Heart of Beckett

UPDATE (9/26/13)

First off, sorry for the delay. It’s been a crazy week for me, but I’ve been wanting to get you guys an update since Monday night. Sooo…thank you for your patience.

I’ll begin with the Cardiology appointment. I wasn’t planning on doing this (because of the principle of “better safe than sorry”), but we drove all the way to Indy still OFF oxygen. Beckett has been satting great (well, “great” for him) since last weekend. So we took him into the office with no nasal cannula, and he looked so good. Our Cardiologist was very pleased, and reaffirmed our suspicions that Beckett IS truly doing quite well. He also let us remove another cable/cord we’ve had ever since we came home (the 2nd time). Beckett had a really annoying heart monitor that would monitor any abnormal heart rhythms. And when it detected something abnormal, it would set off a horrible and eerie sound…but oh well, we knew it was only for his care and protection. Anyways, the Cardiologist reviewed the readings from the few times it went off this past month, and it didn’t show anything too concerning. Sooo, bye bye lil black box. We did set up another appointment with him in about a month, but will be heading back down to to Indy again next week for a GI appointment to check out his J-Tube and possibly switch it back to a G-Tube.

Anyways, Beckett is truly doing sooo well! We actually did a mini “Beckett Tour” and took Beckett around to all the different departments within Riley where we’ve been in addition to taking him back up to Peyton Manning and St. V’s NICU. It was something I actually “dreamed” about doing someday. Just taking Beckett around to everyone who cared for him, show him off, and thank them all for their professional care. It was a long and exhausting day, but it was well worth it.

We are trying to take Beckett out more. There is a fine line to how often we should, but all-in-all…it is a good thing for him to do. It just always opens “ourselves” up to potential “issues” and bad things to happen. But we can’t (and shouldn’t) live in a bubble. Slowly but surely, Beckett will continue to experience more of the world outside of a hospital and our house.

Unfortunately, therapy has not started yet. We are still waiting for that to get going and are trying to be patient. So in the meantime, we try to do what we can on our own. But I’m confident that professional help will certainly take his progress to a whole new level.

Lastly, did you see my news about our friends at Riley and their son Caleb?! I think I only posted it on Facebook, but our friends we met at Riley have a son who has hypoplastic right heart syndrome (Beckett has hypoplastic left heart syndrome…..they are very similar, and very different). Anyways, similar to our journey, they began up at the St. V’s Peyton Manning PICU. They actually got through the second surgery with Caleb (just like we are at right now with Beckett) until things turned south pretty quickly and after a pretty severe cardiac arrest, they found themselves down at Riley on the heart transplant list. They have been waiting for a heart since last November (and I thought we had been in the hospital for a long time), and just found out a few days ago that THEY GOT A HEART! The surgery is already done, and they are doing well. It is soooo awesome! And we are so excited for them. Yet I appreciate the perspective to keep the family in your thoughts and prayers who lost their baby, but donated the heart. Such a bitter/sweet moment.

Well, that’s about it. We appreciate the continual pray for continual healing of Beckett’s little body. Leah and I are often working off of very little sleep, so that affects a lot of different things (attitude, concentration, temper, fortitude, etc etc). We really are doing quite well, but the continual support is always welcomed.

Oh, and if you are still interested in helping us out with a meal, I’ll provide the link below. I think we’ve nearly officially ran out of “volunteers”, but we new this day may come eventually. No pressure, just want to REwelcome the offer and provide the link.

“Take Them a Meal”
http://www.takethemameal.com/meals.php?t=ENMX4112

You guys are still so amazing and soo encouraging. We still get hundreds of hits on our website daily, and we only post weekly (at best). We feel very encouraged and very loved. We will try to do better in posting pictures (or even videos), but if you live close, feel free to stop by. Beckett is so cute, and as we continue to lose the cables and regain a “wireless baby”, we will definitely commit to taking him “out” more often.

“To God be the Glory,
Great things He has done!”

#GoBeckett
#ODAAT

UPDATE (9/23/13)

Either Leah or I will post again soon. Mainly because we will know a lot more after our Cardiology appointment tomorrow (technically today 9/23/13).

However, I delightfully inform you that for the majority of the past 48 hours, Beckett has been on NO oxygen support and maintaining his saturations at an acceptable level. When I “push” him like this, it makes Leah nervous (and rightfully so), but we gotta keep “moving”! He’s doing so well, though we have a ways to go. Please pray for a GREAT meeting with our Cardiologist, and continual progress.

As I mentioned, we will post another update soon!

#GoBeckett
#ODAAT

Don’t get sick in our house….the repercussions are severe (…and uncomfortable).
#SemiQuarantined

UPDATE (9/15/13)

Beckett is still doing well. We are still HOME! Though we are beginning to find some sort of routine, but unfortunately that routine consist of minimum/restless sleep, a rigid schedule, and many appointments. Leah has been a champ keeping it all organized while I try to help as often as I can within my obligations. It’s been extremely exhausting, but we are so thankful to have Beckett finally home (….and STAYING home!)!

