“You set a table in the middle of my war,
You knew the outcome of it all.
When what I faced looked like it would never end,
You said, watch the giants fall.“
®Prophecy Your Promise – Bryan and Katie Torwalt
Hope Remains was inspired by our little girl. For anyone who knows us personally, you know pieces of our sweet pea’s story, but for anyone who is new to our family, we want to take a few minutes to tell you about the living, breathing miracle that we call our daughter.
When she was just four weeks old, we started what felt like a normal day in our new life with two littles at home. We had just finished an epic weekend of celebrating our little guy’s third birthday, and we had found ourselves in a pretty decent routine adjusting to life with a newly three year old and a newborn. I noticed she was a little sleepier than usual, but growth spurts and lots of sleeping are normal at that age, and we had had quite the busy weekend of looking at Dinosaur bones, so I didn’t think much of it. She had just started napping in her crib a few days prior, but for some reason, I felt like I needed to let her take her afternoon nap in her rock n play. (Which apparently have been recalled since, so don’t buy one haha, but at the time it was a real lifesaver!) She had been asleep for about an hour, when our little guy started to panic. We believe whole heartedly that there is no junior holy spirit, and with everything in me, I know that still small voice told our son to try to wake that sweet baby up. He knew that he wasn’t allowed to touch her without us helping him, but he was shaking her rock n play, trying to get her to wake up. When I walked over to stop him, I looked down at her, and she was grey. She was moaning in her sleep and looked almost lifeless. I picked her up and her skin was so hot that the back of her neck burnt my arm. I took her temperature and she had a temperature of 104.3. Keep in mind that anything over 100.4 is considered dangerous in a newborn. I had no idea what to do as I began to panic, so I immediately called my mom, who said to get myself together because we needed to get her to ER, and we needed to do it quickly. We were living in Columbus, OH at the time, and as I scrambled to get some things together, Nic came flying home from work. My parents rushed over to watch our little man, and we went flying down the high way to Nationwide Children’s Hospital. I have never driven that fast in my life. I was doing 90 down interstate 70 praying that she would keep breathing long enough to get there for help. In hindsight, we probably should have called 911, but again. Hindsight. By the time we got to the ER, she was completely grey from head to toe and her eyes were rolling back in her head. But she was breathing. We have never been more thankful for an ER staff as we were that night. They brought her back to triage immediately and started working on her. They got some tylenol in her to help with the fever, and started work on her vitals. They stuck a thermometer up her bottom in an attempt to wake her and her eyes popped open. I have never been so thankful to see those sweet eyes open up.
From there, it was test after test trying to figure out what the heck was going on. Her veins were so tiny that it took four tries by four different people to get an IV in her. They drew blood three times, and sent them out for labs. They did a straight cath urine sample. Her labs came back and they had found a mild infection in her blood stream. That infection had to originate somewhere so they decided that they needed to do a spinal tap to determine if there was any infection in her bones. They sent us out of the room as they told us to head out to the main waiting room, but I wasnt going farther than the doorway. I sat outside the door and listened to my baby scream as they put a four inch needle into her spine. As I sat on the floor of that ER hallway crying into my hands, I was silently screaming at God. That baby girl was a fulfillment to a promise that God had given us. We fasted and prayed for that baby. We sought the Lord for every part of who she was. Our hearts knew her before our hands ever held her and we had made it our purpose that she would be everything that God had designed her to be. She was not going to die like this. Not today.
When we were allowed back into the room, the doctor handed us our baby girl and said that her fluid was clear which meant it was not meningitis and that the infection had not made it to her bones. Thank the lord. But that also meant that we had no idea where this infection was coming from. She was admitted and they told us what we could possibly expect going into the next few days. They told us that her temperature being that high for that long was most likely going to result in some type of brain damage. They said to anticipate her never living a normal life. They said to expect a lot more testing over the next 24 hours and their would be intensive IV antibiotics running to clear her blood stream. We thanked the doctors who had worked so diligently on her that night and immediately began praying for a different outcome. We began praying for a source of infection to be found and that by tomorrow, she would be awake, alert and back to her normal snuggly, perfectly pink self.
