Heart of Beckett

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

UPDATE (8/28/13)

Not much to report (once again). Honestly, Beckett is doing quite well. Last night was a little better than the night before. We were definitely awake numerous times, but it was manageable, and Beckett was responding well to being rocked back to sleep.

We could still use some prayer figuring out a good and manageable routine. Leah had to nap again this afternoon, and I could have easily used one, but this ride isn’t gonna end (thankful…but I think you know what I’m saying). There are no “vacations”, we just need to figure out how to get up to speed with all his meds, appointments, sleep patterns, our jobs, my schooling, etc, etc, etc.

Lastly, I want to mention two more things:
1) Just another heads up (like last time we were home), there will definitely be days where we cannot quite find the time to post. But I assure you that if there is “bad news” to announce, it will be posted. So take peace in the days we are silent…we may merely just be enjoying life and enjoying our son….at home! 🙂
2) I want to remind you all of Beckett’s email address: beckettrupp @ gmail .com (spaces are added to help avoid it from being spammed on the blog). The emails you all have sent are so amazing, and I want to remind you that the purpose is to write Beckett something to either encourage him later in life if/when the scars aren’t making sense, or simply even to share with him what his young life has meant to you. He’s such an amazing little boy, and a slew of emails from you all will be so fun to share with him someday.

You guys are awesome! Thank you for your continual support. Oh, and the meals you guys are beginning to supply for us once again are such a blessing. Thank you so much!!
http://www.takethemameal.com/meals.php?t=ENMX4112

#GoBeckett
#ODAAT

UPDATE (8/27/13)

What a crazy night/day. Yesterday, being discharged, was amazingly similar to the first time we were discharged from the hospital. Ironically, by-the-way, we were discharged this time exactly one month from the day we had to readmit him. Anyways, it was another day of “hurry up and wait”. I got to the hospital early, met with the Cardiologist, got everyone and everything on the same page (because we really needed to be discharged from the hospital by 1:30pm…at the latest). I was scheduled (time-slotted) to conduct my research to nearly 500 freshman students at 3:30pm, and really only had/have one opportunity to get this done. If I missed it, there is a seriously good chance I’d have to almost start over on my Thesis. Well, we were pretty much done with everything (to be discharged) by around 11:30am. They brought us the discharge paperwork, and Leah observed that it wasn’t done right (to later regret even bringing it up), so they had to take it back and redo it. Furthermore, we were shown Beckett’s wean schedule, in which we noticed was way too quick of a wean for Beckett (found out the pharmacist who put it together didn’t know Beckett very well because the primary pharmacist was not working that day). Soooo…..that had to be redone as well.
Uh Oh. (pertaining to my deadline)
Long story short, we waited and waited and waited until I literally needed to leave or I would be late for my research. Truly I would prefer to leave with my wife and son (and would be further annoyed if I left to find out they were discharged 15 minutes later). Well, the nurse overheard me say to Leah that I gotta go, and she called into the room “I got it!” Soooo, we got the new paperwork, packed him/everything all up, and finally left! Yay!!!!

By the time we actually left, I was cutting it close…and of course, It seemed like we were getting caught behind every semi trying to pass another semi (huge pet-peeve of mine). Clearly, I was not going to speed….but I started getting a lil antsy. We actually pulled up to the building I was doing the research in at about 3:28pm (no joke). Leah drove the rest of the way home, and afterwards, I solicited a ride home from a friend I bumped into.
Done. And Done.

Concerning today and last night. Leah, her sister and mother were drawing up all if Beckett’s meds and we realized that the hospital did not give us scripts to 3 of Beckett’s critical meds. Unfortunately we did not catch this until Beckett needed one of them. So, we called the hospital, and I ran up to a CVS that took an hour to fill the scripts. BUT, we got them!

Lastly, Beckett decided he didn’t really want to sleep last night. We had him to sleep by around 11:30pm, for him to only then wake up by around midnight….and stay awake until about 3:00am or 4:00am. At one point, Leah and I just looked at each other and laughed. I mean, there is nothing we can do about it….and we are certainly not complaining. We just said, “today could be an interesting day.” Which it was. Her and I were sooo tired. Classes (for me) were good…but at times really challenging to stay focused. And Leah had various visits from a nurse and even a Medicaid specialist. And Beckett, surprisingly was awake for most of the day again today (somehow)…sooo, very little time for either of us to nap or catch up on our sleep. Hopefully he’ll sleep good tonight…but I guess we’ll see. He gets meds all throughout the night (which isn’t a big deal), it’s just more challenging when you add to that a grumpy baby who is whimpering because he is tired…but refuses to fall asleep. I must say though, it wasn’t anything like when we were home the first time. Beckett would scream bloody-murder all throughout the night then. THIS is much more tolerable. But again, I guess we’ll see what tonight has in store.

Thanks again for all the continual prayer and support. Oh, and if anyone is interested, here is the link to sign up to bring us meals:
http://www.takethemameal.com/meals.php?t=ENMX4112
That feels weird to say (but it’s probably my pride that gets in the way). To not have to think about meals is certainly a blessing, and if you are interested, we are certainly willing to take any frozen meals for later (we got a freezer/fridge combo from someone for free a few months ago…so we do have some extra freezer space). Thank you!!!!

#GoBeckett
#ODAAT