“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
― Albert Einstein
I will never forget the day I told my husband I was pregnant. He was 35 at the time, was raising my two kiddos as his own, but did not have his own biological children. He got the biggest grin on his face when I shared the news. We both were just absolutely over the moon with excitement about this new life. I had an easy and uneventful pregnancy and loved being spoiled and doted over by him, every single day of it.
I was induced on May 15, 2009 and that is the day our Abby Lew arrived. She was the picture of health, weighing just over 8 pounds, 21 inches long and we could tell right away she was gonna look like her daddy. We were in love. Head over heels. So, so happy and totally enamored with our new baby girl.
The day we were released from the hospital to take Abby home to her big sister and big brother, there was a feeling in my gut that something just wasn’t right. She wasn’t nursing well and she hadn’t peed or pooped since early that morning. The nurses assured me that it was perfectly normal for newborns to not use the bathroom but a few times the first few days, but I knew in my heart that something had changed in Abby. This wasn’t my first rodeo, having already taken two other kiddos home from the hospital, and there is so much to be said about a mama’s intuition.
My suspicions were confirmed as we headed to bed that first night home. Abby still hadn’t used the bathroom since that morning, had refused to nurse for several hours and then she began to breathe shallow rapid breaths. We packed the other two kiddos up, dropped them off with Scott’s mom and headed to our local hospital’s emergency room. Abby’s temperature had dropped to 95.7, she was lethargic and foggy. We. Were. Terrified. We spent the entire night at our local hospital with them running tests and giving us zero answers.
When the morning NICU doctor came in she looked at Abby’s blood work, symptoms and THANK GOD decided to check her ammonia. One simple blood test. That’s it. That’s all it takes for the giant red flag to be raised and metabolic centers to be contacted. Abby’s ammonia was right around 500, with a normal newborn range being 0-90. Ammonia is toxic to every part of the body, but especially the brain and our little girl’s brain was being SATURATED with it. That doctor immediately called Riley Children’s Hospital in Indianapolis, and their lifeline team was dispatched.
As we waited, I sat in the rocking chair in the isolation room rocking our baby that seemed to be slipping away from us with each moment that passed. Abby was struggling to breath, struggling to focus, struggling to LIVE. I have never in my life felt so hopeless. We were losing her. LOSING HER.
The lifeline team got there and immediately gave her morphine so they could put in a breathing tube. Abby’s body went lifeless. She was limp as a rag doll. As they whisked her away, I looked down at the baby carrier that we had brought her in and thought, I don’t know if she will survive whatever is wrong with her to ever be carried in that again.
My brother drove down from Ft. Wayne so that he could drive us to Riley, where our baby and the metabolic team was waiting for us. We were in no shape to drive. We were running on pure adrenaline and zero sleep.
When we walked into the NICU all I could do was sob. Abby looked like a sweet, innocent, beautiful mess of a baby. She had three lines coming out of her belly button, an IV in her foot and hand and of course, the breathing tube. One of the metabolic doctors, who we later came to know as our beloved Dr. Chris Griffith, took us to the waiting room and that is when we were first introduced to the world of Urea Cycle Disorders, both complex and RARE.
We were told that the first 24 hours were critical and that Abby’s ammonia level had to drop by a significant amount or they would have to do dialysis to rid her body of it. They also told us that if they had to do dialysis there was a 50% chance they would lose her because of how risky that procedure is for newborns. At 4:30 the following morning her ammonia had dropped below the point of needing dialysis and we felt like we could actually breathe for the first time since we brought her to the emergency room. Hope was starting to make a much needed and long overdue apearance. Amen. Amen.
From that point on Abby was a superstar. Her body responded so well to the medication and her ammonia level continued to fall. It took about a week before we could actually hold her. She had to have several lines removed as well as the breathing tube. That was tough. Seeing her lying there and not able to hold her. Comfort her. Gut-wrenching and heart breaking.
We were told she may not remember how to suck a pacifier, or take a bottle. She did both of those things immediately when they were reintroduced to her. We spent twelve very long days in the NICU at Riley learning so much about Urea Cycle Disorders. The medications. The formula. How to take care of a central line. What to watch for, etc. It was overwhelming. Exhausting. But, we still believe, to this day, that we witnessed miracles right before our very eyes.
The doctor’s hands. Hearts. Brains. The nurses compassion. Skills. Knowledge. The prayers. So. Many. Prayers. God’s presence was felt. Deeply. All of that, every last bit, was a miracle. A miracle that kept our baby living and breathing and THRIVING.
We spent the first year of Abby’s life pretty much in isolation for fear of her getting sick and becoming metabolically unstable. We spent many sleepless nights watching her like hawks, scared and so worried we were going to miss one of those signs that something was wrong. You couldn’t pay me a million dollars to relive that first year of her life.
Abby is now a happy thriving NINE year old little girl, but a little girl that knows far too well what a needle feels like, what a hospital stay feels like, what a low protein diet is like and what it’s like to have to stop playing to take medicine for the fourth time in a day. She has had to endure far more than any child should. But, she is smart. She is funny. She is curious and adventurous. She is a good friend and the sweetest little soul. She. Is. Joy. Pure, unabashed JOY. And, above all else, SHE is a miracle. Thank you, Jesus.
As always, thanks for reading!