Tag Archives: biliary atresia

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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my Liver Kid

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It’s 10:30pm. It’s been a busy night on the hospital unit. Cranky RSV kiddos everywhere. Beckett’s been fast asleep for the past few hours. Love my boy. I am sitting outside his room and have been attempting to write a blog post and am starting to get frustrated with the results. It’s evident that my writers block is going to continue. At the end of the station, Ashley, Beckett’s nurse, stands up and walks towards his door. My attention is now focused on her. She is opening his door. I pull my headphones out and am close behind her.

I enter the room. Ashley is untangling him from his chords. He is clearly not happy. I spot his bink and immediately grab it and put it under the faucet. He loves his binky wet before he takes it. I think it has to do with his diuretics drying his mouth out. He takes it and starts rubbing his eyes. All good signs that he will be back asleep soon. Once he is comfortably situated Ashley makes a move for the door. I begin to follow and Beckett starts screaming.

“Ok. Ok, Son. I am not going anywhere.”

I return to his crib side and he lifts his hand up. We look each other in the eyes. He doesn’t want to be alone. I lean in. His tiny little hand cups my cheek. His fingers begin tickling my face. He slowly moves his hand up my face to my hair. He is now grabbing and twirling my hair. His eyes close and his breathing returns to a regular pace.

(null) (1) copyI decide to stay a few minutes and soak in what just happened. As I step back from his bed, his eyes open. I’m still here. He is still calm. I walk over to the other side of his crib. He rolls over to follow me. I see the blinds are still open on his door so I walk over to close them. He rolls back over and watches me. Once I am done, I return back to the other side of his crib to sit on the couch. He rolls again and follows my every move. My heart melts a little knowing that I am enough for him. After a few minutes, he grabs his blanket and pulls it over his face. That’s the sign, he is ready to go back to sleep.

I am either sheltered or may be biased (and I very well could be both of those things), but I have never met anyone like my Beckett. He captivates me. Though he cannot talk he has been blessed with a gift to communicate deeper than language with those he interacts with. I felt terrible tonight as I recognized our blog posts and updates are dominated by his disease and the emotional pain that Kim and I carry from being parents of a liver kid. Yes he is sick, but he is such a good kid. Such a fighter and will be a far better man than I can ever hope to be. I am scared of him receiving a transplant but I am comforted by knowing he has a mission to do great things in his life. Even with pumps, tubes, and steady fluctuations of health, this boy continues to be the strength that his parents and sisters need. How can someone so little make such a big impact? Makes me wonder a bit what I am doing with my life. Makes me ponder Christ’s teaching to become like a child. Makes me grateful to be his father. #loveyaBeckett

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I’m beginning to learn…

Life with Beckett has magnified anything and everything’s capacity to be difficult. Raising kids, marriage, faith, employment, and I won’t go into the personal interests that have been tossed out the window. It’s been frustrating and exhausting on all levels. Several people and friends have told Kim and I that we are amazing and they don’t know how we do it. Thank you but let’s take a time out. Don’t overlook the hard things that you have to deal with. Don’t discount your own trials because we have a sick kid. Fact of the matter is, life is down right ugly and dirty, ruthless, hard, and sometimes very unforgiving. That’s how it was intended to be for everyone. Not just the family with the sick kid. Yet, there is supposed to be great joy with all of this. Tunnel vision and focus on the hard things make it difficult to experience joy and learning.

At some point you have to accept that you cannot do it all. For example, what comes first, church or family? Wait for it, wait for it… Neither. God comes first. If you are building a relationship with Jesus Christ and our Father in Heaven then you know which things should take priority. When you know what God wants of you, there is no guilt. Guilt doesn’t come from God. God only motivates and invites you to become your best self. You cannot transform when feeling fear and guilt.

I strongly believe that your best self changes depending on the scenario you find yourself in. For the past two weeks I have come down with an anger problem. I have never been a very angry person. However, my behavior reflects my four year olds when it comes to me being frustrated and not getting what I personally want. It’s embarrassing and I’m ashamed but while discussing my feelings with Kim she said the following:

“Where there is a greater capacity of anger and emotion, there is a deeper capacity for happiness and love.”

