Tag Archives: biliary atresia

Dru

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It’s been a few days since Dru left. It just doesn’t seem real. I replay the night and the moment so vividly. Kim was laying on our bed looking at Instagram and I was trying to get Beckett asleep. I could hear the shock, fear, and pain as the words came out of Kimmie’s mouth.

“Shawn, Dru died!”

Tears. Shock. Lots and lots of tears. Followed by fear and pain.

Since that moment I have mostly been numb. There is just too much to really feel and comprehend all of my emotions.

I have wanted so badly in her memory to post the perfect picture with the most perfect caption. Many times I have opened up Facebook to write Dru’s parents a note to bring them comfort and to tell them how much we love them. How much we admire them. How knowing them has eternally impacted our lives. Or even to simply say, we are praying for you and hope that you find some sort of peace through this hellish and nightmare of a situation. But every time I have tried coming up with the right thing to say I have actually ended up closing my app/browser with no words on the screen.

What do you say? What could I say that would make any difference? How could I possibly help at all? I think everyone has probably felt the same way at some point with some sort of experience.

imageDru was the first BA baby that we met. I remember, like it was yesterday the morning that we met Andy, Dru’s mom at the hospitality cart down the hall from our rooms at Primary Children’s Hospital. She gave Kim a hug and was so kind to us both. Dru and Andy have been the light and strength to our family. Bill, Dru’s father became my role model. He is my example of how to be a supportive husband, and how to manage your hospital child with your children at home, while managing work all at the same time. 

I only got to see Dru a few times during our hospital stays. However, it didn’t take more than 5 minutes till I fell in love with her fierce and sassy personality. She was referred to by everyone who knew her as Miss Magic. I’ve never had a chance to ask who came up with her nickname but it defines Dru in every sense. The lil lady was magical. She put a smile on everyone’s face. She changed communities of people. She impacted my family and changed me personally. Have I mentioned that she was only a year old?

Dru was one of two liver kids that we were aware of who needed a liver transplant and was a permanent resident at Primary’s while waiting for her gift of life. One received her liver on Sunday. Dru passed away on Monday and today will be laid to rest. I will never forget Dru. When I tie my running shoes I will think of #movingformissmagic. She certainly moved me. I can keep moving for her. When Kim wears her necklace that says “I can do hard things” I will think of Dru and her family and how they have gone through the hardest trial. When I pray at night, I will remember Dru and ask God to send her to watch over Beckett as he fights his liver battle. I can’t think of a more valiant warrior than Dru to protect my son.

Love you Dru. Thank you for being a light in my life during the darkest days I have lived. You made me a believer. I believe in magic.

Click here to read more about Dru and her amazing family. Please pray for them and honor her by becoming an organ donor.

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Understanding the Universe

“In a very short period of time, our understanding of the universe changed forever… The immensity of the universe didn’t suddenly change, but our ability to see and understand this truth changed dramatically. And with that greater light, mankind was introduced to glorious vistas we had never before imagined.” – Dieter F. Uchtdorf

I have thought often the past few weeks on these words. I can relate to them. They tell my story. I see the value and meaning of life differently than I had ever seen or pictured it before. The veil over my face has been lifted to see a greater universe than I knew previously. I strangely feel the dark and sunny places of other individuals emotions and can relate to them. As much as my own experiences will allow me to of course.

Before Beckett’s diagnosis of Biliary Atresia, we had what I considered a great life. Kim and I found the chaotic rhythm for our family of 3 beautiful well mannered kids. Our marriage was thriving as we established weekly dates and activities together. I was starting to find the groove of my career after being promoted to a new position of visibility. Talk of insurance and financial planning was for “other” people. Adalyn and Raemee, our two oldest girls, have never had ear infections. No medical threats would ever happen to us. Life was as close to perfect as it could get.

IMG_3184The text message I received from Kim on that sunny Tuesday was the start of my eye opening experience that is now the life I live. Since that Tuesday, 35 days have past. In those thirty-five days, 17 of them to this day have been spent in the hospital. Puddles of tears have been shed, hard conversations have taken place, and ultimately God has provided me with a humbling blow to my core that has made me grow up in areas I have never wanted to. Nor did I know existed within me or my capacity. I think we have all experienced this to different degrees.

