Author Archives: kimstin

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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He is Yours

As I was driving home alone the other night to spend the evening with the girls, I found myself contemplating the day. We had just been told that Beckett would be listed to receive a new liver, that there were no other options. Our doctor was out of ideas and Beckett just wasn’t responding to any of them. I had handled the day well, processed what was happening and hadn’t cried much. It was dark outside. I was focused on driving, the cars around me, the lights. But then my thoughts drifted to that morning when we had gone to pick Beckett up from interventional radiology where he had gotten his belly drained. When we arrived, he was limp, and unresponsive. His blood pressure was lower than I’ve ever seen it. The nurse was trying everything to wake him up. To stabilize his blood pressure. I’ve never felt so scared or so helpless.

My eyes welled with tears in the car as I recalled our morning. Then as I continued to reflect on Beckett being listed and what that entailed for him, getting really sick, major surgery, possible complications, life long medications, blood draws and doctors, I started to feel so small and I began to weep. Furiously brushing the tears from my eyes so I could focus on the road. But they wouldn’t stop. Then came the sobbing. I started to pray out loud, to express my frustration, my fear, my relief. As I was praying I said, “He is yours. Heavenly Father, he is yours. Please take care of him. I will do my part. I will love him and take care of him to the best of my ability, but ultimately he is in your hands.”

He is yours. Liberating words. I can’t do all of this alone. I don’t know what will happen to my son. But I know God has a plan and I trust him, no matter the direction.

I see Addie struggling. I hear her cry because she loves her brother. All she wants is for him to come home. “She is yours.”

I see Rae regressing. Throwing tantrums. Trying to control the situation around her while her life feels out of control. “She is yours.”

I see Shawn. He is so strong. But then I see the slow tears run down his face or he gets real quiet and shuts down. I don’t know how to help him. “He is yours.”

And I know where I am at. Trying to hold it together for everyone. Trying to make sure everyone is loved and taken care of. That no one is forgotten. Trying to swim and not drown. Trying to stay positive. “I am yours. Please take care of me.”

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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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Light

“We see no reason not to move forward and list Beckett.”

Oh the words that I’ve known were coming. It came out of the blue though. We have been in limbo for quite some time. Beckett’s liver labs and bilirubin levels keep going down and yet we’ve been in the hospital almost weekly dealing with massive amounts of belly fluid (ascites). Nothing works and yet they kept telling us that he was fine. It was so hard. How can he be fine when we are here all the time getting his belly drained? So when we found that there was a potential clot in his portal vein the doctors made the decision to move forward with listing Becks for transplant.

I saw the light. Finally. Instead of drifting around aimlessly, I finally felt like we could see the lighthouse. Our little boat had direction. We could now navigate through the big waves and stormy seas because there was the light. Even though I knew the light was still far away, I could see it! And then our week exploded.

We met with countless doctors, kidney doctors, surgeons, infectious disease doctors. Beckett had a cat scan, more ultrasounds and he had an incredible amount of blood drawn. We knew that we would still need to meet with social workers, financial aid people, and our liver team for a day of education. Holly, our liver transplant coordinator, brought by an entire binder of information for us. In the meantime, we were trying to get Beckett’s ascites under control. They drained his belly twice. They left the drain in. We tried IV diuretics. We tried multiple new diuretics. He started getting fevers. He wasn’t eating much. But as stressed as I felt, I could still see that light. He was being listed. The end was coming. Eventually.

We solved some of the problems. The drain was taken out and the fevers went away. We started TPN (total parenteral nutrition) and lipids (fats) which is a boost of nutrients, proteins etc to give him the calories and nutrition he needs so that he starts gaining good weight. We started him on a blood pressure med and several new diuretics in “industrial sized doses”. And suddenly his belly stopped growing as quickly. We were finding answers. Because of the cat scan we found that his portal vein was not clotted but instead it is incredibly narrow causing the same effect.

“Because we have things under control and his vein is not clotted, we are going to hold off with the listing.”

Just like that the light was snuffed out. We were adrift in the ocean, being tossed about, lost. No direction. This has happened before. We find a solution. It works for a couple days and then we are right back in the hospital. I don’t think I can do this. There is no ending. Will we spend days in the hospital? Months? Years? How do I raise my children when we have no security? When our lives are constantly tossed to and fro?

I was devastated. Don’t get me wrong. I was thrilled that he was doing well. But I have a hard time trusting that these solutions will work when they never have previously. It’s not that I want him to have a transplant at 6 months. I would love for him to be big and strong before he needs it. But I don’t know how to survive for a long time when we spend so much time in the hospital trying to get him to be ok and he’s not even listed. Mentally those hospital stays are easier when I know that transplant is coming. Now I just feel plunged into the darkness and the despair.

