Happy Mother’s Day, Leah!
You’re Amazing!
— with Leah ‘Whiteley’ Rupp atRiley Hospital for Children at IU Health.
Heart of Beckett
The Journey of Beckett Jude Rupp
Author Archives: Heart Of Beckett
May 11, 2013
UPDATE (5/11/13)
Today’s been another good day! Beckett is still up a little on his Oxygen Support, but he truly is doing well. In fact, I’m personally quite pleased with how well he appears to be handling this wean from yesterday. He’s slept a lot today and had some quality time with Mommy and even my parents. We had more visitors again today (which we always appreciate), and enjoyed showing him off once again (though he was asleep the entire time).
I was reminded of Habakkuk 3 today that even though our individual “situations” may not be ideal or desired, God still deserves our praise. See verses 17-18:
“Though the fig tree should not blossom, nor fruit be on the vines,
the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the Lord; I will take joy in the God of my salvation.”
But even more intriguing is verse 19 which says:
“God, the Lord, is my strength; he makes my feet like the deer’s; he makes me tread on my high places.”
I must point out that God prepares our way, he “makes my feet like a deer’s”. As in, we are ready for the trials to come (even if we don’t feel like we are). But all the more interesting are the intentional words used that our Lord “makes me tread on my high places.” Again, I was reminded today that these “high places” are dangerous. Though we are blessed with a “view” that many aren’t privileged to see, these high places can be scary and require a trust in the Lord and his sovereign plan that he has specifically prepared us for, maybe for our good, maybe for someone else’s, maybe both. So, we continue to praise the Lord for the events and situation at hand, reminding ourselves and one another that God is good, he is ALWAYS in control, and we put our trust and Beckett’s life in his hands and his care…not ours. We will commit to being a good steward of all that the Lord has given us for however long we have it. To God be the glory!
#ODAAT
#GoBeckett
— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.
May 10, 2013
UPDATE (5/10/13)
This morning began with me approaching Beckett’s room to see his overhead lights turned on full blast and nearly 20 people gathering in front. This is rarely a good thing in the ICU world, however I was affirmed that the Neonatology physicians and the Cardiology teams happened to converge and “round” at Beckett’s room at the same time (#Coincidence). A case was made that they would like to wean Beckett’s fentanyl again today another .25. The rationale was that Beckett’s primary physicians were here all day today, in which I had to politely remind them that if we see any signs of withdrawal it will most likely not be today, but tomorrow and Sunday when Beckett’s primaries won’t be here. However, we decided to proceed with the wean and an understanding to not wean anything this entire weekend, but simply reevaluate everything once again on Monday. They did decide to increase his methadone to help offset his fentanyl wean. That definitely helped me feel a little bit more comfortable weaning him again today…but we’ll see how this weekend will play out now. :-\ If you’ve been keeping track, you’ll note that Beckett is now down to .75 of fentanyl…we want 0. 😉
He has also been up on his FIO2 today (which is his oxygen support we’ve been talking about). It actually got as high as 70 today….that’s not good. This has been a constant hangnail throughout the last 2-3 weeks, and something that has kinda confused all the doctors. His support is high, but not scary high. However, his level of oxygen support is on the brink of “scary high”. This is why Leah and I get so nervous about weaning his fentanyl…we’ve seen this before. His oxygen support will slowly rise, everybody will say “they are watching it”, and before you know it he’s getting reintubated. We are truly on the same team as the doctors in that we surely hope that is not the case and he’ll be just fine, but we are nervous he might be getting underestimated once again.
His crit was low(ish) again today, so they just got done transfusing him again. Beckett has always responded well to blood transfusions, so we hope that is yet the case once again.
I failed to mention yesterday that his scalp IV was removed that other terrible day earlier this week and was replaced by a specific PICC line called dual lumen (or IR) PICC line. This is significant because I can rub his head once again. I always loved doing that because of how much you could tell he loves it. So, as “Barbie girl play-time” as this sounds, I brushed his hair this evening, and it was quite nice. You could just see in his eyes how much he enjoyed it, and it’s definitely nice to be able to do something tangible to him that he so evidently enjoys.
He also did “tummy-time” again today (I’m amazing at all these new words and phrases I’m learning, it’s quite humorous to me). He hasn’t really enjoyed sleeping on his stomach much over the past month or so, but the nurse today must have had the magic touch. He slept for a while, and nearly high-satted the entire time.