So do I feel more anger now because I feel more love than I ever have in my life? I think so. My anger is now an expanded part of my emotional system because I care about my family, relationships, and people more than ever before.

Beckett’s turnaround to good health after the holiday season was nothing short of a miracle. It was a much needed answer to prayers to prayers that for a while I thought were not being heard. It was a tender mercy from heaven that touched our family’s spirits in so many ways. It was a sign that God lives and he is ready to help. He is a loving Father who knows how to help is children stretch themselves. About a week into our “healthy vacation” as I call it, Kim and I began having interesting feelings. Promptings that we shouldn’t get too comfortable. They have prepared us for the past two weeks as Beckett has spiraled steadily into a state that has his medical team and parents concerned.

This crazy train has been the hardest thing I have ever had to deal with. It has brought out the best and worst side of me. I have questioned my faith and I have doubted my doubts. There are a few things which are clearer than others. I have learned more than I ever would have without this trial, sometimes I am grateful for that and sometimes I’m not. Yet, the thing I feeling strongly about right now is I have to find a way to understand what it means to have a true relationship with God. Lip service and Sunday worship is not going to do it any longer. Past experience has taught me that when life decides to do its worst I am not strong enough on my own to do my best.

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Our New Normal

We have now been home for a week. And we are starting to settle into our new normal. It goes a little like this:

7:15- Beckett stirs in his bed. Addie also comes in the room. “Hi Beckett!” I smile and lay in bed for a few more minutes while my oldest sweetie talks to her little brother.

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7:30- Beep! Beep! Beep! Beckett’s TPN and lipids are done. We have to unhook the tubes, saline flush his picc line and then flush it with heparin to prevent clots. We finish by placing a sterile alcohol cap on the end. We pick him up and cuddle on him now that he is tube free.

8:00- Rae starts to stir and Shawn prepares all of Beckett’s meds. 6 in the morning. A vitamin supplement, two diuretics, an antibiotic, a blood pressure med and a med to help keep his bile thin. He puts all the meds into Beckett’s feeding tube. Thank goodness for the feeding tube so we don’t have to fight him to choke them all down.

From 8:15-9:00 we get ready, head downstairs, let the dog out, feed Beckett, eat breakfast, sometimes get the girls dressed, and Shawn heads to work.

9:00/9:15- Tuesdays and Thursdays Addie goes to preschool. Oh how lucky I am to have a neighbor who takes her and picks her up. I don’t know how I’d do it. Beckett gets tired and I take him upstairs. Thankfully, he is starting to get back to his old self and has been putting himself to sleep.

9:15-11:00- The girls and I play, I clean, they play and make messes, we work on potty training Rae, I stop fights, we snuggle.

11:00- Beckett wakes. He is hungry again. He takes 2.5 ounces. It’s amazing. He used to only take 1 ounce every 4 hours. So this is huge for him. He now gets excited to see the bottle. We are making progress!!

Noon- I feed the girls and myself. Usually something easy like sandwiches or soup but sometimes I feel ambitious and make spaghetti or stir fry.

12:30- Nap time/Quiet time. Oh I love this time. It’s crazy getting the girls situated in their beds. And we just switched Rae to a big girl bed so it’ll be interesting to see if this time exists anymore. Once the girls are down Becks and I get a little time to ourselves before I put him in bed.

1:00- Beckett goes down for another nap. I head downstairs and clean up the kitchen. Straighten up the house a little and then I get to sit down. I either nap a little or I watch a show.

2:00- Addie’s done. She comes down to get a snack and watch a show while her siblings sleep. I clean some more or read a little.

3:00- Beckett and Rae get up. (Oh please Rae! Please take a nap in your big girl bed today!!) I feed Beckett again.

3:00-5:00- This is the time I usually get a lot of phone calls. The liver clinic will call, or home health. We change his meds every few days based on his labs. And home health is constantly talking to me about bringing me deliveries of NG tube supplies, or picc line supplies or the pharmacist calls to discuss his TPN and lipids. I also get calls from the home health nurses checking in and seeing if his picc dressing needs to be changed. Then I get calls from the delivery drivers letting me know when they will be coming by. The girls and Beckett just play and make messes. I love hearing the laughter and coos.

