Our Little Warrior: Surviving a Liver Transplant
“Mommy, I hungry!” were the first and best words I had heard in a while from my daughter. It was January 19, 2017. For the past few weeks she had been battling what we were told was a virus of some sort. She wasn’t showing any signs of illness, no runny nose, no fever, no cough, she just wasn’t eating. Her appetite went from insatiable to non-existent over the course of three weeks.
As a mother, of course I was concerned. I had called her pediatrician and they recommended we just wait it out. A few days before “The Big Day” she didn’t even seem to want milk. Her urine was getting darker and her poop was getting lighter. So I did what every mother would do, I got on Google. Hello, anxiety! I quickly decided to log off and contact a very smart friend who works at our local Children’s Hospital. She suggested we take her in. Despite our pediatrician’s phone diagnosis of a virus, I scheduled to take her to get a second opinion the next day. So the morning of “The Big Day” Baylor comes into my room saying she’s hungry. With a huge sigh of relief, I give her a Nutrigrain bar thinking it’s soft and pretty easy to digest and a bottle of milk. I’m pretty sure she didn’t even breathe while eating and drinking. I felt as if maybe she was rounding the corner of this virus. Suddenly, there is milk being vomited across my bedroom, onto my dresser, and all over her tiny body. Before her body was even done throwing up, she was half asleep. She was literally closed-eyed, half asleep and still throwing up. I immediately text my husband, who was at work and told him I was taking her to the ER.
We arrived at the ER and were put in a tiny corner room separated by 3 curtains from two other patients. I gave them the whole summary of the last three weeks and they didn’t really seem concerned until I mentioned the dark urine and light poop. (I have learned that poop really is a big deal.) All of a sudden, what seemed like dozens of nurses and medical staff were in and out of our room. She had fluids hooked up for dehydration and a bunch of blood drawn for labs. Multiple nurses asked me if I had spoken to “the specialist” yet, which I hadn’t, but do you know how terrifying it is to know you’re supposed to talk to a specialist at one point, and yet you haven’t yet, but you know it’s serious because everyone keeps asking you about it? Let me tell you, it’s terrifying. At this time, my sister had arrived because I asked her to bring me a phone charger. I could tell she was also concerned and in all honesty, I’m so glad she was there at this time with me.
About two hours into our ER visit, the OU Children’s Hospital GI team walks into our tiny corner. They introduce themselves and name off their roles in all this fancy lingo I don’t understand. Then they say five short words that confused me even more, “Your daughter’s liver is failing.”
Liver failure? How? Why? She’s 1 year-old! She’s healthy and happy! It’s just a virus! What medicine does this require? When will we get to go home? ….these and so many other questions immediately flooded my brain.
About an hour later, my husband Bryant got off work and arrived. My sister and I had to explain to him what was going on.
I’ll fast forward a bit to save time and summarize the next few weeks for us and for our kids. We were admitted to OU Children’s to the general floor and then Baylor worsened and she was moved to ICU, from there, our GI Doctor recommended us to be transferred out of state, specifically to Houston, Texas, because she needed a liver transplant in order to live.
Not only are we going through something entirely new from a medical standpoint but now we’re going to have to go through it alone? Like, without our parents, family or friends around to help us? Mentally I still think of myself as some immature 22 year-old, who’s somehow married and responsible for two kids. How am I ever going to do this alone without my family or friends?
We signed some papers and that was it. The transfer began. Baylor would be medi-flighted to Houston and only one parent (and one bag) could board the jet which was obviously created for people who are shorter than me. Holy neck strain! We immediately booked a flight for Bryant so that he didn’t have to drive down and risk missing out on anything.
We made the decision to leave our firstborn son, who was 4 at the time, with my retired mother in Kansas, for an undetermined amount of time. None of us really understood what was happening or what would happen, especially him, but I’m so grateful for his positive and sensitive heart.
We arrive at Texas Children’s Hospital sometime right before midnight. They check Baylor in, do a TON of blood work, scans, vitals, etc and finally the GI doctor from TCH comes to talk to us. It was so late and we were exhausted, Bryant actually fell asleep while the doctor was sitting right in front of us. We both had a small chuckle about it later. We stayed in her ICU room there until about 3-4:00AM and then moved to the sleeping room, which is where all the ICU patients parent’s sleep. This room is full of recliners with carts of blankets and pillows. It was nearby, but separate from your child. It is some form of torture and I’m so glad they are expanding their hospital and ICU floors to meet these needs for all future patients and families.
Liver failure is unlike anything I’ve ever experienced. I never knew how vital the liver was to our body’s functioning. She had developed encephalopathy, stage 2, which affected her brain. Essentially her liver wasn’t working and couldn’t eliminate the Ammonia from her body. She was given different medicines to try and help with this, but it seemed to worsen with time. For the most part, Baylor was fairly normal. She was fighting this liver failure with all she had and even the doctors were amazed at her strength through it all given the numbers her labs indicated. A couple days after arriving in Houston, she got really sleepy. We were told to talk to her a lot and try to keep her awake, but many times she couldn’t. We just watched her sleep.
