Category Archives: Beckett’s Battle

Perfect Little Moments

It’s 5 pm. I’m making dinner. Music is playing loudly in the background and I can’t help but dance a little. I hear the girls playing upstairs, their laughter echoing through the house. As I stir our dinner, I feel a little tug on my pants. I glance down and see a perfect little face beaming up at me. Beckett scrunches his nose and smiles at me. I laugh and watch him as he crawls away to his high chair and pulls himself up. He looks back at me and smiles again. “Love you bubba.” I turn back to our dinner. And the tears start to fall.

I have moments like this almost daily now. Where the complete normalcy and beauty of the ordinary comes shining through. I love these moments. Moments that remind me just how far we’ve come and what we’ve learned. This week especially has been extremely emotional. On Thursday, it will have been exactly one year since B was diagnosed. One year. I remember so vividly the fear and worry that we were experiencing. And now our lives are so happy and joyful. A year makes such a difference.

Things at home are so perfect. Sure we have our ups and downs but overall life is just so wonderful. The changes that have occured over the past couple months are huge. His picc line was pulled out. No more lipids! We went from twice weekly blood draws to once a week. This has been great since we don’t have the picc line and have to poke Becks each week. We have been going to the doctor every 2-3 weeks instead of weekly. His belly has been staying stable and we introduced fats into his diet. He did great with that so we introduced milk. He hated it at first but once we introduced him to chocolate milk, he’s been doing just fine. We’ve gone from 15 meds down to 10 with a couple more looking like they will disappear soon. We’ve discontinued more than 5 but have added a couple in. It’s fine though because we discontinue heavy meds and add in simple ones like a multivitamin. So many people take multivitamins!!! I’m thrilled that some of his meds are simple ones. He has gone from barely drinking 1-2 ounces of water/apple juice to drinking 25 ounces, 20 of that is milk! Because of this we have cut back how much he gets through his feeding tube. He was getting 17 ounces but now only gets 5-7. We are hoping the feeding tube comes out soon. He eats 3 meals a day and has a couple snacks. He likes pretty much everything!! Just over a month ago I was feeling discouraged because he would barely put anything in his mouth. Our speech therapist was pretty stunned the last few times she came and he had made huge leaps. He went from not being able to sit, to sitting, army crawling, real crawling, pulling up to his knees and now pulls to standing. He is even letting go of the furniture with one hand and has rock solid balance. He is catching up so quickly. I am astonished.

One year ago, we were about to embark on the scariest journey I have ever been on. I kept thinking why us? Why Beckett? But now all I can think is Why NOT us? Why NOT Beckett? Look at how our lives have changed. Everyday is beautiful. Everyday I see the beauty in the ordinary that I never noticed before, at least not with any regularity. I see it in everything we do. I cry tears of joy almost daily thanking my Father in Heaven for his abundant blessings and his wisdom in teaching us a very valuable lesson. A painful one but one that changed my perspective and has made me a better person, wife, and mother.

And so I look forward to future little tugs on my pants, and my heart. Constant reminders of how blessed we are and how wonderful life can be if you’re willing to look for the little, ordinary, perfect moments.

