Faith of a Child

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One evening 3 months ago we had just got the girls and our man cub settled into bed. Kim and I nestled in on the couch and started our nightly routine of, “what do you want to watch?” As we were scrolling through our Netflix list trying to make a decision Kim heard the unique sounds that only a child knows how to make coming from the stairs. She turned around from the couch to face the stairs to discover which of the two mobile children it could be. It was Addie. She had tears in her eyes. Kim noticed the tears immediately.

“Addie, what’s wrong?” she asked.

“I just want Jesus to come to our house.”

“You want Jesus to come to our house?”

“I just want Jesus to come to our house.”

I chimed in, “Addie, come down and talk to me sweetheart.”

Version 2She came quickly running down the stairs as if trying to escape a fire. I pulled her onto my lap and asked why she wanted Jesus to come to our house. She replied,  “I just really love Beckett. I want Jesus to come to help Beckett and Mommy feel better. I just want him to come to our house. “As the realization struck Kim and I of what Adalyn was saying and what she had been internalizing in her little mind, our eyes welled up with tears.

I didn’t know how to respond. I was speechless and felt stumped by my 4 year old. How do you tell your child that Jesus isn’t going to come to your house? He is not going to knock on our door and we are not going to get to see him. How do I explain this to her?

I wrapped my arms around her and I thought about it for a minute. I decided a prayer would be our best course of action. I asked her if we could say a prayer and she agreed. In that prayer I asked that Mommy and Beckett would be watched over by Jesus. That seemed to do the trick and Addie went back to bed.

I have pondered this experience countless times since it has happened. I have played it back in my mind over and over again. I think sometimes as adults we over complicate the simple and easy things. We poke fun of those who are innocent. We grown ups “know” too much when in reality we forget that the beauty is in the innocence of not knowing. We over analyze rather than seeing the situation or truth for what it is. We anticipate and make plans for the outcome or future without really having a knowledge of what the future has in store. At least I do. We (big people) draw a line in the sand between faith/hope and reality of life. To children this line does not exist.

IMG_1270As much as I prayed for a miracle that Beckett would get his transplant I did not exactly feel confident that he would get one. For a while the plan that God had for Beckett seemed unclear, uncertain, and often times completely non existent. My hope was diminishing quickly. I could honestly compare myself with the father in the New Testament who took his child to Jesus and said, “Lord I believe; help thou my unbelief.”  After watching Beckett’s miracle gift come together and looking back at all the moving pieces there is no doubt in my mind that God was at the helm the whole time. He knew exactly what he was doing. It was a true miracle and nothing short of a miracle. I feel ashamed for doubting. I am embarrassed by my lack of faith. I was trying so hard to be a father, protector and a provider that I completely overlooked the fact that I needed more than ever to become as a little child.

This afternoon Adalyn and Raemee are coming to visit their brother in hospital for the first time since his liver transplant. I can’t wait to squeeze them both and tell my oldest princess, “Guess what Addie? Jesus came and Beckett’s getting better!”

 

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The Timing Will Be Perfect

For the past several days, Shawn and I have been sick to our stomachs. We don’t know what’s coming. We don’t know what we will have to endure. We don’t know when relief will come. I began feeling impatient and I knelt to pray. I prayed so hard that his liver would come now. That he wouldn’t have to wait anymore and that we could move on with our lives and stop feeling so scared, anxious and stressed. I then had one of the most powerful teaching moments that I can remember. I had a distinct thought come into my mind. It was so clear and it was nothing I had been praying about or thought about before. It was as if someone was counseling with me.

“You are being selfish. In your impatience wanting a liver now for Beckett, there may be another family who needs time to say good-bye. Time to grieve. Or one more happy day with their child.” My heart felt struck and I started to cry. I have tried really hard to be ok with the Lord’s timing. Most of the time I do fine. I accept that things will happen when they are supposed to. But I never gave much thought to the fact that the Lord’s timing is perfect on ALL sides. Now I’m not saying because I had this thought that he will receive a transplant in the next day or so and there is literally a family grieving right now. But I believe I had this thought for a reason. So I can greater grasp the magnitude of the Lord’s love for all his children. That when a family is grieving their loss, they will have adequate time to do so. He sees all sides of the picture where my view is limited.

We have always prayed for our donor family. But our prayers were so focused on the peace for them after their loss. My prayers have changed. Of course, I want Beckett to receive his second chance at life soon. I want him to be ok. I want him to be safe. I want him to live. But I now see there truly is a much bigger side to this. And I pray the timing will be perfect. That his donor family will have time. Time to enjoy, to love, to say good-bye. I will never be able to thank them adequately enough for the way they will change my family’s lives. The least I can do is be patient and give them the time they need. I now pray for them in a much deeper way than I have before.

