Heart of Beckett

UPDATE (8/10/13)

Beckett is the cutest baby ever. My goodness. I know parents can tend to embody skewed perspectives about their own kid’s “cuteness” (and rightfully so)….but geesh, Beckett is so darn cute! He just flashes the biggest smiles ever, and as of late, he officially responds amazingly well to the age-old game of “peek-a-boo”. It’s great!

So, Leah left this morning for work in Fort Wayne. She left me a list of questions to go over with the Cardiology team during rounds, to which I did. However, amongst it all, I must have missed some fairly pertinent news. They went down on his methadone again today. “Deep Breath.” Here’s the thing, Riley, St. V’s, even Lutheran in Fort Wayne are the reasons we still have our son….but at times it is so exhausting to repeat ourselves over-n-over. You see, when Beckett’s methadone is slightly touched (his dosage, that is), he will respond. Furthermore, he typically has a delayed response. So, it will then be assessed that he is handling a wean “ok”, when in reality, the brunt of it is just about to hit. Coincidently (and unfortunately), the decision will then be made that since he’s handling the last wean so well, we can go down on his dose again. At this point, if this is not caught or dealt with appropriately, the ramifications are only compounded. Beckett will begin to “downward spiral” out-of-control with heavy withdrawal symptoms. Sooo, long story short, I had “a talk” with the on-call cardiologist this evening and the decision has been made to go back up on his dose, sit tight..ready with some PRN doses of Ativan, and wait another day or two before we try anything with his methadone again. Moreover, when he displayed withdrawal systems, it affects his respiratory, heart rate, and even reflux. Well, the two major issues we are (and should be) dealing with are his formula and oxygen settings. And when we play with methadone doses, we just “muddy the water” on if he’s handling a wean on his oxygen support adequately, or is he in mild respiratory distress from withdrawal systems. I hope that makes sense. But either way, I will be discussing this with the Cardiologist tomorrow morning, and I’m confident we will eventually see eye-to-eye on this issue.

Other than that, I restate my first paragraph that Beckett is so cute! If he’s not sweating, throwing up, or irritable (all symptoms of withdrawal…to name a few), he’ll just be laughing, giggling and playing like a champ!

Lastly, please pray for Leah. She is working tonight (once again), and just informed me that she just had a very difficult situation with a baby and that is always very difficult to handle. I only know it was a baby and nothing more cause of course she can’t and won’t say more. My wife is an exceptionally strong woman (in every sense of the word), but working with children or babies in her field might be best explained as her “achilles tendon”, if you know what I mean. Give her someone burnt from head-to-toe, gunshot wounds, or whatever other gnarly thing you can think of…..but not kids. And clearly, our current situation seems to compound the intensity of it all what seems 100 fold. So anyways, please pray for her, please continue to pray for Beckett, and please pray for our continual gratitude and patience.

You guys are the best!!

Isaiah 41:10
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Zephaniah 3:17
The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.

#GoBeckett
#ODAAT

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

#Surprise / #Early #Anniversary (In A Hospital)
My wife has blessed me with a son who happens to only have 1/2 a heart, yet our family is now more whole than ever!
Happy Anniversary Leah!

UPDATE (8/7/13)

Soooo….shortest update ever:

Leah has a really bad headache, and I’m somewhere in Indiana with little-to-no signal. With that being said, Becket had a GREAT day! He officially got move up to the Heart Center floor, which is definitely a sign of continual progress…..progress to going BACK home! I think it’s currently still projected to happen sometime early next week in which we are very thankful and excited about.

Thank you all (AS ALWAYS) for your continual support and prayer! We still need it…and still want it. This next chapter will certainly have it’s challenges, but we welcome those challenges…as it involves Beckett finally be home! I feel as if that should conclude with an “Amen”, yes? 😉 AMEN!

