Heart of Beckett

UPDATE (4/16/13)

My how I love good days. Today has been just that. A calm, quiet, wonderful day. Beckett spent a lot of the day sleeping, which is always good to allow his body to heal. When he wasn’t sleeping he was calm and peaceful in his bed smiling and playing. He also had multiple rounds of snuggle time with mommy. It is so fun to watch him be a normal baby. He is getting his voice back and making lots of baby noises. He also has some rings and rattles hanging over his bed and he played with them for quite some time this evening, just reaching out and grabbing them. It is so precious to see how he is developing. And already they are falling in love with him here. The nurse today told me people come in to visit just so they can look at him, and when the doctors handed off this evening they saw his pictures and literally all said awe! They thought he was adorable, which of course we do too!

The cardiologist came by today and said Beckett is looking really good. They are extremely pleased with how well he is responding to having his coarctation ballooned last Friday. So much so, they are weaning his milrinone and hope to have it off on Thursday. They then plan to do another echo to see if his heart is functioning better. They also decreased his vapotherm to 4 liters today, which is back to where he was before we came to Riley. At this point, all his meds but one are back to oral, which is awesome. His billirubin and liver enzymes have also come down a little more today, so they are hoping to pull the drain out tomorrow. He seems to be making great strides in the right direction, and we pray he continues down this road of progress. So, today was a day of positive and planned changes, and we are grateful for each one. He was even able to have clothes on again tonight. I know I have mentioned this before, but it truly does make a world of difference.

So, Beckett had a good day, and enjoyed all his playing. The nurse sang him songs and told him the story of Noah. Tuesdays are Ariana’s book cart day, where you get to pick a book to keep for you child. I picked a book about a busy helicopter and read it to him this afternoon. It was amazing to see him actually looking at the pages. He is such a good little boy, and I am truly blessed to have him for a son. We continue to pray for his healing, and that we are once again headed toward home.

— with Jonathan Rupp at Riley Children’s Hospital.

UPDATE (4/3/13)
Just another day. That is what today felt like. It seemed like we were just hanging out, in a hospital room, like normal. Beckett has been so good today. He has slept almost all day, most likely because they increased his methadone in order to wean his Fentanyl. We definitely do not want a repeat of the last two attempts at weaning. So far he has tolerated the changes well.
Beckett truly hates having an ET tube in his mouth. They decided to leave it in one more day to allow him a day to rest without anything really happening. His body definitely knows it is not supposed to be there. He has been producing a large amount of saliva and does a good job at trying to cough it up. However, since there is a tube blocking the way, it gets stuck and he has a hard time breathing. I also think it scares him. He begins to cry, then drops his heart rate and oxygen. While this is not ideal, they simply suction his tube and he recovers on his own, which is great. So, while I want him to be truly ready before they pull the tube, which will most likely be tomorrow, I don’t want him to have that problem any longer.
They started his feedings up again today and he has been doing well with that. They leave his G-tube “up to vent” so that he is able to burp through it. Twice today Beckett burped and shot milk out onto the wall next to his crib. It was both gross and hilarious. We let his nurse clean that up, which she appreciated. HaHa.
Beckett doesn’t typically get bathed while on the vent. But, tonight I was able to clean him thoroughly. Boy did he need it. When he gets worked up he sweats a lot and he just did not smell good, and I’m sure he doesn’t like me telling him how stinky he is. He even had some heat rash on the side of his head he was so sweaty. So he got a goodnight bath. He has always loved having his head rubbed, probably because for so long that was all we could do to comfort him. When I began washing his head, he instantly started falling asleep. It was just the sweetest thing. He would rub his eye and fight his eyelids closing. Once he was dressed and back in bed we tucked him in, and he calmly and quietly fell right to sleep. I hate leaving him at night, but I love knowing he is so peaceful.
So today was what they like to call status quo. That is what we like, and what we pray for. We pray for progress, but in that forward moving we pray for no surprises. I needed a day like today, a day just to be with my son. Praise the Lord for status quo.

— with Jonathan Rupp at St. Vincent’s Womens Hospital.

