As a young couple expecting their first child, we eagerly awaited her arrival. It seemed like picking names and nursery colors was strenuous and difficult. Throughout the nine months of my textbook pregnancy, we were building our house as we were building our family. We had dreams, we had goals, we had BIG plans!
On April 30th, 2011 we gave birth to a 6 pound, 3.7 ounce bundle of joy. My motherly instinct kicked in when they placed Lily Grace on my chest, I sensed something was wrong. I asked frantically, "Is she okay, is she okay?" and the nurse assured me that everything was fine. I knew her body was limp and she had no interest in sucking, but I told myself she would come around. For at least a few hours in the delivery room, Michael and I saw the happiness she brought to our family and were overjoyed with the thought of our healthy baby girl. As Lily Grace spent her first few hours in the nursery being monitored, Michael and I took the opportunity to rest after a long, sleepless night of contractions.
A knock on the door woke us up and our pediatrician, Dr. Moscato, entered and from that moment we knew our lives would never be the same. Dr. Moscato explained to us everything I feared, there was concern about Lily's low muscle tone and inability to suck. He told us that she may have Down's Syndrome. Thoughts started racing, "how could this have happened to us, we did nothing wrong, there is no family history..." With tears in our eyes, we gave Dr. Moscato permission to release our little girl to the NICU for further testing. Before she went there to stay, Michael and I got a few minutes to love Lily Grace in our arms and enjoy our first time as a family.
Michael and I followed hand in hand as the nurse wheeled Lily Grace in her bassinet down the hall to the NICU. We dreaded not only what the next hour was going to bring but the the next days, weeks and months were so unknown. I believe that God works through people and that day we entered the NICU, Claudia and Celia Shermeyer became our lifeline. Claudia and Celia were lifelong acquaintances, my mom went to school with Claudia and my sister with Celia. We live a half of a mile from Claudia. That day, she became our true friend and best caregiver in the world. We were overwhelmed with emotions as we watched Lily Grace get hooked up to monitors and and IV placed in her arm. At that point we knew she was a trooper and we needed to get on board.
We took in a lot that day, we were mentally and physically exhausted. That night, as we lay in the hospital bed, we prayed for answers, guidance and strength. We searched through the Bible and came across Psalms 8:2, in which the first part caught our attention, "Out of the mouth of babes and nursing infants You have ordained strength." That Bible verse became our rock to stand on in times of weakness and doubt. We knew God was with us and we were going to get through this.
We woke up the next morning somewhat refreshed, ready to fight a battle for our little girl. It was time to let the testing begin. Throughout the next two weeks, doctors and neurologists had their hands on Lily Grace. We started to get conflicting opinions on the possibility of Down's, so lots of tests were ordered to come up with an accurate diagnosis. Bloodwork, EEG's, MRI's, you name it...Lily had it done! Dr. Barron, a wonderful neurologist from Wellspan, looked at Lily Grace and instantly recognized distinct physical features that pointed to Zellweger Syndrome. A urinary analysis confirmed the abnormal breakdown of long-chain fatty acids which is a marker for the disorder.
Zellweger Syndrome(ZS) is a rare genetic disorder which affects the brain, liver and kidneys. Babies with ZS have little to no functioning peroxisomes, which break down toxins in the body. These babies usually have low tone, an inability to suck or swallow, cannot move, and eventually have seizures. Unfortunately there is no cure for ZS as well as no treatment. The prognosis is poor, the babies usually do not survive past six months of age. As Michael and I were told that our baby girl had ZS, the tears poured and our hearts were broken. There are no words to describe the hurt we felt that day.
Throughout our 18 day stay in the NICU, we learned so much about medicine, life, faith and love. From neurologist and neonatologists to the nurses and receptionists, we made lots of friends. Lily was known in the NICU for her sense of style and collection of headbands, she was definitely the best dressed! We were blessed to get to know so many wonderful people who genuinely cared about us and our baby girl. With the help of our nurses and doctors, we finally got to bring Lily home. As if the transition from two to three isn't hard enough, we had to be prepared to change feeding tubes, carry around oxygen bottles and know how to react to seizures. As we walked out of the NICU as a family, Michael and I vowed to give Lily Grace the best life with the best memories possible.
So we did! In three short months, Lily Grace experienced more adventures than some people experience in a lifetime. We took her hiking at Pole Steeple, Tumbling Run, Pinchot and Catoctin.
She was daddy's little girl at the Jeep Show!
She got manicures and pedicures from Mommy!
She swam at Fuller Lake numerous times!
She had photo shoots, with quite an assortment of dresses and tutus!
She even went tubing down the Yellow Breeches!
More important than any of these experiences though was the time she got to be with her family. Grandparents and great-grandparents, aunts and uncles, she was much loved. She has brought so much joy to all that have known her.
There is no greater pain than that of losing your child. It wasn't supposed to be this way. I began writing this post a week ago so that people could follow Lily Grace on her journey through life. Unfortunately, the start became the end. On July 24th, 2011, Lily Grace went to be with Jesus. I had a vision in my head of what I wanted when that day were to come. I didn't want to see it happen, I wanted to wake up and it was over. Good thing God knew better than me because when Lily Grace took her last breath, we were surrounded by family and nurses that loved us as much as Lily. It was peaceful and beautiful.
We prayed and believed for the past three months for a miraculous healing for Lily Grace. We are not angry, God didn't let us down, He was with us the entire time. We were comforted by His presence and love in times where the tears flowed freely and it felt as if we couldn't continue living. Maybe the miracle can be found in what Lily Grace taught us and others about life. Be thankful for every day with those you love, hug your children a little tighter, spend time with your family and follow God...He has a plan!
There will be a Celebration of Life Service for Lily Grace on August 13th, 2011 at Salem UCC, 2705 W. Canal Rd., Dover, PA 17315. Donations in memory of Lily Grace can be given to York Hospital NICU (1001 S. George St., York, PA 17405) or Dr. Bob's Place, pediatric hospice (838 N. Eutaw St., Baltimore, MD 21201). Feel free to continue following along with me on our journey of healing from the hurt, remembering Lily Grace and living life to the fullest.
