Tag Archives: Kimber

by | January 1, 2015 · 10:17 am

“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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by | December 16, 2014 · 6:26 pm

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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by | November 7, 2014 · 3:57 pm

“I hate the roller coaster…”

IMG_6962 copyWe had started the formula feeding pretty soon after Beckett was drained Wednesday afternoon. The first time we tried feeding him, he only drank 1 oz. He did not like it. The next time he was starving and we made it pretty warm. He drank 4 oz. I was feeling optimistic. Then we decided to go to slow flow nipples so that in a month when we can go back to nursing, he will be more willing to nurse. After we made that change though, he would only drink an ounce at a time. I was not feeling optimistic.

Morning came. He still was only drinking an ounce every few hours and we were just waiting to figure out the game plan and hopefully get home later on. Dr. Book came in pretty much first thing in the morning and we started to discuss things. She felt Beckett’s tummy and wasn’t happy. It was already getting tight again. So she decided that we would proceed to get him drained again but this time we would leave the drain in and watch it. That meant we would be admitted for at least 3-4 days. Another disappointment. She also reemphasized to us that it was critical that he take the formula. If he didn’t then he would be put on a feeding tube. She did say though that if he will take the formula well, that I could have one nursing session a day.

After she finished speaking with us, it dawned on me. Addie’s birthday is on Sunday. We are celebrating on Saturday. And now we will be at the hospital. I broke down. Is this my life now? Will we be constantly missing important life events or rescheduling things? I needed to leave. I needed to breathe. I stepped out to make some phone calls to make arrangements for Addie and Raemee for the next couple days and to figure out what to do about Addie’s birthday. Thankfully, we are so blessed with wonderful friends and family who stepped in to help us take care of everything so we can balance our two lives. We can take care of Beckett and also make Addie’s birthday the day that she deserves.

While I was out, Dr. Book came back and spoke to Shawn. She was very frank with him and told him that she was fairly confident that Beckett would need a feeding tube based on everything so far. She wanted us to be prepared. When I found that out, I was so resolved to keep trying. I wanted to go back to the regular nipples to see if that made a difference. We had to have Beckett fast until he went for his procedure at 1:00pm to get drained again. So I just kept hoping that once we could start the feedings again, that he would do it. That morning was so long waiting for them to come get us. Finally at 1:30, they were ready for us. We headed back to the Jazz room and were told again what to expect. The only difference is this time we would leave the room with a drain out of his belly.

Once Becks was situated, we headed up to the room that we would call home for the next few days. We just hung out until the nurses came to get me to head down to get him. Another long wait even though in reality it was only 30 minutes or so. I walked with the nurses back down and saw my little warrior. He was pretty out of it. The doctors came to talk to me about everything. They said it went well. They drained another 400 mL. That’s 13.5 oz. I couldn’t believe it. They then showed me how to open and close the drain, signs to look for and then repeatedly told me to be super careful that we don’t pull the drain out. Each new conversation I have with doctors makes me more overwhelmed and scared and yet at the same time strangely empowered.

The nurses and I headed back upstairs and got him situated. We did his vitals and weighed him. When he was weighed initially Wednesday morning, he was 13 lbs 6 oz. When we weighed him Thursday after his second drain, he was 11 lbs 8 oz. Just by taking out that fluid he lost almost 2 lbs. But he looked amazing. After vitals were done, Dr. Marty came in. She is a resident with the GI team and she is awesome. She explains things so clearly and answers every question I have. She told me the game plan. We would watch the draining. They would empty his bag every couple hours and measure it. Because he is losing so much fluid, we have to replace it with protein rich fluid called Albumin. We also had to administer IVIG (immune Globulin) to make up for all that he was losing. We would also keep an eye on how much formula he would take. And we got the green light to start feeds again. I had them get us 2 oz. We warmed it up and put a regular nipple on. Beckett sucked it down so fast. We had them get another 2-3 oz. He drank that also. I was slightly optimistic that it was just a nipple issue and not the formula but he was starving so we would have to wait a few feeds to figure out whether or not it truly was that nipple issue.

