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Lily's Story
"I went into Labor on September 5th, 2011 (Labor Day). Funny right?..."
I was in pain before I reached the hospital, but I was excited, too. This was yet another hospital trip after the many hospital trips we had made in the last few weeks. We could not quite figure out why I had had so many contractions for weeks on end, but soon enough, we would soon find out. On September 6th, 2011, we finally made the trip to the hospital after I had said that I was bleeding. Lily was expected to need immediate surgery after birth due to the fact that she had a meconium obstruction within her bowel. At first we had suspected that she had Anal Atresia (a birth defect in which the child is born without an anus). However, when the doctor broke my water, we soon found out that she had passed meconium; which, of course, meant that she was able to pass bowels. We all became excited at this news. We thought that Lily would be a perfectly healthy baby. There was only one problem though. Lily was going through fetal distress throughout the whole labor. Her heart rate would drop to nearly 60 and then slowly jump back up. It was the first of many scary moments to arise within our lives. When the time came to push, the doctors had stated that if I could not push her out soon that I would have to have an emergency c-section.
Lily Belle was born at 2:49p.m. on September 6th, 2011. She was 4lbs. 15oz. and 18 1/2 inches long. There were a few problems though: Her platelets were down to 15, she had what was known as “blueberry muffin spots” on her skin, her liver and spleen were enlarged, she had pulmonary hypertension, and was very jaundiced. I couldn’t hold her, so instead I held her tiny hands. Five minutes later she was rushed into the NICU and soon enough, I would be told of a virus that would change my whole world.
I had a whole team of doctors walk in and the very fact that it was a whole team scared me to death. The first words out of my mouth? “What’s wrong with her? What happened?” They were speechless. The infectious disease specialist soon explained to me that my daughter had contracted a birth defect virus in-utero. They stated that it was in my records and then asked if I had known. The problem was that I didn’t know. My Ob/Gyn tested me for it and I tested positive and I still was never told. I never knew about cytomegalovirus or that anything was even wrong besides a meconium plug. It just...wasn’t right. I instantly became filled with anger and wanted to know why I was never told but I realized that it didn’t matter. I just wanted to know what was going on with my baby girl. They explained to me that she had calcifications in the left lobe of her brain and that later on in life she could be disabled and maybe even deaf. Hearing those words come out of their mouths within minutes…Having to listen to the fact that my baby wouldn’t be healthy and that there would be nothing I could do about it…It was too much. They soon left and I requested time alone. I cried for my sweet child. It just wasn’t right. Why would this happen? How? How could they not tell me? I know they said that it wasn’t my fault, but what if I could have somehow prevented this? Just...why? Then all these thoughts just STOPPED. I had one last final thought that made the tears stop and the strength come to surface.
“It doesn’t matter why this happened. It just did. It doesn’t matter. All that matters is that she’s your daughter and that you love her. All you can do is love her. All you can do is know that even if she is disabled or deaf or even blind or God knows what! That she is PERFECT just the way she is and that obviously there are no such things as accidents. Obviously God sent her to you because she needed you so stop playing the “woe is me” game and start being a MOM.”
This thought wasn’t my thought. It was God.
Two hours later I got to see my baby in the NICU. I didn’t get to hold her for another couple of days. The worst feeling I have ever felt in my life was walking out of that hospital without her in my arms. Every mother dreams of that moment when she finally gets to take her baby home. And for Lily and I...that just wasn’t going to happen yet. For seven weeks I went to that hospital 2 to 3 times a day. We went through constant tests...MRIs, Spinal taps (for when she got a blood infection from her pick line), hearing tests, advanced hearing tests (which both determined her to be completely deaf in her left ear), CBCs every 12 hours, transfusions almost every day, suck swallow tests to check for aspiration, sonograms on her liver, spleen, and brain, liver function tests every week along with ammonia level tests, tests to check for any other blood issues, and so much more! Constant pricking, constant tears, and a lot of meds to relax her for all of the tests. It was tough, but when the day came for us to finally come home...it was wonderful.