— with Jonathan Rupp at St. Vincent’s Womens Hospital.

— with Jonathan Rupp at St. Vincent’s Womens Hospital.

UPDATE (3/24/13)

Praise the Lord for good days. Today was a much better day than yesterday. So, today they specifically said that after surgery for his g-tube, Beckett had fluid volume overload and his heart just didn’t have the strength to get rid of it on its own. The adjustments they made yesterday, including changes on the ventilator and medications, have really helped him. Beckett is definitely critically ill; in fact, his nurse said today that he is probably one of the sickest babies in the NICU because he is a heart baby, but currently he is a sick heart baby. The cardiologist came in today and said Beckett looks much better. She is still concerned, but was much more worried yesterday. The healthy perspective is to know Beckett is doing better and believe he will be healed of this, but to also know that things could turn bad very quickly. The cardiologist said we need to look for Beckett to turn the corner, and she believes he will. That is some seriously encouraging news.

Today Beckett has slept comfortably and been awake comfortably. He wasn’t poked and prodded too much, but rather was allowed to basically chill and recover. He received another blood transfusion to really give him a good boost. This just gives him some extra edge since he is currently sick. They were able to wean some of his vent settings because his blood gases were good. He is having really big diapers, which means he is peeing out the excess fluid. This is huge! One of the biggest successes of the day is the decrease in his oxygen support. Beckett’s oxygen saturation has been 78-81 for most of the day (we want 70-85), and his support was all the way down to 24% as we were walking out the door; we want 21% and he was as high as 74% yesterday.

With Beckett’s heart condition he doesn’t have a lot of reserve. Pretty much any little thing being out of line can really affect him. So, when he gets sick, it just tends to make him sicker than it would a normal kid, and when he is sick, it takes him longer to recover than a normal kid. So, Beckett is not out of the woods yet, but he is recovering, and we continue to believe he will be completely healed. So today was better than yesterday. I cannot even begin to describe what yesterday was like, and how emotional I was being at work with nothing but text message updates on how Beckett was struggling. First day back at work and I couldn’t even make it through an eight-hour shift. After six hours I headed back down to Indianapolis, and felt so much better once back in his room. So a big thank you to a job and coworkers who completely understand how difficult this is.

Last night I was lying in bed with my Bible asking God to show me something of encouragement. I simply opened my Bible and read the passage I had flipped to. This is what it said:

James 5:7-11, 13-15
Patience in Suffering
7 Be patient, therefore, brothers,[a] until the coming of the Lord. See how the farmer waits for the precious fruit of the earth, being patient about it, until it receives the early and the late rains. 8 You also, be patient. Establish your hearts, for the coming of the Lord is at hand. 9 Do not grumble against one another, brothers, so that you may not be judged; behold, the Judge is standing at the door. 10 As an example of suffering and patience, brothers, take the prophets who spoke in the name of the Lord. 11 Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.

The Prayer of Faith
13 Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise. 14 Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. 15 AND THE PRAYER OF FAITH WILL SAVE THE ONE WHO IS SICK, AND THE LORD WILL RAISE HIM UP.

— with Jonathan Rupp at St. Vincent’s Women’s Hospital.

— with Jonathan Rupp at St. Vincent’s Women’s Hospital.

UPDATE (3/20/13)

Just a quick update tonight. Beckett has had a better day today. He did get a rescue dose of morphine tonight right before I left just to help make him comfortable for the night. Other than that nothing major today, in fact he spent a lot of time in my arms and a significant amount of time sleeping.

We know you are all praying, so we ask specifically for prayer tomorrow at 11:00 as Beckett will be having surgery to put in his G-tube. This should be only about an hour-long procedure, but as with any surgery there are risks involved, some of which are heightened for him due to his condition. Thanks for continuing to lift our son up in prayer. We are eternally grateful.

— with Jonathan Rupp at St. Vincent’s Women’s Hospital.

UPDATE (3/19/13)

Good evening! Overall, today was a better day for Beckett. Yes, there were a few little hiccups along the way, but we must continue to see the big picture.