We continued to feed him throughout the day and he still did great. He would consistently eat about 4 oz. I was pretty happy about how well he was accepting it. He didn’t seem to care about the taste. He cared a lot about the nipple and also the temperature. Later that evening, the GI doctors came around to talk to us. We met Dr. Jackson and Dr. Marty came in with him. He explained to us in great detail exactly how the liver works and just how biliary atresia affects everything. He helped us understand it in a way that was very visual and gave me a different and better view of what was going on inside our little man cub. He also had me feel for Beckett’s liver and spleen. It was fascinating having him tell me exactly what I was feeling for. Beck’s liver is HUGE!! It takes up most of his chest cavity.

We went to bed feeling fairly ok with the events of the day. We felt like we were moving in a good direction. We slept pretty well and woke up around 7 am Friday morning. Beckett did great all night, slept well and ate well. As we were getting ready for the day, the GI doctors cam around again. Dr. Jackson looked at the fluid and felt like it was looking pretty good so he wanted to consult with Dr. Book about how long to keep the drain in. I found out that Beckett had drained 400 more mL overnight. So much fluid!! But the amount coming out was at a much slower rate which was another reason he wanted to talk to Dr. Book.

He then asked me if I understood why we were giving him this special formula. I gave him what I thought was the reason and oops I was wrong. He then went on to clearly explain it to me. I thought the formula was a low fat, which was why he couldn’t have my breastmilk because it’s too fatty. But that’s not the case. It’s all about the type of fat. The type of fat in breastmilk goes through the lymphatic system. This is why he can’t nurse. Because his lymphatic system needs to heal. The kind of fat in this formula actually goes straight into the blood. It never goes through the lymphatic system. I felt so much more knowledgeable about exactly what was going on.

Later on in the morning, Dr. Book came in with her whole liver team. There was her nurse, Holly, the liver coordinator, Brook and the social worker, Barbie. It was awesome having our whole team with us to talk to us. Dr Book looked at Beckett and then started telling me how glad she was that we had the drain in so that he didn’t have to go in and be put under again to get that additional 400 mL out that had accumulated throughout the night. She also looked at the color and was really happy about it. It wasn’t milky anymore which means the fats weren’t in it! So we will need to get it retested at some point to be sure but that is looking good! She even suggested that we might take the drain out and treat the rest of the fluid build up with diuretics, which will help him just pee out the extra fluid. Then she asked about his feeding and was really happy with how he’s doing.

I started feeling like things were going to be ok! Finally a visit with doctors that wasn’t bearing bad news! I was feeling happy about things. I started thinking, “I can do this!” Beckett got hungry and so I pulled him out of bed by myself, wires and all. I fed him. He took in about 3.5 oz and then I burped him. He did great. He started looking sleepy so I put him down for a nap. Then he got this look in his eye and spit up a little. I helped him sit up and that’s when it happened. He started vomiting. Not just spit up. Full on vomiting. I was so scared and Shawn was working so I was alone. I ran out of the room to get a nurse but no one was there. I came back in to help clean him up and he threw up a couple more times. I ran back out and found a nurse to come to help me. His puke was curdled and gross.

So here I sit. Now I feel like I’m back to square one. Is he not tolerating the formula as well as we thought? Or was it a fluke? Will this keep us in the hospital longer? Will he need a feeding tube? I hate the roller coaster. I’m hoping as the afternoon passes that we will get some answers. That I can get some reassurance. It may have been a fleeting thought, but the “I got this” feeling was wonderful. I want it back.

 

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by | November 5, 2014 · 11:59 pm

Beckett’s “Simple” Follow Up

(null)The past two days have been hard. Really hard. I’ve been looking forward to and completely dreading Beckett’s follow up appointments. I wanted to know how he was really doing but at the same time I was terrified to know exactly what our future looked like. We had two appointments set up. 10:30 am with the surgeon, Dr. Scaife, and 1:40 pm with our liver doctor, Dr. Book.

Today arrived. I prayed really hard for peace. I just wanted to feel peace no matter what news we received. When I woke up, I was feeling pretty good. Apprehensive but good. We packed an overnight bag just in case, got the girls settled and packed the baby in the car. We drove up to Primary Children’s. As we started driving, it was silent. Too silent. So we turned on Taylor Swift’s new CD and jammed. It helped take my mind off of the day. But the closer we got to the hospital the more ill I felt. I was so nervous.