In the end I am grateful for the deeper capacity of gratitude, empathy, perspective, and emotion that I feel for others. It has enabled me to love. To see the universe for what it’s supposed to be. I have a changed soul and I can’t describe it. You can’t put words next to something like what I feel inside now that is so powerful. I can say that it runs deep, it’s consuming, and it requires me to take action.

I’m not grateful for what is happening to Beckett. I would never wish this on my son. Though he be a warrior, it’s not a fight I want him in so that I can learn a soul transforming lesson. However, I am grateful for the level of communication it has provided me. As I looked into Beckett’s eyes last night, I saw him. I saw the fear that exists inside him. That same fear I see on the faces of parents of sick kids in the hospital. The same look I see when I look in the mirror. I felt how tired he was from a week of being poked (5 different IVs and multiple blood draws), sedated (twice), and drained (the excessive fluid from his abdomen). I understood for a brief moment the exhaustion of being administered 6 different medications one after the other, or the toll that deep vomiting multiple times a day can take on a 3 month old body. When he wrapped his little fingers around my thumb, he was asking me to not leave him alone and I heard through his expression him say “I am trying dad!” For a second, time stopped and I was learning from my man cub. He has a mission to complete. A battle to fight. My son has a purpose and he knows it. We all do. Just like I love my son, our Father in Heaven loves us all. I understand now why “in the sixth hour there was darkness over all the land” (Matthew 27:45) and in the ninth hour “the earth did quake, and the rocks rent.” (Matthew 27:51) It wasn’t easy for the Son, and clearly it wasn’t easy for the Father, but they saw and were aware of the glorious vistas of the universe.

Beckett is a warrior. Even though he has already been through so much, his battlefield is going to get harder, scarier, and so much worse. In all of this there is a lot that will be asked of him. He will pay a steep price to gain the life he has waiting for him post liver transplant. I am so proud of him and through him I am finally seeing and understanding what life is really about. #loveyaBeckett

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“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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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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Opportunities to Do Good

Shortly after discovering Beckett’s diagnosis of BA (Biliary Atresia) Kim was introduced to Michelle Rowan by a neighbor of ours. Our neighbor had a feeling that Michelle could help us since Annie, Michelle’s daughter, received a liver transplant a few years back. Michelle welcomed us with open arms and provided us with introductions to our new liver family. These amazing liver people are so accepting and understanding of the situation we found ourselves in. We were the lone deer in the headlights and these people slowed down from their busy emotional lives and helped us find our way to a safe place.

Without fail, every time I watch the video of Annie and the experience of the Rowan family my emotions get stirred. First, I can’t imagine being in their shoes knowing that my child only has 48 hours to live without a transplant. Second, our neighborhood and friends have rallied around our family in very similar ways that Annie’s did at the time of her diagnosis and transplant. We have been drowning in the kind acts of others. The toys have been played with, the meals and goodies have been tasty, the conversations/letters and messages have brought tears to our eyes, and the many prayers in our behalf have been felt. As strange as it sounds, my faith in humanity has been restored. There are so many good people living among us. I feel the love of my brothers and sisters and am beginning to understand what it means to be a child of God and a part of a heavenly family living on the earth.

I now have a weight on my shoulders. A weight that I don’t know how to repay. There have been so many people that we know and don’t know who have helped our family. How could I ever repay all these people? How could I ever truly express all of the gratitude that I have for them? The worst part is, I know I have more to ask of these individuals. It’s painful. I’m not accustomed to asking for help. It’s humbling to realize that I can’t do this by myself.

What I have learned through all this is that because of others I will look for opportunities to do good, to show people I care, and to jump in on big or small acts of kindness. There is a fire burning inside to pay it forward. It’s because of others that I now know more than ever that one prayer, one thoughtful message, one hug, or one single smile can make all the difference. I hope that one day I can be the difference that others have been for Kim and I.

Please share with us an act of service that others have provided for you that you are grateful for. We would love to hear your stories.

