We finally got Lily's obituary in the newspaper today. http://www.delmarvanow.com/
To make a donation in Lily's honor to the Trisomy 18 Foundation, visit Lily's legacy page at http://www.trisomy18.org/goto/LilyGraceHolder.

We are a family of four

Some days (okay...most days) my heart is consumed with guilt and grief.
I feel guilty for taking the little bit of time I had with my baby in my womb for granted. I feel guilty for compaining about really stupid stuff. I complained about not being able to drink coffee or iced tea, and now that I can, I don't want to. I would give anything to have my baby and do away with caffeiene forever. I complained about not being able to help lift boxes during our move and not being able to paint. As it turns out, I couldn't lift boxes anyway because I had delievered our baby just five days before we moved. I can paint now, and of course, I don't even want to. I complained about not being able to wear my cute summer clothes, but I would gladly trade my wardrobe for the ugliest maternity clothes available if it meant having my daughter in my arms.
I feel out of balance. My role is to protect, nurture, and take care of my children. I have to take care of my son, and provide for him. He needs me. He helps me through each day without even knowing it. It is devastating to me that I can't take care of Lily. I was unable to protect or help her. She was sick, and I couldn't do anything about it.
My mind is full of questions. Not what you may think...I'm not wondering why me or why us or why did this happen. I'm wondering what my baby is experiencing right now in heaven. What is she seeing, smelling, hearing, tasting, feeling? What will happen when I join her? I was able to spend hours holding her and looking at her in the hospital, but will I recognize her? I already feel like I can't picture her precious face exactly as it was that day. Those hours spent with my baby weren't enough. She never opened her eyes to see me. Will she recognize me? Will she know that I am her mother? Does she know how much I love her?
I like to think that she is receiving lots of hugs and kisses, and that she is not limited by any developmental delays. I like to think that she is able to run and play as much as she wants. I like to think that she has every opportunity to sit in Jesus' lap or to be held in His arms. I hope that when I get to heaven, I will be reunited with her immediately and that I will feel whole again. I want to hold her, kiss her, sing to her, and dance with her in my arms. I will thank Jesus for loving her and for taking such good care of her, better than I ever could.
I used to have reservations, maybe even a slight fear, of dying and what I would experience in that moment. I am no longer afraid. I am confident that when that time comes for me, I will embrace it fully knowing that I will see my baby girl again.
I have been forced to move on, to keep going. The move had to happen, but I would have preferred to go into hibernation and stay curled up in my cozy bed in the home that I felt comfortable in. That home was the home for our family of three. Our new home was intended for our family of four. Although we lost our little girl, Duran says that we are still a family of four. I love him even more for saying that and really meaning it. He is right. Lily will always be a part of our family. She is still our daughter.