We headed up to general surgery and checked in. They then took us to get some labs done. Sweet Beckett was quite the charmer as the nurse prepped his foot to get pricked. He bled good for her and then we headed back to general surgery to meet with Dr. Scaife. As we waited in the room for him, we noticed a mural on the wall. There was a saying on it that if we looked closely we could see all the letter A to Z. We spent the next 15 minutes trying to find the letters. They may have designed that for kids but 1, it was hard and 2, it was a great distraction for us as parents.

Dr. Scaife walked in. “How are you guys?” We smiled. “You tell us.” We laid Beckett on the table and lifted up his shirt so Dr. Scaife could look at his belly. He told us that his belly looked distended and he wanted to send us to get an ultrasound to figure out what was going on since it could be several different things. We asked about his incision. He told us that it looked fabulous. No issues there. Perfect! The lab work still hadn’t come in so he told us we would have to wait until we saw Dr. Book. We headed out to the main room to see if we could get in for an ultrasound. I don’t know how we lucked out but we were sent straight down to radiology for the ultrasound!

When we got there, our tech, Brad, called us back. Now Brad was the same tech that did his initial ultrasound exactly 4 weeks ago today. It felt nice to have a familiar face. Brad is awesome. He asked us questions, did the ultrasound quickly and laughed at all of Shawn’s jokes. Shawn made some comment in regards to how much money the surgeon makes and it made Brad laugh so hard that it took him a good couple minutes to compose himself to continue. That’s one thing I’m so grateful for. Shawn knows how to keep things lighthearted even in the midst of massive stress. Laughing our way through all this crap makes it a little easier. As Brad was doing the ultrasound, he told us all the black on the screen was fluid. I’m no tech but even I could see that there was way way too much in there. I immediately started kicking myself. We’ve been measuring him everyday and the measurements didn’t change until the past day or two. So what was I doing wrong that he had that much fluid and we couldn’t see. I’m not cut out for this.

After the ultrasound was over, the head radiologist came in and talked to us about the results. He said that in his opinion there was a “large amount of fluid” and he thought that Dr. Book would most likely want it drained. In order to drain it, Beckett would need to fast for 6 hours. Well here it was noon and he hadn’t eaten since 9 am. So I figured our appointment with Dr. Book was in two hours. It wouldn’t hurt to hold him off in case she did want it drained. Then we would already be ahead of the game. We left and went to get some lunch before our next appointment.

After we ate, we just sat for a minute. It was hard to know what to say. We still felt clueless. All we knew was that his belly had tons of fluid, something could be massively wrong and we had no idea how well the surgery was working because the labs weren’t in. We decided to head up to Dr. Books office early just in case they could get us in. While we waited we looked over the valley and tried to sort through the limited information we had. Soon enough it was our turn.

We headed back to the room and before anything was done, they went and grabbed Dr. Book. The radiologist had seen her on her way over and told her about Beckett. At this point, our appointment turned sideways. Instead of talking with her about things, all the sudden she was there telling us that we were headed back down to radiology to get his belly drained, they were going to place an IV and we would need tons more blood work done. Then we would be sent to the RTU (Rapid Treatment Unit) to recover and wait for results. Most likely we would stay overnight.

Before we headed down we asked our liver nurse, Holly, a bunch of questions. She was great as we tried to process what was happening. I asked her about his bilirubin levels. Before his surgery his levels were at 8.4, now three weeks later they were at 7.4. I’m not a doctor but that difference doesn’t seem that great. Dr. Book came back in and got us moving since radiology was waiting for us.

Back down to radiology. We went into a little procedure room and that’s where we met the doctor who would be performing the draining procedure. It’s also where Beckett got his IV. The nurses came in to do the IV and went straight for his head. They didn’t even try in his hands or feet. He screamed bloody murder and I sobbed in the hallway.

IMG_6945[6]After the stupid IV, they took us into this big room, the Jazz room. There are pictures of all the Jazz players, signed sports memorabilia and the ceiling tiles have all the signatures of all the players, past and present. It was pretty awesome. They got Beckett situated and then took us to a waiting room. Through all this I hadn’t been able to feed Beckett. But I had no idea that this was going to happen so even though we were prepared with overnight bags, I did not bring my pump. No big deal I thought, I’ll just use the hospital stuff. Nope. In looking into it, because what we were doing was an outpatient procedure and we would not be admitted even though we were staying overnight, it would cost $100 to use the hospitals stuff. Yeah, not happening. So I dealt with the pain until I could feed Beckett again.