Written by: Shawn

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Beckett’s Kasai Surgery

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We got ready to go and put Becks in his car seat. We then all knelt down for a family prayer. Partway through the prayer, Addie (our oldest daughter who is currently 4 years old) crawled over and pulled Beckett’s seat into the circle so that he was involved. Pretty soon we were all crying and I opened my eyes and Addie was looking around at us. Then her little eyes welled up with tears and she was trying not to cry. I got her attention and pulled her into my arms. She started sobbing. Once the prayer was over, we asked her why she was sad. “I’m sad because everyone else is sad. Beckett is sick. He has a broken heart.” We told her that it was his liver and that the doctors were going to make him all better. They were going to fix him. She gave him a hug and a kiss and said tearfully, “Bye Beckett. You’re going to be ok.” Oh that little girl has such faith and such a big heart.

We then headed up to Primary Children’s. We went to the surgical registration room and then waited for them to call our names. It was so hard looking around that room at the little kids knowing that they were all there for surgical procedures, whether small or big. It was a very tense room to be in. They called our names and we went in to a little room where they weighed him and did all his vitals. Then we had to clean him with these special disinfecting wipes and put him in a little surgical gown. In that room he looked SO yellow!

After he was dressed then came one of the longest waits of my life. We had to wait for the surgeon, the nurses and the anesthesiologist to come speak with us. We were probably in that room waiting for over an hour. Beckett had been fasting since 8 am so he was so hungry and by this point it was close to 1 pm. First came the surgeon, Dr. Scaife. He came in, briefly spoke to us, asked if we had any questions and then left the room to go get ready. We started feeling anxious about it all. A few minutes later, the surgical nurses came in. They told us about how they would give us updates every so often. Then they left to go prepare the operating room. After a couple minutes the anesthesiologist, Dr. Cole came into the room. She sat down and thoroughly explained how they would sedate him and what she would be watching for while the surgery was going on. She answered a few questions from us. She was wonderful. She made me feel really comfortable knowing that Beckett was in her hands. She then left the room to go see if they were ready for us. She told us it would be between 5 and 20 minutes before they took him back. But she was back immediately saying they were ready. I grabbed Beckett and we walked down the hall. It was the hardest moment for me. We reached this line on the ground and that was as far as we could go. I then had to hand him over to Dr. Cole. I kissed him and handed him to her. I immediately burst into tears. She looked at me and very sincerely said, “I have two babies at home. I know how precious he is to you. I WILL take care of him.” And then she walked away. Oh how my heart hurt so badly. I knew this wasn’t a super scary surgery in terms of dying but you just never know. The thought did cross my mind that I would never see him alive again.

We then checked in with the surgical waiting room staff. They really want you to be in that waiting room so that if there are updates, you are close. We told them we were going to grab a bite to eat and then would be back up. We met up with Shawn’s brother, grabbed some food and ate it and then headed back up to the waiting room. I realized that I needed to pump, so we asked where the best place would be and then roamed the hospital trying to find a place that wasn’t occupied. We finally ended up in the PICU. This was perfect because it’s where I would be pumping for the next day or so while Beckett was recovering. As we were in there, we saw some names on the board for patients that would be coming into the PICU soon. Beckett was up there along with some familiar names. We realized that it was Becky and Mona Cope, the mother who was giving part of her liver to her daughter. We had read an article about them earlier in the week. We couldn’t believe it. They were here at the same time. How crazy.After pumping was done, we headed back to wait. As we walked into the room, one of the receptionists was on the phone and said, “Oh they just walked in. Here they are.” Shawn answered, listened for a minute and then hung up the phone. I asked him what they said. It was the surgical nurse. He told us that Dr. Scaife had opened Beckett up and found that he did indeed have Biliary Atresia and that he was going to continue on with the Kasai. In a way it was a relief because we finally had an official diagnosis. Not just “oh it’s presenting as BA.” We knew. We had a game plan that we could finally execute. On the other hand, it sucked. It sucked knowing what our future would hold for us.

