Heart of Beckett

UPDATE (7/7/13)

Wow, another day if progress. Beckett was quite moody today, and we even received report that he was temperamental last night as well. But we’ve been thinking about it, and we think he may possibly be in a little pain still. I mean, he did just have open heart surgery….again. He’s off at lot of the pain meds they had him on, and some of his moans and groans just sound like he may be in a little pain. We even feel like he may be having a touch of withdrawals as well. At times, when you could get him to calm down, he’d kind of rock his head back-n-forth, and look through us. It’s kinda eerie.

Also, they took his right atrium line an chest tube out. It was kinda creepy (for me), as Leah and I were allowed to stay in the room when they did it. MOREOVER, we are now allowed to hold him again. So, Leah held Beckett for a while this afternoon…and I am just waiting my turn. I actually went out for a few hours today with some friends to a driving range. It was nice to get away for a little while…but honestly, I was eager to get back to Beckett.

I know I’m jumping all over the place with this update, but our day actually began with Leah’s Dad coming down and treating us to breakfast. Unfortunately, Beckett was kind of cranky the entire time he was here, but his company is always welcomed and comforting. We even had Leah’s grandma here again in addition to some of Leah’s relatives from California. They happened to be in Indiana an decided to stop by and see our infamous Beckett. Again, he wasn’t in the best mood, but it was still nice to see them.

Honestly, that’s about it. We are being told that we are still on track to leave the PICU here sometime this week and head to Riley’s Heart Center. This is certainly a promising step towards home, and can’t wait to continue to inch closer to that amazing day of saying goodbye to new friends and hello to the old.

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

UPDATE (7/6/13)

Wow, what a great day……again! I posted a picture earlier today that truly did not accurately capture Beckett’s amazing demeanor this morning. We couldn’t quite get him to flash us the typical BIG Beckett Smile, but he was playful and happy…it was so refreshing to see him so quickly regaining his baseline.

My parents left today for home. We were kinda laughing at the irony of the situation, that in less than a week they both feel comfortable enough to go home (reflective of Beckett’s condition and progress). It’s been great to have nearly all of both Leah and my family around this past week. Their love and support is so evident and greatly appreciated.

We had a few more visitors again today. We seem to have daily visitors from the Riley NICU here (Reminder: We are in Riley’s PICU now), which is so awesome! We love those guys! We also had a visitor from our old camp days. It’s great how “bad situations” like these can present great opportunities to reconnect with friends we haven’t seen in a while. Life gets busy, but true friendship will always surface at times of calamity/need….it’s beautiful.

So, as I was eluding to, Beckett is certainly more himself now. He definitely is not 100%, but he is definitely on his way. Now that his eyes are open, I believe he has initiated his “I can get anyone to fall in love with me within minutes” plan….which he has successfully mastered (just ask the Peyton Manning, St. V’s NICU and Riley’s NICU medical staff).

Oh, and here’s some crazy and exciting news. I’m sure you’ve heard if me referring to something called a VapoTherm throughout my updates. The reason you’ve heard we talk about it is because Beckett has been dependent upon the VapoTherm (or a nasty Ventilator) since FEBRUARY! Well, they took it away today!!! That’s crazy! Now, he still has a nasal cannula, because he currently still needs some oxygen support, but there is no step between his current cannula and no cannula, we just go to no cannula…that means, a naked face! We cannot wait to eventually get to that point. Beckett will look like a brand new baby. Who knows when that day will come (cause I guess we are being told that we can technically go home “on oxygen”), but we will certainly keep you posted!

Hang tight. Keep praying. Feel free to visit! Share Beckett’s story. And don’t stop allowing yourself to be challenged by not only Beckett’s journey, but find the purpose and value in your own story…and share it with others. I cannot believe we seem to be trending to the end of the beginning. God is soo good! One day at a time!!

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

UPDATE (7/5/13)

Another great day! Our Physician seemed so pleased this morning, I had to prime him for the seemingly inevitable positive response by asking, “Soooo, what do you think? In your opinion, how do you think he is doing?” His response was, “Well…I think he’s doing amazingly well!” These are clearly very comforting words to hear from our new PICU Physician (who just so happens to be the head of the Cardiac Intensivists here at Riley).

They keep making amazing changes. For example, his fentanyl (that horrible drug) is already turned off!! They might even turn his milrinone off by tomorrow! He really is doing well….and we are truly so proud. Just as if I would assume I’d be if he just hit a baseball off a tee in his first t-ball game. I can’t help but smile when I think about his progress. They also took his PICC line out. Soo, the big bracelet of cables that weighed down his left arm is now gone!! He’s such a lil champ, and I cannot wait to take him home (eventually).