Lastly, we had some surprise visitors again today. Brenda, one of Beckett’s previous Respiratory Therapists from St. V’s showed up today and couldn’t help but comment on how big and good Beckett is looking. He’s starting to get a nice double-chin like his Dad. It was great to see her again. Then another friend of my family (from my hometown), Sheri Brodbeck, stopped by and said she had to see this popular baby in person. It was certainly a pleasant surprise, and fun to show Beckett off to her as he just starred right at her the entire time all wide-eyed with those big brown eyes. It was funny.
Whelp, that’s it. In summary, it was a fairly decent day. Yeah, he whimpered here-n-there, but all-n-all, we can count this as a “good day.” Bless you all, and a continual thanks for all the prayers and support. It’s astounding.
Also, please be praying for Leah’s coworker who has recently received news that her unborn baby may not survive. She has been a huge encouragement to Leah and prays for Beckett daily. The least we can do is pray for her, her family, and her unborn child. Miracles still happen, so let’s surround them with prayer.
#ODAAT
#GoBeckett
— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.
May 9, 2013
UPDATE (5/9/13)
Whelp, I made it…somehow. It’s Thursday night, and after 3 long days of 3 seperate presentations, a 9 page paper, another reflection paper, and 2 group project papers, I’m done……almost. I was granted favor throughout the semester to adjust my “due dates” for each assignment, as professors could ethically provide leniency there, but not necessarily on how they grade the assignments. Though this was a substantial accommodation, it seemed to unintentionally work out that “everything” came due for me within these past few days. Thankfully, I not only feel like I completed the challenge, I truly feel that I did well. Many may roll their eyes at this statement, but this happened truly by God’a grace. Now, to reference my addendum earlier in saying that I’m “almost” done, I now have to submit the final draft of my first 3 chapters of my Thesis, asap. This was technically due over a week ago, but I took advantage of some extended grace and will be completing this sometime throughout this weekend.
You may be wondering why I’m talking about “me” so much in this post when our blog is intentionally titled “HeartOfBeckett”, but I couldn’t help but share God’s faithfulness towards me throughout this entire semester through encouraging friends, family, my cohort, professors, and certainly my wife. It has truly felt like a huge sense of accomplishment. I actually feel like I just graduated, or something, but that’s certainly not the case as I have yet another year left. :-] This semester has been brutal when it comes to my school work, and there were many times I felt like I couldn’t press on (which I genuinely think was understandable and realistic), yet somehow it is now behind me and I know a huge motivational factor was laying right there in a crib just over an hour drive away. It’s amazing what kind of inspiration you can glean from difficult situations with a proper perspective.
(Disclaimer: I did not always have a proper perspective…but I tried.)
With that being said, I don’t have much to report concerning Beckett. I’ll begin by saying that I just found out he’s over 12 pounds!! That’s fantastic news, as we’ve mentioned earlier that we really need him to continue to gain weight in order to be a proper candidate for the second surgery (merely one of many factors). Leah and I just “passed the baton” once again as she is planning on working tomorrow. She said that he played a lot this morning and then napped for a LONG time (like, Noon to 5:00pm, or something like that). He kinda spit up earlier this evening (after Leah left) and gaged on it which made him drop his heart rate and I can’t help but react with wide-eyes attempting to calmly beckon for our nurse. He truly was ok, but he worked himself up and has no reserve for even the simplest issue. He cried for a while and sweat up a storm…and just after he got a bath too. He ended up falling asleep in my arms (see recently posted pic) and it just felt “right”, and how I truly needed this day (and week) to end.
Thank you Jesus for your many many blessings in our lives. We have so much to be thankful for.
….please heal my son.
— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.
May 9, 2013
“Sleepin’ like a baby!”
I love holding my son.
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
May 8, 2013
UPDATE (5/8/13)
It is amazing how different Beckett can be from one day to the next. Today was the complete opposite of yesterday, and I am truly grateful for that. I was told he was pretty upset early in the morning, but when I arrived he was awake and looking around. He fussed a little but was calmed down very easily. He was acting so much more like himself. The nurse and I were just talking to him and he was playing with his toys, lying so content in his bed. Then my mom walked up, which was a total surprise. She thought after yesterday I could use a friend, which was much appreciated. After playing for a while, Beckett got tired, and my mom patted him to sleep. Beckett woke up mid afternoon and was again pretty happy. My mom played with him for a bit, and I held him after she left. He slept until it was time for his next feeding. He got a bath tonight and was so calm during the whole thing, barely even crying when I washed his neck and under his chin, which he hates. One of the neonatologists even came in to play with him during bath time because he was so happy. A friend of ours had brought me dinner, so she was able to be a part of bath time and then hold him after. I rocked him to sleep and he slept so well. He woke when I put him back in his crib and then fought sleep for over an hour. I picked him up multiple times to rock him and he would fall asleep, only to wake back up when I laid him down. He did start to get upset, most likely just because he was tired. Eventually the nurse took over so I was able to come home.