The draining itself was actually super fast. Like 20 minutes and they were back to get us. They said that they drained 460 mL from his belly which equates to about 15.5 oz. and there was more in his tummy. He was awake and they said he did awesome. He never cried, just hung out. He was looking around and was calm until he saw me. Then he started screaming bloody murder. The Dr. said I could feed him since he was doing so great so we walked to the RTU and got into our room and I started to nurse him. Oh how quickly he calmed down. We just let him rest and hang out and had to put a sock over his hand so that he wouldn’t pull the IV out from his head. Then we waited.

After a couple hours, Dr. Book came in to talk to us about everything. She said that the fluid they took out of Beckett was milky. They tested it and determined that during his surgery his lymphatic system was damaged. There is fat from his food leaking through the lymphatic vessels. Then she proceeded to tell me that in order to fix the problem, I can’t nurse him anymore because breast milk is super fatty. He needs to be on a special formula. And if he won’t take the formula then they will put him on a feeding tube until his lymphatic system is healed. I am devastated. She said that its temporary, maybe 3-4 weeks but that’s a hard pill to swallow. That your milk is actually causing the damage to your baby. That the comfort and bonding that your baby enjoys can’t happen anymore. Pumping and saving my milk to hopefully nurse him in a month is the only solution. That was hard to hear.

She then felt his belly and said his spleen was enlarged. This could be from the pressure of his liver and the fluid. Not a great sign. I asked her where they want the bilirubin levels to be and she said under a 4. We’re at a 7.4. So that’s not super optimistic. She said she was going to keep an extra close eye on him. She then told us we would be staying overnight to get the rest of the fluid drained and to make sure he was taking the formula. And that we would be back next week for follow ups. She encouraged us, told us we would get things under control and that he would be ok, whatever course that may be.

IMG_6950I love Dr. Book. She never skirts around the issues but she is a glass half full person. She already cares about us and will do everything in her power to help Becks. I hate this situation. I’m not handling it well. But she gives me courage. I know Becks is being taken care of. And for that I am and forever will be eternally grateful.

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by | October 26, 2014 · 8:30 am

Little Warrior

IMG_6708When we first started figuring out what was going on with Beckett, I posted a picture to Instagram about what we had experienced. I mentioned that Beckett was going about everything with such a happy demeanor and I called him my little warrior. I don’t know why that word popped in my head specifically instead of a more common word like fighter. But it came so clearly. He was a warrior. I’ve pondered a lot lately trying to figure out why that word was so important. As I was thinking about it last Wednesday, a story in The Book of Mormon: Another Testament of Jesus Christ about the 2,000 stripling warriors came to mind. I decided to make that the object of my scripture study the next day.

It just so happened that Thursday, Shawn took Addie to preschool and Beckett took a long nap. We had a very quiet morning and I was able to spend some good time with my scriptures reading the story of the 2,000 stripling warriors and thinking about it. This story is about a group of people who after repenting of their wickedness, made a covenant with God that they would never take up arms again. Well war came upon them. Their brethren were fighting for them and they felt bad because they weren’t helping. They were about to take up arms and fight when their sons (who had NOT made the covenant) said that they would go to war for their fathers. As they fought, they were injured but NOT ONE of the 2,000 sons was killed in battle. What I learned from reading this story was amazing. It has changed the way I view our situation.

I started in Alma Chapter 53 and got to verses 20-21.

20 And they were all young men, and they were exceedingly valiant for courage, and also for strength and activity; but behold, this was not all—they were men who were true at all times in whatsoever thing they were entrusted…

21 Yea, they were men of truth and soberness, for they had been taught to keep the commandments of God and to walk uprightly before him.

Then I moved to Alma Chapter 56:46

46 For as I had ever called them my sons (for they were all of them very young) even so they said unto me: Father, behold our God is with us, and he will not suffer that we should fall; then let us go forth…

Here Helaman (their commander) is describing these young men. I felt so strongly in my core that this is Beckett. I believe that my little man is so courageous and is doing much better with this situation than either Shawn or I. It doesn’t matter that he is a two month old baby. I remember when he first smiled at us after his surgery. There was a look in his eyes. He had this. He was ok. It was like he was telling us that he was fine. His courage strengthens mine. And then I read that last line again, “Behold our God is with us, and he will not suffer that we should fall; then let us go forth.” How true this is. Our God is behind us. He will watch over us and protect us. Those 2,000 warriors knew that and they went forward in faith. Beckett is the same. He is so happy and trusting, even with the scary things that have happened to him.