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Our Transplant Journey

Last weekend was such a wonderful one. I never want to forget the events that transpired that led to our son getting his second chance at life. I woke up the morning of Friday the 12th in the best mood I’ve been in for a long time. I just felt so good. Life was wonderful. I was seriously bouncing off the walls. It was our anniversary so I thought that could be the reason why I felt so happy. I said my morning prayers and spoke to my Father about how today would be an amazing day for a new liver since it was our 7th anniversary. The girls woke up and we started on our day together. Periodically throughout the day, Shawn, who was at the hospital with Becks, would text or call. I kept telling him how happy I was and he kept telling me to calm down. I couldn’t. It was pretty funny. Partway through the morning, I felt like I needed to go to the hospital on Saturday and spend the day. Usually I take the weekend at home so that I can be at the hospital during the week to allow Shawn to go to work. I’m never at the hospital on Saturday. But I felt strongly like I wanted to spend the day with my boys. I arranged to have the girls stay with their Aunt and cousins Friday night for a sleepover and then stay and play all day Saturday. Around 6 pm I dropped them off and grabbed a bite to eat. I kept texting Shawn how happy I was and excited about life. Life is beautiful. He seriously thought I was crazy for being so happy when our son was so seriously sick in the hospital. I told him I would be up to the hospital really early in the morning. After I ate I didn’t know what to do and I was still so excited and hyper. Shawn suggested that I do some service for others. And immediately the thought came to mind to make cookies and write some notes to a couple neighbors and friends who have made a difference in my life lately. I dropped them all off and everywhere I went they would ask how we were doing. I just kept saying, “I’m amazing! I feel so good about life. I’m so happy!” I probably looked a little crazy. I spent time talking with a friend and then went home to bed. I went to bed at midnight, looked at the clock, sighed with a little smile on my face and then said my evening prayers. I said to my Father that even though we didn’t get a new liver, the day had been amazing and I was so grateful for the peace and joy that I had felt. I told Him that I wanted to keep that feeling as we continued to wait.

Saturday morning rolls around and I was up pretty early. I felt so sick to my stomach. I was nervous and anxious to get to the hospital. Shawn sent me a picture of him and Becks saying they were excited to see me. I got my belongings together and headed up. I walked into the ICU and over to Beckett’s room. Shawn was standing at Becks bed and looked at me. “It’s going to be a great day, ” he said with a grin and tears in his eyes. I immediately started crying. “Are you kidding me? Are you serious?” He grabbed me and pulled me into a huge hug. “I guess that’s why I felt so happy yesterday,” I said.

*Side note. How we got “the call” is actually pretty humorous. Because it’s so us. They called the hospital room where Shawn was staying with Beckett. The call came in at 3 am. Now those who know Shawn know that he can sleep through anything. It’s one reason why he does better here than I do. He can sleep through the beeping and the nurses coming in and out. Ask any of our nurses; they’ll tell you just how deep he sleeps. So the phone rings at 3 am. Shawn sleeps through it all. The resident got our call but didn’t wake him up. Morning comes and our nurse told Shawn that the resident wants to talk to him. Now we had been pretty worried about some labs the day before so it made Shawn nervous that she wanted to speak to him first thing in the morning. Shawn starts getting ready, completely oblivious to what was actually happening. He walks out of the room to go to the bathroom and a doctor was sitting right outside our room. He says to Shawn. “It’s going to be a good day.” Shawn was thinking, “Uh, ok.” After he got back from the bathroom, the resident walked in and informed him that we had the offer.

The rest of the day is a blur. We had so many doctors and nurses in and out of his room. They ran a full panel on him checking his urine, stool, and blood. They drew so much blood from him to check just about everything you can imagine. He had a chest x-ray, and numerous consults from cardiology, nephrology (kidney), hepatology (liver), anesthesiology, and of course the surgeons. We also had someone come by to ask for our consent to take a piece of the old liver to study it. Of course, we said yes! We hope that something good comes from that bad liver. It was such a busy day and yet went by so slowly. When we spoke with the surgeon he told us that his colleague was flying out to check the liver. He said that they could cancel the transplant at any time especially once they see the liver in person. But they all felt very good about it. We also found out the liver was O+ and was the perfect size for Beckett. What a miracle!! All the scary talks of cleaning his blood to be able to accept a different blood type now didn’t matter because we wouldn’t have to do that with a perfect match blood type. Around 3 pm we were told that they were on the way back and they had the liver with them. At that point we started telling our families. The OR time was originally set for 5:00 but got bumped back until 5:45. We didn’t end up taking him in until just after 6.

The hardest moment is kissing him good bye and watching the doctors and anesthesiologist wheel him away to the OR. That’s when I lose it every time. I trust them. I know they will take good care of him. But so much could potentially go wrong. It’s terrifying. Shawn and I cried and then walked outside to be alone and process. We sat outside the hospital. I texted a friend to come up and keep us company while we anxiously awaited for updates.