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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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A Letter in Colors

Dear Beckett,

Ever since you were born, I have seen the world differently. Small things mean so much more; I see things so much more vividly. And everywhere I look, I see colors. Colors that remind me of you. Colors that make me laugh or make me cry.  So I wanted to write them down so I always remember how colorful you make our lives.

Red- The first thing I think about when I see red is that little tongue of yours. Always out of your mouth, ever since you were born. It was always a sign of you being happy and then once you started smiling, it always accompanied the smile. Now your tongue hangs out because your mouth is so dry. But it’s still the cutest thing I’ve ever seen. Red now also reminds me of blood. Oh there have been way too many times that I have seen your blood. Weekly, sometimes daily, blood draws and most recently bloody noses. It’s hard to see your blood because it’s a constant reminder of what you battle every day.

IMG_8188Orange- Orange makes me laugh. It reminds me of when we were just starting out with your feeding tube. We had a learning curve. And we wanted your sisters to be involved. So Addie asked to help give your meds. We agreed. Your dad kinked the tube, put your syringe in (the one with the orange vitamins), and then told Addie to push it. One slight problem. He forgot to unkink it. Addie pushed with all her might and BAM! Orange medicine exploded everywhere! Both you and Addie started screaming! I think it scared you both. In the moment it wasn’t funny but now looking back, I can’t help but chuckle when I see the color orange. P.S. Orange is one of my favorite colors of clothes on you. You look darling.

Yellow- Yellow used to be one of my favorite colors but now it scares me. Because when I see yellow, all I can think of is your jaundiced skin. It’s hard looking back at some of your photos and seeing just how yellow you were. And knowing that you will most likely get that yellow again as your liver continues to fail. Even now, I see the yellow returning to your eyes. And it petrifies me. Yellow also reminds me of your TPN. I looked yesterday and you’ve been on TPN for 118 days now. 118 days. That’s 1/3 of the year. I can’t believe that it’s been that long.

Green- Oh I love the way green makes me feel. It reminds me of fun. Your bouncer is green and man oh man, do you love that thing. You get it bouncing like crazy. I can always get you to smile when you are in it. Sometimes you even fall asleep bouncing. Your favorite toys are also green. The first is a rattle with jingle bells on it. Sometimes after you’ve shaken it for 10 minutes straight I just want to throw it across the room, but then I look at you and see how content you are and I just smile. Your other favorite toy is mine as well. It’s a little green matchbox car. When I give you that car, you look so intently at it, and with one little finger you reach out and spin the wheels. I love seeing that. You are such a smart boy. And you keep learning how to manipulate the world around you. Oh how I love it.

IMG_8751 Blue- One word. Eyes. Oh your eyes. So big, so round, so blue. Whenever anyone sees your pictures or looks at you, they always comment on how beautiful your eyes are. And they are. You are an old soul. And that beautiful soul radiates through your eyes. I hope they don’t change color. I hope they stay blue forever. They are my favorite feature of yours.

Purple- Purple brings shame and sorrow. When your belly started getting big, we discovered that you had portal hypertension which caused your veins to become so prominent. Every time I change your clothes or bathe you and I see your big purple veins shining through your skin, I feel sadness. The shame comes from an accident that you had during one of your many hospital stays. I had just arrived at the hospital, given you kisses and then went to grab some food. When I came back I thought you were asleep so I started to eat my dinner right outside of your room. A couple minutes later, I heard a blood curdling scream. I rushed in to see what was the matter and to my horror, I found you on the hospital floor. The side of your crib was down and you had rolled out. I screamed for the nurse, and immediately was sobbing. I cradled you in my arms. A couple nurses came running in and started checking you out. I looked at one of the nurses and kept sobbing, “I put the rail up. I know I put the rail up.” I was devastated. How could I have done this? How could I have hurt you, unintentionally, but still. We later found out that the rail of that particular crib wasn’t latching right. You had to really make sure that it locked in place. So although I did put the rail up, it hadn’t locked. Oh the guilt I felt. And for the rest of that week, I was constantly reminded of it because you had bruises. Purple bruises on your leg, your cheek and your forehead. It could have been so much worse and I’m so grateful that you had angels watching over you.

Peach/Pink- Your lips. Your skin. Those rosy cheeks. Oh I love to kiss your pink skin. I treasure the pink that I see in you because I remember when you weren’t pink and I see the pink going away. So I will kiss your cheeks over and over and over again.

White- I dread white. White reminds me of the hospital. Those stark white walls. The moments we received horrible news. Stuck in those rooms for days on end. I don’t love white. So sterile, so boring, so restricting.

