Category Archives: Jonny

June 29, 2013

UPDATE (6/29/13)

Beckett had another great day. Yeah, he did minor things like reflux and such….but I cannot tell you just how thankful I am with the uneventful nature of these past few weeks!

We had some great visitors today. One of Beckett’s old Neo Physicians from St. V’s visited again. I think she’s visited us at least 2 or 3 times already…it’s so great! We have such a caring following from St. V’s NICU and the Peyton Manning PICU. Also, the wife/mom of the amazing family who lets us stay in their home visited again today. They are truly amazing! I know they read this blog, so I want to point out to them our gratitude and publicly acknowledge to all you reading these posts just how great that family has been to us. They have the house we are staying in cleaned ever few weeks, they grocery shop for us ever-so-often, they place fresh flowers in the house every few weeks just to freshen the place up, and (I hope they don’t mind me posting this, but) they’ve also supported us financially through this journey. Amazing. Leah and I only hope and pray to someday be given the opportunity to reflect this faithful and giving spirit that they have so diligently displayed to us.

Soooo many of you have blown us away with your generosity…and we cannot thank you enough!!! May it be returned to you 100 fold.

That’s about it. Be sure to check out the pics I posted…Beckett was being so cute! Leah was at work today, but is taking tomorrow off and will be back with us boys then. It just feels “right” when she is here with us. “Thanks for all you’ve done for us and our family, babe. You are an amazing woman!”

#GoBeckett
#ODAAT

β€” with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

June 29, 2013

It’s hard to not get sucked in.Β #ThoseEyes!

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June 29, 2013

…lovin’

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June 29, 2013

Beau (the horse), Leah and Myself on a little date the other night. Good times!

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June 28, 2013

UPDATE (6/28/13)

Happy 6 Month Birthday Baby Beckett!! We’ve said it before, and we’ll say it again, “This has been the fastest and slowest time (6 months now) of our lives!” We are so blessed to have been afforded these past 6 amazing months. Yes, it’s been (by far) the most challenging, exhausting and frustrating time…but truly the most exhilarating, rewarding, and edifying time in both Leah’s and my life. And on top of all that, we are truly blessed with the cutest, smartest, and bravest son a mother and father could ask for. Beckett has taught us so much…..and it’s only been 6 months; imagine what a lifetime will bring!

This morning began with a phone call from a (317) number….that’s always scary. Usually that is the hospital calling with “news”, and it’s rarely news that is desired. However, it was actually our surgeon, Dr. Brown, calling us on his way to the airport. Apparently he is going to be “out-of-town” this weekend and won’t be returning until late Monday evening. He said that he unfortunately won’t be able to meet us until right before the surgery on Tuesday morning, so he decided to call us to at least introduce himself (over the phone), and explain to us his current gameplan. We are actually a little confused with the information he gave, but this what how I interpreted what he said. He mentioned that they (ALL the Cardiologists and ALL 3 Surgeons) discussed Beckett once again this morning and have decided to go ahead and proceed with the “Hemi-Fontan” surgery (that was a bit of a shocker). Then he went on to explain (what he didn’t know that we already knew), that they really are going to be doing what’s called a “Glenn” operation rather than the “Hemi-Fontan”. The shocker (as prefaced earlier) was the statement that (again, it sounded like he said) they would like to just do the Glenn operation first, take him off the heart/lung machine (which they hook him up to during the operation), then check his pressures, and see how he handles it. If he cannot “do it” or “handle it”, they will THEN commence “Plan B” and replace the shunt (this time with a bigger one) and even fix a few of the things they want to fix. Clearly, we are hoping and praying that he will be able to do it. We truly are hopeful. As one friend put it, “Preparing for the worst, Praying for the best.”

Side-Note, after that phone call with Dr. Brown, I couldn’t help but see if this was his actual cell-number. So I saved it as a contact, clicked the number to “send him a message”, and observed that the word “Message” at the top switch from “Message” to “iMessage”. πŸ˜‰ Dr. Brown has an iPhone! Ha. Now, if we ever have a question…….I have his number! πŸ™‚ Just kidding, just kidding…..but not really. (hope he’s not reading our blog yet)

On another note: Beckett is awesome! If you didn’t already know that, you must not have been reading our blog for very long. πŸ˜‰ Beckett is now making new noises with his mouth, which is so fun. You can tell he really likes to do it, as if he’s just trying to show off. He can also remove the pacifier from his mouth and successfully place it back in. He’s also done a few impressive “saves” as the paci was falling out. He’s been close to doing this for weeks now, but I haven’t felt like I could state this as a legitimate skill until now. This boy is talented!

