Author Archives: Heart Of Beckett

Jun 13 2013
1 Comment
Leah

June 13, 2013

UPDATE (6/13/13)

Beckett has been such a good boy today. Thank you for all the prayers as he was having his heart catherization. They had a little trouble getting the access to perform the procedure, but once in, Beckett behaved very well. Even the cardiologist commented that Beckett has cooperated for him twice now. He said Beckett is such a different case and during the procedure he was saying over and over “Bend it like Beckett” (for those of you who don’t know that is a pun off a movie title). They did have to use both legs for access, so both sides of his groin will be sore, but at least they were able to get what they needed. The poor baby had such a long morning. He couldn’t be fed after 5:00am this morning and his cath got pushed back until almost three in the afternoon. He barely cried even though I am sure he was very hungry. In fact, he still hasn’t eaten as they are waiting for him to wake up more from the sedation. He also didn’t sleep that well last night and was up pretty much all day before the procedure. He did sleep a little while the nurse held him early this morning, and then again for about an hour while I held him. He laid in his bed for a long time completely happy, calm and playing. It was so cute. We went to get lunch and he was lying on his side. I placed a few toys in front of him and he immediately started playing with them. It’s so awesome to see him entertaining himself already. He was just so calm for almost the entire day leading up to the cath. He did have a few minutes of music therapy just before we headed downstairs, and he watched the therapist so intently while Jonny held him. One of the nurses prayed with us and then we had to get ready to leave. When it came time to put him in the isolette, Beckett immediately began screaming. Thankfully the nurse that had him on the day we had the PICC line procedure was there, and recommended I carry him down so we didn’t have a repeat of last time. Everyone agreed this would be best for him, so I carefully walked him through the halls while the nurse and respiratory therapist pushed all the equipment beside us. It was probably better anyway, because Beckett is so big, he barely fits in an isolette. Once downstairs, we kissed him and I handed him over to the nurse. I will never be able to explain how difficult that is both physically and emotionally. He instantly began crying and we could still hear him out the door and down the hall. Not a good note to leave on. But, he returned to us doing very well. They even hope to have him extubated sometime through the night.

So the results. Honestly, it was not exactly what we hoped to hear. Mainly because it didn’t really given us any more solid answers. They need the pressures in his pulmonary arteries to be in the low to mid teens. The left side is at 15, while the right is at 25. This is too high of a pressure to say definitely he is ready for the next surgery. But they also don’t know that it means they can’t do the surgery. So we are in limbo at the moment. There were plenty of other things talked about, but that is the main point. Currently we aren’t sure what the next step will be. They are going to present his case at their weekly meeting tomorrow and see what potential steps we should be taking next. We are not discouraged, as this is exactly the way God planned it. It just isn’t black and white like we hoped. The cardiologist did say, as we have seen with Beckett in the past, and due to his many complications he has had along the way, no matter what they do, Beckett is a higher risk patient than normal. But, we have heard that before too. So we continue to wait. You would think we would be used to this by now, but let me tell you it never gets any easier. Hopefully we will know more tomorrow. All the while God knows exactly what Beckett needs and when he will get there, we just wait for Him to bring that revelation to the people taking care of him. We know it will all happen in perfect time.

Joshua 1:9
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

Jun 12 2013
2 Comments
Leah

June 12, 2013

UPDATE (6/12/13)

Beckett has had a better day today. His arrhythmia stopped around 1:00am and he only had a few funny beats this morning. He continues to have gagging episodes that both scare him, and then make him very upset. He goes up on his oxygen during these times, but at least they are able to bring him back down when he settles. It is such a hard thing for him to keep having this reflux. They continue to say it is the worst around five to six months of age and then they start to grow out of it. I pray he heads that direction quickly. He hardly slept through the night or during the day for that matter, so praying tonight is restful as he heads into his procedure tomorrow.