So today was really a good day. Of course he fussed a little here and there, but that is normal. The big change of the day was they weaned his Fentanyl. They did increase his methadone to accommodate the wean, so we are praying Beckett doesn’t even notice. We will see. We are getting so close to him being off this drip completely and we are hopeful it will be a whole new ballgame when he isn’t dealing with that. Beckett’s oxygen is still up, but we are also hopeful that as he settles down from being so angry so often, as well as changes in some of his other meds, that will sort itself out. Perspective is everything, and I am chalking today up as a win. Thank you Jesus for giving us a better day. We pray we continue in this direction.
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
May 7, 2013
UPDATE (5/7/13)
Let’s start with yesterday. Beckett spent most of the day needing to be held. He did have a little time where he was content in his bouncy seat, but other than that he was either unhappy or held. Thankfully there are plenty of people around who love him and are willing to take a turn. They decided not to make any changes yesterday as he had had a difficult weekend. He did have PT, and when she tried to make him do tummy time, he let her know he was not going to have any part of that. He had started the morning on 49% oxygen but had worked up to 62% throughout the day. It is just so taxing when I sit and watch as he climbs higher and higher so quickly and then takes days to come back down again.
Yesterday my mom and I did have the privilege to have lunch with some very special friends form St. Vincent’s. It was such a gift to be able to go downtown and just be away from the hospital with friends and family. I was also really glad they were able to see Beckett and he was happy when they visited. He has gotten so big since they last saw him, and it is always fun to see people’s reactions to how much he has changed.
So yesterday was yet another day of spending quality time with my son in my arms, and having my mom there for the majority of the day. I am so grateful for her and for the break from constant holding and rocking. After all, I am human and my arms get tired. Plus we do crosswords and it almost always ends in hysterics, which is needed under the circumstances.
When you look at the big picture, yesterday was a decent day. Today however, was much more difficult. Beckett needed to have a new PICC line put in for two reasons. One, the line he had was old; he’s had it since February. Two, with the frequent blood draws they wanted a second lumen so they don’t have to poke him as much. I am on board with that! Since the septic workup from Sunday has come back negative so far, they felt comfortable going ahead with the procedure today. They were hoping to be able to insert a wire into the existing PICC, pull the old one out, and then thread a new one over the wire. This would allow Beckett to not be poked for a whole new one. So this morning we got him all ready and headed down to interventional radiology. The trip did not go so well. Beckett screamed and cried the entire way, and I could not get him to calm down. In fact, his mouth filled with so much saliva from crying that he was having a hard time breathing around it. He was sweating profusely and his color was draining from his body. Once down there I was going to pick him up to calm him, but I had to go to another room to sign consent. While I was sitting in the room, a nurse rushed out and said “they need help in 6”, the room I knew Beckett was in. Of course now my mind is going to all kinds of horrible places. Eventually an x-ray tech came in to ask me a few questions and I just had to ask if Beckett was ok. He said he was all right and that the nurse was holding him. He told me it was just taking a little while to calm him down. They let me back in the room and Beckett was sleeping on the nurse’s shoulder. He looked so limp, and he was completely flushed and pale. He looked pretty bad to be honest. They had turned up the flow on his VapoTherm to help him recover and his oxygen saturation was within range. They called the Nurse Practitioner down to determine what the next step should be. It was clear Beckett was not going to lie calmly on the table during the procedure, so they decided to give him some Ativan. They called upstairs and a nurse ran it down. When they went to give it, his scalp IV was no longer working. Ok, give it in the PICC line. Well then that didn’t flush very well, but they were able to get it in. Then they realized they could not do the procedure like planned because it would require disconnecting his IV drips for a period of time and that was not an option. That meant putting in a whole new one. So then I had to leave and sign consent for that. When I came back all of Beckett’s pumps were beeping and they couldn’t get them to run right. That meant they weren’t sure if his PICC was even working or if he was getting his IV drips. So they had to start a new IV. The nurse practitioner put an IV in his scalp, and thankfully got it on the first try. But, of course this made him really mad and the crying and sweating began all over again. He was so angry and looked pretty horrible. I was finally able to calm him with a combination of patting his butt and holding in his pacifier. They said it was a good sign that he had enough energy to suck