Through the past 8 months of near constant hospital stays, we have made a lot of friends at the hospital. Nurses, residents, attendings, ultrasound techs, interventional radiologists and other staff. As we waited outside of the hospital we saw so many people that we knew. And it was SO good to hear them ask about Beckett and be able to tell them that he was in surgery right now receiving his new liver. Once it got dark we headed inside to wait. We ordered pizza and settled in for the long haul. Thankfully our friends helped keep things light so that we could talk and laugh and it didn’t seem too stressful. After about an hour of waiting we received our first update. Beckett was prepped, sedated and they were about to start the actual surgery. The next call came two hours later. Still working on getting the old liver out, the new liver was cleaned and ready to go. Another two hours. Old liver out, new liver is being worked on. After that we got our last update. New liver is in, blood circulating, making sure there were no leaks and that everything is taken care of. And then the call that he would be going to the PICU (pediatric intensive care unit). Our surgeon called a little while after that to tell us that he did great and was stable through the whole thing. Everything looked good and we could go see him in just a little while. By this time it was just after 1 am. Our friends left. We walked up to the PICU waiting room and FINALLY at 2:45 am they said we could come see him.

I was nervous. We knew what to expect but I was a little afraid to see him. We walked to his room and there were so many people settling him in, preparing all his pumps of meds and fluids, cleaning him up etc. We were hesitant but walked over to him. We were shocked. In the 8 hours since we had seen him, he was already pink. I didn’t see anything else in that first moment. Just his skin that was already changing. After that wore off, I started to take in a mental image of what I was seeing. He was limp and still very sedated. He had a breathing tube, 3 drains coming directly from his abdomen, bandages over his huge incision, a bloody bandage on the right side of his neck and an IJ line (inserted into his jugular vein) on the left side of his neck. He was a mess. But he was so beautiful!!

Photo Jun 14, 3 08 10 AMWe stayed with him and got him situated and cleaned up. I stroked his head and arms. I was in awe of this perfect little creature. Around 3:30 I decided to get some sleep. Shawn stayed with him and slept by his side. I wish I could describe the feelings that we felt that night. I think I experienced every emotion you can imagine. Fear, worry, joy and utter relief. Oh the relief. It was as if a gigantic weight had been lifted from off our shoulders. Our little man would be ok. We are blessed.

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How foolish was I?

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Over the last 48 hours I have physically felt changes happening inside me. I have thrived off the adrenaline that can follow after receiving bad news. I can remember the moment when I felt my mind suppress my fears and true feelings and place them into a deep corner. It’s a dark corner somewhere that does not allow me to honestly process how I feel about the cards being dealt on the table. I am very aware of how I should feel but at the moment I feel hollow and empty. As the weight and pressure in my head increases I realize the adrenaline is gone. Exhaustion is setting in and it’s getting harder for me to continue to neglect my emotions. The breakdown is on the horizon.

(null) (3)I thought I was prepared. I had months to get myself ready. How foolish was I? To think I have been worried about what is on the other side of the fence when I haven’t even explored the side or area that I reside and am encompassed by. I have been so worried about the potential risks post transplant that I have completely ignored what has to happen for Beckett to receive a new liver and a second chance. Common scenario with transplants is the child listed has to decline and get worse in order to move up in priority on the transplant list. Get worse to get better. I admit to being ignorant and not worrying about Beckett getting worse. My anxiety has been focused on the small percentages of uncommon horrible things that could happen after Beckett receives his gift of life. I take it all back now.

(null) (4)I can’t explain what it’s like other than saying it is excruciating to watch my man cub transform slowly. It started with his skin and eyes changing color. I miss my pale faced and rosy cheek son. Many comment on his big blue eyes but all I see is yellow. His personality took a hit next. He stopped smiling. He became irritable. Groaning, moaning, and any other sound that he could come up with to express his dissatisfaction and discomfort. The latest changes include glazed eyes and constant desire to be sleeping. It feels like I am watching my son slip away. I am not ok with it. I am not ready for it. I want a do over. I want more time to get ready. Sadly, I now understand that no amount of time could ever prepare me.

This looks like it could be the potential of a very long road. I will wake up in the morning. I will stretch. I will tie my shoes. I will put a smile on my face for Beckett. I will keep walking down this road by his side. No matter how long it takes.