My mom came down today to stay with me, so we got to go out “shopping” for a while. It was fun to get away and out in the world. Most of the time I just go from one hospital to another. But anyway, it was good to spend some time in fun stores and having dinner with my mom. We really just got stuff for Beckett, which is so fun for me!

We got back to the hospital in time for Beckett’s bath, which he loved and was so well behaved for. He just laid there and played with my mom. She had these letters on her shirt that he kept reaching out and trying to grab. It was awesome! He was so intrigued by it. When the bath was over we tucked him in, and he fell right to sleep. He is such a good baby.

Tomorrow is Beckett’s heart catherization. It is supposed to be around noon or shortly after. This is just diagnostic to see if anatomically he is ready to have the next surgery. We will have the results by the afternoon. I am nervous, as this is an invasive procedure, but trusting everything will go smoothly. The cardiologist is the same doctor that performed the last one, and he is very good at what he does. This is such a big step for Beckett, and I am excited for him to be making such forward progress. We ask for prayers for tomorrow’s procedure, fully believing Beckett will rock it. I also want to ask for prayers for another NICU family. They are so sweet and have a son that was born very prematurely. From what I can gather he is extremely critical at this time. God is big. He can work a miracle even now. Please pray for them and the life of their sweet baby boy. I have never believed more deeply that God is God who not only hears prayers, but answers them! Let’s fill the heavens with prayers for these babies!!

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

Jun 11 2013
3 Comments
Leah

June 11, 2013

UPDATE (6/11/13)

Today has been such an interesting day. Beckett had a good day until late this evening as I was putting him to bed. He had just gotten a bath and clean clothes when he decided to poop in his fresh diaper. I decided I was not going to put him to bed for the night with a dirty diaper. So I was changing his diaper and he was pretty much staying asleep, until I realized it was up his back and on his clothes. This of course means a thorough wipe down and new clothes. This is obviously a little more involved than just a quick diaper change. So, he began to fuss a little due to being so tired and he ended up gagging on his pacifier. This is always a downward spiral and he got pretty upset. I was able to settle him down but not before his alarm started dinging the emergent sound. At first I ignored it thinking it was just his oxygen from crying, but when I turned around I saw his heart rate was in the 200’s. This of course is never good. He did not remain there long, and they were able to determine he was having PAC’s which was throwing his heart rate all over. Cardiology came by and confirmed that he is fine, but they will definitely continue to watch him. Of course Beckett slept through the entire thing. He did not come out of it as quickly as he did the last time; in fact, he was still doing it when I left. But when cardiology says he is ok, he must really be ok. So, we wait for him to come out of it. Praying it doesn’t take him too long.

The other interesting news, which Jonny may have mentioned last night is that Beckett will be having his cath this week. It is officially scheduled for Thursday around noon or little after. They said again there is no need to wait. He is at at good place and a good size right now. Things don’t stop there. If Beckett is hemodynamically where they want him, he could be on the surgery schedule as early as next week! If it were not next week then it would be the week after. Holy cow! We knew surgery was inevitable, but I wasn’t prepared for them to say it could be so soon. It felt like if we didn’t talk about it, we wouldn’t have to face it. We want this for Beckett, but it is hard to face the reality of letting my son have another open-heart surgery. I just haven’t geared up for that yet, so I better get on it. It seems like such a shock because it was not long ago they were saying Beckett might never be ready for surgery. We technically don’t know yet if he is, but we will know after the cath on Thursday. So, we have some big things coming up. They are both exciting and overwhelming at the same time. God has brought Beckett to a place where he can move forward and we are eternally grateful! I believe Beckett is on the way up and will be able to come home before we know it! Let’s see where the Lord leads us next! We are trusting Him with reckless abandon. May people continue to see God’s face through the journey of Beckett Jude Rupp.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

Jun 10 2013
4 Comments
Jonny

June 10, 2013

UPDATE (6/10/13)

I’m back in Upland again. Leah and I officially passed off the baton.
It’s sooo good to be together as a family, and even though it’s
short-lived at times, at least it’s “short-lived”…and we are fully
expecting/anticipating that to change sometime soon. I’ve got a lot to
go over in this update, but I’ll try to be brief and to-the-point.