We then went to go wait until the surgery was over. It was Shawn, his brother Bryan and myself. We talked, ate Saltines and candy and played Five Crowns. It was a good distraction from thinking too much about what was happening to our little man. While we were playing the game, a woman walked by us on the phone. She went through a door right next to us which led to the stairs. Then she started talking. It didn’t take long to realize that she was talking about her daughter and granddaughter and she kept talking about their livers. It dawned on us. This must be Becky Cope’s mom. We couldn’t believe it. When she finished her conversation and came back in the room to go back to the waiting room, we couldn’t help but talk to her. We apologized for eavesdropping and then explained how we knew of her and why we were there. She was so helpful. She talked to us about how Mona was almost 4 and that the Kasai worked really good for awhile. She talked to us about how Mona was a happy little girl who lived a relatively normal life and did most of the things that other kids did. We felt so much relief. That was my biggest fear. That Beckett wouldn’t be able to do those things that other kids his age were able to do. She put those fears to rest (mostly). We thanked her and later on she sent Becky’s husband Landon to come talk to us. He was great as well. It was so nice to talk to other parents who know exactly what we are dealing with.

After about an hour or so of waiting, Shawn’s dad came up and joined us. And it wasn’t too long after, that we saw Dr. Scaife walking down the hall. He came and sat down to talk to us. He told us that Beckett was doing great and that they surgery went really well. He talked to us about how he went and looked at Beckett’s gall bladder and it was practically non existent. He cut it in half and it was just empty. Not working one bit. And then he followed the ducts from the gall bladder and they practically disappeared into nothingness. So it was clear that he has Biliary Atresia. But the surgery went as good as could be expected. Beckett didn’t need extra blood and just did great. Dr. Scaife then told us that it would be about 30 minutes to an hour before we would able to go see him in the PICU. Words cannot describe the flood of relief I felt that Becks was ok. This man saved my baby’s life. Such an amazing feeling.

I was terrified to go see him. I knew he would have a giant incision. I knew chances were good that he would have a breathing tube down his throat. I knew he would be super out of it. I knew he would be swollen. We got the call that they were ready for us. I prepared myself for the worst. We went into the ICU and met George. He was the ICU nurse taking care of Beckett. And then we saw our little guy. No breathing tube. Not terribly swollen. The incision not as big as we were previously told. Oh how he looked SO good!! Shawn and I looked at each other and we both started bawling. We just clung to each other and were so grateful that he was alive. He was ok.

Even though he looked so much better than I could have imagined, it was still so hard to see him like this. He was so out of it but would still cry and moan as he was restlessly moving. Oh those little noises hurt my heart so much. I just wanted to take the pain away. We asked our PICU nurses when we could hold him and they said we could hold him anytime we wanted. I told them I wanted to hold him right then. They went and found a super comfy chair and brought it in the room. They got me all situated and then they grabbed my beautiful baby boy and put him in my arms. It was such an amazing feeling. Almost better than the first time he was placed in my arms after he was born. Almost. I will NEVER forget how it felt to hold him. To touch him. To kiss him. To feel him breathing.

Everyone kept telling us how well he was doing. It was so encouraging but I also knew in the back of my mind that we have a long way to go with his recovery. And his life in general. But he is alive and he is ours. And we will take it one day at a time. One step at a time.

Written by: Kimber

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Beckett’s Diagnosis Confirmed – Day 3

We slept much better that night. I got at least 5-6 hours. Once about 5 am hit, we were up. Because they did a liver biopsy the previous day, it was going to take a day or two before we would get those results. They told us that we would be able to be released for the weekend and then we would come back on Monday for the surgery. When the doctors did their rounds, they came and talked with us again. They said that so far based on the x-ray, echo and the initial results that they could see with the biopsy, that things were pointing to Biliary Atresia. The chest x-ray showed no butterflying of the discs in the spine. The heart murmur is a typical newborn murmur that a lot of kids have. And the liver looks fairly damaged but not so bad that it absolutely pointed to BA. But again nothing was confirmed. Dr. Book still wanted the eye exam to further rule out Alagille’s.

The eye doctor came and did a quick glance and said that his eyes looked good. Then he put drops in to dilate the eyes and used these horrible metal clamps to keep his eyelids open to be able to see in the back of the eye. His eyes showed no markers of Alagille’s. Deep down we knew they wouldn’t either.