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Hurry Up and Wait

We are now approaching one of the longest times that we have been home with Beckett since he was diagnosed with Biliary Atresia. It feels amazing. Even though things are going well, it’s still been so incredibly stressful. About a month ago, we headed into the hospital for what we thought would be a two day stay. A belly draining and recovery and then home again. I wanted to get it over with because Shawn was headed out of the country and I didn’t know how to juggle being with the girls and Beckett, at home and at the hospital. It was just too much. So we headed in before Shawn left. Little did we know that our two day stay would turn into a two week stay.

We drained his belly (the scariest one so far) but we just couldn’t find a good balance of diuretics to keep his belly small for any significant length of time. It was so frustrating. Our situation has always been a little different because his belly fluid came from two different places rather than just one. Usually with these BA kids, they have ascites (abdomenal fluid) because their liver is so scarred. Blood can’t flow properly and so fluid leaks from their organs and their veins. This is part of Beckett’s problem. But the other issue stems from his surgery 5 months ago. During the surgery, his lymphatic system was damaged. So he had fatty fluid leaking from that. That was a huge part of the problem at the beginning. It’s the reason I had to stop nursing and he was placed on a special formula. But as we were in the hospital this last time, our doctor was concerned because this should have healed by now. It’s been five months and it should have taken a couple of weeks. She theorized that because of the massive fluctuations in his belly size, his lymphatic system couldn’t heal properly and was still leaking.

At that point, the decision was made to place Beckett on the transplant list, this time for real. At this same time our doctor wanted to try one last medication to see what effect, if any, it would have on the fluid issue. It was a medication that she had never used before in this situation. She had used it for other purposes but never for this. So we had no idea what would happen. We never were worried that something scary would happen to Becks, we just didn’t know if it would make any sort of difference. The medication works like a blood pressure med, except with your organs. It also slows everything down including liver function and digestion. I was ok with trying it but became a little concerned when I learned that it was a shot, three times a day. And it burns going in. We tried it a couple times but Becks didn’t tolerate it well, he cried and screamed. That’s just not like him. He can handle things much better than most people can so I knew it wasn’t a good fit. Plus it wasn’t doing anything. Then came our very last option. Same medication but in IV form. He had an IV placed and was on this medicine 24/7. For four days. So many tubes and monitors.IMG_7978

During these four days, although things were pretty slow with Beckett, they were crazy for Shawn and I. Because he was going to be listed for sure, our lives went into go mode. Beckett had an echocardiogram to check out exactly what his heart is like. We had a 2.5 hour interview with a social worker followed by a 3 hour teaching class all about liver transplants, statistics, things to expect etc. We also had a visit from a pharmacy tech who spoke to us for about an hour all about the meds that we can expect him to be on after transplant. So much information crammed into such a short time frame. I had a permanent migraine for several days. It was so much to take in and process.

At this same time, Beckett was placed on strict fluid restrictions. They upped his TPN and lipids to 21 hours a day, and he could have 3 oz by mouth a day. We had to strictly observe how much water we were flushing his NG (feeding) tube with. Every little mL was carefully counted and added up each day. We had moments where his belly grew too much and we had to start all over with which diuretics to use and at what dose. And then he would dry out, his mouth would get dry and his tongue would feel like sandpaper. He would gag and choke. Every morning they took labs to monitor his kidney function and check his electrolytes. After four days, he was taken off the IV medication but we stayed at the hospital for just over a week after that. And every day was the same. Labs. Monitor. Adjust meds and fluids. He had fussy nights and other nights he slept great. It was just so up and down each day.

Finally we got the ok to go home. His belly was staying stable. Dr. Book wanted an ultrasound before we left. She believed that the reason that his belly was staying small was that his blood was finding new paths to get where it needed to go. And she was right. I think the IV med also helped heal him a little but we saw significant changes in his blood flow. Right now it’s a good thing for him. There’s less pressure and so he isn’t leaking as much fluid into his abdomen. It could cause problems in the future. We will see.