Then my baby boy laughed for the first time and a light appeared. He rolled over for the first time. Another light. His belly stayed small for 4 consecutive days. It did not slowly grow bigger, but it stayed small and soft. Light. We had friends and family reach out and bless our family. More lights. We came home and I watched my children together. Saying sweet things. Watched as Beckett couldn’t stop staring and touching Addie. Watched his smile. More lights appeared. In my mind I looked around and realized that I am in a dark field looking to the sky. And it is full of stars. As my world gets darker and scarier, more lights appear in my sky. Some are little, others are large. But they are my hope. That this will end. That things will get better and brighter.

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“Look Not Behind Thee…”

It’s quiet. It’s peaceful. The Christmas tree lights are on. My babies are asleep in their beds, occasionally coughing. I text Shawn at the hospital. Happy New Year’s Eve. What a year this has been. What joy we’ve felt. What peace. And then what heartache, anger and frustration. I start to feel myself sinking. Sinking into sadness at the direction my life is taking.

I need the Spirit. I need my soul to be taught. I say a small prayer and act on the first thought that comes into my mind. I find a video about New Years. And my soul soars.

We had a hard year. We’ve been terrified. We’ve learned many medical terms that I wish I didn’t know. We know how to take care of NG tubes and PICC lines. We have watched our baby endure surgery, blood draws, and watched as his belly fills up with fluid only to get to the point where he is struggling to breathe and needs the fluid to be drained. 8 times now. 8 times in two months. We are watching him waste away. Watching as his spine sticks out more and more. Watching as his arms and legs and bum get skinnier and more saggy with just his skin. It’s hard. It breaks my heart.

We haven’t said anything yet but when we came into the hospital this last Monday, we found that his portal vein is clogged. This is the reason we can’t get his fluid buildup under control. His surgery worked. It worked! But there is this weird disconnect where his liver is able to drain the bile but the blood can’t circulate the way it needs to because of the clog in the portal vein and the scarring of his liver. This means that the fluid leaks out of the veins into his belly. There is no fix except through a transplant. So the decision was made to list Beckett for a transplant. We were relieved. Finally a reason for why he is still so sick. Finally a direction to go. And then reality hit. A transplant. He is not even five months old. He’s so little. He’s so scrawny. Now we’re moving to major surgery. And lots of waiting for an available liver that matches him. Knowing that he is going to get so much worse before he gets better. We could lose him. We haven’t had enough time with him. So much fear and anxiety.

I’ve had many moments of wanting to go back. Wanting to go back to the time when life was easy and perfect. When we didn’t know about liver disease. When I didn’t know heartache the way I know it now.

But I’ve made a choice. I am not Lot’s wife. (Genesis 19:17,26). I will not look back. “She doubted the Lord’s ability to give her something better than she already had. Apparently, she thought that nothing that lay ahead could possibly be as good as what she was leaving behind” (Jeffrey R. Holland ‘The Best is Yet to Be’).

As I watched the New Year’s video last night about Lot’s wife, I had a glimpse of my future. I saw vacations with my whole family. I saw laughter. I saw late night conversations. I saw a little boy running around with joy on his face. I saw a future missionary for our church. I’m never looking back. I’m never wishing away this life I have now. I’m never wishing away the person I am becoming nor the people I’ve met who have helped me and changed me. I know that this year is going to be hard and painful as we potentially will watch our son receive a transplant. We will have many scary days. Lots of time in the hospital. And yet, I know that the Lord has such amazing plans for my family, whatever form they come in.

Today is the first day of 2015, the first day of the rest of my life. The first day of the rest of all our lives. Stop looking back. Focus on the future. Because it’s bright. And shiny. And wonderful. And God loves us. He loves me. And He loves my son. IMG_7496

 

 

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I Am Not Forgotten

I hesitate to post this. I hesitate to share the reality of my life sometimes. Because it’s not always pretty. I hesitate because I worry what people will think of the way I react to situations. But it’s my truth and sometimes I just can’t keep the thoughts in. So here it goes.

We’ve been home for two days. And they’ve been rough. Within hours of being home, we managed to clog Beckett’s feeding tube. The medicine was just too gritty but being newcomers to it all, we didn’t even think about it. We tried to flush the tube. No luck. Pretty soon we were both so frustrated. What do we do? Do we pull it out? Do we call someone? Meanwhile, it’s 9:30 and our girls are running around crazy. Beckett is starving and crying. We feel frantic. Do something. We start blaming each other and our words get harsh. We get mad at the girls. Finally they are in their rooms. We pull his tube out. Completely clogged. I spend five minutes unclogging it. Now what? We need to start his overnight feeds. Frustration is mounting. I finally just put the tube in. We get the feeds going. Relief for about 30 minutes until Beckett becomes restless and starts having a hard time. His belly is not adjusting well to the overnight feeds. We get him to sleep and crash ourselves. He wakes in the middle of the night and pukes. I rinse out everything and clean him up. Shawn helps get him situated. We are exhausted.