At this point it was pretty much confirmed, Beckett had Biliary Atresia and the surgery for Monday was now imminent.

Written by: Kimber

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Beckett’s Diagnosis – Day 2

IMG_6552I was woken up by the nurse just before 4 am so that I could feed Beckett before he had to fast for four hours until his echocardiogram which was supposedly scheduled at 8 am. Beckett was also born with a slight heart murmur so they needed to make sure it wasn’t anything significant in case he needed surgery. They needed the whole picture before we moved forward. So 8 am came and went. Beckett was getting pretty hungry and pretty soon our day nurse (Her name was Melissa and she was phenomenal. The first nurse who I felt was advocating for us.) came in and asked if we were getting a liver biopsy. I told her that as far as we knew that was up in the air. She replied, “Well he doesn’t need to be fasting for the echo so if they aren’t doing the biopsy there is absolutely no reason why he can’t eat.” She left to go check on that. Soon she came back and said that we were on the schedule for a liver biopsy around noon. I was so mad. Now we had passed the point of the four hours before the procedure but he could have eaten at 8 am!!! So here he was, starving and I couldn’t do anything about it. Around 10:30, we were told that they decided to combine the echo and the liver biopsy together to make it easier on Beckett. I was grateful for that but they pushed it back to 12:30/1:00. Poor baby was so hungry.

While we were waiting, the liver doctors did rounds. While they were with us, they mentioned that the combo of the liver issues and the heart murmur could suggest another condition called Alagille Syndrome. If that was the case then there wouldn’t be surgery. So not only did they want to do the biopsy and echo, they also ordered a chest x-ray and an eye exam. There are physical markers that they can look for to confirm Alagille’s. The discs in the spine can look like butterflies. And there are eye defects that can visibly be seen. I started looking up Alagille’s and while I loved the idea of no surgery right now, the syndrome comes with lots of issues, some developmental that I didn’t want Beckett going through. And they end up needing transplants as well. It was hard hoping that the test indicated that he had BA and needed surgery.

Around 12:30 they came and got us to take us down to get the echo/biopsy. We had to sign consent for them to sedate him. So hard to talk to anesthesiologists about sedating your child. We passed him off to the doctors. They told us to go to the surgical waiting room and they would let us know when he was finished. It would be just over an hour and we would be able to go to him as he was coming out of sedation. We walked by the surgical waiting area and it was so depressing so we went downstairs and had Shawn’s brother bring us some lunch. We just chatted for a bit and then Shawn’s phone rang. He got up thinking they were telling us that Beckett was finished. It was Dr. Book. “Where are you?” Shawn replied, “At the cafe at the front of the hospital.” Dr Book, “Stay there. I’m sending a surgeon to talk to you.” Click. Panic ensues. With terror filled eyes, Shawn came over and got me. All I could think was that something went wrong and that’s why the surgeon was coming to talk to us. After a minute we saw a man who had to be the surgeon. He was carrying lots of papers. My heart sank. He introduced himself to us and we all sat down. After 2-3 minutes of talking to him, we realized that this was just a consult in case Becks did need the surgery. We were just getting it out of the way to streamline everything. You can’t even imagine the relief I felt that it wasn’t an emergency.

Dr. Eric Scaife was going to do the surgery. He sat us down and drew diagrams and went into detail about what he was going to look for and do. He told us that he would start with a dye study. He would inject dye into the gallbladder and if the dye went up into the liver then he would stop immediately because that means that the ducts are functioning. If the dye doesn’t go into the liver then he would continue with the Kasai. He also gave us some statistics on the surgery. He broke it basically into thirds. 30% of the time, the surgery doesn’t work at all. We would need to go straight to a transplant. 30% of the time, it works and then doesn’t work. That means it could be 2 or 5 or 10 years before it stops working and we go to transplant. 30% of the time it works. Realistically that just means that it’s a long time before it stops working and he needs a transplant. (Don’t ask about the other 10%, we aren’t sure what that is.) After he explained the surgery, he gave us a consent form to sign if we felt comfortable about moving forward. It’s weird having to sign something like that knowing that if you don’t sign, your child could die.