Life since we’ve been home these past two and a half weeks has been good and stressful. He’s been dry almost the whole time. I should rephrase. His mouth has been dry. Every time we do labs, his kidneys are great and he is peeing fine and crying tears. So we know that he is not dehydrated but for some reason his mouth is so dry. We keep getting it wet with water or giving him wet towels or sponges to suck on. It helps and he loves it but he started waking up every hour during the night due to being dry and uncomfortable. It’s been exhausting. He also has gone on a feeding strike. I’ve been struggling to get 3 oz in him a day. And this last weekend, he completely has refused to eat anything. So for the time being, he is completely tube fed. Throughout the day we periodically push food through his tube. A couple mL’s every few minutes. We try to get 10-15 mL’s in every hour. If we push more than that, he vomits. It’s such a delicate balance. And it’s hard to watch.

IMG_8223We are still waiting for him to be listed. Waiting on insurance. It’s been a stress since the beginning because our insurance plan doesn’t cover transplants at Primary Children’s Hospital. We worked something out a few months ago but now that it is time to get an actual contract in place it is taking time. We had a few days a week ago where we were told that we would have to move or risk paying hundreds of thousands of dollars at Primary’s. It’s been so incredibly scary thinking of what we may have to do to save our baby’s life. But at my last appointment, insurance wanted us to do a few more things, more blood work, and an EKG so I’m crossing my fingers that they are continuing to work through a contract and we will be able to stay here and stay together as a family.

Beckett continues to be amazing. He has been rolling over like crazy and will even stay on his belly for about a minute now! That’s so amazing to me because he hates pressure on his belly. He won’t sit up or play in toys that put pressure on his tummy. So for him to be staying on his belly is a miracle. He is constantly smiling even though I know he doesn’t feel good. We are also starting to get some real weight on him. His cheeks are filling out and I’m starting to see that his wrists are getting fatter. It’s good to see him look a little healthier. IMG_0463Hurry up and wait. That’s our life lately. We rush to find a solution to an issue and then the next minute time stands still and we are left waiting. Waiting on insurance. Waiting for the call to come that he is listed. And ultimately, waiting for the day when our lives completely change and Beckett gets his second chance at life.

 

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Life’s Battlefield

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I was given two weeks off by my employer for the holiday season. Due to Beckett’s health, I have spent three whole days outside of the hospital. The family/home situation has been a little tricky and so Kim has spent a majority of the hospital time at home with Adalyn and Raemee. It has been such a blessing for them to have their mother around. I think it has helped them feel ok about their brother being gone.

While being alone with Beckett I have experienced some of the best moments of my life. Quickly followed by some of the hardest. I have learned things about my son that I probably never would have paid much attention to. His development in some areas are prohibited and yet he is shining in others. He has found his imagehands and his mouth during these past two weeks. He keeps me on my toes as he grabs all the wires and tubes attached to his body. My favorite is when I put my face close to his, he will reach up from his hospital bed and start to run his fingers and palms over the skin of my face. He does it so gently, inspecting every little part of me, and then will occasionally stop at my nose and squeeze. It makes me laugh every time and turns my insides gooey. I love the feel of his soft skin and scrawny fingers as he explores my facial features.

As I look over him peacefully sleeping, I am overwhelmed with feelings. Feelings of all kinds. Feelings I have never felt before. I have so many wishes. Wishes for Beckett. Wishes for our family. I am conflicted. I feel in over my head. I feel more love than I thought was ever possible to feel. I have to go back to work tomorrow and it pains me to leave my lil buddy’s side. Since our first child Adalyn was born I have bonded deeply with my girls. Yet, there is something different about Beckett. It is almost like, I can’t take his battle away from him, but being by his side makes me feel like I am fighting it with him. I want to spend every possible minute with him. The reality of Beckett’s possible future haunts me and I don’t know how to properly manage my feelings with what I have to do and am personally responsible for. Which is go to work and bring home the bacon.

imageI keep telling myself that if I don’t go to work, Beckett has no chance for survival. His battle would be over without our insurance and income. Does that mean our battle fields are changing? Can I still a member of Beckett’s army but can no longer fight by his side? He stays and fights in the hospital and I take the fight to the office? The weight is setting in and I realize that I have to bite the bullet. There is strategy in battle and a war is never won on a single battlefield. Some battlefields however may be the turning point of a war. Losing on the financial battlefield would absolutely be the turning point for Becks and our family. As I leave my general’s side, I know that this is the fight that must be fought. It’s a fight against my emotions. It’s a fight for survival. It’s a fight because I love ya Beckett! I’ll be back fighting by your side just in time for the weekend.