I’ll begin with Beckett’s reflux issue. He has continued to reflux all
day today, but as I mentioned last night, we got an opportunity to
speak with the head Neonatologist today about this issue. However,
before that happened, Leah called me this morning with a great idea.
We aren’t sure it’ll work, but it’s definitely worth a shot. Beckett’s
food (/milk) gets, what’s called, fortified to a certain caloric
level. He, for a while, was up to 30 calories per feeding, but he is
now down to 27. The milk gets fortified with a formula like Gerber
Good Start or Pregestimil. Well, Leah remembered that while we were
over at St. V’s, the milk was being fortified with
Pregestimil…however, as soon as we came to Riley, they use Gerber Good
Start. We also noticed that his reflux has gotten significantly worse
since being here at Riley. Sooo, if you are connecting the dots…we
offered up the solution (Leah’s idea) to fortify the milk with
Pregestimil instead of the Gerber Good Start and see if that makes any
difference. It might, it might not…but like I said, it’s definitely
worth a shot. Babies reflux, we understand that, but if we can somehow
lesse n how much Beckett is doing it, it will definitely be a good
thing for him while still in this “critical” state.

Next, his flow on the VapoTherm is still on 3 liters. In fact, they
kept turning up his oxygen support (the FiO2) today after every reflux
“episode.” I think he can handle less support and flow, but its best
right now to just give him as much support as possible heading into
the Cardiac Cath. Speaking off…

Soooo, we heard some interesting news today. Cardiology had the
thought today “why wait”…turns out, they’d like to do Beckett’s Cath
this week sometime (preferably Thursday). Wow! That was a bit of a
shocker. Additionally, they said that if his hemodynamics look ok,
they will most likely review his case the following morning (Friday
morning) at the Cardiologist/Surgeon-Weekly-Friday-Morning-Meeting,
and could potentially schedule his next surgery sometime within the
next week or two. Again…Wow! Leah and I knew this day was
coming….eventually, but now that we are actually talking about it,
it’s gettin’ kinda scary! I’m excited (and a lil scared), but I’m
excited because I want to keep this train goin’. As far as I’m
concerned (taking into consideration my falling, messed-up, prideful
nature), I’m ready to take the lil rascal home….but all in due time,
right?

Lastly, we got the results of the MRI back. It’s good news….and
interesting news. Let’s start with the good news. The clot is GONE!
What a praise! I am so thankful to know that is no longer an “issue”.
However, they did happen to notice some other “things”. I’m terrible
at explaining this kind of stuff, so try to hang in there as I use
severe layman’s lingo (and I’ll be brief). They saw some small “spots”
all throughout his brain, most likely some sort of left over blood
from some busted vessels. They are definitely “old” (I’m assuming
happened during the cardiac arrest back in January). It’s hard to tell
if they will have any negative effects on him cognitively, but they
are hoping and assuming they won’t. Additionally, his brain is a
little small. They said this can happen to babies with Beckett’s heart
condition, AND to babies who are on Ecmo. This could actually manifest
itself to affect him cognitively some, but again…we won’t really know
for a while until he’s actually developing more in areas such as
speech and learning. Lastly, they saw a small spot toward the middle
of his brain they are calling white-matter. It is technically an area
of tissue that has died due to injury. It’s a spot that can happen to
people after a stroke (which Beckett must have had sometime in the
past as they can tell it is old) and can definitely effect things like
motor skills, coordination, etc. Again, we won’t really ever know
until he really starts to learn how to walk and develop coordinating
types of things…but we are hopeful it won’t effect anything. They
followed up by saying, we’ve seen babies with very insignificant
findings struggle developmentally, and we’ve seen babies with
significant findings thrive. They said, “These are just images,
accurate prognosis is very difficult. He may be just fine, he may
struggle some, or he may struggle a lot. We just don’t know. This will
just be another thing we will be watching closely as he grows and
develops. (I hope I explained that “well”, and did it some justice).
But you know what, we tackle whatever we’re thrown if we just get to
keep our Beckett. I know that may either sound selfish, or it may
sound completely normal; I’m just trying to say that we clearly want
to “keep” Beckett, no matter what that may look like…but I truly do
offer him back to the Lord to use him however He may please.

