Memorial Hospital... and almost 15 months since her transplant, if you can believe that! BUT... I am still going to try to write out as much of her story as possible. Regardless of whoever may be out there still checking this blog (because let's face it - who wants to read a blog where the author never updates? Ahem...), I know that I will be happy if I can record her story at least for a personal momento. And to show Adelaide someday, too. :)
So last I wrote, we were all of three days into Adelaide's stay at CMH. We had just heard from her nurse that Adelaide had an infection in her bloodstream, likely due to the IV in her belly button. Her surgery, originally scheduled for 9/16/11, was going to have to be postponed.
Right before we heard about Adelaide's infection, Brian & I had decided to share news of Adelaide's heart defect and upcoming surgery on Facebook. While we had posted on our pages when she was born, and shared pictures, we hadn't said anything since we found out about her HLHS. We wanted to make sure we were able to personally tell family and our close friends first, so none of them would find out second-hand and/or online. So, I posted a status that read,
"Brian and I found out early Monday morning that our little Adelaide has a severe but operable heart defect. She is scheduled to have surgery on Friday. If you pray, please pray for our little girl. Either way, please keep our baby girl in your thoughts. We will provide updates when we're ready."
Yes, I went back on my timeline to get the exact status I posted... and yes, I just re-read all of the supportive and thoughtful comments people left, and it brought tears to my eyes (as it does every time I think about or re-read them). We are truly blessed to have such amazing, supportive, caring, and kind friends and family. One of my friends, Meghan, shared in a comment that she had another friend whose daughter had open heart surgery at 5 days old, and she offered to connect/introduce me to her. I gladly took her up on this offer. As it turns out, Meghan's friend is named Erin, and Erin's daughter Jane was also born with HLHS. Erin & I became Facebook friends and over the course of the next several days, we exchanged many messages. She was a lifesaver during a very difficult time! Jane, by the way, is post-Fontan (the third corrective surgery in the series for HLHS) and is doing very well. And, she's super cute. :)
Incidentally, my friend Jenn also had connected me with her friend - ALSO named Erin - a few days prior when we first heard of Adelaide's diagnosis. Jenn's Erin has a son named Jonas who was born with HLHS. Jonas is an amazing, adorable little rockstar of a toddler and though I have never met him or his mother in person, I cannot wait to do so someday!!!
Okay, so we went to the hospital Thursday of that week, spent time with and snuggled Adelaide, and talked to a multitude of doctors, fellows, nurses, and hospital staff. I think that Thursday was the first day we met Dr. Nguyen, or Winston as most people called him. Dr. Nguyen was one of our saving graces at CMH. Not only is he a fantastic cardiologist, but he has the best bedside manner of almost any doctor I've ever met. He is very soft-spoken, yet knowledgeable... honest, yet comforting at the same time. Any time we spoke with him throughout our stay at CMH, he would give us the straight-up story of how Adelaide was doing, make sure we understood what was going on, ask us questions, tell us to take care of ourselves. He was - and still is - amazing. When we met him for the first time, he spent some time reviewing Adelaide's condition with us and told us she looked pretty good aside from the mystery infection. He was hopeful that we would be able to schedule her surgery for early the next week.
Over the course of the next few days, we settled into what would soon become our routine at Childrens. Spend the day with Adelaide, talk with a handful of doctors and/or fellows throughout the day, get to know the NICU nurses. Catch a meal or two in the hospital cafeteria. Drive home to sleep at night. Wake up early to do it all over again. And for me, part of my routing was pumping every three hours. Since Adelaide wasn't eating as we waited for her surgery (she was being given IV nutrition), I was building up quite a nice stash of milk for her. (Side note: eventually it would get to the point that the nurses at CMH would tell me to start freezing my milk at home because my allotted space in the hospital freezer was full - as was the backup space they gave me for the overflow! This was a great problem to have.)
Honestly, the days leading up to Adelaide's surgery are all kind of a blur at this point. I don't know if they would be any clearer had I actually written this a year ago - they were just so full of information and stress that I don't remember many details. I do know that we spent a ton of time at the hospital and cuddled Adelaide the majority of the time we were there. We also kept in touch with our family and friends, mostly through Facebook, to provide updates on how Adelaide was doing and when her surgery would likely take place. And we felt a ton of support from our friends and family, who not only reached out to us to see how they could help or what they could do, but also shared our story with their friends, families, churches, coworkers... they spread the word about Adelaide's story far and wide, and ultimately there were SO many people praying for her, thinking good thoughts for her, and sharing her story. I truly believe that the tremendous amount of love spread for Adelaide is one of the reasons she (and we!) remained so strong through everything.
We found out early the next week that Adelaide's infection was on its way out and that she could likely have surgery on Wednesday, 9/21/11. Dr. Nguyen told us that we should plan on that date for surgery and if needed, we could move it; however, he felt confident that Adelaide was going to be in good shape to move forward with that date. We let our family and friends know and started getting ready for surgery day.