Oh, and again….for those of you who’ve been following for a while, you may remember that I was able to (somehow) finish this past semester of grad school. The one exception is that I needed to finish an internship this summer, and until that was done and accomplished, my grade for the class that held this requirement was posted as an “Incomplete”. Well, I can officially state that my grade is posted, it no longer reads “INC”, it has now been changed to an “A”…..and I have NOW officially finished this past semester! This has been a huge accomplishment for me. And I think, I think, I actually somehow did better this past semester than last Fall. #irony Sooo, a big thank you for all of you praying for that. That certainly made everything a bit more challenging, but I’m certain I am a better man because of it.

Lastly. Leah and I have always discussed how all of “this” has had to of happened for a reason. Though there are many positive (and truly amazing) things that have come from this journey, one specific area we’ve hoped to help is to encourage those who are struggling with this exact heart defect (with their child) as well. Well, today that has happened once again. We’ve had other families already reach out who are about to embark upon a similar journey (in which we are flattered and humbled). And we’ve found this opportunity as a great responsibility. We have decided to be honest, but hopeful when speaking about all that has happened in our lives. Well, as I was trying to state earlier, we met another couple today who’s daughter has HLHS and are getting ready to send their daughter into surgery for the first operation of this process. We wanted to be encouraging, but have found it difficult to answer the question, “How did your son do with the first surgery?” After being asked that, I still can’t help but take a deep and dramatic swallow as I think the words, “It was a disaster!”. Surely these are not the words these parents are wanting to hear. But the truth is, Beckett is 6 months old today, and the answer is, “Well, we’ve certainly hit some bumps along the way, but our son is still with us, and we are getting ready to do his next surgery (potentially) in less than a week”. We tell them that this may be difficult, it may go smoothly….it’s hard to say. BUT, the reality is that you don’t know how hard, or how easy it might be….just put one foot in front of the other, take it a step at a time, a moment at a time, soak up the time you get, and love as hard as you can comprehend how. Funny enough, this “advice” is applicable cross-platform. Whatever your circumstances, whatever your situation, live in that moment, hurt in that moment, be refined in it, love in it, it’s ok to cry, it’s certainly ok to smile and laugh…be present. Love, and allow yourself to be loved. I feel like a long-haired hippie at Woodstock (I mean no offense) and am just throwing up both hands with my fingers in the shape of a V mumbling “peace, peace”. But it’s true. Love hard, and live hard. Embrace God’s love and grace. And if you don’t believe in a “god”, look harder, my God is there….and he loves you and wants nothing more than to reveal himself to you. Open your eyes, breathe Him in. Give it a shot, what do you have to lose? If you find grace, you’ve finally found life.

#GoBeckett
#ODAAT

β€” with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

June 28, 2013

Happy 6 Month Birthday Beckett!! We LOVE You!

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June 27, 2013

UPDATE (6/27/13)

Whelp, last night was a success! You may have seen (from the picture I posted), I surprised Leah with a Carriage Ride in downtown Indy last night. She was awfully resistant at first (to the “surprise”, not the actual Carriage Ride), but eventually realized that I wasn’t gonna take no for an answer. I’ve been wanting to do something special for Leah for a while now, but I don’t share this to show just how awesome of a husband I am. In fact, the Carriage Ride wasn’t even my idea. I was brainstorming the other weekend with one of Beckett’s nurses while Leah was at work of a potential idea for something I could do for/with Leah before Beckett’s surgery. I know Leah well enough that she would not leave with me for quite some time after Beckett’s surgery for something like a Carriage Ride. Sooo, it had to happen now….and I think we are both glad we did it. Someone (among the many of you extremely generous friends) sent us $100 and encouraged us to use it however we pleased. Well, I chose to use it for a night out with my wife on a lil Carriage Ride, some South Bend Chocolate Factory treats, and a low-key movie night back at the house we’ve been staying at. You all are so very generous and thoughtful, being so intentional in even looking out for Leah and I along this journey…we will truly never be able to adequately express our gratitude.

Beckett has had another good day today. He did start doing the P.A.C.s thing with his heart again. But we are beginning to learn that the Neos and Cardiologists don’t seem overly concerned…..so we are trying to do the same.

