Our (2) Million Dollar Baby

We headed toward Riley a little after 7a yesterday morning. Unsure how we might intersect morning commuters, we did *not* want to be late for our appointment! Luckily it was an uneventful drive and Little Miss slept the entire way.

The drive to Indy allowed for plenty of time to think, and overthink. A flurry of emotions. Excited and thankful that *this* day had come, but nervous, anxious, unsure of how the day would play out, fearful for still so many unknowns including each day following this one. Our prayers were specific for the day and we very much felt the prayer of others helping to calm our nerves and offer prayers of protection over our girl.

After making it through security we made a pit stop in the lobby to collect ourselves, and put everything back together. It's not quite as intense as airport security, but you still end up a little disheveled afterward. Hayden needed a snack so we found some empty chairs in the corner that happened to be near the lady playing the baby grand piano. I can't say that hearing Hush Little Baby has ever brought me to tears, but yesterday it did. I can't imagine why.

Even just being in that space is a humbling experience, so many very sick kiddos. But I think yesterday it registered a little more clearly for us that we're one of *those* families now. We have a sick little one. And while there are so many littles within that building that won't ever see the outside, and we are beyond grateful that we were able to walk out of there with our girl last night, we are all united by this place, and the experiences that have brought us here.

We started our day in the Infusion Clinic. They were prepped and ready for us and we were just as ready to get the show on the road. After two nurses from infusion each unsuccessfully attempted to start an IV they called two nurses from the NICU. After four more attempts we still did not have an IV. I was holding it together pretty well until they attempted to place an IV on the side of her little head. Watching your 3 week old baby be stuck repeatedly is pretty unbearable. But she was the bravest little thing.

From there the group of doctors and nurses started to talk to us about our "options". A PICC line was what we needed (slightly more invasive than an IV, but with how this is placed, it's a "for sure thing", and there would be no concerns of her veins blowing which was the issue we were having.) The problem became who could do the PICC line procedure and when did they have time in their schedule. Since the gene therapy is supposed to be an outpatient procedure and the insurance guidelines are strictly written as so, we were limited to one doctor in Radiology who could insert the PICC because the other qualified resources were only allowed to provide care like this for inpatient procedures. The chances of her catching something would be greatly intensified if she was admitted, so we really didn't want to go that route.

They started talking to us about getting us a hotel room and coming back tomorrow, it was going to work out better from a planning and scheduling standpoint. (insert Mother Bear ... oh hell no, she's getting this TODAY. We have fought so hard and been praying for this day for the past 19... and in case you haven't heard, EVERY DAY MATTERS so it's happening TODAY, nothing less is acceptable.) We politely declined the hotel offer and started asking for other options, options that got her treated today. The sole doctor that could insert the PICC with her as an outpatient agreed to "try" and fit her in to his day. The PICC had to be completed by 3p in order for us to have treatment same day. We needed an hour for the infusion and 3 hours for observation and the Infusion Clinic closed at 7p. Our prayers intensified.

God agreed that it was Hayden's big day. She was wiggled into the schedule for the PICC line. We put her in the tiniest little hospital gown and she was whisked away to another room (that was sterile and where we couldn't be) for this procedure.

We made it back to infusion with minutes to spare and her infusion began just minutes before 3p. Hallelujah! God is good. The infusion went off without a hitch, and observation was smooth sailing. We are so relieved to have this day behind us.

While there is still so much uncertainty about what things may look like in the future, we are confident that she has received the best possible treatment, at the best possible time. For that we are certain.

Hayden will remain tucked away until we are off steroids, somewhere around 45-60 days. From there we are hopeful that life will return to some state of normal, just in time for mom to go back to work ;)

Love you all and appreciate the outpouring of support and encouragement. We are forever grateful.

Love,

Hugh, Logan, Avery & Hayden

#hereforhayden