This morning Jonny got up early to head to the hospital before returning back to Upland for class. I had asked him to text me how Beckett was doing when he left. The past few days Beckett has required a significant amount of extra oxygen, as high as 65% just yesterday. So last night his nurse was able to get him down to 30% by morning, but then Beckett began to have a meltdown. He required a dose of morphine and his oxygen requirement went back up to 45%. He pretty much stayed there most of the day. He actually didn’t even get weaned down any until about six o’clock this evening. We have thought for days this was mostly a result of how hard he is withdrawing, but Jonny, the nurses, and myself have also thought there had to be something else going on. Beckett responded really well last week when they put the chest tube in, but he hasn’t had any drainage out of it for almost a week. However, his daily x-rays have continued to show a small pleural effusion. We have all wondered why the fluid wasn’t draining, especially when they turned back on the suction. So, again today I asked the doctor how we get the fluid out. He didn’t think the tube was clogged where it sits in the fluid but decided to aspirate from the tube with a syringe, I think more or less to stop everyone from asking him. When he pulled off the actual pigtail from the suction tubing there was what appeared to be a small amount of tissue clogging the tube at the connection point. Once removed, they were able to remove approximately 11.5 mLs of fluid and it has continued to drain since then, approximately another 8 mLs since this afternoon. Since doing so, Beckett’s oxygen saturation has improved and his requirement is decreasing. The nurse had turned him down to 36% as I was leaving, and hoping to continue through the night. I guess sometimes all of us pestering makes a difference.

Beckett’s G-tube surgery is scheduled for 11:00 Thursday morning. This is such a big step in getting us ready to go home. He has been cleared by all the important disciplines and had his upper GI this morning. His results were his anatomy is normal, and he doesn’t appear to be having any reflux, all good news. So we will proceed as planned. Of course this is a surgery so we are praying for everything to go smoothly, and for Beckett to tolerate it extremely well.
I also had a discussion with the doctor today about Beckett’s withdrawal. I just felt like he is suffering when he doesn’t need to be, and that we can and should do better. I didn’t understand why we were continuing to allow him to be miserable when his heart is already under enough stress. So, after telling his nurse how I have been feeling and talking with the doctor, they doubled Beckett’s methadone dose today. While this is basically starting over, it is more important for him to be comfortable than to refuse to backtrack. We have also been informed this is not something that will keep us in the hospital, so I feel a lot better about it. His first dose of the new amount was this afternoon, so it might take a few to allow him to adjust, and therefore he did require another dose of morphine this evening. But then he was calm and peaceful, and we spent good time rocking and talking until he eventually fell asleep in my arms.

If I am being honest this morning was emotionally difficult for me. In fact, Beckett’s nurse and I had to go into his room, shut the door, and I cried while discussing all my current worries. I am doing my best to hold it together, but some days I reach a breaking point, and it is impossible to be strong 24/7. After having heard about him needing more morphine, knowing he was up on his oxygen, and then getting a call from pediatric surgery to discuss the G-tube placement and going through a long list of risks and side effects, I just was too overwhelmed with concern. I only needed about 15 minutes to let it out, then discussed with the doctor all my questions, came up with a game plan that suited everyone, and saw action. I quickly felt better that we were taking steps to better help Beckett make progress and be comfortable. I also have added stress because, while I am not ready to return to work, it has come time that I no longer have a choice. I am working out details with my manager, but I also found out this morning Friday is her last day. This too made me nervous that the next boss might not be as gracious. So whether I am ready or not, I will be returning to work within the next week or so. This too is all a part of God’s plan, and I must continue to trust in the truth that he knows what he is doing, and he is in control. I have no doubt that Beckett will get through this and make a full recovery because I believe in a big God who has shown himself faithful every step of the way. But, some days I struggle more than others simply because I am human. Today just happened to be one of those days. Tomorrow will be better. To quote a line from one of my favorite movies, “After all, tomorrow is another day”.

— with Jonathan Rupp at St. Vincent’s Women’s Hospital.

