The nurses helped Beckett make a card! — with Jonathan Rupp at St Vincent Womans Hospital.
Heart of Beckett
The Journey of Beckett Jude Rupp
Author Archives: Heart Of Beckett
February 14, 2013
Happy Valentines Day!
Love, Beckett
February 13, 2013
I think it is time to really sit down and be honest. Probably because I feel you deserve it. I am not going to pretend for one minute that any of this experience with Beckett has been easy. In fact, is has been extremely hard. I would not wish this on my worst enemy. If someone asked if I would do this again, knowing now all God has used Beckett for, I don’t know that I could say yes. This is painful. I don’t know if I can even effectively put into words how devastating it is to be told your baby is normal and healthy one minute and the next minute find out he has a life-threatening heart defect and will need to undergo multiple surgeries over the next few years, all the while being told it is a very difficult road with no guarantee how it will end.
I want to explain how we found out Beckett had Hypoplastic Left Heart Syndrome for those who have not heard the story. It was not until 24 hours after Beckett was born that he began to have trouble with his oxygen level (praise God for 24 hours of enjoying a healthy baby!). Jonny and I had not slept for two days, so we decided to put Beckett in the nursery for the night. It was around eleven o’clock when they took him down and Jonny and I headed for bed. Within forty-five minutes the nurse came in and woke me. She told me the nurse in the nursery thought Beckett looked a little dusky around the mouth and decided to check his oxygen. She said it was lower than where they want it so the NICU doctor came to look at him and they were going to keep him in the NICU for a little while to observe him. She said she would come get me to go see him when they had him settled. No big deal right. She came back about half an hour later and said they weren’t quite ready yet. When she finally took me back it was about one in the morning. I walked in to see my son hooked up to monitors, IVs running, him crying wildly, and multiple people in the room. Clearly not just a little oxygen problem. They told me they were getting an x-ray, had drawn blood cultures, antibiotics were on hold in the pharmacy, and they were going to do an echo. The doctor informed me it could be pneumonia, a collapsed lung or possibly something else. I sat at his bedside trying to keep him from crying while they did the echo. The technician bluntly said to the doctor, with me right in the room, “well that’s an awfully small left ventricle”. Not exactly how I would have wanted to find out something was wrong. Dr. Cameron was the doctor that was there, and he used to work here in the NICU Beckett is currently in. He was therefore familiar with the condition and began to explain exactly what we had ahead of us. I immediately sent a nurse to wake Jonny and broke down in tears. I sat and watched as they put IVs in his belly button, started him on medicines, intubated him and more. All this took place over a few short hours. Jonny called our parents, I was discharged from the hospital, and we followed an ambulance for the longest two-hour drive of our lives. So there it is. Our world was turned upside down in a matter of hours.
So back to the reality of what this has been like. I think my pain has been compounded by the fact that I have medical training, yet there is absolutely nothing I can do for Beckett. It is almost unbearable to know you can do nothing for the life that depends on you for everything. I have felt almost every emotion humanly possibly. I have shed more tears these last weeks than in my entire 27 years leading up to this point. I have been frustrated when I see healthy children. I have sat in waiting rooms praying they would simply tell me my son was still alive. I have been given news on multiple occasions of the reality that my son might not live. I have wrestled with God over and over. I have pled on my knees before His throne to give Beckett life. I have made promises to God, as if they would make a difference. I have watched my son endure more pain than most will experience their entire lives. I have sat helplessly at his bedside. I have seen his body lifeless and limp, waiting for something as simply as a gentle squeeze of his hand on my finger. I have waited for results of potential brain damage. I have felt guilt for sleeping at night while Beckett lies in bed fighting for his life. I have struggled with feelings of leaving Beckett alone. I have questioned if he knows how much we love him. I have doubted. I have had to surrender my son’s life, acknowledging that this if far beyond our control. But…
I have never been alone. I have never prayed more fervently. I have never known such peace. I have never felt God’s presence in a more tangible way. I have never loved more deeply. My faith has increased exponentially. I have seen first hand the miraculous power of God. The body of Christ has surrounded me. I know the true meaning of family and of sacrifice. I have let go of my pride. I have fallen more in love with my husband. I have held my son. I have seen him smile. I have changed his diaper. I have held his hand. I have dressed him in his clothes. I have given him a bath. I have seen his progress. I have been blessed beyond measure. God has granted me the strength to make it through each day and an attitude to never ask why.
