Heart of Beckett

UPDATE (2/1/13)

Wow, February 1st?!

One month ago today we were here at St. Vincent’s NICU waiting to be transferred to the PICU for Beckett’s first surgery. I know I’ve mentioned this before, but this has gotta be the fastest AND slowest month of our lives. I cannot believe everything my son has gone through in such a short period of time (and at such a young age).

We began this morning with a visit from some good friends to find Beckett being the All-Star he is. He had a great night, his stats look great, and all the Doctor had to say was a slight tweak in some of his medication. Their plan is for yet another uneventful/quiet day….in which we are certainly always in favor of.

I was reminded of a great passage this morning a good friend shared with me, Exodus 14:14, which says: ‘The Lord will fight for you, you need only to be still.’ I think I stumbled upon this passage early on in this journey, but it’s a great reminder of what I mentioned a few days ago….that we must rely on The Lord to be our strength, ‘for our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.’ (Ephesians 6:12)

It’s gonna be a great day and a quiet weekend of healing and a mountain of love poured all over my son. I’m such a proud Dad (as I know I keep saying, but I can’t help it), and am excited to battle this next chapter right alongside of Beckett and his Mom, and welcome all who dare to continue this journey with us!

https://heartofbeckett.com/ — with Leah ‘Whiteley’ Rupp at St. Vincent’s Womens Hospital.

UPDATE (1/31/13)

-Mission Accomplished-

Beckett is officially transferred to the St. Vincent Women’s Hospital NICU (just a few blocks away from where we’ve been). His stats look great, and he’s even starting to get his voice back a little (it’s really cute).

My grad-school classes began again today, and I officially got a taste of what it may look and feel like this semester to be in class and not with my son. Don’t worry, I only cried in both my classes (one much worse than the other). It was kind of embarrassing, but my cohort and professors are the best, and have been very patient and compassionate with me. I’m hoping this intense emotional distress may balance out as the semester unfolds…but until then, uh oh. 😉 My classmates may be in for a nice sappy treat. :-\

Now that we are no longer at the PICU, we also don’t have ‘free’ housing anymore. Our housing situation will need to be assessed and strategized this weekend…but we are confident something will work out. We do qualify for 2 free nights a week here at a hotel that is in conjunction with the hospital, so that should help a lot!

Ok, enough about us and more about the ‘Star of the Show’. This step is sincerely really substantial in Beckett’s immediate journey. It’s very scary to no longer be at the PICU (another ‘crutch’ and comfort zone for us), but we really are in good hands over here at the NICU…and it’s honestly not like they’ve never seen a patient like Beckett before (but I bet it’s been a while since they’ve had a patient as cute as him ;-)).

Well anyways, that’s the update for tonight. It’s been a long day…but it’s been a good day. I’ve gotta personally thank my Taylor family for all your support and encouragement today. It was really great to see y’all again!

I’ll post again in the morning…and if you aren’t reading this post from https://heartofbeckett.com/ don’t forget to check it out and pass it along. I’m not ashamed, and I’m quite proud of my son’s story! He’s ‘the man’….and I truly can’t wait for many of you to meet him!

goodnight — with Leah ‘Whiteley’ Rupp at St Vincent Womans Hospital.

UPDATE (1/30/13)

Beckett had another good night. The Doctors are continually tweaking the weaning of his medication. They explained that they are seeing progress, just very slow progress. However, his progress is not inconsistent to the amount of trauma he has endured in his short life. They hesitate to commit to a day and time in which they will be sending Beckett back to the NICU. This has been troublesome as I consider going home at some point today to get prepared for classes tomorrow. One Doctor in particular is crossing her fingers that this transfer may happen as early as tomorrow (we certainly aren’t holding our breath though). If I’m home and in class when this happens…I’d be pretty bummed. But there literally is no guarantee at all that this may happen as early as tomorrow.