I then moved on to Alma 56:47-48.

47 Now they never had fought, yet they did not fear death… yea, they had been taught by their mothers, that if they did not doubt, God would deliver them.

 48 And they rehearsed unto me the words of their mothers, saying: We do not doubt our mothers knew it.

Now I have read this story many times in my life. I have always thought of how amazing those mothers were. But reading it this time with Beckett in mind, it struck me so differently. I am now the mom of a warrior. This is me. This is my responsibility. And in order for me to teach my son, I need to believe this. And live it. Faith. It all comes down to faith. Their mothers instilled such faith in them that they were willing to go into battle. I want my son to be strong. I want him to be able to handle things with courage and with happiness no matter how bad things get. And in order for that to happen, I need to be the example. By this point I was in tears. I felt such a greater love for those mothers. I knew that I wanted to be just like them.

At this point in the story, these young men went to war. Alma 56:56 reads:

56 But behold, to my great joy, there had not one soul of them fallen to the earth; yea, and they had fought as if with the strength of God; yea, never were men known to have fought with such miraculous strength; and with such mighty power…

And then moved to Alma Chapter 57:21, 26-27.

21 Yea, and they did obey and observe to perform every word of command with exactness; yea, and even according to their faith it was done unto them; and I did remember the words which they said unto me that their mothers had taught them.

26 And now, their preservation was astonishing to our whole army, yea, that they should be spared while there was a thousand of our brethren who were slain. And we do justly ascribe it to the miraculous power of God, because of their exceeding faith in that which they had been taught to believe—that there was a just God, and whosoever did not doubt, that they should be preserved by his marvelous power.

27 Now this was the faith of these of whom I have spoken; they are young, and their minds are firm, and they do put their trust in God continually.

I started to think of Beckett’s future. Oh how I wish this for him. He has already proved to be so strong but I pray that he can fight with the strength of God as he undergoes many challenges in his life. I know that he can have a wonderful life despite the health issues. I love that last verse because I can see my son in it. He is young. His mind is firm. And I can see him putting his trust in God for the rest of his life. I know God is there for him. Christ knows exactly what Beckett has been through and what he will endure. He knows it perfectly and is the perfect person to rely on through all this.

That’s not to say that we aren’t going to have hard days. We will. Probably a lot of them. We are going to struggle at times. But if we will trust, if we have faith in our Savior, we will conquer whatever comes our way.

I love my son. I love him so deeply that I will be strong for him. I will teach him what I know. I will teach him faith. We will make it through this together.

Written by: Kimber

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by | October 18, 2014 · 8:00 pm

Kasai Recovery – Day 5 Finally Home

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We woke up around 6 am again. This time though it was from the worst sleep ever. Because I could nurse, Beckett woke up every couple hours. He wasn’t terribly satisfied with only nursing for 15 minutes and then it would take us a good 45 minutes after nursing to get him back to sleep. It was miserable. Once we were up and going, I started to feel a little better. We changed his diaper and noticed that it was still green (yay!) but there was also some white in it (bad!). White means the liver isn’t working. I decided to talk with the surgical team when they did their rounds.

Shawn went to go shower and while he was gone Dr. Scaife came to see how we were doing. He had a couple of colleagues with him. He asked if we wanted to go home and I said we did, if Beckett was ready. He asked how he was doing. I told him that I thought he was doing well. He was happy, managing pain well, and peeing and pooping great. But I then told him about my concern with the green poop that had some white in it. He said, “His poop is green?” I nodded. He then looked to his colleagues and got this look on his face of slight excitement. “Well that’s encouraging!” Then he fist bumped me. Yep. A man of few words who makes more money in a week than I do in a year fist bumped me. It was pretty awesome.