This has been hard. This IS hard. But nothing has been outside of God’s plan for Beckett, and for me. Beckett’s life is a testimony to His faithfulness. Jonny and I have not made it this far by any measure of our own. It is the saving power of God within us. So yes, this is hard. Every day is hard.
But through it all, Beckett’s heart beats!
https://heartofbeckett.com/
I want to explain how we found out Beckett had Hypoplastic Left Heart Syndrome for those who have not heard the story. It was not until 24 hours after Beckett was born that he began to have trouble with his oxygen level (praise God for 24 hours of enjoying a healthy baby!). Jonny and I had not slept for two days, so we decided to put Beckett in the nursery for the night. It was around eleven o’clock when they took him down and Jonny and I headed for bed. Within forty-five minutes the nurse came in and woke me. She told me the nurse in the nursery thought Beckett looked a little dusky around the mouth and decided to check his oxygen. She said it was lower than where they want it so the NICU doctor came to look at him and they were going to keep him in the NICU for a little while to observe him. She said she would come get me to go see him when they had him settled. No big deal right. She came back about half an hour later and said they weren’t quite ready yet. When she finally took me back it was about one in the morning. I walked in to see my son hooked up to monitors, IVs running, him crying wildly, and multiple people in the room. Clearly not just a little oxygen problem. They told me they were getting an x-ray, had drawn blood cultures, antibiotics were on hold in the pharmacy, and they were going to do an echo. The doctor informed me it could be pneumonia, a collapsed lung or possibly something else. I sat at his bedside trying to keep him from crying while they did the echo. The technician bluntly said to the doctor, with me right in the room, “well that’s an awfully small left ventricle”. Not exactly how I would have wanted to find out something was wrong. Dr. Cameron was the doctor that was there, and he used to work here in the NICU Beckett is currently in. He was therefore familiar with the condition and began to explain exactly what we had ahead of us. I immediately sent a nurse to wake Jonny and broke down in tears. I sat and watched as they put IVs in his belly button, started him on medicines, intubated him and more. All this took place over a few short hours. Jonny called our parents, I was discharged from the hospital, and we followed an ambulance for the longest two-hour drive of our lives. So there it is. Our world was turned upside down in a matter of hours.
So back to the reality of what this has been like. I think my pain has been compounded by the fact that I have medical training, yet there is absolutely nothing I can do for Beckett. It is almost unbearable to know you can do nothing for the life that depends on you for everything. I have felt almost every emotion humanly possibly. I have shed more tears these last weeks than in my entire 27 years leading up to this point. I have been frustrated when I see healthy children. I have sat in waiting rooms praying they would simply tell me my son was still alive. I have been given news on multiple occasions of the reality that my son might not live. I have wrestled with God over and over. I have pled on my knees before His throne to give Beckett life. I have made promises to God, as if they would make a difference. I have watched my son endure more pain than most will experience their entire lives. I have sat helplessly at his bedside. I have seen his body lifeless and limp, waiting for something as simply as a gentle squeeze of his hand on my finger. I have waited for results of potential brain damage. I have felt guilt for sleeping at night while Beckett lies in bed fighting for his life. I have struggled with feelings of leaving Beckett alone. I have questioned if he knows how much we love him. I have doubted. I have had to surrender my son’s life, acknowledging that this if far beyond our control. But…
I have never been alone. I have never prayed more fervently. I have never known such peace. I have never felt God’s presence in a more tangible way. I have never loved more deeply. My faith has increased exponentially. I have seen first hand the miraculous power of God. The body of Christ has surrounded me. I know the true meaning of family and of sacrifice. I have let go of my pride. I have fallen more in love with my husband. I have held my son. I have seen him smile. I have changed his diaper. I have held his hand. I have dressed him in his clothes. I have given him a bath. I have seen his progress. I have been blessed beyond measure. God has granted me the strength to make it through each day and an attitude to never ask why.
This has been hard. This IS hard. But nothing has been outside of God’s plan for Beckett, and for me. Beckett’s life is a testimony to His faithfulness. Jonny and I have not made it this far by any measure of our own. It is the saving power of God within us. So yes, this is hard. Every day is hard.
But through it all, Beckett’s heart beats!
https://heartofbeckett.com/
— with Jonathan Rupp at st Vincents womens hospital.
February 12, 2013
UPDATE (2/12/13)
Beckett has had a good day. He had occupational therapy again today so lots more stretching. I have been working on them with him throughout the day and he is doing better than he was even this morning. He even moves his arms and fingers through increased range of motion all on his own. The therapy really seems to wear him out, but he consistently tolerates more and more.