 

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Life is Everything but Routine

“So, they drained between 400 and 500mls of fluid. We are going to have him stay the night and monitor the output of his fluid through the drain. We should have him home tomorrow.”

“Just another routine stay right Dr. Book?”

She stops, turns around, looks up at me and says, “There is no such thing as routine. Each one of these kids is special.”

IMG_01655 miserable days later Beckett and I still find ourselves in the hospital. It’s Christmas Eve. It’s the most magical time of year and it feels anything but magical. If there is one thing I have learned from this hospital stay is that life as we know it is anything but routine.

There is a 2 year old boy from St. George, UT with Pneumonia in the room next door. St. George is roughly 5 hours away from Salt Lake City where Primary Children’s Hospital is located. He has a 1 year old little brother at home. Both his parents are here trying to get him home before Christmas. All he has to do is drink liquid orally and they can go home. He doesn’t want to.

Down the hall there is the most precious little girl who is just under the age of two. She was born with one kidney and has fought through hospital stays her whole life. They found out earlier this week that she needs a kidney transplant. They have been able to stabilize everything except one of her levels. If it stabilizes then they can return home to Idaho for Christmas.

Then there is Beckett. This boy has taken me to the cliff and brought me back from the edge. Only because of how much I love him. In the past 3 months we have now stayed 29 days/nights in the hospital. This stay out of all of the others has been the most painful and excruciating for me. I believe Beckett feels the same way.

IMG_0185Kim and I felt strongly that we needed to bring him into the hospital last Friday. We knew something was not right since Beckett’s demeanor changed drastically over a 24 hour period. Since then, he has endured being drained twice, daily blood work, IVs, a picc line, multiple antibiotics, change in diet, hydrating oxygen tube, and a catheter. For 4 days he wouldn’t sleep more than 1 hour for every twelve hours in the day. His breathing was strained, he ran a fever, and the only way to console him was to push him around the hospital in a stroller. I have never seen him so worn down and uncomfortable. In the meantime, nurses and doctors confirmed that something was wrong but didn’t seem to know the right course of action. When trying to address one issue, it would create others.

As a parent you can imagine the fear and frustration. You can imagine the pain I felt for my child who was suffering. I was confused. I still am confused. Regardless, slowly the anger snuck in. “Fix him! Figure it out!” Beckett’s behavior started reminding me of a visit we made to one of our liver friends who was teetering on existence in this life and how uncomfortable and irritable she was. I began visualizing my future with Beckett. The horror struck as I realized that this will one day be my constant reality and that Becks is only going to get worse before he can get better. I was not prepared for this life lesson and rude awakening.

I was praying constantly. So many people reached out and mentioned that they were praying as well. Yet Beckett, wasn’t getting any better. I began to feel like I was not praying correctly. “Maybe I am not worthy of God’s miracles” I thought. Why is Beckett not getting better? My faith began to crack. Doubt crept in. I felt the only way to be able to fix him is if I do it on my own. Yet, I didn’t know where to start. I am not a doctor. All I have is limited knowledge that has accumulated over the past 3 months. I knew I was missing something and I didn’t know what. I couldn’t see the clear picture. I wanted to scream and throw things. I remember just wanting to break something. At the same time, I knew that none of my desired temper tantrums would help.

IMG_0176Pondering Beckett’s scenario and racking my brain trying to come up with what God is trying to teach me, I realized that these feelings apply in so many scenarios. Knowing that you need a new career but not knowing where to start or where to go. Being turned down interview after interview. Understanding if you don’t get a new job your family is in jeopardy. Or having a loved one struggle with addiction. Doesn’t matter what kind. They are all consuming and life threatening. How do you help them? What do you say? Why do they keep doing these things despite how much you fast and pray? The list goes on.