One last thing, Beckett is so cool! He can give high-fives now! It’s
so fun to watch. You just put your hand in front of his face and say,
“high-five”, and he’ll slowly touch your hand palm-to-palm with his.
It’s precious. Ok, Ok…he may not really know he’s giving a “high-five”
as much as he just wants to touch your hand….but it’s great! Come
visit, maybe you’ll get a Beckett “high-five”!

Exodus 14:14
The Lord will fight for you, and you have only to be silent.

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

Jun 09 2013
4 Comments
Jonny

June 9, 2013

UPDATE (6/9/13)

Ok…..sooo, another good day. Perspective is key. His breathing has gotten a little more distressed, so they actually turned the flow of his VapoTherm back up to 3 liters. Though this is a “step backwards”, it apparently isn’t the worst thing ever. They know he can handle 2 liters, but they are just trying to give him as much support as possible these next few weeks (heading into the Cardiac Cath). They did do another X-Ray today (because of his excessive breathing), and they actually said that it appears to be the clearest and best looking X-Ray thus far.

Additionally, there were a few other little things addressed today. One, his eyes have been getting a little red and bloodshot. This has been the case for a week or so, but he is now back on some eye drops that should help. The only bummer is….he hates ’em! Man, does he get mad! But I think his eyes are already starting to look a little better.

Another issue is his reflux. Our nurse today told Cardiology about it, and Cardiology said that this is the first they’ve heard of it. That was a bit of a surprise. She (Cardiology) said that she isn’t a big fan of it and would like to figure out a solution soon. Since reflux isn’t necessarily their specialty, they will now depend on the expertise of the Neonatologists. However, the Neos aren’t nearly as concerned about it. This then, will have to be a joint effort to resolve the issue. Tomorrow, the HEAD Neonatologist of the entire NICU will be working, and they said that they are going to ask him for any creative/experienced solutions. I hope this gets resolved soon!!

We are still waiting on the MRI results. I am now being told that we will most likely find out sometime tomorrow. Though it isn’t necessarily critical for US to find out the results as-soon-as-possible….we just want to know….ya know? 😉 It’ll just be one more thing “off the list” to know that he no longer has any blood clots.

He had some “Bumbo Time” today! A Bumbo (for all of you who were just like me and had no clue what a Bumbo was) is a foam chair thing that he sits upright in. It was cool to see him use muscles he hasn’t really used before to do things like hold his torso steady and his neck still. He did such a good job for the first time…and it was certainly fun to try. I’m so proud if his slow/consistent progress.

Lastly, we were able to FaceTime again with Leah today. She was at work, but had a moment to run away for a second to see her son. It was cute….he definitely looked right at my screen (at Leah) and seemed a little confused, but definitely intrigued.

One last thing. He has graduated yet again from diaper school. He is now in size 3 diapers. For some of you, this hardly means anything. And really, for me, it simply means: Wow, he’s getting bigger!! 🙂

Love you all….sooo much. I can’t wait to someday go on a “Beckett Tour” and just show him off to all of you in various towns, events and visitations. Go, Beckett, Go!

#ODAAT

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

Jun 08 2013
2 Comments
Jonny

June 8, 2013

UPDATE (6/8/13)

Whelp, Leah and I came in this morning a little “early” so that she could spend some time with Beckett before she had to make the trip up to Fort Wayne for work this weekend. Again, she is now on a set schedule for Saturday and Sundays from 1:00pm-1:00am. Though this is not “ideal”, we are thankful for her job…and Leah truly maintains a great attitude about it all. She’s amazing!

