The story of Ivy
~ I had hoped Liliana’s birth would be the end of the pregnancy chaos, but I had no idea it was only the beginning. During my pregnancy I had; pneumonia, food poisoning, toxemia and was diagnosed with Lupus. I felt like I was living in a soap opera and was ready to start a new chapter in my life; motherhood. But the calm, happy transition I had wanted was not meant to be. I had an emergency Cesarean at 32 weeks gestation because I had gone into seizures, kidney failure, and the placenta tore off. My body simply couldn’t support both of us and seemed unable to save either one. As I was rushed into surgery I was told Liliana would be stillborn. I remember how badly I wanted to survive so I could see Liliana’s face, even just one time. I had lost a baby girl the year before during the pregnancy and hadn’t been able to see what she looked like, I didn’t want this to be the same. A Chaplain sat with my family, because the Surgeon had informed them that I too would not survive. But to everyone’s surprise, we both pulled through. The Surgeon said it was a medical miracle, the first of many. She also commented that we must both be fighters, but what we didn’t know at the time was that her theory would be repeatedly tested. Liliana was taken to the NICU, which is where our journey actually begins.
~ Six days after birth was Liliana’s first surgery (and jaundice). At 30 weeks gestation we had found a tumor in Liliana’s abdomen during an ultrasound, between the stomach and intestines, which we believed to be causing blockage. Liliana was not eating and green “Bile” was being sucked out of her stomach by a tube. However, what we discovered during surgery was much more shocking. The “tumor” was actually a 2nd stomach. Liliana had 4 organs misplaced and all connected to each other like Siamese twins in a line beneath her rib cage. Directly beneath the sternum was the liver, the original stomach to the left, and a second stomach to the far left. To the right of the liver was the pancreas. The appendix was to the right of the pancreas, but wasn’t attached to the rest. This is known as Heterotaxy Syndrome, which effects 1/5,000 babies born. Because the organs were misplaced and connected the intestines could not flip before being covered with skin, known as Intestinal Malrotation, which effects 1/2,000 babies born. The 2nd stomach and appendix were removed, and the intestines were flipped. Everyone hoped this would be the beginning of Liliana’s recovery.
~ At 12 days old Liliana had her 2nd surgery, this time an emergency. Liliana had blown up like a balloon, now 3 times bigger than the day before, and blood was seeping from her mouth. It was an unbearable sight for any parent. Liliana was rushed into the OR even though no one exactly knew the causing problem. It turned out that the bands holding the intestines were too tight, cutting off circulation and creating an infection known as NEC. An inch and a half of small intestine had to be removed because the infection had eaten 2 holes through it over night. Due to blood loss the surgery couldn’t be fully completed. An Ostomy (bag and tubes combining the intestines outside of the body) was put in until Liliana was strong enough to have it fixed, with the promise it would be done before leaving the NICU.
~ The next few weeks were both good and bad. Liliana began to gain weight and showed some interest in eating from a special bottle called a Haberman. She was still dependent of a feeding tube and oxygen, but was finally improving. We were even able to finally hold her! It was the first time since she was born that I felt like I could breath. Then, Liliana turned 6 weeks old and we were hit with multiple bombshells. Liliana’s Father and I were told the cord in Liliana’s brain connecting the two sides was little to non-functional, but we wouldn’t know how well this bridge was working until more tests were done. We were told that Liliana had a cyst in her brain under the “soft spot,” which would more than likely need a shunt (put a metal funnel in the back of her skull) to let the fluid out. We were also told that Liliana had Trisomy 12P, a very rare chromosomal disorder. How rare is rare? The chances of Trisomy 12P are 1/50,000. Since its discovery in 1970 there has only ever been 50 cases of it worldwide, and Liliana was #47. We were told Liliana would have an IQ between 26 and 64, would never walk, never talk, or hit puberty. We were told Liliana would never show us any love whatsoever and would only live to be 19, if she was lucky. When people hear the word “Trisomy,” they automatically think of the most common, Down Syndrome, but instead her symptoms would be like Cerebral Palsy. The biggest problem was that very little was known about Trisomy 12P, but what was known was heartbreaking. I remember sobbing, not because she was “special,” but because we simply couldn’t catch a break. That was the exact moment Liliana’s Father left, saying that he was “ashamed” of Liliana’s diagnoses and that it was my fault for making her that way. We had said our wedding vows only 2 weeks before.
~ Liliana had her 3rd surgery at 2 months old to fix the Ostomy. I remember sitting calmly in the waiting room, nothing shocked me anymore. Sitting through Liliana’s surgeries was simply my life now, but hopefully this would be the last. That is when one of Liliana’s Doctors’s approached me, saying that considering her list of oddities I was never supposed to carry her past the first trimester. She was never supposed to be born. I was upset the Doctor couldn’t wait an hour to tell me this, until post-surgery. But the surgery did go well and ironically the scars made a smiley face on her stomach. After 101 days in the NICU she finally came home, just a few days before her 1st Christmas!
~ Nothing will prepare you for becoming a single parent of a special needs baby. Oxygen tanks, feeding pumps, and other medical supplies overtake your home. There is a permanently packed hospital bag in your trunk for emergencies. Family gatherings are suddenly terrifying because of the germs. The house has to be cleaned spotless daily, and then sanitized. There is no longer sleep, showers, or time to eat. Your days are consumed by multiple Doctor appointments all over the state. Every plan you made for your life is pushed to the back burner as you become a well oiled machine of personal service. And yet, it’s extraordinary! When you’re told your child is “special” nothing is ever taken for granted. Each day with your child is a gift, never a luxury! Each picture becomes sentimental, even though you have hundreds. Every morning, when your child cries for breakfast you are overwhelmed with joy that you get one more day with them. Regularly trivial milestones are phenomenal, because you were told your child could never do that. In the end I was actually happy that she was special, because it changed my priorities, perspective, and heart forever.