As the encephalopathy worsened, her behavior changed. The ammonia build up in your system makes your brain go a little crazy. She became angry and agitated. She (obviously) didn’t understand what was happening and she would throw her body around the metal hospital crib in anger. Since she was at risk to bleed out because the clotting factors also don’t work if your liver doesn’t work, trauma to the head or falling was particularly hazardous. We had to pad her crib down with extra pillows and layers of blankets to prevent any damage. Her eyes couldn’t focus on us and later not on anything at all. It was as if she was blind. She lost the ability to grasp items, she couldn’t talk at all, she couldn’t even sit up anymore, she didn’t even know our voices. Her brain and body was so sick that after an evaluation with the psychology team, they determined that she had reverted back to an infant stage. Somewhere between a newborn and 4 months. They said many small children do this when they experience trauma. They go back to a time they felt more comfortable. So, here’s my daughter who was dancing and climbing on everything just a week before, now essentially blind, throwing her body around, screaming, can’t hold her own head up, can’t sit up, and doesn’t know the sound of my voice. Not only did I not know how to comfort her in this stage, I literally couldn't. That was honestly the hardest part for me. That is my job as a mom. I’m the comforter. I’m the hugger. I’m the boo-boo kisser. I’m the tear-wiper. And I couldn’t be the mom. And to see her there, staring out at literally nothing, you could see in her eyes that she needed something or someone and was searching, but her brain at the time just did not know for what or who. It pained me to the core.
We spent the next few days by Baylor’s bedside, with improved and then decreased labs. At one point the team thought she was recovering on her own as some livers do, and then nearly in the next breath, they said it was too late and she needed a new liver as soon as possible. We barely slept, or ate, and we honestly didn’t even shower for about 5 days into our stay in Houston. (Gross, I know!) We went from living a normal life to trying to survive each minute with a dying child. Showers and eating was the last thing on our minds.
We arrived in Houston late January 23 and the next 9 days honestly still feels like an eternity. We have been blessed with a huge support system. Hundreds of people began following our updates on Baylor, they prayed for us, they helped us financially, they helped lift our spirits, they sent us food. They were all such a huge blessing to us and they continue to love on us now. Many people drove all the way to Houston to visit and lay their hands on Baylor in prayer. Without going back and reading some of our updates on Facebook, I can’t recall everything that happened in these 9 days. It was a whirlwind, or maybe a hurricane is a better description? Because the worse she got, the stronger we seemed to get. It was in these 9 days that our faith was tested and with the help of each other and our support systems, we were able to withstand and overcome fear and doubt. It’s these 9 days that molded us into the parents and Christ-followers that we are today.
January 31, 2017, I received “THE CALL” around 11:30 PM that a potential liver was available for Baylor. They had warned us that it was still possible to not be a match and we could potentially still have to wait, but it was perfect! Perfect is actually an inadequate description. It was God-sent.
The next day, February 1, 2017, Baylor left my arms around 1:15 PM and was taken to the Operating Room. She remained there for the next 8 hours. We received multiple text updates from the OR about the transplant process and how she was handling it all. Everything went smoothly, the team was all happy with it and we got to join her about an hour after they were done.
I wasn’t really sure what to expect when we saw her after surgery. Seeing all the cords, multiple beeping machines on either side of her bed, the tube coming out of her mouth, another from her nose, her tiny body on this big bed, this new scar across her entire stomach...the smell. Oh my gosh, the smell! I don’t even know what the smell is, a medical smell of some sort. The combination of both visual and smell made me nauseous. I couldn’t even approach her right away. I had to sit down and compose myself and my turning stomach. Even though we were now on “the other side” seeing her like that, in that moment, made it all so real.
You know, we never wanted a transplant. After they told us of what post-transplant life entailed, I prayed against it. It all seemed so scary, detailed, anxiety-filled, planned out, sheltered and different. Me, my husband, our families and hundreds of others who joined us on this journey literally prayed against transplant. From the initial visit in the ER when they told me her liver was failing, we all prayed that she would be completely healed without the need for transplant. And what I love about God is that He does have quite a sense of humor. Every step of the way, He was there for us. He answered our minute by minute prayers. He comforted us in ways that I can’t explain. He strengthened us to perform tasks that I don’t wish any parent to have to perform. He improved our marriage from the inside out. He answered nearly every single petition we had - except that she needed a transplant to survive. We now know that was necessary. He knew that if she was healed completely on her own, we would go back to living life on our own. He healed her through organ donation and the instability of post-transplant life in order to keep us close to Him for the remainder of our lives.
Since transplant, Baylor has flourished in ways we didn’t even know she lacked. Almost immediately she gained all the motor and age appropriate skills she had lost. Her speech improved drastically. She grew 4 teeth while in the hospital awaiting discharge. She began walking on her own within days of transplant and then shortly running up and down the halls after that. This new liver she was gifted is perfection.
We are just over 1 year post-transplant now and to say that we have all been miraculously changed and improved is an understatement. Daily, I just stare at her in amazement and my eyes fill with tears. She is feisty. She is smart. She is playful. She is a warrior. My husband prays for us daily. He prays for everyone and in any setting. He leads of our family and is a bold man of God and it’s incredible to watch. My sweet boy, who we missed for an entire month, joined us in Houston around Valentine’s day and instantly knew how to nurture and protect his baby sister without hesitation and without any coaching. He has become so sensitive to her health and helps us with medicines and reminds us of all the germs and risks she could face. He is so selfless.
Post-transplant life is exactly as they described it. It is hard, anxiety-filled, sheltered, and scary. But with each day, we get more comfortable with the routine, we get to love on each other again, we rely heavily on God each step of the way & and we get to remain a family of four. We are incredibly thankful for this gift of life!
Hi! We are Bryant and Alyssa Andrews. We have two children, Bryant III (BJ) who is 5, and Baylor is 2. We met in college in 2007. We were married in 2011 and we live in Oklahoma City. Bryant is a Middle School Reading Teacher and multiple-sport Coach. I have been CEO of the Andrews Homestead since September of last year (aka Stay at Home Mom) but I was previously a paralegal and office manager to a small law firm. We love to watch sports, complete DIY projects, have dance parties with our kids, attend LifeChurch and enjoy our small Bible Study group, and spend lots of time with family.
You can find us on IG: @ohemgeeitsalyssa or you can find more Insta stories of Baylor by searching for the hashtag #BaylorRaeStrong