Heart of Beckett

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.

UPDATE (6/4/2013)
Today was such an enjoyable day. Beckett has been so good, playing and chatting all day. Of course, when he gets tired and decides he has had enough he goes from zero to ten instantly, but he calms down pretty quickly once we settle him in to sleep. We are working hard to give him more interaction and stimulation throughout each day. One, because his head is getting flat and he needs to get out of bed, and two, because he is five months old and wants to play and be entertained. So we go through the bouncy, then the swing, then his tumble form chair, and today he used a play mat for the first time. PT had told my mom last week he needs to start having tummy time on a mat which will help strengthen his muscles, but almost always he absolutely hates being on his stomach. I can understand since this is something completely new (he has only done it about two times), and he doesn’t know what to do quite yet. It is hard to introduce something like that when he is so old and knows what he likes and doesn’t like, but we will keep trying. Even though he was on his back he did thoroughly enjoy the mat and playing with the toys that hang from it. It is so cute to watch him be so playful and entertained. And, I think it’s fun for the nurses to have a baby they can actually play with.
It was a pretty low-key day. Right now Beckett mainly plays and sleeps. We are somewhat on cruse control until the heart cath in a couple weeks and they decide what the next step is. Of course there are little changes here and there such as weaning the Vapo and optimizing some of his meds. Today the VapoTherm was weaned to 2.5 Liters of flow. We are getting so close to him being of it, with the goal to be Friday so he can have his MRV scan to check on his clots. If they are gone he will be able to move down to a very small dose of Lovenox (the blood thinner injection he gets twice a day in his leg). They will keep him on a small amount as long as he has his PICC line in because we don’t want any clots in it. They have also been letting him naturally outgrow his seizure medication since he hasn’t had any since way back the first week after surgery. It looks like they will be taking him off that completely on Monday. Yeah for one less medication!
So all good things to report. There is one funny story from today. Beckett finally had his first “I pooped everywhere” experience today. Luckily Jonny and I arrived after it happened so the nurse had it pretty much cleaned up as we walked in. It was pretty bad and his whole room stunk. Not only did he make a mess just by going, but also when the nurse turned her back to set his clothes aside he started kicking his feet through the dirty diaper and ended up with poop all over his socks. Of course he was wearing a white outfit. It was quite the mess and bound to happen sooner or later. I am just glad I didn’t have to take care of it. Beckett of course thought it was funny and smiled the whole time. What a little stinker.
Beckett is in a really good place, and as always we pray for more days of progress! God is bringing him closer each day, constantly healing him little by little. All praises to His name!

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

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

UPDATE (5/29/13)

Beckett has had such a fabulous day. When I called this morning as I drove to work they said he had had a great night. Each time I spoke with someone throughout the day they continued to say how wonderful he was doing. I could not have been more excited. I did have a small scare when a nurse practitioner left me a voicemail to give me a update. When I called back she said she just wanted to let me know he was doing well and they had turned his VapoTherm down today. Cardiology was also pleased with how he was doing. That was such encouraging news and helps make being away at work a little easier.

So after work I got back down to Indy as quickly as I could. My mom had stayed with Beckett for most of the afternoon since neither Jonny or I could be there. When I arrived the scene was not nearly as quiet as I would have hoped. They were actually getting an EKG and I could see on the monitor he was again having an arrhythmia. My mom just gave me a look and said he had been doing it for about an hour but they didn’t seem overly concerned. He looked the same as always and was happy and smiling when I walked in and talked to him. The cardiology fellow came up to assess him and said he was alright but they would continue to watch him. She had called the attending and he too said they would just let him be for now since he was acting normally. So, while it is not ideal, he is ok. We are hoping it resolves on its own and I would prefer sooner rather than later. 🙂

He got his nightly bath after I arrived and we tucked him in and he was sleeping before we left. So while he seems to be having a small hiccup this evening, he truly has had a great day. As always we just wait. Beckett is on his own schedule and he likes to keep us all on our toes. At least he keeps life from being boring. As long as he stays within reason. My mom kept telling him his mommy wasn’t going to like it but he did it anyway. That can’t say anything good about the future. I think we are going to have a stubborn one on our hands. Maybe we will just call him strong willed. Anyway, Beckett is doing fine, and we need to hold tight to that. One day at a time.

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

UPDATE (5/28/13)

Happy Five Month Birthday Beckett!! It is hard to believe my baby boy is already five months old. As long as these days have been, they have gone by so quickly, and I can only imagine how much faster they will continue to be. Sometimes I walk in his room and expect to see a 6 pound 10 ounce newborn. Other times I can barely remember him being that small. It seems so unreal when we talk about things like teething or rolling over. Yes, rolling over. The therapist today said he is doing a lot of the motions that lead to rolling over. These seem like simple things, but since Beckett has had to lie in a bed for most of his life, he is behind in a lot of ways. He is catching up, and we are diligently working to help him. When normal things come along, it is pretty exciting, and unbelievable at the same time. He is going to need a bigger crib if he starts rolling over. ☺

Beckett has had a very good day. He had a hiccup through the night. They were out of one of the syringes to draw his labs through the night so they had to do a heel stick. His gas did not look so good so they turned his VapoTherm up to five liters. They were able to find a box of the syringes this morning, and Beckett’s gas looked beautiful. Therefore, they turned the VapoTherm back down to four liters. His breathing has looked better today, and cardiology said he is looking really good. They are pleased with where he is. They are going to continue to make small changes one at a time as long as Beckett continues making forward progress. I am so thrilled he is doing well and proud of the fight in him.