It is really hard to believe Beckett is almost seven weeks old. He gets more alert and interactive each day. He is so attentive to those around him, especially if you talk to him, which he totally loves. He follows me all around the room with his eyes. He has such a little personality. He scowls at the nurses when they come in. He definitely knows they are going to mess with him. He gives them a “what do you think you are doing” look, and they all laugh at it. He spends a lot more time awake. He loves to be held and he loves his vibrating bouncy seat. He does not love having his diaper changed and he does not love bath time.
As you may have read earlier, Beckett was dressed for the first time today. Yeah for cute clothes! My mom brought down lots of little sleepers and comfy clothes so he has lots of options. When I came in to the room after shift change, the nurse even had him wrapped up in a blanket we brought. It seems so normal in such not normal circumstances.
Beckett has also been on the higher end of his oxygen for most of the day so they are most likely going to decrease his vapotherm in the morning. This is one step closer to having a simple nasal cannula. They also haven’t decreased his methadone in a few days, so I wouldn’t be surprised if that happens tomorrow as well. That means a potentially difficult day. We pray for Beckett’s continued progress, but also that is will be as easy for him as possible; progress with little to no pain or discomfort, and easy adjustment to change in treatment. We continue to take it one day at a time, and are grateful for each day we share with our son, relishing in the simple joys as well as the big ones. We continue to follow where God is taking us on this journey and look forward to all he has in store for us. https://heartofbeckett.com/ — with Jonathan Rupp at St Vincent Women Hospital.
February 12, 2013
#BitterSweet #Technology
February 12, 2013
Good morning! Woke up this morning and still had a headache but praise the Lord it has subsided. Yesterday was a very busy day for Beckett. He has OT in the morning, so lots of stretching. Then he had PT in the afternoon, so lots more stretching. All this is on top of normal care he receives all throughout the day. He tolerated it pretty well. This is very important as he has some decreased range of motion and tight muscles from being immobile for so long. We now stretch him throughout the day to help, as well as get him up and out of bed as often as we can. This helps both his movement and his lungs. This morning I walked in to the room to find Beckett in clothes. One of his respiratory therapists said she couldn’t take it any longer and went and picked him some outfits from their supply. It is amazing how something so simple can make him look so different. He looks just darling. I am so excited to get some of his clothes from home now that he can wear them! He also already had OT this morning. Now he is tuckered out and sleeping peacefully. Praying for restful sleep for him so his body can continue to heal and grow!! www.heartofbeckett.com — with Jonathan Rupp at St Vincent Womans Hospital.
February 11, 2013
Well, I’m home safe-n-sound…but “wifeless”. I just spoke with Leah ‘Whiteley’ Rupp and she has a pretty nasty headache. She’s just going to go to bed tonight and do an Update for everyone sometime tomorrow morning(ish). Beckett is doing well. Lets hope and pray that we all have a restful and peaceful night! Goodnight.
— in Upland.
February 11, 2013
UPDATE (2/11/13)
I’ve been playing a ‘mean joke’ on Leah lately. Honestly, its not a ‘joke’, but she gets upset with me because it makes her cry each time. Let me explain: we begin each morning together (when I am able to be down here with them) doing devotions. Our devotions involve the reading of some scripture together, we read the devotional ‘Jesus Calling’, and my new addition of Leah’s journal entry 1 month ago from today’s date. This new addendum inevitably evokes emotion for the both of us. It’s been a great reminder, though, of just how far we’ve come already.
Beckett is doing well. He has busy days of therapy, adjustments of medications, adjustments of VapoTherm settings, in addition to quality time with us (the favorite part of his day! ;-)).
I am, unfortunately, heading back home later this evening for class in the morning. You would think that by now maybe this would be getting a little easier……nope. Just as hard each time, and I’m pretty sure I’ve cried each time. But this is our reality, and we will approach it one day at a time. Please pray for Leah, however, as she will be here by herself for the next few days.
Thanks everyone for following so closely. We certainly ‘feel the love’! Stay tuned for further updates to come from Leah these next few days.
I’ve been playing a ‘mean joke’ on Leah lately. Honestly, its not a ‘joke’, but she gets upset with me because it makes her cry each time. Let me explain: we begin each morning together (when I am able to be down here with them) doing devotions. Our devotions involve the reading of some scripture together, we read the devotional ‘Jesus Calling’, and my new addition of Leah’s journal entry 1 month ago from today’s date. This new addendum inevitably evokes emotion for the both of us. It’s been a great reminder, though, of just how far we’ve come already.
