Heart of Beckett

UPDATE (10/23/18)

For those of you still following along, we are at it again. We just checked in this morning at Riley Children’s Hospital for another minor surgery. This time it’s to surgically close up his g-tube site. You may recall back in July we were given permission to take his feeding tube (g-tube) out. Though often these sites close up on their own, Beckett’s g-tube might have been in for so long that the scaring won’t allow it to close up without an actual procedure.

So, here we are again waiting for the doctors to take our little bub back for another operation. On our drive down last night I looked over at Leah and said, “Sooo, this is it…right? No more after this.” In which she laughed and said, “Yeah, we keep saying that…” So, we think “this is it” for a while. We think. This is a significant last step to close the chapter….but really, is the chapter ever really closed? His journey is always on our mind because we live it every day. There were very dark days we never want to go through again, but we are still grateful for the journey. We’ve gotten to see our son be so brave, we’ve come to value his life more than we thought possible and love deeper than we knew we could love. I’d say that Beckett has even deepened our love for Milo. If you’ve gotten to know him and his heart (literally and figuratively), you’ve see just how big his 1/2 heart is. He’s such a kind, social and funny little boy. What a true blessing he is.

Sooo, in the midst of typing this they actually came back to take him in for the surgery. It’ll take about an hour and a half and it’ll be done. Thank you all who have followed us this far. It’s both encouraging and humbling.

#GoBeckett

#ODAAT

UPDATE (8/13/18)

And just like that, Beckett started Kindergarten. I’m writing this post because of that, but also because we’ve been meaning to update you all about something for weeks now.

Other than Beckett’s last procedure he had this summer (the Cath), his final big step was/is removing something from him he has had since he was about 3 months old. Since Beckett missed the critical stage of learning how to eat, he needed to rely on food that would simply pump straight into his stomach. This was one of the many machines he had to carry around (probably the most predominant one). If you recall Beckett playing in public with a tiny little black backpack on, that was his g-tube pump. I remember very clearly being told in the hospital that getting to the point where he no longer needs that will take a long time and a lot of patience (and it sure has).

Well, a few weeks ago we received the “green light” to take it out….ourselves. We were told that it could close up within a few days, and, to be honest it began to look like it was. Unfortunately we are battling a little bit of consistent leakage. So, at some point we may have to take him in so they can close it completely. However, this post is supposed to be good news. Soooo, “It’s out!!!” That’s a big deal! His therapist (we drove to see in Fort Wayne weekly for years) did a fantastic job with him and certainly became a part of our family. Thank you, K!

With all that said, we are hoping and praying that it closes soon and that he does a great job “catching up” a little in Kindergarten this year. He’s a bright and curious boy, and we think he has another great teacher to help take him along his personal journey of learning.

As always, thanks for the consistent prayer and support. We still feel all the love.

#GoBeckett

#ODAAT

UPDATE (6/21/18)

Whelp, it’s done. I’m sitting here next to him right now and though he’s finally awake, he is a little loopy.

Surprise, they decided not to close the fenestration. However, after “getting in there” they discovered that in closing the fenestration Beckett’s heart function (/cardiac output) decreased up to 60%. Furthermore, they did find a few collaterals that they decided to coil. Blocking these collaterals did help increase his overall oxygen saturation levels by a few points (we’ll take what we can get).

Sooooo…..unfortunately the closing of this fenestration may still happen in the future, but not anytime soon. We still feel as if this was a huge milestone and are very pleased to have it behind us. Oh, also, they may even discharge us as early as today.

Thanks again for all the prayer and support!

#GoBeckett

#ODAAT

UPDATE (6/20/18)

It’s time….time to close the chapter (in a sense) to this long journey. Tomorrow (6/21/18), Beckett has his last (we hope and anticipate) procedure. This past December we wrote a post (sorry it’s been so long again) explaining how well Beckett is doing. However, we also explained that Beckett is still satting low. His low sats are due to a fenestration that hasn’t naturally closed after his last open heart surgery (Fall ‘16). This is something our Cardiologist has kept a close eye on. With that said, it’s now time to close the chapter.

Tomorrow morning at 11:30am Beckett will have another cardiac-cath at Riley Children’s Hospital. He’s had many of these, but this one is about as close to a “book-end” as it gets on Beckett’s LONG journey to correct his heart condition (HLHS). We are anticipating this to go very smoothly, but it’s hard not to think about things going wrong during the cath. Beckett doesn’t really understand what’s happening tomorrow other than if you’d ask him he’d say, “We are going to the doctors to fix my heart.” (it’s quite endearing) We are being told to plan on spending the night with him, but are hoping to be discharged to go home the following day (Friday).

So, may we now say, “Thank you!” Thank you for the hundreds, perhaps thousands who have followed this journey since December 28, 2012. It sure was rough at the beginning and has been the definition of a marathon since, but you all have been so incredibly considerate and encouraging. We are so grateful. Our journey with God throughout all this has been strengthening and edifying. It is safe to say we aren’t the same people, spouses, family or friends we were five years ago. Our faith has been stretched. Our marriage has been challenged. Our family has grown. We are so grateful for this journey, and are equally excited to put it in our rear view mirror as a memory of what was. We have scars (literal and figuratively) to remind us of the past, but they are now a reminder, a story rather, of faithfulness, tears, miracles, sleeplessness, joy and laughter of an incredible little boy named Beckett Jude Rupp. If you haven’t had the chance to meet him yet, he’s quite the joy. He has such a vibrant imagination, he witty, he’s loving, and occasionally a stinker! 😉

So I’ll end with Luke 1:46-49:

“…My soul glorifies the Lord

and my spirit rejoices in God my Savior,

for he has been mindful

of the humble state of his servant.

From now on all generations will call me blessed,

for the Mighty One has done great things for me—

holy is his name.”

One Day At A Time. We’ll keep you all posted on how tomorrow goes. And again, thank you (those who are reading these still), and thank you to all those who started this journey with us. We are almost done.

#GoBeckett

#ODAAT