Heart of Beckett

UPDATE (10/27/18)

What a smooth day? I arrived this morning to see Beckett sitting in bed with something missing from his nose. No more cannula!!! I could hardly believe it. Somehow they were able to wean him completely off his oxygen throughout the night. So, today was just filled with a lot of playing, walking around, and a few breathing treatments. Needless to say I can probably keep this post short. Though I always hate saying things like this beforehand….it looks like we might be coming home tomorrow! 🙌 Yay! Beckett, however, really wanted to come home today….and, I don’t think was fully understanding the concept of what we were saying when he repeated to us, “‘I’m coming home tomorrow’ right now!” lol No, no….but soon bud…soon.

We are hoping for a discharge around midday, if possible. We are obviously eager to get home and close this chapter. So close. Thank you God for your provision and healing.

#GoBeckett

#ODAAT

UPDATE (10/26/18)

Today was a much better day (praise the Lord). We are certainly not the doctors, but I would say we agree and like their plan of action. In essence they want to wean Beckett off his oxygen support and make sure we have proper pain control. Yes, in short they want to clear up the pneumonia. I think we still have another few days in here…but we are hoping to be home by Sunday.

My mom was able to visit today and bring our youngest son, Milo. It was great to see him again…and equally as great when Beckett and Milo seemed excited to see each other. Now, more than ever, Beckett wants to go home…so, we have to try and navigate those conversations carefully.

We’ll just keep this post short. But we are truly grateful for Beckett’s progress. We are also thankful for a lot of “little things.” For example:

– Though we had much better plans in store for this week (as this week is Beckett’s Fall Break), but it’s nice that he isn’t missing school.

– In the same vein, Leah’s mom works in the same school district, so she’s been able to be around and very helpful this week.

– My Mom happened to already be in town this week (for the other fun plans we had), but she has been wonderful in helping us out and watching Milo these past few days.

– When we arrived back at Riley in the ER, Beckett’s actual cardiologist was “on” that evening (there are probably about 20 here), so it was nice to have someone present who knew Beckett so well.

– Even our friend who has done so many of Beckett’s echos was the one who walked into the room to do his echo in the ER. It was just very comforting to see her.

….so many things to be thankful for. We definitely have had some forward progress and are just trying to be patient with the process.

And as always, thanks for the support. The messages, likes, comments, texts, calls…are all very encouraging and kind. People keep asking how they can help. This is a challenging question to answer, and to be honest we’ve hardly taken anyone up on their offers. This doesn’t mean we don’t want or need help, we just don’t like to inconvenience anyone. We’re working on it, and appreciate the offers. Please be patient with us as we navigate that. And thank you for the many offers, perhaps one will land at the right time for us. For now, thanks for all the prayers and kind words for Beckett. It certainly puts life in perspective when you genuinely feel like you were just a few hours away from possibly losing a child. Oh, and thank you to our colleagues and my students….you have been so kind, encouraging and generous. We really appreciate it.

#GoBeckett

#ODAAT

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