Brown- Brown reminds me of your hair. I know that sounds silly but I treasure your hair. When you were born your hair was brown and I was so happy. Addie has blonde hair and although Rae’s hair started out dark it is so much lighter now. So I was thrilled to see the dark hair on you. As we started into your liver disease your hair stopped growing and then as your nutrition got worse, all your hair fell out. Within two days, your hair was gone. I remember pulling chunks out. It was so sad. And then the TPN kicked in and your nutrition was better. And within a week, your hair was back! And it was still dark brown. I love how fuzzy your hair is, I love your crooked hairline. But most of all I love your long brown eyelashes. Everyone comments on them and they just keep getting longer! You’ve even been called a girl a few times. You’re so lucky to have such long eyelashes. They compliment your blue eyes so well. You are such a handsome little man.

Family-131Black- This color has become one of my favorites. Because when I think of black, I think of several very vivid moments. Each happens in the middle of the night. I wake up and the room is pitch black. I quietly climb out of bed and walk over to your crib. I watch your outline. I reach my hand into the crib and place it on your belly or your back. I feel you breathing. I feel the peace and quiet. I usually end up crying at your perfection. Oh Beckett. I love you. I will never forget those moments. And I will continue to watch over you in the night.

Thank you Becks. Thank you for bringing so much color into my life. Thank you for helping me enjoy the little things and let go of the big. Thank you. I love you baby boy. My cup runneth over.

Love you forever and a day,

Mama

 

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Moving for a Miracle

4:32am: I feel pressure on my shoulder. It’s Kimmie. My first inclination is to pretend like I didn’t feel anything and fall back asleep. I then hear Beckett. The voice in my head calls him a monster. He woke up
at 4:30am the previous day as well. Starting to feel like Groundhog Day.  I roll out of bed and get him taken care of. I rest my hand on his face, he reaches back and grabs my fingers. I love this lil Booger!

4:45am: I am back in bed. Stress hits me. I start thinking of my travel for the day and my meetings while I am out in Chicago. AGENDAS!!! I hate meeting agendas but they are the necessary evil. I haven’t prepared them yet. I need to get them sent out. I tell myself that I will do them on my flight. FLIGHTS!!! I haven’t booked my flights yet for my trips coming up. Anxiety is now rattling my cage.
5:00am: I can see the darkness in the room changing tone. Ugh. What am I doing awake? I turn to Facebook. After a quick browse I put my phone down. I start thinking of new friends. Oh how I like them. My mind gradually slips into thinking of old friends and then really old friends. I can’t help but reflect on how they have all changed. How they have changed? How much have I changed? How much have I changed in the past week? Seems small but deep down I know it’s bigger than I am giving these changes credit for.
5:30am: Scripture time. Might as well do it now and maybe I can read myself back to sleep?
6:00am: My body is now restless from forced attempts to fall back asleep. I roll over. The closed window blinds are now glowing around the borders where the gaps are. The sun is rising behind Mt. Timpanogos. I pull my headphones out from my bedside drawer. Maybe music can help distract me and I can rest?
6:30am: Still wide awake. My alarm goes off and I roll quickly out of bed and begin stretching. Oh, relief.
6:45am: I pull on my running pants. Emotions trickle through my body. The emotions reach my eyes and I quickly blink and think of manly things to distract me from tearing up. I finish getting ready and take two steps down the stairs and then….
“Crrrrrrrreak!”
It can only be one person. It’s my oldest. She has a long history and a sick sixth sense of interrupting my desire to begin a workout on time.
“Good morning, June!”
“Hi Dad, I waked up super quickly so I could see you!” I couldn’t help but laugh. Sixth sense confirmed.
7:00am: Finally out the door. To begin my first day to a new commitment. The commitment of #movingforamiracle. Bill and Andy, the parents of Dru, one of the most beautiful little girls you will ever see, 15 days ago started running a mile a day with the commitment of doing so until Beckett receives his liver transplant. When Dru was on the waiting list they did something similar and I was blown away when they began running for Beckett and asking others to do so as well. How could I not join them in the cause? If I don’t join them, how could I expect others to do so?
7:05am: I get to my starting point. I begin skipping. Don’t ask. It’s what I always do before starting a run. I think it helps me find a rythim. I generally have headphones but not today. I wanted to pace myself to the beat of my heart and listen to the gravel crackle beneath my feet. I take a deep breath. I smell the dew resting on the grass in the fields by our home. It takes me to a place deep inside where harmony and balance reside. I pick up the pace.
I feel great. I feel in control. I then hit a hill. I can feel the resistance increase. My breathing gets harder. I think of Beckett. I can hear him breathing heavy in my mind. My memory is now flashing through all the times that he has done so because of the pressure on his lungs caused by fluid inside his abdomen. A fire inside starts burning and I am determined to conquer the hill in front of me. With this new determination, I lift my head up and I see the shadow of a church steeple. Comfort calms the fire burning as I realize how amazing our church ward/congregation has been. So much love. So much support. So many prayers and people fasting. They are making sacrifices for our family. As I focus on the steeple, it’s shadow moves and the sun emerges. It hits me. It’s warm. In its warmth I receive answers and confirmation that God is aware and he loves me. I am blinded by the light, I can’t see anything in front of me. God is reminding and teaching me that I don’t need to see everything clearly. That trials, obstacles, stress or worry are blinding objects in life. Even though I can’t see, the Lord is my light and can see clearly the path before me. Tears begin slowing rolling down my cheeks. They feel cold. For a moment I feel vulnerable. It’s just me and God and I don’t have to hide from myself. This sense of freedom empowers me to reach my destination. I get to the top. For the first time at the end of a run I didn’t want to stop going. So I didn’t. I kept moving forward and eventually made my way home.
7:30am Home.
It’s in the moments we least expect that friends emerge and God shows his hand. I never knew how much I needed to move for a miracle. The miracle of Beckett receiving a liver and the miracle of myself finding peace when I have not been able to for so long. Ironically we found out today that Beckett’s Kasai surgery to give him more time is no longer working. Every day now, I move for a miracle and I invite you to do the same. #loveyaBeckett