on his paci. I couldn’t hold it in any longer and I began crying. The nurse realized I was struggling and asked if I felt we should continue (she had already informed me they were being very conservative with him and wouldn’t do anything they thought would be unsafe). I decided we had already gone through all this trouble, and I didn’t want to put him through it again so just do it while we are already here. The nurse agreed and then prayed with Beckett and me. It came time for me to leave, so I went upstairs to take care of a few things. As I headed back downstairs to wait, I was rounding a corner when I heard a baby crying. I instantly knew that was Beckett’s cry and turned back around. Sure enough they were heading through the NICU doors. They were almost running, and I could see the Nurse Practitioner was carrying him in her arms. They said he had done great through the procedure (respiratory therapy had patted his butt the entire time) and it had only taken about 15 minutes. It was not until they transported him that he became angry again. When I got into the room I could see his limp body hanging in her arms. Then they realized his scalp IV was bleeding. It was all over his head and down his face into his ear. He had sweat it out. They didn’t need the IV any more, thank God it had lasted for when they did, but all his drips were running through it. It was then a rush to hang all new fluids and run them through the new PICC line. Thankfully multiple nurses helped out and it got taken care of rather quickly. They had let me hold him as soon as they got back in the room, and he was asleep instantly. I was so grateful just to have him back in my arms. I held him for a few hours and seemed to be recovering nicely. They had to turn his oxygen up to 70% but his saturations were gradually getting higher and higher in his acceptable range. I was finally able to lay him in the bed and go have lunch at 4pm. I also had the privilege of trying to explain this to Jonny as he is back home in Upland, never an easy thing to do.
When I came back to the room I spent some time tidying up since it looked like a bomb had gone off. It was quite comical how much of a mess we had made. Then around five Beckett woke up with a little cry and then calmed right down. He looked so much better and spent over an hour laying in bed, playing with his toys and sucking on his pointer finger, which is his new favorite thing to do. After almost an hour and a half he just closed his eyes and gently fell asleep. I have not seen him do that in over a week. Then again this evening he woke up pretty content and played while we did his care and gave him a bath. Then I rocked him to sleep. When I put him back in bed to leave, he woke up but was perfectly happy just playing with his hands. It was like a completely different baby from 10 hours earlier. I could not have been more grateful. As I was leaving she had also worked him down to 60% on his oxygen. So he was making progress. Today was definitely draining, but the evening was almost back to normal Beckett behavior that we haven’t seen for quite some time. It was such an encouragement after how much he struggled this morning. I cannot believe how brave he is, nor how he continues to have such strong will to live. Don’t get me wrong, I am extremely grateful that he is a little fighter; I am simply amazed at his strength. I pray he continues to have it in spades.
Jonny and I read the devotional from Jesus Calling every morning, and today’s was all about trust and not giving into fear. It could not have been more fitting, and as I waited for Beckett to get out of the procedure I kept reading it over and over. This day went exactly as God had planned, and he will bring even more good out of it. He continues to be in control, and to show his sovereignty over our journey. To His name be all glory and honor and praise!
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
May 6, 2013
UPDATE (5/6/13)
So it is almost midnight and I am just getting home from the hospital. Therefore, I will simply say, overall, Beckett has had a decent day. Still going through withdrawals and crying and angry more than usual, but on a whole, a little better. I will fill you in on all the details tomorrow.
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
May 5, 2013
UPDATE (5/5/13)
Today began with me walking up to Beckett’s room and noticing his Oxygen Support as high as 67%. That’s not good. The nurse went on to explain that she had been pricking him for a while to gather a bunch of different blood culture labs. So I figured that is what can explain away his high Oxygen Support….nope. Beckett’s nurse explained that she had to increase it before all that poking even began. This was obviously very concerning. Now I have the privilege to text this lovely information to Leah while she is at work. Both her and I continued to grow anxious for the direction this is trending. The doctors are now speculating that maybe Beckett has another infection (we won’t hear back of those results for a few days). He doesn’t look like he has an infection…but when X-Rays come back looking normal, multiple Echos look fine and numerous blood gases appear acceptable…we now seem to be grasping at straws. Clearly the assumption still exists that this could be related to his withdrawals, but I think the doctors are just being cautious….which we appreciate.