We got everything ready, got our discharge papers and packed our stuff to get ready to leave. We spoke with our nurse before we left. We had Tammy again and it was so great. She knew us and knew Becks. She also was wonderful because she would talk to us. She would be frank and didn’t sugar coat anything but the way she talked to us wasn’t depressing. She told us to always have an overnight bag packed when we have appointments because a lot of times, they do the labs and then the numbers don’t look great so they admit them to the hospital. She also told us exactly what to look for and keep track of and when to call the doctor. I felt so much better after talking to her. I felt like I could possibly handle things once we got home. She told me to trust myself. This was hard for me because I feel like I completely missed the fact that Beckett was so yellow. Or at least I ignored it for awhile. I didn’t want to think anything was wrong. And now I’m paranoid that I’ll miss something else. She was very encouraging. She got me back into a good place and we grabbed our belongings and packed him up and left for home.

And now we wait. We wait for a few weeks to find out if the surgery even worked. We wait to see if his poops stay good colors. We wait for the day that his labs come back horrible and we move to a transplant. We wait. Waiting. I’ve never been good at waiting. But for now I have no choice. So I will enjoy the wait. I will enjoy the good moments while waiting. And I’ll pray that we will be waiting a really long time.

Written by: Kimber

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by | October 17, 2014 · 8:00 pm

Kasai Recovery – Day 4

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The next morning, after the surgery team talked with our nurse, they gave the go ahead to just start breastfeeding. I was shocked. I thought that we would slowly move up the ounces in a bottle before they let me nurse him. But I was so happy! So we tried. After 3 days of not nursing, it took him a minute to get the hang of it but once he did, you could tell he was so happy. He nursed for about 10-15 minutes and then was done. I made sure he burped and then we just watched him for the next couple hours. He was happier. I was so glad he had a full belly. Since he did so great, they were talking about sending us home.

 The next feed came. I fed him for 10-15 minutes and when we were done, he was still acting so hungry. So I let him nurse for another 5ish minutes. He finished, I burped him and we laid him in bed and were talking to our nurse about our fears of going home when all the sudden, he started puking! He vomited at least 2-3 oz. It was insane. And terrifying. I literally was shaking. Well after that, our nurse informed us that we would no longer be going home. I was sad and at the same time relieved that we had one more day with the doctors and nurses checking on him.

 So we bathed this sweet boy, got him cleaned up and decided to only feed him for 10-15 minutes and make sure he was thoroughly burped. We did that for the rest of the day and into the night and he did awesome. Did some normal spits but no more puking! I figured I would just up his feeds a minute at a time over the next couple days.

Throughout the day, he continued to poop great. Sometimes we were a bit nervous about the color, yes, I’m obsessive, but most of the time we were just thrilled. And this day was awesome because he was happy and talkative. Oh how I love to hear his coos. He talks way more than the girls did and I just eat it up!!

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by | October 16, 2014 · 10:00 pm

Life Lessons from Primary Children’s Hospital

This past week as we have spent numerous days in the hospital, I have learned several little life lessons. To make sure I don’t forget them I really wanted to write down the things that I’ve learned.

1- Everyone has trials and pain

I know this one seems so obvious but as I have watched so many people here in pain, it has become so clear to me that everyone goes through so much. And most of it is not visible to the naked eye. It reminds me of the hymn Lord I Would Follow Thee which says “In the quiet heart is hidden, sorrow that the eye can’t see.” Oh how true this is. And how deep that pain goes.

As we sit in our hospital room, we have seen families get admitted. The looks of anxiety, fear and sorrow on their faces can be overwhelming at times. My heart just aches because I can now relate in a way that I never have before. I know just how deep that pain goes. It gives me greater empathy for what others may be experiencing.

2- The world is more kind than we realize

I felt so very alone when we came here. Then we have met countless doctors, nurses, social workers, staff and families of sick kids that have reached out to us and pulled us in. I have had several moms of kids with Biliary Atresia reach out to me and show me that I am not alone. They don’t even know me. But the love that they have showed has made a huge impact in my life.

I’ve also noticed small acts of kindness that go such a long way, from the waitress who gave us a free appetizer just because, to the people who have graciously donated to help us out financially, some who we haven’t seen or spoken to in years, to the nurses who stroke our baby’s head and talk to him instead of just taking care of his needs, to the smiles and nods of encouragement as you pass a fellow parent in the halls, to the surgeon who stops what he’s doing to put his hand on your shoulder and make sure you’re ok. It’s amazing how kind and caring the world is if we really pay attention to it.