Lily's Story: from Beginning to End

This pregnancy began with such excitement! We found out I was pregnant on Superbowl Sunday (February 7, 2010), and although we enjoyed keeping this pregnancy a secret for a couple of weeks, it was so much fun to tell our family and friends the good news. Our excitement was magnified when I learned that Tracy was pregnant too. I had always said that it would be so much fun to be pregnant with my big sister. We soon found out that not only were we both pregnant, but our due dates were exactly the same- October 28, 2010. Our family was thrilled!
We marveled at our tiny creation during our first ultrasound when I was just 7 weeks pregnant (March 9, 2010). Our baby had a strong heartbeat, and our hopes and dreams were coming true. We were so excited for Owen to be a big brother. We immediately went into house hunting mode (this time we were serious), and found the perfect home for our new family of four. We got a contract on our old house after only a week and half on the market. Everything was going our way.
We anxiously awaited our next sonogram appointment (May 26, 2010). We couldn’t wait to find out the gender of our new bundle of joy. Owen had decided that he was going to have a baby sister, and would adamantly tell anyone who asked.
We found out within a minute of our sonogram that we were having a girl! Duran was beyond excited as he has always dreamed of having a little girl. I cried tears of joy for him. Our sonogram technician was the same woman who completed our sonogram when I was pregnant with Owen. We remembered her right away and were so grateful to see her again. She was very friendly and we seemed to connect with her at our last appointment. This time, however, she was quiet and somewhat withdrawn during our appointment. Soon into our appointment, I sensed that something wasn’t right. She was spending what seemed like a really long time looking at the same images over and over. She shared with us that our baby's ureters were dilated. At the time, I did not know what this meant, but I could tell that it wasn’t a good thing. She also expressed concern that she wasn’t able to get a good picture of the spine. Our baby girl rolled over, and Duran and I thought we could see the spine, but she repeated that she wasn’t getting the picture that she wanted. She began to ask me when I would see my doctor again. I grew more concerned as the appointment went on, and I left the office in tears fearing that our baby girl was not healthy.
I contacted my doctor’s office that afternoon, and waited anxiously by the phone for someone to reassure me that our baby girl was okay. In the meantime, I googled ureters, and found out that this problem could be corrected with surgery if it didn’t correct itself before the baby was born. I felt somewhat better momentarily, although I couldn’t shake the nagging feeling that our baby’s problems were bigger than that.
Our Dr. finally called, and expressed that she was “very concerned”. I braced myself for bad news, and she explained that the ureters leading from the bladder to the kidneys were dilated, and this meant that urine could get blocked in the kidneys. She also explained that the nuchal fold on the back of the neck was thickened. She shared that the brain structures were not able to be visualized. Due to the fact that there were multiple abnormalities rather than one isolated birth defect, our baby may have some kind of chromosomal abnormality or syndrome, like Down’s syndrome. She recommended scheduling an appointment for a higher level sonogram as well as meeting with a genetic counselor. We were able to get an appointment in Annapolis the next day (May 27, 2010). While I was able to listen to this information and process it, as soon as I hung up, I fell apart. Then, I researched. I looked up everything I could on the internet, and I had myself convinced that our baby had Down’s syndrome. Our appointment couldn’t come fast enough. I had to know what we were facing. I had to prepare myself for parenting a special needs child.
The next day, we made the trip to Annapolis. I cried the whole way there as I thought about how our little girl would struggle physically, emotionally, socially, and academically. I knew that I could parent her and love her, but I was worried about her ability to handle the world, and the world’s ability to handle her.
We arrived at the Center for Maternal and Fetal Medicine and met with Melissa, a genetic counselor. She explained some of the more common chromosomal abnormalities, and shared with us some of the notes that she had received about our sonogram the day before. We learned that in addition to the news we received yesterday, our little girl had some facial abnormalities, which I expected would go along with a Down’s diagnosis. She talked also about Trisomy 13 and Trisomy 18, which I briefly read about on-line, but quickly dismissed because everything I saw on-line said that these diagnoses were “not compatible with life” and I certainly did not think that our baby was dying.