Soon after that Lily and I would be visiting 12 specialists a month! One day when Lily and I were at her hematologist’s office she had yet another CBC. However, this one didn’t turn out so well. It showed that she had immature blood cells. What do immature cells mean most of the time? Cancer. In this case: Leukemia. Lily was admitted into the hospital for a bone marrow aspiration and a liver biopsy. Bone Marrow Aspiration? Perfect. (Thank God. Because we were so scared that she wouldn’t make it through Chemo) Liver Biopsy? ...not so good. The doctor literally told me that her liver was green. A week later we had to take her back into the hospital because her liver had flared up due to the anesthesia. That’s when we had received the results of her liver biopsy (which I was very sure what they already were...) Cirrhosis. Stage 4 cirrhosis. As in the cirrhosis that kills you. As in her whole liver was so scarred up that she was lucky she was even alive! Liver transplant? I fought for it...like crazy. It wasn’t until we got to the liver specialist in Dallas that we had found out that she was unable to have a liver transplant. Not because of the fact that she was on Medicaid or too small (like I had thought) but because the CMV was still active within her body. The immuno-suppressants that are needed for a liver transplant would kill her alone. It would be like “pouring gasoline on fire” as the liver specialist put it. The CMV would soon disseminate the rest of her organs. And even if she did somehow survive the immuno-suppressants, the CMV would just attack the new liver. Later, we went to the hospital a few more times, for a UTI and for her restrictive lung disease due to the enlargement of her liver and spleen. Lily had even had a code blue in the hospital before. However, there would be one last hospital visit. Lily within the last weeks was experiencing pain, had to be put on hospice, was given morphine, and would stop breathing in her sleep for like 5-10 seconds and I would not be able to wake her up. Her liver and spleen were more enlarged and she was just plain getting worse. In the hospital, we soon came to the realization that Lily was dying...she was in more pain, and she was just...getting worse. Lily woke up the next morning screaming in pain for four hours. That’s how long it took for the pain team to figure out what she needed. She was given morphine, methadone, and adavan. She was so drugged up that she rarely woke up and rarely smiled...had I of known that the night before when she was smiling would be her last smiles... I would have picked her up and just held her as close as possible...We stopped the feeds because she was experiencing a fluid overload, which was causing the pain. Then, we went to the hospice house. Her father, stepmother, and I all watched her as I held her in my arms. That night I refused to let her go...
I always told God, even during my pregnancy, that if he was ever going to take my baby from me that all I asked for was just five minutes to let her know that I loved her and then…he could take her. I trusted him more than myself with my own baby...
God gave me much more than five minutes. He gave me hours. He gave me days. He gave me weeks. He gave me 4 months and two days. And I loved each and every second of it. I miss making her smile and seeing those sweet eyes stare at the bright lights that we put up in her room. Smelling her hair and giving her baths and singing to her before I put her to sleep. That sweet Lullaby...
“Look at all the angels watching you
They’re singing songs that we have never heard
And their voices ring like bells over the mountains
Oh if only we could hear their words
God is near little girl
God is near little girl
Your eyes are brilliant deep sky blue
Their quiet wisdom is an evening song
And the angels must be breathless at your beauty
As the world catches its breath before the dawn
God is near little one
God is near little one..."
That night Lily soon got a fever and her breathing slowed. I looked at her little fingers and her little toes...they were so blue. She was modeled and sleeping in my arms. I sang her her lullaby one last time, except this time I added a new verse...
“And if I had known that the smile you had shown would be the last one that I’d see
I’d gladly hold you closer to me
And although these tears stream from my eyes and I’ll be dreaming of you smiling tonight
I know you’re going somewhere I’ll soon be...
I love you, Lily...
Oh, I’ll miss you, Lily”
I watched her breathing become so slow. She would stop breathing for twenty seconds and as we waited to hear the next breath she would finally breathe again...
“Jesus bends to hear you breathe
And his tender hands are holding you tonight
And he’s ravished when you look, when you look at him
And oh the endless mercy in his eyes
God is here little light
Oh God is here little light
Oh God is here little light
God is here little light”
We all fought to stay awake with her that night but soon enough we all fell asleep. I guess that was God’s way of saying that he didn’t want us to hear her last breath...
Lily passed away in my arms at 6:10 am January 8th, 2012. I awoke to her, happy that she was out of pain...
And sad because I missed her...
I kissed her one last time and then let her go.
Lily was and forever will be God’s greatest miracle to me. She gave me strength and a new perspective on life. She gave me a new mission in life...
To create awareness of this horrible virus, to forever tell her story, and to help others who are going through what I went through.
Lily lives.
- Shared by her mother, Briar