It appears we are finally getting close to starting some therapy for Beckett. Though I wish this could have begun the very next day we were home, we were forewarned that it may take quite a few weeks to get “everything” going. So, as I was saying, it appears it may be actually starting as early as next week! Yay! We are excited to continue to see Beckett progress, especially in “normal” things like “tummy time”, crawling, eating, maybe even talking some (…eventually).

We took Beckett out on his first non-medical related field trip…and he did great (well, for the most past). We took Beckett to Anderson University where he witnessed his first collegiate volleyball game. Go Aunt Krissy! He did so well. There were loud buzzers, horns, etc…and Beckett just sat there and watched. In fact, he fell asleep about 1/2 hour into it. Unfortunately, at the end of the game is when he decided to have a mini-meltdown, which, coincidently, was when a bunch of people wanted to come see the infamous Beckett. He greeted them all with a scream…but at least it was memorable, right? 😉 Anyways, that was pretty neat, and he slept really well that night in particular. So, going forward, we hope to start taking him out more, especially before the weather gets “nasty”.

Please continue to pray for Beckett’s continual healing in addition to Leah and my fortitude. These past few weeks have been very tiring for the both of us, and for me in particular…I’m officially “under-the-weather”. I believe it’s just a “common cold”, but we were specifically made aware to be cautious of things like a “common cold”, as it could be RSV which would be very dangerous for Beckett to catch. Just please pray for a hedge of protection around our family, as we have not crossed the finish line yet. Leah and I desire (and need) more patience and more strength for Beckett and for one another. We do not want to leave any room for a wedge to subtly form between us or our family. Though I do not believe we are anywhere close to that happening, I believe a preemptive strike on this inevitable threat would be wise.

Thank you all for your continual care and support. We still have people texting us often, bringing us meals, mowing my yard, praying often, etc. etc. Your support and encouragement is so greatly appreciated! “Thank You” is simply not enough.

#GoBeckett
#ODAAT

UPDATE (9/7/13)

I must begin by sharing how liberating it is to only post weekly. Though I did appreciate keeping everyone in the loop every day, life has been a little crazy to maintain that pace.

A friend text me earlier this week asking how I was doing. He caught me in a fairly emotional state because I believe my response was something like, “hanging in there”. I then went on to explain that I’m trying to juggle keeping qualified for Medicaid for Beckett’s surgery next year, trying to be a great dad to an amazing son who has a huge amount of meds, doctor appointments, therapies, etc., trying to be the best support I can to my well deserved wife (yet I fail often), trying to keep up with bills and general house maintenance, trying to keep up with my graduate school studies at an exemplary level (and not even coming close to that), trying to maintain consistent progress on my thesis, my obligations/commitment with my job on campus that I feel I am not achieving at a level I’m satisfied with, teaching a class of freshman this fall (so taking time to prepare for class, grade papers, etc., etc.), and somewhere in there I haven’t even mentioned my spiritual life, and the list goes on-and-on-and-on-and-on….

At one point this week where it was evident to Leah that I was not doing very well, she lovingly smacked me back in shape and said that I’m putting way too much pressure on myself and to just relax and do the best I can. I’ve never really known what I’ve thought of the phrase “just do the best you can”, but that’s really all I can do. Anyways…enough about me, lets move on to Beckett.

Beckett’s first parade on Monday went well! We kept him inside the house until the firetrucks passed by because of the loud sirens…but once we brought him outside he was all wide-eyed, just soaking it all in. He wasn’t necessarily smiling, but I think it was just so much “information-overload” that he just had to sit there and watch.

I must also clarify a picture I posted earlier this week of Beckett with no cannula on. Though we appreciate the “praise” of him no longer needing the cannula, you may remember that I mentioned in my last post on September 1st that I took Beckett’s cannula off for nearly an hour and was planning on posting a picture as soon as I could. Well, that was the picture…and currently, Beckett still has a nasal cannula in his nose. I do still believe that we are getting close to removing it sometime “soon”…but not quite yet.

Beckett has been sleeping quite well this past week. He still wakes up here-n-there throughout the night, but really nothing too inconsistent of a normal baby. But obviously Beckett is no normal baby…..he’s an amazingly “special” baby! He’s still on a lot of meds in which we administer upwards to 10 times a day and often numerous meds each time. To measure them all out and get organized for the week is quite the feat…but we are figuring it out slowly-but-surely.

We had a follow-up Cardiology appoint this week in which I had to sit out on because of my classes, but thankfully my mother was able to go with Leah and help her out. Speaking of, my mother has been here all week and has been a huge help to both Leah and I….and definitely Beckett. Unfortunately she has to go back home tomorrow, but thankfully Leah’s family is only a few miles away and have been a huge help as well. Anyways, back to the Cardiology appointment, I was made aware that they did a follow-up Echo on his heart, a 12-lead EKG, and another X-Ray. Results? Everything still looks “good”! Praise the Lord!! We “can’t lie”, there have been some moments this past week (and since we’ve been home) that we’ve been nervous of his condition, but we have to constantly find the sweet-spot between “bad things happening” and merely him possibly just teething, his methadone wean, and/or normal baby “bad-days”. To find, locate and remain in that “place” is challenging but necessary to pursue, discover and learn.