3- We are a family

As I started to realize just how many others are going through similar things that we are, I started to feel like we were part of a new family. It dawned on me that our “families” can come in so many varieties and sizes. We all have our immediate family and our extended family but we are also part of bigger family units like our church family or school families. And it was made so clear to me that we have joined a very special family when I met with some of the liver doctors and their social worker and the first thing the social worker said to us was, “Welcome to the family!” As I’ve spoken with parents of liver kids, I felt so included. I felt like I had met my sisters.

4- It’s the small things that matter

Another thing that has been reinforced in my mind that I knew previously was that it’s the small things in our lives that really matter. It’s the smiles, the kisses and hugs, the kind words that matter. The big stressful stuff just doesn’t matter in the long run. It’s our relationships with others. It’s the love that we feel and show. It’s service. That’s what matters. That’s what helps us all get to where we need to be.

5- Celebrate the victories

This was a powerful testimony to me this week. Celebrate the victories and forget the failures. As we waited for simple things like bowel sounds in Beckett, I thought about how important it is for us to relish those victories, no matter how small they are. A victory is a victory, no matter how small. When Beckett pooped for the first time after his surgery, we were so thrilled. Yep, over poop. Because to us it meant the world. It meant that after surgery on his intestines and moving them around, they were waking up and working. So poop was an important victory for us. So we celebrated by making a “POOO” ghost to put on the window of our room.

We also had a fantastic victory this morning with Becks smiling for the first time since Monday. Oh how my heart melted. What a great victory. This whole process has helped me realize that I need to find the victories in my day to day life and celebrate them whether they are little, like making a warm breakfast for my kids or big, like Beckett surviving major surgery. I am determined to do a better job with finding those victories and forgetting all the things that I didn’t get done, the “failures”. Because in the end, who cares. Who cares that they laundry didn’t get done or the dishes are dirty. I choose to focus on those things that I do accomplish.

6- The Lord is in the details

Oh how I know this is so true. I know that my Father in Heaven is aware of me and my family and our struggles. He has shown us so many tender mercies this week and I will forever be so grateful for him helping to make our trials a little bit easier.

When we were here last week, a friend in our ward sent me some contact info for a friend of hers whose daughter had liver issues. This woman added me to a couple facebook groups and through that we actually found out that across the hall from us was another family whose daughter has Biliary Atresia and is here waiting for her to get a liver transplant. I spoke with her online briefly and then the next morning as I went out to get a snack off the cart, I saw her. I introduced myself and she gave me a huge hug. We have since spoken several times and she has been a source of great comfort to me. I’m not alone. There are others who know what we feel like, who know the pain of finding out about this awful disease and feeling like you were punched in the face.

At the end of the week, we found a news article about a family in Pleasant Grove whose daughter, Mona is almost four. She had the Kasai when she was a baby and now was in need of a transplant. Her mom was a match and because she didn’t need a full liver, her mom was able to donate to her. So amazing. It gave us hope. Well, as we were waiting for Beckett to get out of surgery, we happened to overhear a phone conversation and quickly figured out that this woman was the grandma of Mona. We were stunned. Their live organ liver transplant was happening at the exact moment that Beckett was having the Kasai. When she got off the phone, we apologized to her for eavesdropping and then told her we knew who she was and told her about Beckett. She was amazing! Such faith. Such strength. Oh how that woman will never understand how she helped me through the scariest moment of my life so far. Later that day she sent Mona’s dad out and he talked to us for awhile about everything. Tender mercy for sure.

I know that the Lord has been with us. He has placed people in our lives at the right time to help us through. To help us process. To help us heal. Without Him I don’t know how we would have survived. Oh how I need him. And my eyes have been opened to see just how involved he is.

Written by: Kimber

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by | October 16, 2014 · 8:00 pm

Kasai Recovery – Day 3

Beckett Oliver

Because Beckett wasn’t eating, we were actually able to sleep really well at night. He was so sleepy and would only wake up when the nurses came in to check his vitals. Then they would put him back to sleep. So even though Shawn and I were crammed on this tiny little couch we slept pretty good. After we woke up (around 6 am again!), I pumped and we got ready for the day. We met our nurse Tammy and she was amazing!! So fun and willing to help us with whatever we needed. We decided to give Beckett a bath because he was starting to smell like hospital. It was a little frustrating because he couldn’t have much water due to his incision and he couldn’t relax because we had to hold a hand and a foot out of the water due to his IVs. But even with all that, oh how he smelled so good after that bath.