I hope you’ve gotten the chance to see the video of Beckett’s Dedication. It was certainly an intimate moment for us, our family, and (as you may have seen) some of Beckett’s amazing nurses. However, as intimate as it was, the intent is to declare and dedicate Beckett to God for others to see; that he is outwardly given/committed back to our God, but also a public commitment to raising him in accordance to our faith, the truth of scripture, and to know and spread the Gospel news of Jesus. Beckett’s story is not a journey of chance, it is a story of hope and the experience of power beyond this earth. We pray and hope that if eyes and hearts are still closed to what we know as truth (and I don’t mean to sound dogmatic, just confident), that this story may either be a tool that illuminates the Gospel, or at least plants the seed and directs you along the path of righteousness. As said before, this is not “hocus-pocus”, and I’m not trying to offend, just share our story and the evidence of God through faith (“evidence” and “faith” may sound ironic, but the dichotomy is beautiful).

We actually received news today that we may surprisingly be less than a month away from going home. That is literally unbelievable news, but amazing none-the-less! We continue to ask for prayer that Beckett continues to heal and recover. He’s doing sooo good. Your prayers are so consistent. And the support of friends and family (even those of you who I know adamantly disagree with our beliefs and faith) have been sooo encouraging…it literally brings me to tears! Thank You. Thank You. Thank You!!

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

UPDATE (7/4/13)

Happy 4th of July everyone! Yet another holiday we are privileged to spend with our son celebrating our independence and those who fought/fight for our freedom.

We’ve been told that the fireworks here in Indy are pretty awesome. Sooo, the current plan (if Beckett allows) is to possibly escape for a few minutes to the roof of the parking garage here, in which we were told has a surprisingly good view of the fireworks. I’m looking forward to it as a time of reflection and celebration of life and freedom.

Sooo, here’s some fun news…Beckett opened his eyes! The last few nights we were able to stay in a room here at the hospital. Late last night, Leah went back up to Beckett’s room an returned with the news that he opened his eyes! That was exciting news. Then he did it again today. Then again. And again! It’s actually quite funny. I warned the PICU Physician that he has a terribly high tolerance to pain meds, and they are learning quickly that we were not exaggerating. One nurse wrote on Beckett’s board under a section titled “What you should know about me” — “I sure like my methadone.” Funny, but sad. I hate this phrase, but it’s sooo applicable…these pain meds truly are a “necessary evil”. Anyways, they are working on continuing to tweak his meds, and some meds have actually already been weaned off! That’s fantastic!

We were, however, informed that they almost reintubated Beckett last night. I guess he desatted as low as the 30s, but they decided to try to put him on a Bipap machine at first, then they switched him to a Cpap machine, and by the time we were in his room this morning he was only on the VapoTherm (but at a flow of 20!).

He’s doing relatively well, actually…but we still have a ways to go. I cannot believe its been more than 48 hours since his surgery! I am so proud of him and his progress. He’s such a strong boy. Though we continue to “hold our breath” here-n-there, we are beginning to receive a glimmer of hope that Beckett is trending the right direction. One step at a time.

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

UPDATE (7/3/13)

Sooo, as mentioned this morning…after a few “tweaks” last night, Beckett had an ok night. They decided to push him a little bit this afternoon, and, long-story-short, they EXTUBATED him this afternoon. Wow! Exciting, but very nerve-racking.

Well, as the evening progressed, Beckett began to struggle keeping his saturations where we need them. His blood gasses looked fine, but he just couldn’t seem to maintain his sats where they need to be. Sooo, they decided to do an X-Ray….and sure enough, his lungs were a little “wet” and on the verge of atelectasis. Sooo, the diarrhetics are on “full-throttle”. They will try to get the fluid off his lungs and hope this is what he needs to break through and bring his sats back to an acceptable level. Otherwise………we are talking about REintubating (please pray that we do not need to do that). However, they have tried to make it clear that it is NOT uncommon to have to REintubate after a first attempt on Extubation from this particular Glenn procedure. Sooo, we are trying to simply take deep breaths along with the medical staff here and take it an hour at a time.

Also, I’m working on a little project right now. I want to post for you all (if you are interested) a video of Beckett’s Dedication. I think I’m almost done with it…but I keep working on it a few minutes at a time….soooo, it may take me some time…but I’ll try to post something “soon”. Again, if y’all would appreciate to see it.