4:30/5:00- I put Becks down for a mini nap. And then I finally start thinking about dinner. Sometimes I make something nice. Sometimes I’m super prepared and throw something in the crockpot around 3. Other times we just make grilled cheese. Or grab take out.

5:30-7:30-  Shawn gets home from work, we eat, we clean up, we play, we dance, we feed Beckett. Then we like to watch a movie together and eat popcorn or ice cream.

7:30- The utter chaos starts. I head to the fridge and pull out Becks TPN, lipids and vitamins. I head upstairs to get it all ready and Shawn starts working with the girls to get them ready for bed. I’ve gotten pretty quick with setting up the TPN and lipids. I have to set the pumps up, prime the tubing, infuse the vitamins into the TPN bag, connect all the tubing, and change the end of his picc line. All while keeping everything sterile and clean. If I touch things, I have to start all over again. IMG_7622It’s quite the process. Meanwhile Shawn is battling the girls, getting jammies on, getting them to go potty, cleaning their rooms. Finally we reach a point where we all gather together, sing songs and say prayers. Then we put all three kids down. And then battle them to actually go to sleep. Becks is the easiest. He crashes and lately has been sleeping much better. The girls are a different story. Addie gets out several times, to tell us she loves us, to go potty, to get a drink. Then she goes right to sleep. With the introduction of the big girl bed, we are working on Rae staying in bed. We put up a baby gate so she can’t leave the room. Last night she yelled for Addie to save her. She also likes to strip naked at night. So it’s a work in progress.

Usually by 9:00, it’s quieter and we get a chance to relax a little. Talk about our days, watch some shows together. Then we head to bed around 10;30 and pray that all the kids sleep fairly well so that we get some rest.

My life is chaotic. My life is messy. My kids probably watch more tv than they should. We don’t always eat healthy. I get stressed and short tempered sometimes. My house is cluttered a lot. Things get neglected. I forget a lot. And guess what?

I ABSOLUTELY LOVE IT.

I love that we are all together. No one is in the hospital. Beckett is rolling over and has become a tummy sleeper (which is terrifying with all the cords). He is laughing. My girls are BEST friends. They love each other so much and are closer than I ever thought possible. They giggle and play pretend. They get to be kids and make messes. Shawn and I get to spend time together. We aren’t trying to keep our marriage strong from two different places. We are in the same house, the same room. We are happy. We are finally feeling a break from all the massive stress and fear. We are closer than ever. As much as I wish that Beckett didn’t have to go through this, that my girls wouldn’t tell people that their brother has a broken liver, that I hadn’t had to cry and worry as much as I have, I would never NEVER trade my life now. I love our new normal.

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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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Nacho Thoughts

IMG_0180Last week as Kimmie mentioned was just a real pain. The last 72 hours especially. I have had so many thoughts and feelings emerge. I’m trying to stay positive. I’m trying to quit missing the miracles that are taking place. It’s midnight, I am exhausted. Beckett can’t sleep. I can’t sleep. I’ve been fumbling, frustrated all week trying to extract my feelings from within to release them on a pad of paper and have nothing to show for it.

It’s midnight and I am now eating nachos in the Primary Children’s empty cafeteria. Beckett is in a stroller next to me wide awake and cranky. Kimmie is asleep on the couch upstairs in our room. I have no idea who the nurses are tonight and so now I’m eating nachos. Good thing I am on what I’ve been calling the “anxiety” diet. I don’t have to worry about stuffing my face with processed cheese because I’m stressing.

Will we be home for Christmas? What does Beckett’s future look like? Is he going to need to be drained every week? Where is my happy boy? When is he going to smile again?

It was so good to see my girls tonight for a few hours. I missed them so much! How do I make sure I have time and energy to provide Adalyn and Raemee with what they need?

How are we going to raise money for Beckett’s liver transplant once he gets listed? When is he going to get listed? How do I support my family financially when I feel a larger weight to support them physically and emotionally?

Why won’t Beckett sleep? What has been causing his fevers? Maybe I’m not praying right. Nothing is getting better. I don’t feel like I am getting answers. How do I pray then? What’s the Lord’s timing? How come I can’t see the bigger picture? What details am I missing? I feel like I am missing something. Why can I not see through the fog? Please let me see more than two feet ahead of me!