UPDATE (3/13/13)

Yet another good day. Everyone was commenting today on how great Beckett looks. He was able to have a relaxing day yet again; a day filled with sleeping and playing. Then tonight he got a very thorough bath, new linens, and new pj’s. Once he was tucked in for the night he quietly drifted off to sleep within about a minute. He has been so peaceful and calm all day.

The only main events for the day were turning his Vapotherm down from four liters to three, weaning his Fentanyl drip from 2 to 1.5, increasing his Lovenox dose, and changing the multivitamin he gets because his billirubin has decreased enough. Nothing major, but all good things.

They are planning to do his upper GI early next week, and surgery for his g-tube mid to late next week. This truly is a huge step and we can’t wait for this to be done. They have also cancelled the HIDA scan for now.

Oh, and Beckett is almost back up to his full feedings. This is great, and he continues to grow bigger and stronger, becoming more active every day. Tonight he weighed a whopping 9 pounds 2 ounces. I honestly cannot believe how big he is getting, and I often forget that he is almost three months old. Where has the time gone?

This morning while my mother-in-law was praying after our devotional, she thanked God for spring and the coming of new life. How wonderful is it that soon we will be bringing Beckett home, in the springtime, with new life ahead of him. What a beautiful picture.

— with Jonathan Rupp at St. Vincent’s Womens Hospital.

Sorry this didn’t get posted last night. Had trouble with the internet.

UPDATE (3/12/13)
What a great day for Beckett! Praise the Lord! When my mother-in-law, Linda, and I arrived this morning, Beckett was wide-awake lying calmly in his bed staring at his mobile like he loves to do. His nurse had already changed his PICC dressing so that it would be out of the way. This was literally the only procedure he had to endure today. Other than routine assessments every three hours and diaper changes, he wasn’t messed with at all. It is about time that boy got a day of rest. I could not be more grateful that he was finally able to take multiple long naps. He was awake for hours this morning perfectly content in his bed (we are not allowed to hold him right now due to his fresh chest tube). Grandma Linda did give him some “exercise” three times today. She would sit him up in the bed, let him look around, and talk to him about the animals on his mobile. She is already teaching him colors and animal sounds. She held him up like that for what had to be at least an hour each time, normally until her hand went numb. I told her she is going to have one really big forearm because she only uses the left one. Ha Ha. He would eventually get tired and drift gently off to sleep. She then laid him down and he would sleep for hours.

This evening when we returned to his room he was once again awake. He was so happy. He had a sweaty head so I washed his head and face, along with his hands and feet. We changed his bed linens and his clothes. He was so comfortable once everything was freshened up. They also weighed him tonight. Are you ready for this…Beckett weighs 8 pounds 15 ounces! And Saturday night when they measured his length he was 22.5 inches long. He is getting so big! When people haven’t seen him for a while, one of the first things they comment on is how big he is, and how chubby his cheeks are. We have been told one of the best things to do for surgery number two is to grow him. We are definitely working on that.

Just so you know, we love visitors. Yesterday we were able to see our friend Rachael from the PICU, and today our friend Karol from the PICU came. It is always so good to see them and catch up. We miss them over there, and while I would love for Beckett not to endure any more surgeries, it is inevitable, and we will be back hanging out in the PICU with all our friends before we know it this summer.

There was lots of good news today. So far, as we may have mentioned already, all of Beckett’s recent cultures have come back negative. That is absolutely wonderful! He still has a small pleural effusion, but the chest tube should continue to drain that out. His breathing continues to be relaxed, and the Dr. said he even looked more comfortable today than yesterday.

So before bedtime Grandma Linda once again had him sitting up and enjoying a different view. It wasn’t long before he started getting sleepy. The nurse began tucking him in, and he was rubbing his eyes and everything. Within minutes he had fallen asleep. It is comforting to know he sleeps so well, and I pray it is truly restful for him. It is so wonderful to see how good he looks when he was so sick just a week ago. I don’t think we will ever know all the ways God has answered our prayers, but I simply look at my son, and I know he has heard them. God is in the midst of this. God is in control of this. We are walking in the assurance that this journey has been perfectly planned for us, and we wouldn’t have it any other way.

— with Jonathan Rupp at st Vincents womens hospital.