Heart of Beckett

UPDATE (1/21/13)

Can’t believe it, but our son is 24 days old already, and, according to the Doctor, he’s looking the best he’s looked yet! We had a very uneventful weekend (PTL), other than the amazing opportunity to hold Beckett once again on both Saturday and Sunday (please see the pics I posted…it was so great!). The plan for the week is to slowly wean off different medications, but the big goal is to possibly have Beckett extubated by the end of this week (aka: pull the tube out of his mouth that’s helping him breath). These ‘weanings’ may be challenging to observe, but a much more welcomed challenge than situations where his life is in the balance.

The support has been astounding, you all have been so great! We’ve had multiple family and friends visit us here at the hospital, some financial support, and even our small town of Upland is tying Blue Ribbons out in front of their homes in support of Beckett and his precious life! We are so humbled and blessed to have the family, friends and networks during this time of need…and are so very thankful!

Lastly (and I know many of you don’t necessarily share the same ‘religious’ beliefs I have…but), it has truly been undeniable that there has been a higher power at work in my son’s life. The Doctors and Nurses have even mentioned that they can’t necessarily share everything with us quite yet, but Beckett has truly been a miracle baby and has touched many lives even here in the hospital. I say, ‘To God be the Glory!’

Revelation 4:11

“Worthy are you, our Lord and God, to receive glory and honor and power, for you created all things, and by your will they existed and were created.” — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/19/13) -goodnight-

What a great day!

Beckett has held an ‘acceptable’ heart rate nearly all day today. The surgeon did put in another drainage tube this afternoon which drained over 100ml of fluid (which is a ton for a baby his size). He’s also had multiple bowel movements (sorry if that’s gross), which is great news! He’s probably lost a lot of weight today, but it’s all very good and very encouraging. Going forward, however, he does need to start building up his strength while regaining healthy baby weight.

Now, on to the finale: Did you all see the picture(s) of Leah and I holding him?!? Oh man, how awesome was that? One of the Doctors came in later this evening an said, ‘He needs to be held….It’s time to hold him!’ …and they really didn’t take ‘no’ for an answer (as if we actually said ‘no’). It was so cool. We are very pleased with Beckett’s progress, yet understandably timid to quickly forget these challenging past few weeks.

Brighter days are ahead, and we press on to win the prize (Philippians 3:14) and bring glory to our God through the testimony of our son. Grateful for all our many blessings! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/19/13)

This morning has been much more UNeventful than yesterday. We did receive news, though, that his fluid around his lungs looks a lil worse than yesterday, so the decision has been made to put in a drainage tube (this will not happen, however, until sometime this afternoon). His heart rate is ‘still’ stable, and we are thrilled to report that he had a pretty good night last night.

Thanks again for all the prayers, we hope for a quick/simple operation this afternoon and an uneventful weekend. Love and Appreciate each and every one of you!

(Isaiah 4:13)

(Psalm 103:3) — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/18/13) -goodnight-

Whelp, lets dive right in:

Beckett’s heart rate is currently ‘acceptable’, and has been since about 1:00pm. We pretty much haven’t left his side all day just watching to see if he decides to ‘act up’ again. I’m anticipating that tonight will be fairly restless for us, but it has been a fairly exhausting day, so we may just ‘pass-out’ once we finally decide to go-to-bed.

Other News:

We were just informed that Beckett’s MRV looked pretty ‘good’. His clot in his brain was non-occlusive (as in, blood can still pass through)…that’s ‘good news’. We did find out, however, that he does have some extra fluid around his lungs now. They are waiting to drain him via puncture due to the heavy blood thinner (heparin) he’s on, so they are going to try to combat it this evening with non-invasive methods.

It’s been a very crazy and intense day, but you know what(?): I do believe with all that I am that God is still in control, He is still sovereign, and I am blessed to have front-row-seats of His miraculous hand on my own son. Don’t hear me wrong, I’m not always so optimistic, my flesh is often weak but God is my strength and my portion, forever! (Psalm 73:26) Please hang in there with us, and join this miraculous journey of the life of Beckett Jude Rupp! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/18/13)

Wow, what a morning! Beckett had a great night last night. When we went to bed his numbers looked great. I even checked on him again at around 4:30am, and he was still rockin’ it. We got to his room at around 9:30am this morning to find his heart rate racing as high as 280bpm. They said he just started to do that about 3 minutes before we got in his room. Within minutes it seemed like all the Doctors, Specialists, Nurses and even Administrative Staff were in Beckett’s room as we were explained that they want to try to shock his heart back into a normal rhythm….I think that kind of sent us over the edge. As we walked out of his room in hysterics, we waited in the ‘family room’ just crying, praying, and longing for good results. They eventually came to explain that they did shock him twice, but it didn’t seem to work. They are now administering maximum doses of medicine (AmioDARONE) to help with this erratic rhythm. He is now back to a somewhat normal rhythm, but our emotions are still a lil shipwrecked. We are justifiably ‘on-edge’ right now, but the plan is still to just wait for a few days, praying for no outbreaks and a consistent rhythm. I’m sorry to enable the emotional roller coaster with this update, but our reality right now is far from stable. Thank you again for the consistent support and prayer….our God is so much greater than this and is already using Beckett’s life in amazing ways (we literally KNOW that to be true already)!

‘Thank you Lord for another minute with our son. I promise to never take him for granted.’ — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/17/13) -goodnight-

Sooo…though Beckett has flared up a little today here-n-there….he’s doing pretty awesome right now. There doesn’t seem to be any real game plan other than settling him down and making sure these erratic heart rhythms are completely gone.

Beckett’s surgeon is quite happy with his job, but we now have a new Doctor for his heart rhythms.

Moreover, Beckett is being treated for the clot in his brain with intentions to prevent a ‘minor’ issue from becoming a major issue. We are optimistic, but cautiously watching for any potential signs of trauma to his brain.

Grace and Peace to you all….may everyone have a restful night! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.