Morning comes and we get going and Shawn goes to work. I’m on my own. I don’t sit down all day. Our next night is not better. After a day of running around and feeling tired, we get home late from a family Christmas party and it starts all over again. We are at our wits end. We get his feeds going and get the girls to bed and it looks like we might actually get some much needed alone time together. But Beckett won’t fall asleep. He is writhing in his bed crying. He is so tired. We try everything. More food. Binky. Lavender lotion, Rocking, Sshhing. Gas Drops. Nothing will help him. We strip him down and lay him on our bed, trying to calm him. Two hours later, he finally settles down. We fall asleep, angry and exhausted. Beckett wakes up at 5. He has blown out of his diaper. All over our bed. We take the sheets off and clean them up. All the sudden he starts vomiting. More time spent rinsing and cleaning and soothing this sick baby who is struggling. More angry words at each other. We are stressed. A couple more hours of sleep. Once we wake, Shawn gives Beckett his meds and he throws up again. I cry. I can’t do this. Shawn has to leave to work again.

The girls need me. Beckett needs me. But I’m angry. And exhausted. I’m confused and my mother heart aches for this sweet baby who is suffering. The girls argue a bit and I lose it. I completely broke down sobbing and yelling. Yelling at the girls for fighting. Yelling at God. He gave this trial to the wrong person. Trials are supposed to bring you down to ultimately help you grow and become a better person, more Christlike, with more empathy. But this trial is not doing that. It is breaking me and turning me into someone I do not want to be. So I was angry. And then the guilt set in. How can I treat my children this way? Why am I not stronger? Why am I such a brat to my husband who is just trying to help? Guilt leads to depression. Why do I feel so alone? Why am I forgotten? Why is God not helping me? Why can’t anyone see and understand this pain and hurt I feel EVERY day? It’s Christmas time and it’s supposed to be magical and wonderful. It’s not. It is stressful and frustrating and scary. I look at the world going on around me and all the joy and I feel so forgotten and lost. I plead with my Father, please help me. Please do not let me drown. Please do not let me shrink. Please save me.

After hitting rock bottom, I start taking care of the things that need to be done for the day. My head pounds and my eyes ache. My doorbell rings. It’s a dear friend. She takes one look at my eyes welling up with tears and asks if she can come in. All she came to do was drop some coloring books off for the girls but oh how I needed her. We talk for hours. In that time span several other friends reach out to see if I’m ok. Later on I talk on the phone to another good friend. Another friend reaches out to see if the girls can come play. All of these women say things that I need to hear. They validate my feelings. They address my deepest fears without me saying anything. They love me. I am not forgotten.

My hard days are just beginning. It feels terrifying to know what we have in front of us. I feel like I will not be able to handle it when I have a hard time with these minor things. I know many tears will be shed. But my Father in Heaven showed me something today. He will not take my hard days away. But He has not forgotten me and he will prompt others to reach out so that I always feel His love. And those little texts, or calls or drop by’s show me that I am not forgotten.

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Doubt

Ever since I was a little girl, all I ever wanted to be was a mom. Growing up, I loved to watch my siblings and eventually I started babysitting other families. I loved it. I may not have been the best babysitter but I learned a lot. And I was so excited and ready for my own family.

After Shawn and I were married it didn’t take us long to decide that we were ready for kids. And then Addie joined our family and my dreams came true. I was a mom.

Being a mom came easy to me. Sure there were hard days and frustrating times, but it felt like I was made to be a mom. I had natural instinct about what was going on with her.

Then came Raemee. Everyone said two kids was hard. But I figured it out and it didn’t seem so bad. And then Beckett. Everyone said three kids was rough. It didn’t take long for us to fall into a routine. Being a mom was easy. I was able to make decisions and I knew what to do for my kids.

So why do I question everything I do as a mom now that Beckett has this disease? Why do I doubt every decision? Why does every little thing scare me?

My confidence has shattered. My ego has cracked. I find myself scared to make any decision, fearing I’m messing up. I kick myself all the time that I didn’t pay close enough attention to his skin color before he was diagnosed. I’m angry at myself that I couldn’t see just how distended he was before he needed his belly drained. I don’t trust myself.