It was, however, extra “touching” this morning when Leah tried to say “see-you-soon” to Beckett. He would just hold on to her finger, pull her in, and even when she would try to walk out, he’d reach his hand towards her. And if you’ve ever seen a picture of Beckett, you’d know just how engaging his eyes can be….well, lets just say that it broke her heart.

We have had a good day today, however. He is still refluxing….so please pray for that. It really scares him, and us….it’s not fun and definitely gets him really riled up.

We are still waiting on the results for the MRI. We were told that we should hear back from them today….but I guess that never happened. We are optimistic that the clot is gone, but I guess we’ll wait patiently until we hear the “final word.”

Also, we just heard that the cardiac cath is unofficially official for June 20th…the day after the move into the new facility. I don’t think it’s actually official yet because we are still waiting to hear back if there are any slots available that day for the cath, but again…we think that it will most likely happen that day. Either way, it’s nice to start hearing dates for things…it really helps us feel like we are still moving forward.

We have much to be thankful for. Beckett is truly a miracle baby. Leah reminded me a few days ago that back in January when Beckett was on the Ecmo machine, his heart was literally not beating for like, over a day. In fact, his heart only began to beat a little bit here-n-there a day or two afterwards. The Ecmo machine would do the “beating” or “pumping” for him, to allow his heart to rest. That’s unbelievable. I kinda forgot that detail. My son’s heart stopped working for an “extended” period of time after his cardiac arrest! Wow! That, in addition to many MANY other things is just so amazing to me. Yes, modern medicine was monumental in his recovery, but I believe with all that I am that God was not only working in and through all of that, there were a slew of miracles all along his journey. What a blessing it is to be a part of this journey with my son. The lives he’s touched, the thousands of people he’s inspired……and he’s only 5 months old. We simply keep inviting Jesus to continue to work in and through our son’s life. May people hear the true gospel message through this journey, however that may unfold. Through all the good and the bad…to God be ALL the glory!

Isaiah 26:3-4
You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock.

#GoBeckett
#ODAAT

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

Jun 07 2013
2 Comments
Jonny

June 7, 2013

UPDATE (6/7/13)

As you may have noticed (in the photos I posted earlier today), I played a little guitar for Beckett again today. I say “again”, because I use to play for him a long time ago back when he was still on Ecmo (back in January), and shortly after. I wasn’t ever sure if I was allowed to do it when we got moved to St. V’s Women’s Hospital from Peyton Manning, or even here at Riley…but I was recently told that if I play for him it would be really good for him developmentally to hear. Before, when I use to play for him, he wasn’t conscious, so I was never really sure if he could even hear me. I liked to imagine that he could, but I guess I’ll never really know. Anyways, it was fun to play for him. I know I posted a picture of him yawning while I played, but truly, it was really fun to watch him pan back-n-forth from my strumming hand to my other hand. He just watched intently and kinda kicked along. It was a closed session though, no nurses allowed. 😉 I really wouldn’t have cared who listened, but we had to shut the door because we are next to a room filled with a bunch of preemies, and we wanted to be sensitive to that (and, our room was packed out as well…it’s quite small).

Also…………WE ARE OUT OF ISOLATION! No longer do we have to wear the yellow garbs and purple gloves. Both his nasal swabs tested negative for MRSA (as we always wondered). This is sooo great! We can now (after washing our hands) just walk straight into his room and love on him, kiss on him, hug him (kinda)…it’s great!

And as you may be wondering (if you read yesterday’s post), Beckett is doing much better today. He has had no more PACs or SVTs. We spoke with Cardiology this morning and they did not seem overly concerned. Sure, the events of yesterday evening were not ideal, but being that it was so “short” AND he pulled out of it on his own without the additional assistance of medicine, they are just going to be “watching him closely.”