Today was a quiet day, and my mom and sisters were able to come for a visit. Beckett was very happy on the whole today. At one point this afternoon I looked over at him and could tell he had woken up because his arms were no longer above his head, but he was quietly playing with his hands. He hadn’t made a sound, he had just gently woken up and was calmly and contently keeping himself occupied in his bed. He played a lot with his toys. He was full of smiles and love, constantly reaching out to touch my face. It is an indescribable feeling when he reaches to rest his hand on my cheek or play with my nose and mouth. I can never get enough. I am overwhelmed with love for that little boy. I would spend the rest of my life in the hospital if it meant sharing each day with him. I continue to pray for Beckett’s complete healing and believe with all my heart his day will come. We continue to patiently wait. His day is on its way. God has given us five beautiful and life changing months. As I celebrate Beckett’s five months of life, especially since there were many times we didn’t know if this day would come, I am grateful for every moment we have been through. Even when the days were long and hard, Beckett was breathing and his heart was beating. Five months later, he is still breathing and his heart is still beating. I pray God blesses him, and us, with many, many more years to come. He is faithful. Happy Birthday Sweet Baby!

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

UPDATE (5/14/13)

Beckett has had another good day today. He had a little rough patch through the night where they said he cried for about 45 minutes, therefore causing him to go up to 50% on his oxygen. He was at 34% when I left last night. However, when I got there, he was down to 46% and they were taking him down slowly. When I left this evening (I was able to head out a little early because he was sleeping), he was again back down to 34%. So we are continuing in the right direction. He was awake for most of the morning content and playing. He was so full of smiles today, and his nurse kept saying he was flirting. He was just so happy. Of course he has little bouts of fussiness, but he is five months old after all. That is incredibly hard to believe in and of itself. Anyway, he has had a very good day. Since he was up most of the morning, he slept most of the afternoon. He was awake for about an hour this evening before he again drifted off to sleep.

I was able to get away for a few hours today and spend time at the mall with my mom and sister. I haven’t been shopping since Christmas, so it felt a little strange, but was definitely a nice change of pace. We enjoyed Chick-fil-A milkshakes, and my sister treated us to having our toenails painted. It was good to spend time with them in the normal world. Not too mention soaking up some much needed vitamin D.

They also had an Indy 500 party at the hospital tonight, so while Beckett was sleeping I ventured down, just to get out of the room for a little while. It was actually quite nice. They were giving away tons of free things, had an Indy car outside, and even two drivers were there signing autographs, one of which has a son just a few weeks older than Beckett. I was able to get him some nice souvenirs that he can have with the rest of his keepsakes from this journey.

I also spoke with the cardiologist again today. He said Beckett is looking great, and that his color is really good. He thinks we may need to add another med and then start pushing him a little. He said Beckett is doing well, he is just moving very slowly. This part is not news to us, as we have always known Beckett to like things slow. So, we will see. Right now he said these are just things he is thinking about, and he isn’t going to force us to do anything. Also, the coarctation of his aorta has come back a little, which really is no surprise, so that is something that will probably get fixed when he has a heart cath before the next surgery.

So that was today. Just calm, quiet, and exactly the way we like it. We are praying that each day gets a little better than the last, and are grateful for each good day we have with him. His life is truly a blessing, and God has given me the greatest gift in Beckett. I could not ask for a more precious son.

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

UPDATE (5/13/13)
Well according to both Jonny and my mom, Beckett has rocked it today. I was at work, so when Jonny had to leave early for school, my mom stayed with Beckett until I was able to get here. They said he has been so happy when he was awake, just smiling and playing. I always love to hear that. He was held a lot through out the day, and sleeps so good because he’s comfy. They continue to be able to bring down his oxygen; currently it is at 34%, and every one says he looks great. They did wean his Fentanyl today, but this time did not increase his methadone. They are prepared to make adjustments should they need to, but we are hopeful Beckett will be able to tolerate the change on his own. He woke up shortly after I arrived so I was able to give him his nightly bath and get him all tucked in for bed. It wasn’t more than 30 seconds and he was already sleeping. I just love knowing he is so comfortable and sleeping well when I leave. So we have had a long string of good days. As we have said before this often puts us on edge waiting for some sort of setback, but I truly believe we are on the way up, and we are going to continue in that direction. As always, we are praying for that to be true.
With that being said, even when we have good days with Beckett, we are constantly reminded that there are other people struggling around us. It just so happens that one of those people is my Uncle. I was informed today that last night he suffered a massive heart attack and is currently in the ICU. Unfortunately I have yet to really hear any details. So as you remember Beckett in your prayers, I ask you remember him as well. Thanks for the constant support for Beckett and our family as a whole. Good night.

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

Blessed to celebrate Mother’s Day because of this little guy!

— with Jonathan Rupp.

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.