A few hours after we had settled into her hospital room, a nurse came in and let us know that they had gotten the results of her straight cath urine sample back and they had found that her kidneys and her bladder were severely infected. They sent us for ultrasounds the next morning and her kidneys were extremely inflamed from the severity of the infection. The doctor that came in that afternoon told us that she would most likely have permanent kidney damage from the severity of the infection. They said that her kidneys would most likely shut down completely because she was so young, and her organs were still developing, resulting in dialysis awaiting transplant. They said to expect the worst and hope for the best, and we would see how the next few days went.
We had every one we knew, and everyone they knew, praying for her and her brain and kidney function. There were people all over the world praying for our sweet girl. Miraculously, over the next 24 hours, her kidneys continued to function at full capacity. A second ultrasound showed the same amount of inflammation, but somehow she was a fully functioning baby. The antibiotics were working. Her color came back, she was alert and awake. She was eating well and her kidneys were processing everything exactly as they should. We went home three days later and with what floor C5B was calling the miracle baby. We chose to believe that this was going to be a one time thing, and that we would continue on with our lives knowing that we had truly seen a miracle in her life.
Unfortunately, that was not the case. Three weeks later, we found ourselves back in the ER with our second UTI and kidney infection inside of two months. She wasn’t critical this time, thankfully, but her little kidneys did not need the stress that this infection was causing. Nationwide was quick to have us referred to Urology and sweet pea went in for invasive testing as soon as the antibiotics for her current infection cleared her system. She did really well, despite what was happening to her. Girlfriend is the ultimate trooper. Later that day we got a phone call telling us they had been able to diagnose the issue. She was diagnosed with a condition called Vesicoureteral Reflux, or VUR for short. I won’t bore you with the details but essentially, her urinary tract was not long enough to support her body and because of that, when her bladder would fill, her urine would back up into her kidneys both before and after she peed causing bacteria to build up and infect her bladder and kidneys. She was a grade 3 on a 5 point scale of severity, which meant that they would be able to try medication before doing surgery to correct the problem. They told us to expect her to be medicated for a range of 5-7 years knowing that she would most likely need surgery at some point to correct the issue.
The condition is more common in older infants and toddlers, but it only affects 1% of kids under the age of 8 months old. With this being a fairly common condition in little girls, we were often asked what made her particular case so fragile. The thing that set her apart was how young she was when she contracted her first infection and the amount of stress it put on her kidneys. Because he kidneys were still developing, the infection that had settled into them was enough to leave what they were calling permanent scarring and long term inflammation. We started her on 2 different daily medications and worked hard to prevent any further infections. We went quarterly for renal scans and with each scan we were told that the inflammation hadn’t decreased at all, but somehow her kidneys were still functioning. The medication had been keeping the infections at bay and her brain was hitting every milestone just as it should, despite the projected outcome of brain damage. Miracle. She was a living breathing miracle.
When she was right around 18 months old, we had just moved across the country, and we were establishing care with her new urology team. Her new urologist is incredible. He reviewed her case and he agreed that the fact that she was a fully functioning, non transplant kid was, indeed, a miracle. He recommended another round of invasive testing to see where she stood on the severity scale before we determined how to move forward in her treatment. We had two weeks until testing after that appointment, and we began to pray for a completed miracle in her life harder than we ever had. It was time for this sweet girl to be done with mess.
About a week before her testing was scheduled, we had a guest speaker at our church. After his sermon he asked if there was anyone in the room with kidney issues. He said he felt in his spirit that God wanted to create a new set of kidneys in someone’s body. Little one had just fallen asleep on my lap, but I emphatically raised my hand. He called us forward as Nic came off the stage and that man laid his hands on our baby and prayed the fire of heaven down on her little life. That little girl fell into the deepest sleep I have ever seen and stayed that way for over an hour. We believed that the work had been done that night and that her kidneys were whole, she was made new and that every part of her urinary tract was functioning exactly as it should.