A technician began our sonogram, and she was not able to share any information with us until the doctor came in. Every image that she looked at, I would ask her if everything looked okay. Her responses were vague and not reassuring. She looked at the brain for a long time, and although I didn’t really know what I was looking at, I felt like something was wrong. I wanted to know if her legs, feet, and arms were okay. I needed to know that some part of our child was okay. Dr. Sweeney joined us, and looked at each organ and body part. He confidently told us that our baby girl had holoprosencephaly (HPE). This was definitely not anything that I had read about on-line, and I thought I had covered it all. He shared that holoprosencephaly is a brain malformation that typically occurs around 3 weeks gestation. The brain usually splits into two hemispheres, and our baby’s brain did not. There was also fluid around her brain. He explained that there are 3 levels of severity, and that our baby’s diagnosis was alobar holoprosencephaly, which is the most severe. He stated that our little girl would never be able to walk, talk, or function in society. In addition to this diagnosis, he suspected some type of chromosomal abnormality, but he was able to rule out Down’s Syndrome. At the time, I wasn’t sure if this was good news or not. We opted to have amniocentesis done, which if you know me, you know that I did not take this decision lightly. This test would let us know if there was a chromosome abnormality or not. Having this information would further clarify our baby’s prognosis, as well as possibly explain why our baby had holoprosencephaly. Dr. Sweeney let us know that based on what he was seeing, he thought that our baby had Trisomy 18. He explained that this diagnosis is “not compatible with life”.
He apologized to us, and stated that this was very bad news. I couldn’t completely process what he was telling us. How could this be happening? We have a healthy child at home, and I had been feeling fine. I never detected a problem. This was not in our plan. We didn't have a family history of birth defects or chromosome abnormalities.
We had been preparing for our baby’s birth, not our baby’s death. I was excited to buy clothes, nursery bedding, and furniture. I realized how quickly this life could be gone, and how our dreams of expanding our family may not be a reality. I immediately felt guilty for not relishing every second of my pregnancy. I began to think that I had taken the last 18 weeks for granted, assuming that our baby was healthy. I wanted to go back in time, and thoroughly enjoy every second that my baby was with me because she may not be with me much longer.
On Sunday June 6, 2010, our little girl, Lily Grace, joined Jesus. I delivered her at 3:25 am, and spent that afternoon and evening holding her, and gazing at her. I thought about all of the things that she will never have the opportunity to experience. I looked at her and imagined what she would have looked like if she had made it full-term. I thought about the fact that I will never know what color her eyes were or what her voice would have sounded like. I will never see her smile or hear her laugh. I will never teach her to walk or even feed her. She would never play with her big brother, and he would never be able to meet her. My expectations of him being able to protect her through life were now reversed to her watching over him.We chose to have her baptized, which is a memory that I will always cherish. I thought about the fact that I will never have the opportunity to teach her about God, but that she may be the one to teach me about Him. I am finding comfort in knowing that she will never have to suffer physical or emotional pain in this world, and that she is safe in heaven. I know that in heaven she is not “abnormal”. She is perfect in every way. She is beautiful. In my mind, things were not supposed to turn out this way, but God’s plan is always right. We quickly shifted from picking out nursery furniture to discussing burial versus cremation. We were now faced with choosing a final resting place rather than a place for her to sleep each night.
We received a call from Melissa, the genetic counselor on Monday June 7, the same day I returned home from the hospital. She called us at 9:00 that night from her home to share with us the second set of amnio results, which confirmed Dr. Sweeney's suspicions that Lily had Trisomy 18. She had a very rare arrangement of this abnormality, with is referred to as Isochrome 18q. Due to the arrangement, this did not show up on the first set of amnio results. Melissa has been kind enough to email me articles and information on this diagnosis to allow me to learn and understand as much as I can. The combination of Trisomy 18 (Isochrome 18q) along with alobar holoprosencephaly was the worst case scenario. In retrospect, receiving a diagnosis of Down’s Syndrome would have been good news. At least then, I would be able to hold my baby in my arms and see her face every day.
People have attempted to make us feel better by talking about the fact that we can get pregnant again. I know that their intentions are good, but getting pregnant again doesn’t eliminate the fact that I feel like I should still be pregnant now. It wouldn’t change the fact that Lily is my daughter. Another child will not erase her memory or her brief existence. I delivered a baby girl, and left the hospital without my baby in my arms.
We are tremendously blessed to have so many wonderful friends and family members who have prayed for us, prayed with us, brought us meals, sent us flowers, mailed us cards, donated their vacation time to me, and called just to check in.
We are now settled in our new home, which was intended to meet the needs of our family of four. The nursery door stays closed, and Lily’s ashes are by our bed side. I find comfort knowing that she is here with us in our new house, which we picked out with her in mind.
My grief will be a long process, probably with no end. I will grieve the loss of my baby girl until the day that I join her. I think about her every day, and I hope that I always will. She will always be a part of our family, and one day, I will let Owen know that he did have a baby sister just like he said.