~ Milestones? She had many! Liliana could crawl, sit up, roll over, and even talk like a normal baby. Liliana was even able to go a month without a feeding tube at all. However, due to her Hypotonia (floppy muscles) these were much harder for Liliana than a normal child. I was so proud of her, not because she was rewriting everything I knew about Trisomy 12P, but because she was doing her personal best. She never ceased to amaze me.
~ When Liliana was in the NICU I had never noticed that she was legally blind, cross eyed, and deaf in one ear. Due to her seizure disorder I had only been able to hold her a few minutes every other day so she didn’t become stressed. I took Liliana to brain and eye Specialists, both wanted to do surgery. Then, when Liliana turned 6 months old the cyst in her brain burst. She was very sick at first, but then her brain absorbed the excess fluid. Suddenly, she could see! She could hear! Not only had she avoided 2 more surgeries, but the bridge in her brain was now fully functional. I was so happy for her. This is when her personality blossomed in leaps and bounds. Finally, my baby could respond and communicate with me after I’d given up hope of it ever being possible.
~ Liliana had a spiritual gift, or that is at least how it felt. When Liliana looked at you with those pale grey eyes you were taken back and unable to breath for a moment. It was as if she could see straight into your heart, seeing every flaw and strength in a single glance. When someone met her they instantly strived to be a better person from that point on. Her story brought inspiration to others and suddenly people all over the country were praying for her. But I found it strange that Liliana’s life was bringing faith to others as I was losing mine. It simply broke my heart that this never ending list of bad luck could happen to such an innocent and astounding person. Liliana spent her life bringing joy and unlimited love to others; it was unfair she be born sick and go through so much pain of constant surgeries.
~ But regardless of how hard I worked for Liliana she continued to get sick. Her seizure condition worsened, her blood sugars kept dropping, and she got even paler. I took her to Specialists all over the state trying to find one who could help her, fueled by desperation and love. It was her liver, it was shutting down. I offered to give her mine, many people did, but I was told it had to be by someone who also had Trisomy 12P. And even if someone with Trisomy 12P was a match and willing to donate the surgery still couldn’t take place. Liliana had too much scar tissue from the previous surgeries, plus the liver was still connected to other organs. There was only a 2% chance she would survive the transplant, and 0% without it. Words cannot describe the helplessness you feel as a parent to know there is nothing you can do to save your child. To watch your child get worse every day and know there is no one on Earth who can help. I wished they could just use my liver so this nightmare could be over. While they were at it they could take my blood, kidneys, heart, lungs. Whatever they needed, Liliana could have. Nothing in the world would have made me happier than to die so she may live. But it wasn’t meant to be. So instead, I made it a point of having her meet all of her family members and even begged her Father to spend quality time with her, even though he had moved on months before. I took her to parks and beaches, wanting her to see the good in life, not just hospitals. If she had to have a short life, it should at least be a good one.
~ Eventually, the day I feared most came. The day Liliana went to meet Jesus. I was on my way to take her to the Doctor, because she was clammy, not eating well, and vomiting. I wondered if I should skip the Doctor and go straight to the ER when Liliana had a massive seizure. She’d had hundreds of seizures before, but this one was so massive it triggered a stroke, which I didn’t know could happen before. I was only 2 miles from the hospital, yet the ambulance had sirens on and was running red lights. I knew it was the end and wished I had more time to find a miracle. I couldn’t remember my name anymore, or where I was, overwhelmed by emotional pain. This was also the day I learned hospitals have sound proof rooms to tell you that your loved ones won’t make it. By the time I was able to see Liliana her spirit was gone. My miracle baby was a vegetable and didn’t even know who I was anymore. They had tried to start life support, but her lungs and heart refused to work at the same time. I just held her hand, and tried my hardest not to cry, because I didn’t want her to be scared… Then I had to go home without her, see all of her things, and turn the butterfly invitations for her 1st birthday, still 6 weeks away, into obituaries. No one should have to bury their child, especially twice in 2 years.
~ I was not allowed to sleep in the grave yard; otherwise it’s where I would have lived for the first 2 weeks. So instead, I laid in bed hoping to cry myself to death, or possibly starve, whichever came first. Butterflies covered the window frame, never leaving, never moving. Seeing them brought back fond memories, because everything of Liliana’s had been decorated in butterflies. Not because they were tiny and delicate as she was, but because I had watched her transform from a preemie wrapped in bandages to a miraculous little girl. I will never forget walking into the sunshine for the first time after Liliana’s passing and the butterflies, which I’d assumed dead, swarmed and circled me. I had to stop so I didn’t harm this strange, yet fragile tornado. I figured it was a freak thing, but it happened every time I walked outside for years. Every time I miss Liliana the butterflies return, even if I don’t mention my longing for her out loud. Every time a tear falls from my face for her a perfect rainbow appears over my house, which rains on one side but not the other. I’ve come to the conclusion that these oddities, which I can’t explain, will permanently be part of my life. They make me feel like I’m not still mourning her loss alone.
~ I hate when people only ask why Liliana died when I speak of her. Do not ask me what was wrong, ask me what was right! Liliana was not defined by her disorder; she was an incredibly brave and unique human being. She was more than a medical unicorn, but my reason for living, my inspiration. I don’t want people to only remember Liliana’s long list of medical issues, but her red curls, feisty personality, and how happy she was despite her trials. I want to pull out pictures to show you how beautiful she was, and still is in my mind. Yes, I understand she is gone, but when your child dies part of your heart goes with them. So instead of reliving the agony, you remember the good memories of your child that bring joy and keep their memory alive.