by I almost didn’t share these photos…
We didn’t really say much to anyone because we were trying to process what was going on ourselves, but when we were in Iowa City, we weren’t sure that AJ was going to live to see 2 weeks old, nevermind 2 months. We had been told what was going on with his heart, we knew that he wasn’t doing very well and we knew that the University wasn’t comfortable with operating on him. They volunteered a second opinion and graciously started the process of looking for another facility that would consider operating for us despite the low odds while we simultaneously started to prepare for the fact that AJ could be gone any day. We looked into funeral homes and discussed his arrangements. We had castings made of his hand and foot, Averie did artwork of her handprints and his hand/footprints. We had AJ baptized. And finally, we had a photographer come in to take pictures of AJ in his outfit that he was meant to go home from the hospital in and pictures of him and Averie in their coordinating Big Sister/Little Brother shirts. Aaron and I were eventually convinced to be in a few of the pictures too…
I’m so very glad that this wasn’t the end of the journey for us and that CHOP took us on, but even more than that? I’m thankful that the UIHC staff didn’t just “try” something they weren’t comfortable with, that they were willing to deliver that news to us that nobody ever wants to tell a new parent, they were willing to do the leg work of finding CHOP for us, helped us cross every hurdle we needed to cross to get AJ well enough for transport, while simultaneously helping us prepare for the worst, just in case.
We’ll treasure these pictures forever, not just because they’re our first family pictures, but because they were the start of our journey and signify just how far we’ve come in a couple of months. Tomorrow marks 2 months from his first open heart surgery. We’re no longer talking about funerals but rather “what’s next” in terms of getting AJ home.
Sure it’s been a long journey, and there’s a lot left to overcome – he’s going to continue to need a lot of care, his first trach change is today, he’s still on a ventilator, we’re working on getting his IV lines all off (the meds are all going through his feeding tube, now it’s just a matter of taking them out!), he’s fed through a gtube in his stomach and has yet to try to take anything by mouth since he was whisked off to ICU for the first time. He still needs two more open heart surgeries, and potentially a transplant as he gets older… But still, in two months we’ve come so far… I’ll get a new picture and post a side-by-side in the next few days… but I wanted to share this before I changed my mind.
Thank you, so much to everyone for your love and support — emotionally, physically, financially… I truly don’t think we’d be where we are today without it. It’s been a rough 2.5 months, but everyone has helped in more ways than I could have ever imagined. And thank you, thank you, thank you to all of the medical teams that have worked with AJ and with us – always keeping things honest every step of the way and making sure we knew what the risks were and what’s next. <3
https://www.gofundme.com/m43qcu5k
PS – to my photographer friends, look into Cherished Portraits, as I know there are other families that could benefit from your amazing talents as well. https://www.uihealthcare.org/otherservices.aspx?id=231715