Thanks again everyone! We had over 3,200 hits on the website yesterday. The support is astounding! But as always, please hang in there with us. One day at a time.

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

UPDATE (7/3/13)

Soooo….this will be brief, but I feel that you all deserve some news.

Yes, Beckett had some “tweaking” last night (as I mentioned)…but after the dust finally settled from all that, we were explained that these tweaks were not necessarily a sign of poor cardiac function, but rather an expected event following a procedure like he just had. The doctors explained that after that particular event was resolved, he felt much better about Beckett’s evening/night, at which we were greeted with favorable news that all-n-all, Beckett had a good night. Praise the Lord!

Sooo, that’s about it for now. We will certainly try to post again later this evening, but thank you for your patience yesterday for me to get around to typing out an update. They (the docs and such) are making a lot of changes today, and are hoping to get Beckett off the ventilator as soon as possible, so stay tuned for the results of these aggressive moves. They said that he needs to be pushed a little right now….and though that may be true, many of us know (by now) how Beckett responds to being pushed. He better behave! 😉

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

UPDATE (7/2/13)

Where to begin?
I intend to keep this update brief yet informative…let’s see if I can actually pull that off.

Our day began by arriving at the hospital this morning at around 6:30am. We had a moment of prayer at around 7:00am, which was politely interrupted with the news that the O.R. was ready to receive Beckett. Sooo, the room cleared out, we kissed and loved on Beckett, and walked along with him to the Operating Room. Unfortunately, Beckett decided to say his “goodbyes” by screaming and crying. We then spoke with our surgeon, he explained to us his game plan, and we exited the room.

Beckett’s actual surgery was projected to be 2-3 hours long, with an hour before and after for prep and post. However, even though we sent him off at around 8:00am, he wasn’t done until around 4:00pm…and we didn’t get to see him again until around 5:00pm.

We spoke with the surgeon, and he said that everything went pretty smoothly…he just took his time. They did decide to do the Glenn (YAY!!!!!) rather than just a repair, which is fantastic news! He said that for right now he feels pretty good about everything…but tomorrow may be a different story. He said, “Ask me in the morning how I’m still feeling, and I’ll be able to give you a better answer.” There’s no real scientific measurement to this, but basically, every 12 hours that pass with Beckett “behaving” (key word) will help the confidence go up (obviously). But, basically, we will know how things are trending as the next few hours and days progress.

He seemed quite stable as we escorted family back to see him. However, even just a few minutes ago Leah and I were just in his room as his “numbers” began to “misbehave”. It wasn’t too scary at first, but let’s just say that eventually I had to leave his room to take a few deep breathes of air. You could just feel the room sloooowly escalating as nurses and the doctor began to speed up their pace a little. I didn’t enjoy it. But I certainly appreciated their care and attention. They later explained that incident as “moderate tweaking”. Here is where Leah and I are wired differently. She is now welded to to his bedside…whereas I am ready to try and call it a night, allowing the doctors and nurses to do what they do best. These little rollercoasters of “tweaking” make me nauseous…it’s like a 35 year old thinking they can ride fairground rides like they did as a kid…it’s not gonna happen.

Anyways, I’m not meaning to make light of the situation. I guess I’m just trying to judiciously explain the current severity of his condition.
– Surgery went well.
– Time will tell.
– “Tweaking” is inevitable.
– Weeping may stay for the night, but rejoicing comes in the morning. (Psalm 30:5)
We are sooooo thankful Beckett was able to do the Glenn operation. That was a genuine fear of mine. The fact that our “conservative” surgeon felt like he was ready was amazing…and a huge answer to prayer!

We were showered with support and prayer today. It was amazing. My phone blew up all day with Facebook notifications, website comments, texts and phone calls. We can only continue to say thank you…but ask for you to hang in there with us. We aren’t done yet…not at all. Please….please pray that Beckett has an uneventful night and we are greeted with encouraging news in the morning.

Goodnight everyone. And thanks again!

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

UPDATE (7/1/13)

Whelp, big day tomorrow. Can’t believe this day is finally here. I must preface tomorrow’s “Update” by forewarning you that it may be a pretty busy day, and we may not get to our “daily update” until fairly late…or…it may be brief. But remember, (typically) no news is good news.

Today has been a great day. Beckett hasn’t necessarily been in the best mood though (like he was yesterday). He had such a great demeanor nearly all day yesterday, but today was a different story. We actually had an awesome photographer here today that has been scheduled and canceled over-n-over since February. Sooo, she took some pictures and also documented some of the dedication.

