Heart of Beckett

UPDATE (6/18/13)

Beckett has been so much more like himself today. He has been giving big smiles to everyone, blowing raspberries, playing with his toys, and just having fun. He sat for multiple hours tonight with his nurse while we all talked, and my mom and I cleaned out his room. (This is a sad feeling we have experienced too many times, with multiple times yet to come). When we first arrived at Riley they all said how sad they were we wouldn’t get to experience the new unit. Well the move is in the morning and we are still here. It is a little bittersweet as we hoped to be home by now, but we will get to experience the brand new facilities for a couple of weeks, and it is absolutely beautiful.

Beckett was awake most of the day, just being social with anyone who would talk and play with him. It is so funny to watch. He definitely whines when people walk away, but even if you are outside his room, all you have to do is start talking and he is perfectly content. He just wants the interaction. He sat tonight for over an hour just staring at me while I conversed with people, and he didn’t fuss a bit. We of course did his bath and tucked him in, but by the end of it all he had had enough and was pretty cranky from being tired. He could barely keep his eyes open or even muster the energy to cry he was so sleepy. He had been up for quite a while and should sleep most of the night.

Tonight my mom and I packed up things to take home and organized things to get ready for the move. It is weird to think tonight is his last night in his room. Just when we get used to a place we up and move again. That seems to be the story. It is pretty cool though to be a part of something so big. It’s fun to know he will be the last baby to ever stay in his room now, and the first baby to be in his new one. We have been taking pictures of everything we can, because once they move, they won’t be allowed back in. We are trying to make sure we have captured everything from out first two and a half months here. So, my mom and I are here heading in early in the morning for the festivities, and Jonny will be driving down to join us. We can’t wait to see the sunshine in a room with a window!!

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

UPDATE (6/17/13)

Well I made it back down to Indy, ready for a busy week I’m sure. The official NICU move is Wednesday, and people are anxiously waiting. I have no doubt there are nerves on both sides, but I am excited to be a part of such a monumental transition, and can’t wait to enjoy the newness for a few weeks. It will be short lived because we will move yet again once Beckett has his surgery in two weeks. That is crazy to say!

Beckett was pretty good today, awake and playing with daddy when I arrived. He was so happy until he got tired and then he just whined and whined. It was about this time a few of his old nurses arrived for a visit. As always it was great to visit with them and for them to spend time just loving on Beckett. He even showed off a little with his new trick. He does raspberries all the time. If you do it back to him he just does it over and over. It is so cute! I love watching all the new things he is learning, especially despite all the reasons he has not to.

Jonny went home tonight after dinner to finish up his internship and be back Wednesday for the move. So I returned to Beckett’s room, and waited to give him his nightly bath. He had fallen asleep when we left for dinner, and he normally wakes up around eight. So, I sat and wrote in my journal, patiently waiting. It was not long before I realized I kept dozing off in the chair because the alarms from outside the room kept waking me up. I decided to go ahead and leave for the night around nine because Beckett was still sound asleep. I was so glad he was sleeping so well. He had a busy day and didn’t sleep hardly at all. I guess bath time is on the nurse tonight if she wants to.

Not a whole lot of changes going on recently. We seem to be in maintenance mode because there isn’t really a reason to push him on a lot of things if they will all just change in two weeks with surgery. There is always the adjusting of med doses, but other than that not too much. Today they did change his formula back to what he was on prior to last week. His reflux has been maybe a little better, but not significantly enough to outweigh the loose stools that are causing his bottom to get raw. So, change the formula, cream on the bottom, and hopefully it will clear up soon.

These next two weeks will mainly be filled with loving on Beckett as much as we can, and allowing him to get as strong as possible. Big things are coming and we all need to be ready. I am so grateful God has brought us to this point, and look forward to the days ahead!

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

UPDATE (6/13/13)

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

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

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

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

UPDATE (6/12/13)

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

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

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

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

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