He was finally looking and acting more like himself and the BEST part was that he gave us some smiles!! I had been saying all week that I needed to see him smiling because that’s who he is. He is our smiley, lovey boy. I can’t even express the emotion I felt when he kept smiling and cooing at us! We knew he was feeling better, incision, wires, IV’s and all.

He also continued to poop throughout the day. It was such a relief to know that his organs were starting to work again. I’ve never been so obsessed with poop in my life. Every diaper change we would inspect the diaper before the nurses would weigh them. We just kept tabs on color, and consistency (TMI, I know). And it looks like that is something that I’ll be doing for the next few years.

IMG_6680Because he was pooping, we got the green light to start feeding him. He was allowed 1/2 oz of pedialyte every 3 hours. He hadn’t eaten in 3 whole days but I just had a feeling that he would not be happy that he could only have 1/2 oz. It was important though, to know that he could keep it down and that it could make it through his entire system. So we did that for a few feeds and then we upped it to 1 oz because he was tolerating it well. Then we had shift change. Once it was time for the next feed, I talked with my nurse and she said, “Ok I’ll go get the 1 oz of breastmilk ready.” I said, “Are we done with the pedialyte?” She looked back at the orders and told us that it never said to do pedialyte. The orders were always for 1 oz of breastmilk. Turns out when our day nurse, Tammy, had received the ORAL orders she was told to start with 1/2 of pedialyte. But the WRITTEN orders said 1 oz of breastmilk. Poor Tammy felt so bad about the mix up but it was no big deal. We were just excited that he could have breastmilk. I was praying he would tolerate it ok. We tried that night and he did great.

Written by: Kimber

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by | October 15, 2014 · 8:00 pm

Kasai Recovery – Day 2

IMG_3169We were able to get a room at the Ronald McDonald Room here at Primary Children’s. That was so wonderful. They have queen size temperpedic beds. We slept so great but again we were up around 6 and just couldn’t go back to sleep. We showered, got ready and headed back to see the little man. When we saw him, he looked so much less swollen already! We were excited. He proceeded to pee so much throughout the day. And the difference in how swollen he looked was very obvious. We kept listening for bowel sounds and the day started with none. But by afternoon, our nurse said she could hear his bowels starting to work! We were so excited. Then came the insane amount of prayers for poop.

As we were sitting in our room, trying to stay sane with the craziness and boredom, we saw a familiar face. Shawn’s sister came by to visit us. She was so great. She helped keep our minds off of everything. While she was here, a social worker stopped by to talk to us. We weren’t opening up much but Shawn’s sister helped us start to be more honest with how we were really holding up. Pretty soon Shawn and I were both in tears. It’s really hard to be in the hospital day after day. You try to be strong so you can handle everything that the nurses and doctors are sending your way but all you want to do is cry and have someone else handle it. I just don’t feel like an adult. I kept thinking someone else would take care of it for me. Then you start building walls and becoming numb to your emotions to protect yourself. The social worker helped us break some of those walls down although they are building back up again.

I think this was one of the hardest days emotionally. While Beckett was doing so great, I was realizing that I was not. I was having a hard time processing everything. And trying to gather as much information as possible while not freaking out about everything. Knowing what our next 50 steps are but only worrying about the next step. It’s such a hard balance and will be something I have to work on for the rest of my life.

While we were talking to the social worker, Beckett started passing gas. He was acting a little uncomfortable and the gas just kept coming. Pretty soon we heard him poop! Oh man, we were elated. We were so excited about the poop that we came up with the idea to make a POO ghost. Around this time, the Child Life Specialist dropped by to check on us and so she was able to grab us some supplies to make our idea a reality. After we had made the poo ghost, we came up with Poo Points. We wrote down the names of the nurses, techs etc that helped us out. They could earn poo points for things like taking care of Becks, talking to us, answering questions or just doing something cool for us. We had so many staff at Primary’s who thought this was hilarious. Some even took pictures. And I will say that it created quite the contest between the nurses. It was a great way to laugh and take our mind off of everything that was going on.

Written by: Kimber

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