I am like that fourteen year old again, not doing a very good job but wanting so desperately to be enough. To be good enough. To be trusted to do the right thing.

I remember a couple months before Beckett was born visiting my best friend in the hospital where her newborn daughter was having a hard time and was in the NICU. I remember how scared I was for her and how strong she was. I remember saying to her, “I could never do this. I could never be the mom to a sick kid.” And then just a few short months later here I am.

There is no manual. There is no guidebook. There is nothing but myself, and my fervent desire to be a good mom, a great mom. I have to let go of my failures. I have to learn. I have to trust. Trust myself, that I am good enough. That I can do this. I can be a mom and a dang good one. Because I’m trying and because I care.

And there are others who trust me too. I can see it. Our doctors trust me. My husband trusts me. My girls trust me. And my beautiful baby boy trusts me. But most of all, my God trusts me. So I will trust in Him and let go. Let go of the fear and the pain and the doubt. I will piece back together my confidence. It’ll take time. It’ll be hard. And I’ll cry a lot. But I was born to do this.

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Biliary Atresia Awareness

IMG_7088December 1st is Biliary Atresia Awareness Day. A day I never thought I’d know.

We are blessed to be part of a very loving liver family. They have welcomed us in without question. They have cried with us and celebrated with us. Each has their own story to tell; each story is unique and equally amazing. Some are in the middle of their journey and others, like us, are at the beginning. I wish that I could tell everyone of all the wonderful people we’ve met and the incredible stories we’ve heard and the amazing miracles we’ve seen. But there just aren’t words.

So to honor our little warrior Beckett and all those who are currently living with Biliary Atresia or have a child with BA or have experienced loss because of BA, we ask that on Monday December 1st, you wear either yellow for liver disease or green for organ donation. Post a picture. Hashtag #loveyabeckett and #biliaryatresia and #organdonation. Help us spread the word. Help us raise awareness!

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My Little Beckett

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Oh how I love this little boy. My little Beckett. He amazes me everyday. He is perfection.

Because of everything going on, part of me feels like I’m being robbed of his infancy because I’m so concerned with what is happening medically. But at the same time I feel like I notice things more and little developments are more important to me. The day he found his hands will forever be etched in my memory. IMG_7146We were in the hospital for the third time and I remember worrying that he wouldn’t develop at the same pace as other babies his age. I knew he would spend a lot of time in the hospital in a bed and that fear overtook me. Then he started grabbing his hands and staring at them. It was my own little miracle. My vision of his future. He would be ok.

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This boy can melt my heart with one smile. He can melt anyone’s heart with his smile. We had so many nurses call him a flirt because he gives up smiles so easily.

He can speak to my soul when I look in his wise eyes. And he gets whatever he wants when he puts on his pouty face. IMG_7183

I soak it all in. I soak in his expressions. I soak in his eyebrows telling a story. I soak in his snuggles and little grins. Each time he reaches out and grabs my face, my mother heart bursts. IMG_7166

 

 

 

 

 

I love watching him sleep.
He is so peaceful and perfect. I often wonder what he is dreaming about. I wonder who is watching over him. Being home with him the past few weeks and not being in the hospital has really made me enjoy our boring mundane life. I can almost forget that there is anything wrong with him. I can almost pretend that he is perfectly healthy.

When I was pregnant with him, I just knew that there was something different about him. I knew he was a boy. I knew he was special. Then he was born and I felt instantly connected to him in a way that I can’t describe. It was very different than with my girls. At first I attributed it to the fact that he was a boy. That mother/son bond. But now I KNOW that isn’t the case. He is my gift. He is my treasure. He is my angel sent from heaven. His is a life that I will learn from daily. And we will not let his disease defeat us.

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A Glimpse of Heaven

It’s 2:30 am. I’m tired and Beckett is hungry. Shawn and I work together to get his bottle ready and change his diaper. Neither of us wants to feed him. We want sleep. It’s my turn.

I cradle this baby boy in my arms and feed him the bottle. My eyes are heavy. He finishes and I lift him to my shoulder to burp him.

And then it hits me. That smell. Oh that precious baby smell. I’m wide awake. I’m breathing him in. My heart. My soul. In the dim light, I see his perfect little mouth and feel his little chest rise and fall as he sleeps on me. I rub my cheek against his. It’s so silky and smooth.

And then I’m crying. Oh how blessed I am. God sent me this perfect little bundle of heaven. I see him for who he is. An angel in my life. I see who he will become. I close my eyes and kiss his cheek, again and again and again. I pull him in close, breathe him in. And then I lay him down in his bed to sleep.

Tonight I have glimpsed heaven. Tonight I have felt a part of the love that God has for me. And I am blessed. So very blessed.

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