I may end up a fireman! Thank you Zimmermans!! — with Jonathan Rupp.
Heart of Beckett
The Journey of Beckett Jude Rupp
Category Archives: Leah
February 17, 2013
UPDATE (2/17/13)
First I want to say sorry we didn’t post anything last night, but some nights we just need to come home and crash. I am sure you all understand, but we just want you to know we try to do something every day because you all follow so diligently.
Now on to the good stuff. I want to begin with Friday night. Jonny and I were preparing to leave late afternoon, but he decided to hold Beckett for a little while first. At one point Beckett started gagging pretty hard and his heart rate dropped. This is actually normal (although still a little scary) due to the vagal response, but what followed was Beckett throwing up all over Jonny. While it was not funny for Beckett, it was funny that Jonny got puked on. Haha. Beckett had been a little fussy, but actually seemed to feel pretty good afterwards. So he got an impromptu bath and clean jammies. He has also had a different colored and textured stool earlier in the day, which the doctors said they would continue to watch. He hasn’t had one since. Praise the Lord because they were concerned he might have caught some type of stomach bug. But, ever since he threw up he has been just fine. That night our friend Seth Abram was scheduled to have a concert at Anderson University, which just so happens to be where my youngest sister goes to school. We decided to head up and surprise them both. Just saying yes to going was a challenge for me, as I have not been more than twenty minutes away from the hospital, and Anderson is a good forty-five. I actually almost made Jonathan turn around multiple times. To make matters worse, we showed up at the coffee shop and no one was there. I have to be honest I was a little upset. We called my sister and the show had actually been postponed. So we took her out to dinner instead and then surprised my other sister at work in Anderson. It turned out to be a good night and yet another baby step in me getting away from the ICU.
Yesterday, Beckett had a really good day. No major changes due to it being Saturday. The ENT doctor did come and do a scope of Beckett’s vocal cords. The results were what we were expecting, despite praying for the best. Beckett’s right vocal cord is currently working, but the left is not. This is why his cry is so hoarse. Technically it is not guaranteed that function will return, but they are expecting it to. It could take anywhere from a month to a year. Eventually he said the right will compensate for the left and close off the entire airway. So now that we know what we are dealing with, speech therapy will evaluate him to determine if it is safe to give him milk by mouth, and he will most likely need to have a swallow evaluation to check for aspiration. We don’t know any of those details yet. Beckett also sweats a lot. Partially because he is always wrapped up tightly and partially due to withdraw. Last night Grandma Linda and I gave him a very thorough bath and she rubbed him down with lotion. He always looks so great when he is clean. He has even started to like it more and more. He loves when we wash his head because it feels like a little massage. He didn’t cry at all last night during bath time. We also try to massage his arms and especially his legs when we put on lotion because he has a lot of negative touch in these areas from IVs and medications, so massage is positive touch for him. He was a little fussy when we went to leave, but it made me feel better that he was being rocked by his nurse as we walked out the door.
Today, Beckett has had another good day. They changed his methadone this morning, so tonight he was having a little rougher time. He was crying so hard when were trying to leave. His face turns beat red, he sweats like crazy, can’t figure out his pacifier is in his mouth, and he holds his breath. Not typically good for a kid whose oxygen is lower than normal due to anatomy. We tried rocking, rubbing, patting, pressure, talking, etc. Pretty much all the tricks that normally work. Of course none of them did. But the nurse broke out a sugar treat that helps take the edge off. It is a liquid they squirt on the pacifier. He took it right away and fell asleep instantly. He had been probably the maddest I have seen him yet, so I am glad he only had about two hours to go until his next methadone dose. They also said this morning Beckett is not gaining weight like they would want him to. They said they might need to either increase the volume of milk at each feeding or increase the calories they are using to fortifying it. This is especially stressful for me because, due to all the stress as well as not actually having a nursing baby, I have been having trouble with my milk supply (sorry if that is too personal). This is typical for these types of situations, but we have already depleted a significant amount of what was stored and I can’t really keep up with the demand. We are working on it. Anyway, he did gain weight today, so that is good. We are praying for continued growth, and especially for his heart and lungs to grow stronger each day.
So that is the latest. We delight in good days, and today was yet another. Continually praising God for His mercy on our precious son’s life.
— with Jonathan Rupp at St. Vincent’s Womens Hospital.
February 16, 2013
So a friend of both Jonny and I’s from Miracle Camp sells Thirty One. For those of you who haven’t heard of it, it is based off the Proverbs 31 woman. It is bags, purses, organizational things, etc. She is setting up an online party and donating her commission to the Beckett Jude Rupp Benefit Fund. How amazing! I am attaching the link to the catalog and will also let you know once she has the online ordering set up. Just wanted to let everyone know in case anyone is interested in making a purchase. Thanks so much for all the continued support!
Heartofbeckett.com — with Jonathan Rupp.
February 14, 2013
UPDATE (2/14/13)
Happy Valentine’s Day! Today Beckett got all spiffed up with a bath, combed hair and a new Valentine outfit for when daddy came! He was just the cutest little thing. I have to brag that his nurse today said he looks like a Gerber baby. What can I say? Beckett didn’t have a lot of changes today. He just had his normal physical therapy. Yesterday however they changed multiple things. They weaned his methadone, and praise the Lord he tolerated it extremely well. They also decreased his Vapotherm by half a liter and decreased how long they feed him. He now gets meals over an hour as opposed to an hour and a half. This allows his belly to actually feel hungry as well as need to digest more food in a smaller amount of time. He has been doing really well with all of these changes.
Yesterday morning he did have a very small amount of what looked like blood in his stool. They sent it to the lab and sure enough it was. This could have meant a number of things. He could have a fissure somewhere in the end of his digestive tract or he could have what is called Necrotizing enterocolitis or NEC for short. The doctor looked at his bottom and couldn’t see anything, but said it is possible a fissure could be a little higher up on the inside. They did an x-ray of his abdomen and it came back negative. Yeah for no NEC! This would have presented a whole new set of “problems”. Praise the Lord! And we haven’t seen any blood in his stools since. They also gave a little strap/splint for his thumbs yesterday because he always holds them in his fist. This is one of the things we are working on in therapy as well as when I do stretches with him. At least the strap doesn’t bother him.
Considering all Beckett has been through he has a very calm demeanor, and for the most part is very cooperative. Maybe it is because all he has been through and these things don’t phase him anymore. So the past two days have been very good for him. Tomorrow they are having an ENT doctor scope his vocal cords to see what they look like and if there is any movement. Beckett has to have working vocal cords to protect his airway from aspiration when eating. This is very important, as they would like to try feeding him orally as soon as they can, but we have been warned that most heart babies take a long time for their vocal cords to start working again, and an even harder time eating by mouth. So we are preparing for Beckett to possibly struggle with this.
Anyway, today we got to spend time celebrating Beckett’s first Valentine’s Day! How precious and exciting for us! His nurse tonight even set up the room with sheets like a photo shoot and took tons of pictures for us. She may have loved it as much as we did. It is so great to have people taking care of our son who truly care about it! So, what a great day for expressing how much love we have for him! Happy First Valentine’s Day Beckett! Mommy and Daddy love you!!
https://heartofbeckett.com/ — with Jonathan Rupp at St. Vincent Women’s Hospital.
February 14, 2013
I know it’s sappy….but come on, this is #precious!— with Leah ‘Whiteley’ Rupp at St.Vincent Women’s Hospital.
February 14, 2013
The nurses helped Beckett make a card! — with Jonathan Rupp at St Vincent Womans Hospital.
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.
Heart of Beckett 