Thank You

Although I have sent personal thank you notes, I'd like to publicly acknowledge all who have touched my heart recently and helped my family to cope with the loss of our little girl.
The medical professionals who worked with us were all amazing. We were blessed to have Dr. Urban deliver our baby girl. She educated us on our baby's condition and offered a tremendous amount of support and encouaragement. All of our nurses at PRMC: Jean, Lindsay, Christy, Beth, Maggie, and Dawn. They each offered us just what we needed at the right times. Melissa, our genetic counselor in Annapolis, who was so compassionate and patient with us. Dr. Sweeney, also in Annapolis, who shared with us our baby's diagnosis for the first time. He was straight forward and honest when we needed him to be. He gave us the information that we needed without offering us false hope, which I appreciated. Jenn, the bereavement counselor with the hospital, who talked with us inthe hospital and continues to stay in contact with me for support.
My family, obviously, has been there for me every step of the way. I am blessed to have such an amazing family. They are my strength. My parents, who stayed with me the entire time I was in the hospital and nearly every day since. My mom has listened to me cry and grieve, and has loved me like only a mother could. My sister, Tracy and brother-in-law, Steve, who both had the opportunity to see and hold Lily. I also want to thank Father David Tontonoz, who came to hospital to baptize Lily. Also, Pastor Mark Bunting, who came to visit with us in the hospital. Our new church famiy who sent us a gorgeous flower arrangement and prayed for us. Although we don't know many of you, we are extremely grateful for your prayers.
Our friends who brought us meals and flowers: Smoot, Sherry, Michelle & Gene, Sara and Dee. And the many, many more friends and family who have called and sent cards, letters, and messages.
My ESPS family, who donated their personal vacation time to allow me time to heal. My supervisor, Laura, who offered support and encouragement when I needed to share with someone what was happening.
Each of you has reminded me how much we are loved and how much Lily is loved. I appreciate you all, and want you each to know how much you mean to us.

What is Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It is considered lethal or has a very poor prognosis in all cases. 50% of affected infants born alive (most result in miscarriage in the early stages of pregnancy) will die in the first 2 months of life and 90% will die in the first year. All survivors with full trisomy 18 have profound mental retardation.
A great website to get more information about this condition is www.trisomy18.org
Also, www.trisomy.org is a support organization for parents who have had or are expecting a child with a chromosome disorder (especially trisomy 18 or trisomy 13).

What is Holoprosencephaly?

The following is information that I have gathered from numerous articles, research studies, and websites.
Definition:
Holoprosencephaly is a profound fetal brain anomaly that cannot be altered or treated. It is a disorder in which there is a failure of the front part of the brain to properly separate into what is commonly know as the right and left halves of the brain. This lack of separation is often accompanied by abnormalities of the face and skull. Holoprosencephaly may occur individually or as a component of a larger disorder.
A chromosomal abnormality is more likely to be present if extrafacial abnormalities are detected on sonography.
Types of holoprosencephaly:
Holoprosencephaly comes in three different types: alobar, semilobar, and lobar. Each of these classifications is based on the amount of separation between what is commonly known as the left and right halves of the brain.
Alobar holoprosencephaly is considered to be the most severe form of the disease, in which the separation between the two halves, or hemispheres, completely fails to develop. This was Lily's diagnosis.
Semilobar holoprosencephaly represents holoprosencephaly of the moderate type, where some separation between the hemispheres has occurred.
Lobar holoprosencephaly represents the least severe type of holoprosencephaly in which the hemispheres are almost, but not completely, divided.
Prognosis:
Most severely affected patients die at birth or in the first 6 months of life. Survival, with variable mental retardation, occurs in mild cases. Holoprosencephaly is highly lethal during fetal life. It is estimated that only 3% survive long enough to be considered a live birth.
For more information about holoprosencephaly visit www.sonoworld.com/fetus/page.aspx?id=115