Beckett is doing well. He has busy days of therapy, adjustments of medications, adjustments of VapoTherm settings, in addition to quality time with us (the favorite part of his day! ;-)).
I am, unfortunately, heading back home later this evening for class in the morning. You would think that by now maybe this would be getting a little easier……nope. Just as hard each time, and I’m pretty sure I’ve cried each time. But this is our reality, and we will approach it one day at a time. Please pray for Leah, however, as she will be here by herself for the next few days.
Thanks everyone for following so closely. We certainly ‘feel the love’! Stay tuned for further updates to come from Leah these next few days.
— with Leah ‘Whiteley’ Rupp at St Vincent Womans Hospital.
Benefit Dinner & Concert in Gaylord, MI
In Gaylord, Michigan we have been following Beckett’s story because Uncle Joshua and Aunt Julia live up here with cousins Abigael and Brayden. We want to do our part to help so we’ve created a benefit dinner and concert on Friday night Feb 22nd from 5-8 pm at the Gaylord E-Free church. If everything goes as planned, we might even get to see a live streaming video of Beckett and his parents! All of us here have been continually praying for this miracle baby, and it is exciting to celebrate his life in this way. GO BECKETT!!
February 10, 2013
UPDATE (2/10/13)
Last night we didn’t leave the hospital until nearly midnight. Beckett was doing ok, but he seemed to be breathing fairly quickly. I decided to ask the nurse about it, and she decided to have the doctor look at it. They didagree that it was certainly too fast, but that they will monitor it. As a result, they ordered another X-Ray for the morning to see if he was accumulating any additional fluid around his lungs.
The Good: The pleural affusion (the extra fluid in his chest) has decreased.
The Bad: He has a little bit of fluid on his lungs.
They are going to increase his Lasix (which is a diuretic and pulls of the fluid). This isn’t really a step backwards or anything, but rather an update of his progress.
As mentioned before, Leah is on maternity leave. Though it is unfortunately unpaid, we have received word that they have extended her leave. We aren’t exactly sure for how much longer, nor do we want to take advantage of their grace. Moreover, our health insurance deductible is paid through her paycheck. So we are working through those details….but we’d like to report this as a praise overall. Though there are some financial hiccups in there, Leah is blessed to work for great and understanding employers.
Lastly, I wanted to take a moment and flesh out my theology on prayer. I mentioned in an earlier post that this, among many other things, was something I couldn’t shake from my mind. How then should we pray? Obviously the Bible speaks pretty clearly on prayer, especially with Jesus instructing us how exactly to do it in Matthew 6. How does this translate to my life. Here is what I’ve come up with. Though I strongly believe I have not pioneered some new way of praying, I also haven’t stolen this from anyone other than what I see in scripture and how best I know how to practically apply it to my life.
Through this journey my prayer life, along with many of yours, has grown (one of many blessings from all this). Questions arise like:
Why do we pray?
or
Why do I ask for others to pray?
I don’t believe that The Lord waits until he receives a particular number of people prayer before he’ll answer in our favor. It’s not like we need 750 people praying for Beckett for him to be healed, and if we only hit 749, God won’t heal our son. So again, I asked…how does it work? That’s a question I don’t want to attempt to answer in this post. But I will explain HOW I pray (for those of you still reading this post).
I don’t believe it is ‘wrong’ to request and ask the desires of our heart. However, I’m learning how finite I am, and how great He is! Example in scripture of The Lord working out amazing plans through difficult circumstances:
1) Joseph. Sold into slavery. Imprisoned. Yet became Second in command next to Pharaoh.
2) I’ve referenced Job before and
3) Abraham with his son Isaac.
God has already used Beckett in ways that we could never have imagined, yet in my weakness I feel as if I could somehow have had a say in all this before it happened over a month ago, (even knowing what I know now) I would still decline to go through all this agonizing pain once again. So I slowly begin to learn to pray to align my desires to the Lord’s will rather than ask for the Lord’s will to align with my desires. With that being said, I’ll try to wrap up now.
1) I pray for the desires of my heart (‘Please continue to heal my son, God’), but as an act of transparency, sincerity and honesty of my feelings and desires.
2) Next I pray for the Lord’s will to be done (Matthew 6:10) as an act of trust and respect to my Lord.