One week later, we walked into Children’s Hospital of Colorado believing for the miracle to be confirmed for us. Our sweet girl screamed that heart wrenching cry as they filled her bladder and flushed her out more times than I can count and got every picture they needed. After testing, the urologist walked in and said the words that will never leave my mind as long as I live… “Her scans are clean. Theres no remaining inflammation in her kidneys, and she is reflux free. We couldn’t find anything. Go enjoy having a normal kid for the first time in her life.”
A little girl that was supposed to be brain damaged, on Dialysis awaiting a kidney transplant and at the very least, medicated for upwards of 7 years. Here she was, sitting on our laps, 18 months old, reflux free, completely healthy, above average in intelligence and beautiful. Only Jesus.
We took our sweet girl to Target and bought her whatever her heart desired, which for her was a Fancy Nancy doll that was nearly as big as she was. And we celebrated life. A life that we didn’t know if she would ever get to live. All those dreams we had for her before she was born. Dance class and pig tails. Dolls and dress up. Finding out who her favorite princess would be (which is Jasmine, by the way). Watching her grow up to be whoever God created her to be. We didn’t know if we would ever see any of those things in her life. But God.
Sitting on the floor of that emergency room hallway that night, I begged God to spare her life. I was so angry in my prayers. This wasn’t how it was supposed to go. She was our promise. We waited for her. That was not how her life was supposed to end. And God, in all of his goodness, seemed to reach down and hold me close. I instantly heard in my spirit, “What does her name mean?” (We don’t put our kids real names out there on this platform, but her name is a hybrid of two names.) I responded audibly, “Her name means valiant healer.” Then God responded with a question that humbles me to this very day. “How can she fulfill her calling and see people radically healed in my name if she has never been healed herself?” From that moment on, I was ignited inside. It was no longer a cry of self pity but a desire to see this healing come to pass because God promised it to me. Through every test, every heart wrenching cry, every fear of doctors and strangers because of the pain she endured, I thanked God as I comforted my daughter. For every late night she was awake despite my best efforts to keep her sleeping. For every temper tantrum in the middle of the aisle in Target. For every scream for her mama as we desperately tried to get her to stay in the church nursery. I thank my God for those sleepless nights, those tantrums and those “she just wants her mom” moments. Because she’s here, when she so easily could have been taken from us. She is more alive than anyone I have ever known, and for that there is no end to my thankfulness. There will never be a day that I shy away from telling someone of his goodness. How could I? I cannot unsee what I have seen or unknow what I know. He is faithful, and I will echo that truth every day that I have breath in my lungs.
“I would have lost heart, unless I had believed That I would see the goodness of the LORD In the land of the living.” Psalms 27:13
Standing here today, looking at my beautiful, spunky, hilarious, sassy little girl, I am certain of one thing. I have truly seen the goodness of my God in the land of the living. He is a God of miracles. And while I may never understand why he chooses to heal some on this side of eternity and not others, I cannot doubt that my God heals. I have seen it with my own eyes. That little girl’s life is living proof. And for that we celebrate her. We celebrate him too. Every milestone. Every holiday. Her first day of dance class. His first soccer game. Everything we do that seems small to most, is something so incredibly big to us. In our family we celebrate every milestone, because those milestones are miracles and we will never take them for granted.
I hope that our story encourages you. That in your weakest moments you can look back on our story and know that God is there. Even in your weakest moments, when it feels like you aren’t strong enough to handle what is in front of you, the creator of the world holds you in the palm of his hand wanting to walk you through those things that feel too heavy to carry.
For us, when it felt like the battle would never end, that we would never truly see our miracle, we clung to the fact that God sees the outcome of it all. When we felt too weak to handle this enormous thing we had been asked to carry, we found the strength to stand back up, and carry her forward. Because He knows that every giant we face will bow to his voice and he will finish what he starts. We just have to trust him in the process. Hope. There is always hope.
So for anyone out there walking through something that feels impossible, know that you aren’t alone. Not a single moment of your battle is not seen or known by a God that thought enough of you that he sent his son to die for you. If he did it for our daughter, he can do it for you too. No matter your circumstances today, know that you are seen. You are known. You are wanted. And more than anything we hope that our sweet girl’s story can show you that when all else fails, Hope Remains. Hope Always Remains.