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Angels

“Mom, can I have a sleepover with you?” My favorite words when I am here alone with the girls. Addie always wants to sleep with me. And I let her. I put her to bed on Shawn’s side and go downstairs to relax for a little while.

A couple hours later, I quietly climb into bed. Suddenly I’m wide awake. All I can hear is the sound of Addie breathing. I turn onto my side and stare at her. IMG_8375 - Version 2At my beautiful first born. How peaceful she looks. How still. And perfect. She is an angel. My eyes well up with tears. I reach out and put my hand on her to feel her breathing as I cry. I love having her sleep with me when I am alone. She makes me feel safe. She makes me feel peaceful and calm. She is my angel here on earth.

D&C 84:88

88 And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.

Oh how I love angels. And need them. My family is surrounded on a daily basis by many earthly angels who love us and take care of us. From all the gifts, to texts and calls, and then to those that help us regularly. My friends are angels. The friends that take Addie to preschool every day, that take my girls on play dates. The ones that are there for me emotionally. They let me be who I am. They let me go through whatever emotion it is I’m feeling. Even if it’s the same emotion we talked about the week before. They love me. They hug me and cry with me. They are amazing.

And then there is my mother in law. She is an angel. She has so much going on in her life and yet, she is there for us. She never hesitates to check on us. She watches my girls constantly and never complains. She loves my children. She makes sure that they know they are loved and not forgotten. She hugs me and encourages me when I am scared out of my mind. I will never be able to express to her just what her service has meant to me. How much I respect her and want to be just like her when I grow up.

Earthly angels are around me everyday. I also like to think that there are some special angels watching over us, especially my little man. I have a few in mind that I pray will protect my son and help him, four to be specific. The first is my great grandma Ruby. I wasn’t particularly close to her but I remember her vividly and have always felt a special connection to her. I pray that she is with me comforting me and helping me take care of my family.

The second is Shawn’s grandpa. Grandpa Rogers passed away a couple months before Beckett was born. He was an amazing man and had so much love for everyone around him. I like to think that he and Beckett were close in Heaven before Beckett came to our home. I like to think that he prepared Beckett and encouraged him. And I like to think that he is here a lot, taking care of his great grandson.

The third angel is Dru. Dru was another BA baby who fought fiercely against her disease until her little body couldn’t fight anymore. She was a beautiful soul. Whenever we are in the hospital with Beckett, I love to picture her by his side. She went through what he is going through. I like to think she helps him conquer these tough situations and cheer him on when he’s doing well.

The last angel is a special one to me. Before we had Addie, I lost a baby. Both Shawn and I felt so strongly that the baby was a boy and it was a devastating loss. I think of that baby constantly. And when I struggle, or when I celebrate, I like to wear a necklace that has a charm to represent that baby. It makes me feel like that little one is with me. I know that some may not agree with me, and that’s ok. But I feel that baby is near us, watching over his brother. Protecting him. Loving him. And that brings me peace and joy.

I truly believe that whether we recognize it or not, angels surround us at every turn. Earthly angels and heavenly ones. And they are there to protect us and lift us up, to lift our spirits. To help us feel peace and comfort. I love that. And I will thank my Father in Heaven every day that I have so many angels in my life.

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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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