3) Lastly, I ask for The Lord to work in my heart for peace of whatever the outcome may be….his good, pleasing and perfect will (Romans 12:2). This is clearly the most challenging prayer, but evokes sanctification and a necessary step in my prayer life.
I hope that helps or was of some value to you. This mindset has really helped me pray what I believe is a pleasing, sincerely and effective prayer.
Love you all (and I mean that, even if we’ve never met). Thank you for praying for my son. We’ve come so far, and I believe the Lord has great plans for my son’s life.
Oh, and if you get the chance, check out Beckett’s blog to find ways to get involved. The Benefit Concert will be awesome, and I’m so thankful to everyone who has helped make this happen. We are forever grateful to you all!
https://heartofbeckett.com/
Last night we didn’t leave the hospital until nearly midnight. Beckett was doing ok, but he seemed to be breathing fairly quickly. I decided to ask the nurse about it, and she decided to have the doctor look at it. They didagree that it was certainly too fast, but that they will monitor it. As a result, they ordered another X-Ray for the morning to see if he was accumulating any additional fluid around his lungs.
The Good: The pleural affusion (the extra fluid in his chest) has decreased.
The Bad: He has a little bit of fluid on his lungs.
They are going to increase his Lasix (which is a diuretic and pulls of the fluid). This isn’t really a step backwards or anything, but rather an update of his progress.
As mentioned before, Leah is on maternity leave. Though it is unfortunately unpaid, we have received word that they have extended her leave. We aren’t exactly sure for how much longer, nor do we want to take advantage of their grace. Moreover, our health insurance deductible is paid through her paycheck. So we are working through those details….but we’d like to report this as a praise overall. Though there are some financial hiccups in there, Leah is blessed to work for great and understanding employers.
Lastly, I wanted to take a moment and flesh out my theology on prayer. I mentioned in an earlier post that this, among many other things, was something I couldn’t shake from my mind. How then should we pray? Obviously the Bible speaks pretty clearly on prayer, especially with Jesus instructing us how exactly to do it in Matthew 6. How does this translate to my life. Here is what I’ve come up with. Though I strongly believe I have not pioneered some new way of praying, I also haven’t stolen this from anyone other than what I see in scripture and how best I know how to practically apply it to my life.
Through this journey my prayer life, along with many of yours, has grown (one of many blessings from all this). Questions arise like:
Why do we pray?
or
Why do I ask for others to pray?
I don’t believe that The Lord waits until he receives a particular number of people prayer before he’ll answer in our favor. It’s not like we need 750 people praying for Beckett for him to be healed, and if we only hit 749, God won’t heal our son. So again, I asked…how does it work? That’s a question I don’t want to attempt to answer in this post. But I will explain HOW I pray (for those of you still reading this post).
I don’t believe it is ‘wrong’ to request and ask the desires of our heart. However, I’m learning how finite I am, and how great He is! Example in scripture of The Lord working out amazing plans through difficult circumstances:
1) Joseph. Sold into slavery. Imprisoned. Yet became Second in command next to Pharaoh.
2) I’ve referenced Job before and
3) Abraham with his son Isaac.
God has already used Beckett in ways that we could never have imagined, yet in my weakness I feel as if I could somehow have had a say in all this before it happened over a month ago, (even knowing what I know now) I would still decline to go through all this agonizing pain once again. So I slowly begin to learn to pray to align my desires to the Lord’s will rather than ask for the Lord’s will to align with my desires. With that being said, I’ll try to wrap up now.
1) I pray for the desires of my heart (‘Please continue to heal my son, God’), but as an act of transparency, sincerity and honesty of my feelings and desires.
2) Next I pray for the Lord’s will to be done (Matthew 6:10) as an act of trust and respect to my Lord.
3) Lastly, I ask for The Lord to work in my heart for peace of whatever the outcome may be….his good, pleasing and perfect will (Romans 12:2). This is clearly the most challenging prayer, but evokes sanctification and a necessary step in my prayer life.
I hope that helps or was of some value to you. This mindset has really helped me pray what I believe is a pleasing, sincerely and effective prayer.
Love you all (and I mean that, even if we’ve never met). Thank you for praying for my son. We’ve come so far, and I believe the Lord has great plans for my son’s life.
Oh, and if you get the chance, check out Beckett’s blog to find ways to get involved. The Benefit Concert will be awesome, and I’m so thankful to everyone who has helped make this happen. We are forever grateful to you all!
https://heartofbeckett.com/
Heart of Beckett 