Life is everything but routine. There are no official manuals or how to books that say “Do this and your whole life will be perfect!” However, there is a source of self dependency and humility that is required in these terrible situations. If you are not humble enough to admit you do not know what to do, that you need Gods help, and if you are not willing to grab the reigns and do your part then nothing is going to get better. I strongly believe it’s ok to be afraid, angry, and doubtful. Those feelings are normal as long as they drive you in the right direction towards results and hope.

We finally found the right direction with Beckett. He slept through the night and we are restarting his feeds today after withholding them for 24 hours. There are many obstacles that lay in this warriors path, but we will take them as they come. For now, we will give him what he needs and keep hoping and praying for the Christmas miracle.

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Quit Missing the Miracles

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I am lounging on the corner of the hospital couch. Kim is fast asleep occupying most of the couch on my left. I can’t blame her. Being beautiful ain’t easy! Beckett is sleeping comfortably in his bed to my right. It’s the first time this week that he has slept more than an hour without waking up. The only light in the room is from the glow of monitors that are pumping fluids into Beckett’s body. Outside the closed door of our plainly painted hospital room is the nurses station. I can hear them chatting it up and laughing. I feel comfort knowing they are so close.

These hospital weeks are brutal. I thought they would get easier. The problem with them is the tension starts long before the hospital stay begins. We have always had appointments on Wednesdays with our liver doctor. Monday rolls around and your body begins to tighten with anticipation. On Tuesday your stomach is sick and your head is wanting to explode from all of the unknown and “what if” scenarios that have been racing through your brain. Wednesday, your heart beats outside your chest and you have a shortness of breath because you know something bad is going to happen.

IMG_0126This week for some reason has been unusually harder than others. The initial shock of Beckett’s liver disease has officially come and gone and now we are facing the bare bones reality of it all. I am feeling overwhelmed from the stressful/emotional roller coaster. From good news that Beckett’s Kasai surgery is working to bad news that Beckett has Portal Hypertension, which could cause him to need a transplant sooner even though his surgery is draining bile from his liver. Good news that Kim can start breastfeeding again to bad news 24 hours later that leads Kim to decide to stop breastfeeding entirely. Good news that “you’ll go home tomorrow” to bad news of “it will be three more days.” I watched our doctor drain 16.5oz of ascites fluid from Beckett’s abdomen. I have been covered in multiple ounces of throw up on several different occasions. Tomorrow I will learn how to stick a feeding tube up my sons nose and down his throat into his stomach.

It is not uncommon that when we are in the hospital we receive extremely encouraging words and support from friends and family. Most often these messages come via Facebook and Instagram. These notes of love keep us going and help us see the positive in all the negative. Today I received a text message from a friend that said:

“Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. Those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion, which polish you for your everlasting benefit.”— Richard G. Scott

IMG_7344 copyIf I step back a minute from liver disease, discussions of transplant timeframes, vomit, and feeding tubes I can count the blessings of all that is going right. I can see the growth that Kimmie and I have experienced. I can take pride in what I am doing and what I have learned. I can feel comfort and peace from the prayers of hundreds who are reciting Beckett’s name in personal and family communion with God. That is a miracle! I question. How many miracles have I glanced over because I have been selfish and not compassionate? Would this week have been better if I had opened my perception up to greater understanding? Have I disrupted my own spiritual growth pattern because I have chosen to be comfortable with my attitude and daily routine?

Tonight as I ponder how miserable my week has been, my feelings turn to gratitude for the reminder that I received today from a friend. I am grateful for why these hospital stays are hard. I take pride in understanding that my Father feels I am prepared and ready to grow. It’s not fun and it’s not something I wake up in the morning and look forward to. It’s hard. Growing pains are uncomfortable and unlocking true understanding is going to take some practice. It’s a challenge and I don’t know if it will ever get easy. What I do know is that I don’t want to miss the miracles that are taking place all around me.

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Filed under Beckett's Battle, Perspective