After talking with Dr. Scaife, we got the call that Beckett was ready. We went and saw him. He was pretty out of it but was doing well considering. We got him back to the room and I was finally allowed to feed him. It had been almost 12 hours!! We hung out in our room for awhile until it was time to go down and get the x-ray done. Once that was finished, we were done for the day because we missed the eye doctor while Beckett was getting the echo/biopsy.

I should mention that at this point we had dealt with lots of nurses and doctors. We had great experiences with pretty much all of them. They took great care of us. We especially became close with one of the tech nurses named Alysha. She was amazing! She would actually talk with us and love on Beckett and I now consider her a great friend.

Written by: Kimber

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Beckett’s Diagnosis – Day 1

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I woke the baby up at 7 am to feed him before he had to fast for four hours for the ultrasound that we had scheduled. We arrived at the hospital at 11 am and got checked in. Then we got called back to the ultrasound room. The tech (Brad) was great. He was really nice and helped us feel comfortable. Beckett had to lay there for about 45 minutes while we did the ultrasound of his liver, ducts, and gall bladder. He did amazing! Shawn just laid his hand on him and helped him keep a binky in and he did so well lying still. The tech was impressed. After the initial pictures were taken, the radiologist came in and looked at everything before they sent it over to Dr. Books (the liver specialist) office. We could hear the tech and radiologist talking but couldn’t really understand everything. I thought I heard them say that they couldn’t find his gallbladder at all. It was really scary not understanding what was going on. After they finished talking, we were done and were to head straight to Dr. Book’s office. We took a quick pit stop so I could feed Beckett and then we headed over.

We got to her office, checked in and got Beckett undressed for measurements. Then came one of the most painful waits of my entire life. Because this was a last minute appt and there was no set time, just a head over when he’s finished, we had to just wait for them to get to us. On the one hand it was super frustrating sitting there for over an hour but at the same time we were just so grateful to be able to get seen so quickly especially if this turned into something scary. We still had hopes that it was something quick and easy to take care of. Beckett was amazing. He just hung out and was as cute as ever.

Then one of Dr. Book’s associates (Krishna) came in the room. We did a thorough history and he checked him out. Then he went and consulted with Dr. Book and shortly after that, they came in the room, along with Brooke who is the liver coordinator at Primary Children’s. Dr. Book sat down, introduced herself to us and then it was straight to business. She said based on what they had seen so far she was fairly sure that Beckett did indeed have Biliary Atresia. She pulled up a chart and started to explain what that meant to us. Here is the basic idea. You have your liver. Coming out of the liver are a series of ducts that connect the liver to the intestines. This is how the liver drains the bile. If Beckett did have BA, then that meant that those ducts were either missing or severely damaged. Thus no drainage. The bile was just building up in his liver and that was causing the jaundice. It causes liver damage because the bile is toxic to just sit there. If that was the case then we would need a surgery called the Kasai. They would cut his small intestine and connect it directly to the liver, essentially bypassing the ducts. Then the part of the small intestine that connects to the stomach would be sewn back to the piece now connecting to the liver.

We were stunned. And overwhelmed. And confused. We asked questions about what that meant for his life. We learned that the surgery is just a band aid. If we don’t do the surgery, he would die or need a transplant within the year. If we did the surgery then it buys us time. Time for him to get bigger and stronger. This would allow the pool of donors to be larger. We both were sobbing. It was the hardest thing I have ever had to process. Dr. Book was amazing. She said we needed to run further tests to confirm the diagnosis. She wanted us to be admitted to the hospital so that we could streamline the process since the surgery is time sensitive. They won’t typically do the surgery after the baby is 90 days old because the success rate goes way down. So she wanted to jump on it. She reassured us that it was going to be ok and that they would take good care of us. She then turned us over to Brooke. She was amazing. She helped us get admitted to the hospital and told us that she would be there every step of the way through all the craziness. We were so overwhelmed but were so grateful for the help that we were receiving.