Anyways, Beckett is still doing well (which is so exciting!). His continual progress are the exact words we like to hear from the Docs and Nurses. Stay tuned for further updates as they may start coming from Leah the days I’m back home. But again, all the posted updates can be seen at https://heartofbeckett.com/

Lastly, the support has been astounding (I know I keep saying that), but after posting Beckett’s website yesterday, within a few hours we had over 1,000 hits. By the end of the day we were over 3,200….that’s crazy!! Please keep spreading the word and feel free to share Beckett’s story….we are so proud of him, his courage and strength! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/29/13) -goodnight-

Beckett had a very eventful day and seriously handled it like a champ. He’s usually quite temperamental (as mentioned before), but was so chill during all his examinations today. He began his day by receiving a new “PICC” line, then they removed his “Central Line” from his groin area, then had an hour long “Echo” Examination, then “Speech Therapy” came for the first time (they deal with feeding, swallowing, etc, along with speech if/when that’s necessary and we get to that point), then they did CPT on him (which is a vibration to break up any secretion build up and keep his lungs open) which he usually HATES…and he didn’t cry once. Unbelievable! I think he’s really making great strides and everyone seems quite pleased with his progress.

We continue to take it a day (and an hour) at a time, but we are quite encouraged with this progress and desperately PRAY for no more major hiccups.

Leah and I were discussing earlier today that if we were given a snapshot of what was to come this month, we would have certainly said that there is NO WAY we could handle it all. Though we often hear the phrase “God will not give you more than you can handle”…I do not necessarily believe that to be true. 1 Corinthians 10:13 explains that we will not be “tempted” more than we can endure. I believe that we are presented with many trials beyond what we can endure. These moments remind us to not depend on our strength, but HIS strength. I don’t mean to “preach”, but I feel that we need to learn to wholeheartedly lean into the Lord during trials and not attempt to muster up the strength to bear it on our own. These are the opportunities to live out 2 Corinthians 12:10…”when we are weak, HE is strong”. We are slowly learning to let Him be our strength, to rest in his peace, and swallow our pride during moments of weakness. The Lord is our strength, and there is literally NO WAY we could be doing this without Him!

Love you all….GO BECKETT!! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

I’m not sure if I’ve already posted this song…but Chris Tomlin’s song “Sovereign” has been a huge encouragement:

UPDATE (1/29/13)

I must first begin by apologizing for not posting an update yesterday evening. Two nights ago I went to sleep with a little headache and woke up yesterday morning with an even worse one (I hate it when that happens). Unfortunately the headache did not go away and I ended up going to bed last night at around 9:00pm.

…but enough with the excuses, on to the UPDATE:

Beckett had little episodes here and there yesterday, nothing too crazy, but it definitely seemed a lil more severe than just “typical baby crying”. Late last night, Leah and the nurse concluded that he may not have had his chest tube drained at all throughout the day because the nurse from last night drained 36ml of fluid in one sitting (which isn’t a lot per say, but “a lot” in one sitting due to his positive trending of less and less fluid in his chest). As soon as the fluid was drained, he nearly immediately fell asleep, and his breathing was less labored.

He’s having a new “PICC” line put in right now as I type, and this is a “good” thing. He has a “Central Line” in his groin that they want to pull out, and we are being told that his “PICC” line is just another step toward the direction of heading to the NICU. He really is doing “good” (#perspective), but he is still very “sick”. As you can tell, though, from the pics and videos, he really is just the sweetest and cutest thing ever!

Now, onto the last few announcement/updates. We are still “trending” to be transferred to the NICU by the end of this week! Yay! Though I’m not overly anxious because I’d rather us be 100% sure he’s ready than rush anything (gotta trust the Docs on that one though). My Grad-School classes begin again this week, and I just found out we have an assignment due on our first day of class (“Dr. Gaier Shout-Out” ;-)), so my mind has had some time to start thinking about all that’s still going on outside of the hospital (mortgage, school, bills, apple stock dropping ;-), etc, etc). We are eager for this next chapter, but know that there are many more chapters to write before this story concludes (“one-step-at-a-time”). Thanks again for all the prayer and support (as always)…we can feel it, and so greatly appreciate it….you have no idea!!

And lastly, announcing Beckett’s own personal website in which my Facebook Update, Leah’s Facebook Posts, Pictures, Videos, etc will be posted for anyone outside of our “Facebook Bubble” to follow the story. I think the link is awfully fitting, as we have chosen the domain name https://heartofbeckett.com/ . Please feel free to pass this link around and share Beckett’s story with anyone you want. I’m proud to be his Dad, and I’m proud of his Mom. We are surrounded by amazing family and friends! Bless you all!! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.