Speaking of, the dedication was a real tear-jerker. I’m already a big sap, so even though I wrote our prayer, Leah pretty much read the entire thing. I slid in for a few sections, but then couldn’t compose myself enough to finish it. He gave the photographer maybe 10 minutes before he was adamantly done. But I think that wore him out enough that he slept the entire dedication. Once he finished he slowly woke up….sooo, we took a bunch more pictures of him with the family before he really figured out what was going on.

Sooo, here I sit…watching Leah hold and rock Beckett. This will be the last time to hold him for quite a while. It’s really starting to sink in for the both of us…….Beckett is having surgery again tomorrow. Wow. It’s natural to get that sick feeling in our stomachs, just not pleasant or welcomed. I’m looking at him right now, and he just opened his eyes, and he’s just looking at me. He has no idea what the next few weeks (or months) hold for him. But really, neither do we. We are just praying that he has continued to develop the will to fight….and clearly, God will be there fighting for him and us every step of the way.

I’ve decided I’ll post our prayer of dedication. It’s a prayer, a declaration, and reminder of where we’ve come from, where we are, and where we are going. Thank you all for your prayers. I truly don’t believe you’ll completely understand just how much we appreciate it.

—————-

Sovereign God,

We have verbally, emotionally, spiritually and physically given this gift, we’ve named Beckett Jude Rupp, back into your care. The irony is, Beckett has always been, and will always be, in your care. So, I guess this is more of an opportunity to publicly acknowledge your sovereign commitment to our son and our family.

To be brief, many would say that these past 6 months have been a disaster. I know that I’ve said it. However, we are learning that one’s personal perspective has great influence on how we define these seemingly subjective terms. If “disaster” is referring to events such as being woke in the middle of the night with news that our son needs immediate surgery on his heart or he will die, or sitting in a dimly lit hallway for hours while questioning if our son is even alive, or hearing that my son has dropped from a 70% survival rate to 40% overnight, or the news that the physicians need to shock my 3 week old son’s chest to calm his heart back down, or watch him desat to single digits numerous times within a few days, or even an emergency trip to another hospital with news that my son may never fully recovery and be ready for the next/required surgery on his heart………if these events are associated with disaster, then yes…these past few months have been a disaster. But here’s the rub…to every coin, there is another side. How about the perspective that my wife had a “smooth” pregnancy, or that we got an entire day with our son without all the tubes and chords, or that his condition was even caught, or the amazing nurses, doctors and surgeons who truly care deeply for our son, or that we have amazing friends and family (& strangers) bending over backwards to do all that they can to help “soften the blow” to that which we’ve been referring to as a “disaster”, or how about all the thousands of people impacted and challenged by our son’s life and journey, or one of the most important perspectives….my son is still alive!! We’ve both been privileged with celebrating mother’s and father’s day! We’ve been in enough hospitals to fully understand how blessed we are to say that. Our current story of “life” is not every parent’s story, unfortunately. And though I must declare that I trust God’s sovereign plan, no matter how much I may disagree with it at times, I am so blessed to be able to look over and see, kiss, and love on my son for another day.

So we declare and dedicate out of thankfulness and an edified soul Beckett Jude Rupp to The Lord. You, Lord, are why we are even gathered in this room (whether we fully understand that or not). You are sovereign, you are loving, you are gracious, and you’ve been so faithful to our family.

The name, Beckett, means “The one dwelling by the stream”. We choose to to assimilate this stream with the still waters referred to in Psalm 23.
The Lord is my shepherd;
I shall not want.
He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
Forever.

Beckett’s middle name, Jude, is a powerful name we dedicate to that of Jude 1:1, which states that Jude was a servant of Jesus Christ.

You are all here because this little boy has grabbed your heart. He’s certainly a fighter. But even stronger than he, is our Father. The one word Leah and I can both agree on that we have felt spoken to us is, “wait”. Psalm 46:10 says, “Be still, and know that I am God. I will be exalted among the nations. I will be exalted in the earth.” We have also clung to the words in Exodus 14:14
“The Lord will fight for you; you need only to be still.”

2 Corinthians 12:9 says,
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

Psalm 73:26
God is the strength of my heart and my portion forever.

Lord, our son is in your hands. We do ask that you continue to heal him. But, all the more applicable to this moment, we dedicate Beckett Jude Rupp to be trained up in the ways of your word. May others always hear, see, and experience you through the life of our son. Thank you for him, may we never take a day for granted.

To God be ALL the Glory,
Amen.

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.