Dearest Readers,
I apologize for the radio silence. Life got quite complicated, quite quickly. We have been in and out of the hospital with Jellybean since March--a few weeks here, a month there, soon you're talking about real time!
I have been updating at our fundraising page and on Facebook, and have failed to keep you in the loop. In an effort not to duplicate too much, you can find a few updates on Jellybean's feeding issues and hospitalizations at our GiveForward page. (And if you feel like donating, please do!)
Anywho, the last update there indicated that Jellybean had gotten a G-tube. We were home about a week from that stay when I received a call from Jellybean's heart surgeon that he wanted to do Jellybean's "full repair" sooner, rather than later, and we scheduled it for June 20. We had barely adjusted to the idea of surgery being a mere weeks away when, five days later, Jellybean had a crappy night. He vomited up an entire feed and became inconsolable--a very difficult thing to watch, particularly when he's such a happy guy all the time. A trip to the local ER, an ambulance ride, and back to Detroit we went. We arrived at CHM at about 6:30 a.m., and Jellybean had been screaming pretty much non-stop for almost 9 hours by that point. There was quite a flurry of activity upon arrival. I repeated my story more times than I can count to goodness knows how many people. One of the doctors with whom we had become familiar on Jellybean's first stay, Dr. K, was the one in charge, and Dr S, who did my fetal ultrasounds, performed Jellybean's echo to rule out a clot in the shunt.
I remember standing by the wall, watching everyone, and feeling comfortable because "our" docs were there. I heard a phone ring. Dr. K answered, and I heard him say, "We have a sick kid here." I kept waiting for everyone to rush off to take care of the sick kid. I saw Dr. K talk with a nurse, who then left, so I assumed she was off to take care of things. When his phone rang again, and he said again, "We've got a very sick child," I don't know what it was about how he said it, but it suddenly sunk in that Jellybean *was* the very sick kid. I was so used to taking him to the hospital, having them put him on oxygen, and just waiting, that I had no idea. Having been unable to get his oxygen saturations where they needed to be, they intubated him and discussed taking him to the cath lab to see what was going on. I signed paperwork and waited.
Suddenly, I noticed a large group of people down the hall, most of whom I recognized. Physicians, residents, nurse clinicians. There must have been 20 people or so gathered there. Realization dawned on me--it was a massive discussion between cardiology and cardiovascular surgery about what course of action to take Jellybean. I was floored. Just as quickly, I noticed Dr. W, Jellybean's surgeon, and Dr. T, who did both his angioplasty caths, walking swiftly down the hall towards me. Dr. W sat down next to me and indicated that he felt they should not do a cath, but should just move his repair surgery forward. Three days later, Jellybean had his shunt taken down and his heart "repaired." Surgery took all day, but when we saw him before they wheeled him up to the room, he was pink!!
It is now 20 days post-surgery. He's a tough, but fragile, little boy, wrapped in an adorable smiley package. He has had some ups and downs, but is improving overall. Phil and I have been living bifurcated lives as he mostly stays at home with Lil' Bit while I stay with Jellybean in Detroit (what with being the food source and all). We have experienced enormous amounts of support and unexpected moments of grace throughout all of this, and we are so grateful to everyone who has played a part in getting us through this.
Last weekend, I took a mini-vacation to get in some mommy/doodlebug time and attended a CHD symposium in Indianapolis. It was so amazing, and soon, I plan to write a whole separate blog post just about it. But, one of the things it reinforced for me is that I want to turn our experience into something more. I want to help advocate for those CHD kids yet to come, as well as those already here. I want to use my writing ability to communicate and transform my experiences into more than just a story; more than just another set of obstacles I have managed to overcome. I want it to be meaningful and useful. I want to use it as a catalyst for change. I haven't figured out exactly how, but am taking baby steps in that direction. I have started creating a website that will house this blog and, once up and running, will be the future solitary place for updates, as well as my platform for advocacy. I have also started trying to turn the blog posts, Facebook updates, and memories into a cohesive story that can someday become a book to guide and support others on their journey.
Having limited free time as it is, I will now have even less. So, please be patient with me, dear readers, if I am away more than I am here while I try to sort all of this out. I hope you'll stick with me. But, either way, thanks for having been here so far. It's meant the world knowing that I am having a conversation with you, even if it has been mostly one-sided. It has helped far more than you know.