Ugh! I ate them all. My nachos are gone.

C’mon Beckett. Let’s go back upstairs and take another lap around the hospital.

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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

My 2014 Twenty & 14 Grateful List

In the spirit of Thanksgiving I decided to take a step back and make a list of the top Twenty and 14 things that I am grateful for. I have decided to leave them in random order because putting a numerical or symbolic meaning next to each of them is ridiculous.

  1. Beckett is on a medication that helps him pee the extra fluid in his abdomen out and he doesn’t need to have to carry his yellow accessory (drain) with him.
  2. Beckett’s poop has dark colors. Light/white poop is a sign of liver failure. The color of poop has never meant so much to me.
  3. That  “Number 1” and “Number 2” on my Twenty & 14 Grateful List both have double meanings. Do you get it? Number 1 and number 2. Seriously can’t stop laughing right now.
  4. We will be spending Thanksgiving at home and not at the hospital. Kim and I were worried for a while that this years feast would be taking place in the Primary Children’s cafeteria. May God bless those families who will be there in our place.
  5. Adalyn June. Addie is our oldest child. She is the symbol of love in our family. There is nothing that she wouldn’t do for her brother or sister. The sacrifices she has made during Beckett’s battle have been just as hard as any sacrifice that Kimmie and I have made and it doesn’t go unnoticed. There isn’t a day that passes that I don’t thank God for this princess being my first born. Love you June!
  6. Dr. Weston Spencer at Alpine Pediatrics in American Fork. The man gave us a chance by recognizing Beckett’s rare disease immediately and running the right blood tests. I will be forever grateful for him!
  7. The best neighbors. Seriously the best. We thought we were loved and cared for before but we had no idea what a neighborhood could do. Now it’s our turn to pay it forward.
  8. Subway sandwiches. You can’t beat the Spicy Italian. Lettuce, tomatoes, pickles, olives, mayo, mustard, and black pepper over pepperoni, salami, and some sort of processed white cheese.
  9. Our “primary” nurses. You know who you are. These nurses aren’t just employees of a hospital. They are family. We are so grateful for their willingness to accept our request. They take care of our son and watch over Kim and I. The weight they carry is just as heavy as ours as they counsel with our doctors. With tears in my eyes, we love you and are so grateful to have you angels apart of our battle.
  10. B E C K E T T. When Kim informed me that she was pregnant with Beckett, it took me several months to get on board with the idea of having another child. I wasn’t ready and was perfectly happy with my two sweeties. Becks, one day you will read this and I want you to know that you mean more to me than life itself. I would give everything I have up for you to live the life that you deserve son and to carry your BA torch. I am proud of you and will fight every day with you in battle.
  11. High by Young Rising Sons. I came across this song when Kim was in the last weeks of her pregnancy with Beckett and it became the theme song of her pregnancy. It has now turned into the theme song of Beckett’s life. Touches my core every time I give it a listen.
  12. Technology. How blessed are we to live at a time when medicine practices have never been better? Not to mention that when my family needs the prayers of others I can Tweet, Facebook, and Instagram a request to hundreds of people. There is nothing I can’t do from a smartphone/tablet. Working has never been easier in this time of needing to balance life and work.
  13. Family. What a beautiful thing family is. There is no better way to understand how our Heavenly Father feels than being a parent. I am grateful for my parents, in-laws, and the many other individuals who have acted as parents in my life. I am grateful for my siblings and the strength that we draw from each other.
  14. Domo, Inc. This company takes care of their own and I am proud to be a Domosapien. By the way, we’re hiring.
  15. Raemee Kay. This peach leaves me speechless on a daily basis. From the beginning she has been my stress ball. She is the most physically dirty kid I have ever known. She is the instigator of mischief and she is more gifted than most. There is not a thing my Mimi girl can’t do. I am willing to bet that she can make anyone smile. Rae, don’t change because you are perfect sweetheart. Saying I love you is an understatement.
  16. Snow capped mountains. Let’s be honest with ourselves for a minute and admit that it’s breathtaking and a scenic view doesn’t get much better than snow capped mountains. If you want to argue with me than take a look at this picture by my friend Br1dger and sit back down.
  17. Our home. It’s cozy. It’s warm. It’s located in a city that I swore I would never live and now love. It’s perfectly located for our little world where we live our life.
  18. My Father in Heaven. We have had some words lately. Despite my frustrations and pains he has always listened to me. However many times I fall he sends me help. He loves me and shows me so I don’t forget it.
  19. Freshly shaved legs. You’d think I’d be meaning Kimmie’s legs. Don’t get me wrong, those are hot, but I am talking about my own. Oh, daddy. There is nothing like getting in bed or putting on a pair of pants over freshly shaved legs. Try it for yourself if you don’t believe me.
  20. Kimmie. She is my world and my strength. She is my best friend and my eternal love. She is compassionate and forgiving. Kim has a way with our kids that amazes me. Since day 1 she has been my living example of the Savior and has continued to be my example since then. I would be lost without her and am so grateful she is my companion in this life and the lives to come.

