6 Months

Six months is a long time. It is half of an entire year. It is longer than I was even pregnant with Lily, but not long enough to forget any bit of it.

Duran and I recently went to a memorial service that our hospital coordinates every year in December to remember the babies who have gone before us. It was an overwhelming experience for me. I'm not sure what I expected it to be like, but I was surprised at the number of families who all joined together in a quaint little church to light candles for their babies. Although we didn't know the majority of the people there, it was somewhat comforting to be in a room full of people who have also experienced the grief and sorrow associated with saying goodbye to a baby before their life has even begun. We chose to light a candle for our Lily, which felt really good to have a solid and tangible reminder that she was here just six months ago and that she had life.

Obviously, we don't want to only remember Lily at Christmastime, but this annual service was a great opportunity to carve out a special time in the midst of this busy season to stop and think about only her. No distractions. No thoughts of shopping, wrapping, decorating, baking, etc. In fact, it is during the busiest times that I want to think about her the most. I want to push pause on the lists and the plans, and remember my daughter because that brings me peace. You see, it doesn't always make me sad to think about her. Most of the time, I feel joy and peace. I feel whole. So, six months after kissing my daughter goodbye, I've realized that not only has she taught me what is most important in life, but she really is my angel. I have reiterated a number times that her life had purpose, and the more time goes on, the more defined this becomes. One definition in my dictionary for the word angel is "a guardian spirit or guiding influence". She keeps me grounded and focused. She gives me direction and purpose. She has been the "influence" I never knew I needed.

Deja-Vu....but much much better!!!

We made yet another trip to Annapolis yesterday. We went there to meet with Melissa, our genetic counselor, and Dr. Sweeney, the doctor who diagnosed Lily. This trip served a different purpose than the original trip, but in some ways felt the same. I didn't surround myself with tear filled tissues in the car on the way there this time. I intentionally tried to create a calm environment and I chose to spend the drive time reading my bible and talking to my husband without distractions (which doesn't happen real often). As we got closer and closer to our destination, I could feel knots in my stomach as my anxiety increased. I tried to calm myself down as best I could, and I walked into that office feeling an overwhelming sense of deja-vu. I reminded myself that we were there for a different reason this time, and that hopefully this visit would not result in devastating news.

A couple of months ago, we learned that Lily is a big sister! This was actually quite a surprise to us, and yet, another reminder that God is always in control. He knew that the time was right for us to have this experience, and I have tried to embrace His plan wholeheartedly. We obviously want for our family to grow and we have been beyond thrilled, but also, terrified. I've never experienced such mixed feelings as I have over the last couple of months. I had never felt this kind of worry and anxiety with my last two pregnancies. I was blissfully ignorant to the possibilities in the past. I wish I could feel that way again. Naturally, we couldn't wait to see Dr. Sweeney again to, hopefully, get some reassurance that all is well so that I could calm down.

The 40 minute wait to be seen felt like an eternity, and I couldn't help but notice a sign in the lobby that apologized for the long wait and explained that the providers in this particular office are often delivering news that their patients may need extra time to digest. I was brought back to our experience receiving news like this the last time we were here, and I definitely appreciated being given what felt like all the time in the world with our doctor, so I guess I could respect the wait time. I didn't really have a choice anyway.

We finally met with Melissa, then Dr. Sweeney. I can't say enough great things about each of them. They have both been so wonderful with us, and always very respectful, patient, and thorough. This experience was no different. Dr. Sweeney spent a great deal of time with us, and was very careful to share every detail that he could at this point. He assured us that everything looks "perfect", which instantly brought tears to eyes. I can't seem to make a trip to Annapolis without crying, but this time, I cried tears of relief, not despair.

Dr. Sweney told us that he always feels worried and nervous about "appointments like this" after the "disaster" we had last time, but that he was extrememly pleased with what he saw. This is the first time I have disagreed with him. I do not believe that our last pregnancy was a disaster. I prefer to think of it as a blessing, although I recognize that it was anything but perfect, medically speaking. Either way, I appreciate all that he has done for us and all that he promises to do this time. It looks like we will be making a trip to Annapolis every month to continue to monitor the baby.

I certainly don't want to spend too much time using Lily's blog to talk about this pregnancy, but it really has made me think even more about her and my pregnancy with her. This baby will never take her place. Whatever transpires over the next six months is outside of my control, and in the hands of the One I trust and rely on most. I will continue to seek peace and comfort on a daily basis because I know that is what He wants for me.

I was reminded of this bible verse last Sunday in church and used it to ease my mind in the car yesterday.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:6

This will be my mantra.