More good news:
The results of the UltraSound (checking on the clot in his leg) came back showing NO MORE CLOT! That’s fantastic news! Soooo…we are now sitting in Beckett’s room waiting to hear when Beckett will be heading down for his MRI (to check on the clot in his brain). I always called it an MRV in my previous posts, but they are calling it a MRI with Contrast here. It may be the same thing, it may be different….either way, this will show us if he has a clot or not. This would be fantastic to know if it’s gone!! Please pray for that to be the case.

Lastly, please pray for one more thing (among the many many other issues and requests). We think Beckett might be having Night Terrors. I know that kinda sounds “intense” or “exaggerated”…but our doctor actually did a little research today, and it appears that this may be the case. It’s not a huge deal, it just breaks our heart that he has been waking up often in a bloodcurdling cry.

That’s about it. We’re doing ok. No, we’re doing good! We are still very pleased with his progress, even though we have some minor hiccups along the way. One step at a time. To God be the Glory!

#GoBeckett
#ODAAT

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

Jun 07 2013
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Beckett, Jonny

June 7, 2013

#Bored #NotImpressed #AreYouDoneYet? #IsItNapTime? #KeepTrying #WheresMyToys? #CanWeDoSomethingElseNow? #ThanksSon #ConfidenceBooster #BiggestFan

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Jun 07 2013
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Beckett, Jonny

June 7, 2013

#FreeEntertainment

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Jun 06 2013
3 Comments
Jonny

June 6, 2013

UPDATE (6/6/13)

Soooo….I was planning on writing this post about things like:
– I finally got a tour of the new facility
– Or, we had an ultrasound this morning looking to see if he still had one of his (two) clots in his leg (the other being in his head)
– Or, that he’s been fussy a lot lately (like the past 48 hours or so)
– Or, the fact that his VapoTherm got weaned today.
– Or, that they are gonna try to do an MRV tomorrow to check on the blood clot in his brain.

BUT, instead, I must post on our most recent undesired event. Besides the fact that both Leah and I woke up this morning with headaches that only got worse as the day progressed, just a few hours ago Beckett decided that we had been getting a little too used to this uneventful stretch of days/weeks. Sooo, here we go: Beckett had been kinda fussy the last 48 hours or so (as I’ve mentioned)…just not sleeping well, taking short naps, and suddenly irritable. This was the case again this afternoon, so Leah decided that she would hold him for a while to help encourage an opportunity for him to sleep well for an extended period of time. As observant as Leah always is, she noticed that Beckett was “throwing” what’s called PACs. She asked for me to go find a nurse and let them know. Apparently, PACs aren’t necessarily that serious, but as soon as the nurse showed up, in addition to a few doctors, he began to do something we haven’t seen since January and once in February. He began to do something called SVT. He shot his heart rate as high as 210, then back down to the 1-teens. He did it a couple times, and thankfully it was when the doctors were here and we were even able to get a print out of it for cardiology. It was very scary, to say the least. You could tell that Leah and I were trying to stay calm, but our adrenaline was pumping and our heart rates were definitely increased. Eventually they wheeled in a EKG machine to gather a more accurate read of his heart rate. We got some good print outs and then just waited for Cardiology to arrive. Once they came, they reviewed the print outs and basically mentioned that they will be watching him closely. Turns out, our nurse this evening has only had Beckett once, and over a month ago. She seems very skilled, but she will have her hands full this evening, and there is always natural concern going “home” after an event like this.

We’ve yet to eat dinner, headaches are now only getting worse, and we know that he still has many more tests to go (an x-ray, additional blood gasses, etc).

This is scary (naturally), but these are certainly the times to challenge our faith and decide (or live out) if we truly believe what “we’re preaching”.

Isaiah 43:1, 2
But now, O Jacob, listen to the Lord who created you. O Israel, the one who formed you says, “Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.

#GoBeckett
#ODAAT

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

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