And

  1. Sound of water. Now I am not talking about from your sink. I mean from a river, stream, or waterfall. The sound of constant crashing and flexible adjustments that water makes as it gets tossed, turned, and dropped by running it’s course. I find the sound soothing and peaceful. I think there is a deeper definition of “going with the flow” that we often glaze over.
  2. Organ donors. These individuals are true life savers. These selfless individuals understand what life is about and want everyone to live life to the fullest. If you’re not a donor, you should be. A wise woman that I greatly respect once said, “if your child needed an organ to save his/her life, would you take it? If yes, then it’s reasonably expected that you’d be willing to donate.” Click here to register today.
  3. My sister. This woman keeps going. She inspires me. I hope to be more selfless like her.
  4. Nacho cheese. So freaking good! Right?!?
  5. Cycling. It’s freedom on two wheels. It’s my pain playground. It’s the time where I channel my heart, mind, and muscle to move as one. On the bike I learn the power that my body has and how all of the moving pieces inside God’s beautiful creation come together to take me to my desired destination.
  6. Our Liver Family. These liver families have brought Kim and I so much peace and have helped fortify Kim and I. It’s a family that focuses on love and support rather than judgement. The circumstances of our association are not ideal but we are better people now that we are rubbing shoulders with them.
  7. Sunshine. Ahhh! Let’s face it, there are no words to describe it’s beauty.
  8. Car sunroofs. What a brilliant idea! It’s a perfect place to let the fresh air flow into the car while letting the sunshine in from above. It doesn’t matter where you are when your sunroof is open you feel like you are vacation. You feel cool and on top of the world. Everyone deserves to feel that way. If your car doesn’t have a sunroof. Sell it. Get a car that does and soak up the rays.
  9. Life Trees. You’re probably like “Whhhat?!?!” A life tree is a tree that has equal or more years of life than you do. They are tall, strong and have deep stubborn roots. However, no matter how big they are, no matter how strong, nor how deep their roots run, they find new ways and areas to grow.
  10. Dreyers Mint and Peppermint ice cream. #numnum
  11. Mexican food. Doesn’t matter what it is. Taco Bell, Del Taco, Taco Time, El Azteca, Maria Bonita, Mama Chu’s, La Costa or Red Iguana. I’ll eat it. Tacos, burritos, quesadillas, taquitos, tamales, enchiladas, or tostadas. I’ll eat ’em.
  12. Our liver team. Dr. Book, Barbie, Holly, Brook just to name a few know exactly what they are doing. It’s not their first rodeo and we feel so blessed to be with one of the greatest doctors and teams in the country.
  13. Jesus Christ, my Savior. When it comes to the sacrifice of The Redeemer of mankind, I have always focused on the repentance aspect and being cleansed from my sins. I am learning now what people mean when they say “by His grace we are saved.” His grace saves me when I am feeling discouraged, tired, and scared. I am saved by the strength that he provides me. I am saved because he gives me hope.
  14. You. If you are reading this it means you care. I am grateful for your support. I know you want to help our family. One day, I will ask you to. Today isn’t that day and it’s not the right time. Until then, please stay curious. Please stay involved. Please keep praying that Beckett gets stronger and don’t ever hesitate to ask Kim and I for anything.

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Filed under Perspective