#GoBeckett
#ODAAT

UPDATE (8/4/13)

Beckett has been in a great mood today. He really has a surprising amount of endurance when it comes to him playing in his bed. Just think what it’ll be like when he’s runnin’ around! However, with that energy there is always the inevitable “running out of gas”. Well, these events have typically been ending bad these past few days (maybe weeks). However, we caught it this afternoon. When it finally came for him to sleep (you can just tell when he’s “done”), he just fought and fought and fought. But before it got out of control, he somehow settled down and fell asleep (and has been sleeping for a while now).

I posted on Facebook earlier today that I finally feel like I have the time to do some “summer reading”. So I spent the afternoon reading a lil and just relaxing (in Beckett’s hospital room). We did have some NICU nurses visit again (which is always a welcomed treat), but I told them that as much as we enjoy seeing them, that in the near future we are going to have to welcome them to our house….cause that is where I am hoping and fully expecting to be (again) soon. On that note: if I had to guess (at this rate), we probably won’t be home for at least another week; that’s disheartening, but at least it’s better than a month!

Leah had to work once again today, but will be back again tomorrow. She’s so amazing. I applaud her tenacity to keep working, as I know she is truly doing it for us…her family. I cannot wait for the day to relieve her of the stress of “needing” to work like she is. She still may work, but I’m ready to get back to working full-time again….but all in due time. Didn’t I just post recently something about staying present in our current situation? 😉 Yeah….an everyday battle! One day at a time.

#GoBeckett
#ODAAT

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

UPDATE (8/3/13)

Whelp, here I am again…in a hospital…just me and Beckett. Leah had to work again this weekend. In fact, we’ve been forewarned by her job that she cannot have any more days off. :-\ They’ve been really gracious throughout this entire journey, but I guess they have to draw-the-line eventually.

As I walked into Beckett’s room this morning, he was sleeping! That’s awesome! He hasn’t been sleeping the greatest lately. However, as I walked in I noticed that his poor ear was all bent over from the cannula and his arm-splint (helping to keep his IV in his arm) had slid off. So I went and found his nurse. She didn’t mean to, but in fixing those few issues, she woke him up. Incidentally, he then stayed awake….what seemed like all day until he had a horrible meltdown in the late afternoon. We don’t like these kind of meltdowns because he literally wore himself out (which is always scary). He did hold his sats quite well during the meltdown, which inspired (after my subtle hints… #inception ;-)) to start weaning him off some of his oxygen support machines. I think that has been one of my struggles this go-around. My attitude. I can keep my composure, but I feel like I’ve had a much shorter fuse since we re-arrived here at Riley. I think it stems from being back so soon, it spiraling into what it has, the perceived rate-of-progress, the lack of sleep….it’s just all very frustrating. I’ve caught myself telling Leah (certainly out of weakness) that “I’m done with this!” Yeah, embarrassing, huh? I think Leah initially took it as me “quitting”, which is definitely not what I meant. I was merely expressing my desire for this to be done with so we can just go home and try to be a “normal family”, or at the very least, live life outside of a hospital over an hour from our house (but however you “slice” it, it still doesn’t sound very good, does it?). I spent some amplle time late last night, and even this morning wrestling with God on “motives” and “attitude”. I’m certainly not perfect, and at least I know it. But I can struggle with pride and putting myself first. I’ve had to actively accept God’s grace over my life and my sin once again. This is a daily process for me, and is still fitting of the mantra “one day at a time”.

As I’m wrestling with patience, pride, motives and idolatry through this particular leg of our journey, I invite you to do the same. Why do you do the nice things you do? What are your motives? Who do you truly worship? Look deep. Is your pursuit of pleasure, personal satisfaction and joy surprisingly first in your life? Sit back, talk it through with God, and lastly…fully bask in his grace. It’s a beautiful thing. Everyday I try to better understand his grace, and what’s awesome is that everyday I have so much more to learn. Lamentations 3:22-23 says, “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.”

We hope to be home soon….but until then, we ask for prayer to stay present in our current situation and trust that God is still in control and has this (and has US) right where we need to be.

#GoBeckett
#ODAAT

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