Wow! What a day! I suggest you buckle-up:
Our day began with some pretty unbelievable news. We were told that we may be going to the heart center today! No, that actually isn’t the “unbelievable news”, what was even more exciting was our PICU Intensivist sharing with us (after we kind of coerced him to) that it is not necessarily out of the question to possibly go H.O.M.E. by sometime next week!! Now, he would probably be fairly disappointed if he knew I posted this, because he didn’t necessarily “want to be quoted”, and we have certainly agreed to keep our expectations in check. But….WOW, amazing news, huh?!
Soo, moving on. We were then informed that the transfer paperwork to be moved to the heart center had officially been put in. BUT, they currently did not have any available rooms. They said that we were second on the waiting list, but will definitely be moved as soon as there is room. We then spoke with a Cardiologist Resident who said that the heart center is awfully full, so we shouldn’t necessarily expect to head up there today.
So then Leah’s mom came down again. We played with Beckett for a while, then Speech Therapy stopped by. Speech Therapy works with nearly “all-things-mouth” related. So, not only “speech”, but also “bottle feeding”. Now that Beckett is off of VapoTherm, we are allowed to try things like bottle feeding again. We haven’t tried bottle feeding since February (when we were really close to going home the first time). He did surprisingly well for pretty much not ever being bottle feed. He also got to try rice cereal for the first time! He does have a long way to go, but it’s still exciting to be at this point.
Doesn’t this just sound like some sort of fairy tale? I mean, what seemed like a “lost cause” NUMEROUS times is now concluding with what appears a glorious happy ending. Yes, we still have some upcoming challenges, and mountains to scale, but we’ll worry about those days when those days come.
We were also graced with the presence of a few of Beckett’s favorite nurses from St. V’s. Now, don’t bite my head off Riley nurses, I said “a few of”, and I pointed out “St. V’s”. 😉 Beckett truly does have a lot of fans, but when it came to his daily care, it was difficult for him to not steal your heart….and he won’t give it back. These few nurses (among many many others) have meant a lot to us, and even months after moving from St. V’s here to Riley, they STILL visit and follow Beckett’s journey. It’s amazing, they’re amazing! They actually got to be a part of something pretty special today too. Let me explain:
As we all (Leah, me, Leah’s Mom, and our 2 St. V friends) were hanging out in Beckett’s room (we are actually only allowed to have 2 people, including Leah or I, in his room at a time…..oops), our nurse peeked her head in our room and said, “We’re going up” (referring to the heart center)! It happened quite fast. Within minutes we were scooting Beckett and his crib out the door, over to the elevators, and to his new room on the heart center floor. What’s amazing about this, is that other than the one day we had after he was born (before he was diagnosed with HLHS), this is our first time ever NOT being in an intensive care unit! Wow! Now that’s a “graduation”. This is a big day for us, and all the more for Beckett! We are so proud of him. We are now one step closer to the H-word (…home…). In fact, this is the last step. We will now see just how much he impresses his cardiologists, and if he shows no signs of relapse, we will probably be served our discharge papers! Yikes! What to even do with a baby at home?! We’ve kind of been laughing about that as of late. But I’m sure everything will be fine, it’s just kind of intimidating taking a baby…OUR baby, with such a complicated history, home. But again, we will deal with that when it comes.
Thank you Jesus! You are the savior of my soul, and the healer of my son. May you receive glory yet again this day, and everyday. May we please never take a day or opportunity for granted!