This morning Lily had her second gap study. It was scheduled for 8:50am and when I hadn't seen or heard from a Doctor by 9am I started getting nervous. Thankfully they were just running a little behind from a procedure before Lil's. He apologized for the on-again/off-again schedule we had for it. He said he really had to fight to get it done today. So thank you, Dr. Eliot!! The procedure went well, and they were able to extubate her right away after the procedure which was good. The Doctor said that they measured the gap at 3.5cm which is about 1/2 cm shorter gap than last time. It wasn't "great" news, but it is closer than it was so it's still good news. To be honest, the cynic part of my brain says "is he just making this up to make us feel better? How can they even really tell if it's 3.5 or 4 CENTIMETERS?!". He said that they will (hopefully) measure again around the end of the month. If it is closer then, we will continue on this path and keep measuring. However, if it's not closer, then we have to start seriously considering transporting her to Boston. I guess if at this point a month goes by and there's not notable growth then it's not worthwhile to wait longer. I have no idea how that would go if it comes to that... The planner part of me wants to plot it out and know what the next steps are, what the goals and expectations are. But the scared-to-death part of me doesn't want to think about it at all. Our social worker, Tessa, stopped by to talk to me for a little while while I was up there. She was prodding a little, asking how we're handling this all and how we're doing. How we feel about it and all that. I just told her, well yeah it sucks. It's hard, it's stressful, and I'd really prefer to not be going through it. Especially with this out-of-left-field pandemic insanity thrown into the mix now. But we keep pressing on, because really, what other choice do we have?
Thanks for all your prayers, kind words, and support. It may not seem like much, but it does help and it is appreciated.
-JC
Oh Joe, you're right, it really really sucks. My heart aches for you guys. I totally get the planner trying to kick in, maybe have some sense of control in this crazy situation--with the competing desire to wait and not think about the hard and scary steps that entails.
ReplyDeleteYou're being such an awesome Daddy right now, I'm so glad those precious angels have you watching over them. I'll be praying Lil has a sudden growth spurt this month--she's definitely a lil fighter!
P.S. missed seeing your face on Easter!! I hope you could enjoy some of the holiday amidst all the other crap going on. ❤️
ReplyDeleteThanks Christine :)
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