After the appointment, it took a little over an hour to get admitted to the hospital. We had to wait until a bed was ready for us. We ate some lunch, called our parents and cried a lot. Finally we were told that our room was ready and we could head up. It was late afternoon by the time we were admitted so the game plan for the rest of the day was to take a bunch of blood and also start an IV. It was hard watching them do the blood again, and again, and again but the IV was the worst. We asked if they could do it in his foot because he loves sucking on his hands. They tried one of his feet and it didn’t work. So then they moved to his hand. Again it didn’t work. Finally they tried his other foot and it worked. He just screamed and cried the whole time. And kicked. He kicked a lot and the nurses kept commenting on just how strong he was. All I could think of was how grateful I was that he was big and strong because if he needed surgery then he would need that strength.

He did really great. Even with the IV and the monitors that he was hooked up to, we could still pull him out and hold him. That was so nice to be close. We also blessed Beckett. We were told that surgery was imminent and didn’t want to wait until after. I wanted him blessed before. So we had a few family members come up to the hospital and we were able to bless him. It was really special. I’ll do another post on that later. That first night in the hospital, we slept horribly. I got ONE hour of sleep. The rest of the time was spent praying, crying and thinking. I was trying to process just how much this was going to change our lives. And how scared I was for the surgery.

Written by: Kimber

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The Beginning – 2 Month Appointment

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A lot of people have asked how we got to this point. After Beckett was born his bilirubin tested a little high. It wasn’t that high but enough that we needed to come back in a couple days and get him retested. We came back when he was three days old and got retested. The levels came within the normal range so we went home and didn’t think about it. At Beckett’s 2 week appointment, the doctor commented that he looked a little yellow but neither he nor I was concerned. After that it seemed like Beckett’s eyes got more white so I figured that his bilirubin was finally going down. A couple weeks before he turned 2 months, I started to notice that he looked really yellow. I started to see it in pictures and could really tell sometimes in his eyes. I had the 2 months appointment set up already so I decided to bring it up at the appointment.

On Monday October 6th, I got mastitis. I was so sick and nauseous and had hot and cold flashes. I was so miserable. But I didn’t want to reschedule his appointment because I was feeling concerned. Because of all that I asked my mom to come with me to his appointment and I am so grateful that was the case. I could not have handled all of what happened by myself. We showed up at the appointment and the nurse asked if I had any concerns. I said I did. When the doctor came in he said, “So you have some concerns?” I said, “Yeah, he’s yellow.” My doctor replied, “Yep, he’s really yellow. That was the first thing I noticed when I came in. I don’t like it at all. It’s super concerning.” My heart sank. I thought it would be an easy fix, bili lights or something. But I could just tell that it wasn’t good. My doctor said he was concerned about Biliary Atresia. He then said, “Don’t you dare google this until we confirm that’s what it is.” He then told me I needed to go to the hospital to get some bloodwork done and that he would make some phone calls. He said I would hear from him the next day to get the results of the labs.

My mom and I took the kids over to the hospital. The nurse gave me a heat pack to put on his heel so that we could just do a heel prick for the blood draw. Once we got called back the nurse looked at Beckett and said to me, “I don’t think we can do a heel prick. We need too much blood.” My heart sank. We then went to the back room and I had to hold him down while two nurses tried to draw blood. They blew a vein in his one arm and had to go to his other arm. It was so sad!

After the hospital, we went home. I tried not to cry but the fear of what could possibly be going on was so scary for me. I tried to keep busy knowing that we wouldn’t be hearing anything until the next day. I called Shawn at work and he came home. We both were really distraught and then we got a phone call from our pediatrician. He had already received the results of the blood draw and was really concerned. He had called up to Primary Children’s and just happened to talk to THE liver specialist, Dr. Book. She was really concerned about the labs as well and told him that her office would be reaching out in the next day or so to make an appointment. We hung up the phone with him and immediately got a call from Dr. Book’s office. They wanted us in the next day Wednesday the 8th at 11 am for a liver ultrasound. They told me that he had to fast for 8 hours but then changed that to just 4 hours which I was so grateful for. We got directions to the hospital and then hung up the phone.

I remember feeling so helpless and confused. I had no idea what was going on, just that I went in for a 2 month well check visit and now I had appointments with really big Doctors and there was talk of a possible surgery. It was so scary. But I had no idea just what we were in store for.

Written by: Kimber

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