Sooo, its been a long day. I tried to get some schoolwork done during his echo and when a friend came and held Beckett for a few hours today. But I still struggle trying to focus while in a hospital, or in my son’s room while machines are beeping and my mind is anywhere else but on grad school work.
The evening is unfortunately ending with me typing out this update while listening to my son hysterically cry as they prick him again for some specific (and difficult-to-draw) blood gases. In fact, it took 3 different nurses poking him until they could actually get it. It just breaks my heart and makes me want to do anything I can to alleviate my poor little son’s pain. It makes your mind start thinking thought of “hasn’t he been through enough?”
Thank you for the prayers. It’s yet another day….but another day WITH my son!
To God be all the glory! Lord, please heal my son!
#ODAAT
#GoBeckett
P.S.
He’s now 23.4 inches and 11.7 pounds! Yay!
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
May 4, 2013
UPDATE (5/4/13)
I’m not even quite sure how to begin this post. Beckett is “ok”, but he is just withdrawing soooo hard, and it’s soooo heartbreaking and draining….and to be quite honest, it’s even scary. Leah and I keep saying, “we’ve been here before”…and it wasn’t something we were eager to return to. Where it gets so scary is that Beckett is often too underestimated and often treated like a “normal” baby when it comes to doses of medicine, or wean schedules, or even his irritability. In fact, one time a doctor questioned my concern of his withdrawal to “normal 4 month old baby stuff”. And I understand that he may exude signs of normal baby behavior, but not necessarily when he’s been weaned off of nasty narcotics and demonstrating abnormal behavior…even for him. Either way, and like I said before, Leah and I just get a little “on edge” when heavy doses of deja vu begin to set in. We begin to see his oxygen support continue to rise, his heart rate then follows that same trend, and before you know it we are “beyond the point of no return” and the nasty word “REintubate” creeps its way back into everyone’s lexicon. That would be a huge step backwards, and we keep begging for the physicians to continue to brainstorm ideas that aren’t necessarily “textbook”. For example, the pharmacist’s original plan was to wean Beckett off the fentanyl .25 EVERYDAY. I remember thinking, please no! I had to advocate and request for at least an every-OTHER-day wean…which we were ‘t even able to stick with this past week. I think we actually only got 2 official weans in (as in, he’s down a full .5 from 1.75). And even that has been extremely difficult for Beckett to handle. This week confirms my pessimistic concern that we will definitely still be here (in the Hospital) for a while longer. I surely hope I’m wrong, but I’m concerned I am not.
Sooo, here we are…fighting right alongside of our son. Praying for healing, trusting in God’s sovereignty, and reaching personal limits quicker than ever before.
Exodus 17 has never been more applicable in our (and certainly Beckett’s) life. We feel the need and assistance of “Aaron and Hur” like Moses did when fighting the Amalek.
Exodus 17:11-13
11 Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. 12 But Moses’ hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun. 13 And Joshua overwhelmed Amalek and his people with the sword.
As stated in previous posts, we depend on The Lord for our strength. He DOES “give” us more than we can handle, and that reminds us of our complete and utter dependence on Him.
(Please reference the January 29th post: https://heartofbeckett.com/2013/01/29/january-29-2013-3/)
However, that support may come from others as well. We continue to welcome in the most selfless way we can the prayer and support from you all (as you have been so diligent and generous throughout this entire journey). Leah is back to work again tomorrow, I then leave for home tomorrow night when she makes the two hour drive back here to Indy. We are overwhelmed with the balance of immediate responsibities, let alone additional issues like our roof leaking at home, we now found out we have to replace our bathtub (cause its leaking), and we are receiving bills in the mail with 7 figures on it. But God is good, I KNOW he’s in control, and I’m genuinely trying to welcome the trials at hand, as these will only strengthen me, my wife, my family, and even my son! We are also not ignorant to the impact Beckett’s journey and story is having on so many others…many whom we’ve never even met before.
Thanks everyone. We truly love you all (and I don’t just say that because it seems like a nice way to wrap up a post). We are forever indebted to your care and support!
#ODAAT
#GoBeckett
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
Heart of Beckett 