We had some great visitors once again today. Some friends of Taylor University, and even a couple from our NICU days back at St. Vincent’s. As you’ve heard me say it before, we do love visitors, and Beckett does as well. For the most part, he behaved really well. He had a few “meltdowns” here-n-there, but he also flashed a few great smiles. He’s such a little charmer!

Leah actually ran out today and got her hair cut, did a little shopping, and just spent some good time with her Mom and sister. While shopping, she was specifically looking for a new outfit for Beckett. We’ve decided to have a mini-dedication service for him on July 1st, where we simply display our gratitude for Beckett and his life, commit to raising him to know and love God, and outwardly express our willingness to place him back in our God’s sovereign hands. My brother-in-law is who married Leah and I, and so fittingly, we’ve decided to ask if he’d do this with/for us. We’ve even gotten the hospital to allow us to “fill” Beckett’s room with family for the brief moment…..and we are just very excited about this opportunity! One thing I must make clear (and not that anyone may be thinking this), but I would assume if you’ve been following our blog for a while now that you have observed a authentic commitment to our faith. This has never been “hocus-pocus” to us. This is what we know, have experienced and are inspired to share. Soooo, to clarify, this dedication is not being done the day before Beckett’s surgery as a symbolic measure that may hopefully save his life. We are choosing this day as a day to commemorate Beckett’s amazing life and journey, and verbally commit my son’s life and upbringing to the Lord. God is in control, we are not. May God always be glorified in our family, especially through the life of our amazing son, Beckett.

#GoBeckett
#ODAAT

β€” withΒ Leah ‘Whiteley’ RuppΒ atΒ Riley Hospital for Children at IU Health.

June 26, 2013

Out on a Carriage Ride in downtown Indy with Beau (the horse) and my lovely wife! Much needed time together.

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June 26, 2013

UPDATE (6/26/13)

We had a great opportunity this morning to ask a bunch of questions to one of the cardiologists. It was very helpful and informative. We are clearly still nervous about heading into surgery, but the cardiologist affirmed that he would be concerned about us if we weren’t at least a little nervous. It was actually quite touching, as we talked through the surgery and our questions with the cardiologist, at one point he started tearing up. These are the outward signs that many perceive to portray “weakness” (in which I clearly disagree, because), it was extremely comforting, and just a glimpse of how much some of the people here at Riley care about us and our son.

I hope you all got the chance to see the picture I posted of Beckett’s mohawk. We think it was sooo cute. Apparently he still had it this morning when the day-shift nurse arrived, and she just loved it as well!

If you remember months and months ago us posting about a family we met during our stay at Peyton Manning, well, they need your prayers once again. His name is Henry, he’s 4 years old and has leukemia. He’s had a bumpy road (like Beckett), but he’s certainly a fighter (like Beckett ;-)). He and Beckett actually came off of Ecmo the same day back in January. He is actually (currently) cancer free, and has even been discharged to home a few days ago. Unfortunately they have found themselves back in the emergency room once again and are requesting prayers…once again. I don’t know very many details, but he’s apparently come down with a temp and is having a few issues in/around his throat (he still has a trach…which is/was scheduled to possibly come out soon). Sooo, please continue/begin lifting this family up in your prayers. They are an awesome family, and definitely need the prayers right now!

Lastly, I’m posting this update right now because we gotta “call it a night” early. I have a surprise planned for Leah (which, she hates surprises), and we gotta get going. πŸ˜‰ I’ll possibly post more either later tonight and/or sometime tomorrow as to what that this surprise is. For now I’m just trying to dodge her million questions as to what we are doing…so “wish me luck” to get her out of the hospital with minimum “kicking & screaming”! πŸ˜‰ I may have some “battle scars” to show by the end of this evening. Ha.

Goodnight y’all……and thank you for your amazing support!

#GoBeckett
#ODAAT

β€” with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

June 25, 2013

UPDATE (6/25/13)

Another good day. To state it briefly, one of Beckett’s heart meds got adjusted today (just another tweak to better prepare him for surgery one week from today), Leah’s mother and sister visited, we had “bumbo” time with Beckett, swing time, even music time, and lastly…I spiked Beckett’s hair in a gnarly mohawk this evening during bathtime….it looked awesome (I’ll try to possibly post a picture later).

Honestly, I could elaborate a little on each of those…but I think I’m gonna try to wrap up this update with the statement that Beckett is still doing “well” and has been trending the necessary direction for his big day next week. Please continue to pray for “smooth-sailing”, a complete recovery, and the declaration to God for His will to be done!

#GoBeckett
#ODAAT

β€” with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.