Well, this post is beginning to get long (or, it already is long), so I should wrap up. Sooo, please continue to pray for Beckett’s complete healing, Leah’s tenacity while working and juggling life at home, my “work-load”, and God’s consistent provision for our “needs”. Furthermore, thank you ALL so much for the consistent meals! They have been delicious and such a blessing. Sooo, if this is your niche, and you like to cook…..well, we like to eat! 😉
Here’s the link again:
http://www.takethemameal.com/meals.php?t=ENMX4112
Thank You!!

Until next time, thank you for all the consistent support, we still feel as if so many of you are still engaged, even though the posting has decreased.

#GoBeckett
#ODAAT

Sooo….it’s my wife’s birthday today. I don’t think I can think of anyone more deserving of a BIG FAT Happy Birthday!
Happy Birthday, babe!
You’re an amazing woman, an amazing wife, and an AMAZING mother!

UPDATE (9/1/13)

Whelp, it’s September 1st….can you believe it?! I cannot. It seems like yesterday that I was announcing the birth of my new baby boy…and my, what a journey it has been since then. Clearly we still have a long ways to go, and in some regards, these upcoming months may be almost just as challenging as the last….but we have been longing for these days, so I say “Bring it on!”

Beckett has had another good day today. In fact, this morning he pulled off one of his cheek-pads holding on his nasal cannula, and I decided to pull the other one off as well. You see, Leah and I have really only ever seen Beckett’s naked face a few times and for very brief moments. Well, lets just say we were able to answer the question, “Can he get any cuter?!”….and the answer is an unequivocal “Yes!” I promise that I will try to post a picture soon. I left the cannula off for over an hour, and he was satting great! Yes, that means we are soooo close to loosing yet another cord. I would love for Beckett to not need oxygen anymore. I only put it back on to not push it/him too hard too soon….but I hope if we keep adequately/safely challenging him with it, we could have it gone very soon!

My parents came to town again today and were quite helpful. Dad helped me out with some outside “chores” I’ve been meaning to get to for a while, and Mom will actually be staying with us for the entire week. She’s a huge help, and just like Leah’s Mom (but in her own way), she’s a “Beckett Whisperer” as well. She’s very good with him, and can certainly help us a ton when we need a brake or a helping hand.

So, as I said….it’s September 1st, and I believe we have graduated to no longer “needing” to do daily posts. Though this has been a great outlet for us and certainly an effective way to inform all you faithful “Beckett Followers” of our concerns and prayer-requests, I believe while we are now pursuing what life at home may actually look like, we will be backing down from daily posts to weekly posts. We will certainly try to post photos and videos “often”, so please check back for that. And again, any help with the “Take Them A Meal” initiative is amazingly appreciative!
http://www.takethemameal.com/meals.php?t=ENMX4112
And one more thing…we are still working on some Beckett “swag” (t-shirts, bracelets, etc) to help support this journey. That should hopefully be right around the corner on the blog.

With sooooo much love from Beckett, Leah and I to you all…we are signing off for now, and hope to see many of you face-to-face sooner-than-later!

#GoBeckett
#ODAAT

UPDATE (8/31/13)

Whelp, I’ve made it through today (so far). Leah’s mother and sisters came over this evening to help me out by giving me a brief break to write some emails, pay some bills, and write this lil update. And before I forget, I must inform you that Beckett had a great night last night. He didn’t fully wake up even once. Though he did whimper numerous times (and I had to get up 3 other times to give him his meds), he remained asleep until about 7:00am. If he could do that every night, Leah and I would be quite pleased. Time will tell if that was just a fluke, or the beginning to a very much-so welcomed trend.

I’ll leave this update at that. Beckett is still doing ok, he just requires a lot of attention and specificity as it pertains to caring for him properly. But we are still optimistic that we will figure this out. Oh, one more thing, after tonight, we will have broken our previous record of only being home for a mere five days like the first time! Yay for breaking these kind if records!

Gotta go, Mr. Mom….back on duty!

#GoBeckett
#ODAAT

UPDATE (8/30/13)

Still doing ok. Beckett may be starting to show some signs of withdrawal once again (as we have weaned his methadone a few days ago….gotta keep trying)…..so please pray for that. And please pray for us as Leah heads back to work and leaves Beckett with me for the weekend. I know I can “do it” on my own, I just may appreciate some additional God-given patience, grace and strength.

Thanks! 🙂

#GoBeckett
#ODAAT

UPDATE (8/29/13)

Had our very first ever pediatrician appointment today. Though I had to miss a class for this, it was very much so necessary, and kinda nice to take Beckett “out”. I almost told Leah, “Hey, this is the first time we’ve had Beckett out and not at a hospital”…..and then I realized, “Nope, we’re still in a hospital.” But still, it was nice. Beckett behaved fairly well (for the most part) for his appointment….and of course, our pediatrician thought Beckett was quite cute! 😉

That’s about it for now. He’s doing very well, and we are continuing to take this one step at a time. We’re excited about this upcoming weekend. My mother is coming to town, and the Labor Day parade in Upland runs right past our house. Yay, Beckett’s very first parade!

#GoBeckett
#ODAAT