It's the holiday season

The transition from Thanksgiving to Christmas seemed to happen at super speed this year!! I'm still spending my days focusing on all that I have to be grateful for as the world around me shifts their focus from gratitude to santa and their own personal Christmas wishes. Now, don't get the wrong idea. It's not that I'm not in the holiday spirit, but I find that each year brings me closer and closer to the real meaning of Christmas, which naturally draws me further away from the commercialized interpretation of the season.

So, before I get too far off of my original intention for the entry, I'd like to take a moment to review all that I have to be thankful for this year, which, I'd like to point out, are definitely not listed in order of importance.

* being able to spend another year with our precious son
* the overwhelming joy of a second pregnancy
* the excitement of feeling like our hopes & dreams were coming true
* meeting our daughter
* re-establishing my purpose in life
* recognizing new ways that I can reach out & help others through my experience
* a brand new emphasis on my faith
* learning the real meaning of peace
* developing humility in the face of tragedy
* a constant reminder of God's ability to heal and comfort
* learning to accept the things I cannot change
* being able to share my story
* having hope for the future

I am in a place now where I can recognize that it is possible to move forward after a tragedy. It is possible to have hope and positivity again. I am thankful for that this year.

STAR group

Tonight will be the first STAR group meeting! I couldn't be happier that the hospital has been able to accomodate the start of this group again after taking a little break from it. I am hopeful that those who choose to come tonight will feel supported and understood. And, of course, I am looking forward to a good excuse to talk about my little angel. Naturally, I'll post an update to debrief about my experience a little later.

5 Months

This has been a challenging month for me to get through, and now that my due date has finally passed, the emptiness and uncomfortable anticipation (for lack of a better word) that I was hoping to overcome, has not gone away. I kept telling myself that if I could get over this hurdle, I may feel some sense of relief or even accomplishment that I've made it. Maybe I feel like that just a little, but "relief" is definitely not the word I would use to describe this feeling. It's consistent emptiness, sorrow and even isolation at times. I really kind of thought that might go away, and it's kind of frustrating that it hasn't. In fact that is why this post took a little longer than I would have liked. I kept procrastinating writing another depressing post.

This process can be very isolating. I mean, who really wants to hear about my grief over and over again, unless they are choosing to read this blog, of course. Here, I feel safe to release any and all of my not so pleasant feelings without worrying about judgement. If you are choosing to read this, then you should be well aware that I won't sugar coat it. I try to express my true feelings, as uncomfortable as some of them are, in an effort to get it out and leave it here. It allows me to go about my life without dwelling too much on the negative stuff.

Outside of this blog, however, I'm very sensitive to thinking that other people may expect that I've moved on, and as long as no one mentions the fact that Lily would have been here by now, I'm okay. But, in reality, all it takes is for someone to acknowledge that my baby is not here, and I momentarily melt into a puddle of sadness. I guess that is to be expected. At least, I'll tell myself that for now.

As I move forward this month though, since it is November, I will try to express my thankfulness and gratitude for the life that was created. Although very short, Lily's life was full of meaning and purpose, and I firmly believe, a necessary part of my life. This month, hopefully, will allow for a little more positivity as I focus on these thoughts.

Letter to my Lily

My little Lily bug,

I began fantasizing about having you in our lives beginning in February, nine long months ago. My dearest Lily, we know now that God had a different plan for you. He chose to bless you by welcoming you into His kingdom immediately. He blessed us by allowing us to see you and hold you much sooner than we thought was possible.

I think that you know how much Mommy and Daddy miss you and think about you. I think you know how much I wish you could be here to be with us, but I want you to know that we will see you again. When our Father decides that it is the right time for us to meet again, we will run to you with open arms. Until that day comes, we have decided to think about all of the positive things that remind us of you to keep your memory alive in our hearts.

There is a very special spot at the park where Daddy and I sat one night before you were born. We went there to spend time with you and with each other without distractions. We talked a lot and cried some too. Our hearts were heavy with pain and sorrow. I like to think of this as "our spot" because it is one of the last places we got to take you. Maybe you remember that night too. I have visited that spot a couple of times in the last few months just to feel closer to you. We actually took your brother there not too long ago. Of course he doesn't know that it is your special spot (we'll keep that our secret), but he seemed to enjoy it there too.

We also went to the beach one day during your last week in my belly. We went with Aunt Tracy and Gran. I'm so glad you got to have one last relaxing day listening to the sound of the waves. The beach always makes me feel calm and at peace. I was hoping you might feel some sense of peace while we were there too.

Even though our last days together were not what I want you to remember about me, I know that you are aware of how far I've come since you left my arms. I've talked a lot about you. I love to tell others about you and what you have done for us. Your life really has given me strength, faith and hope.

Daddy and I have thought of lots of ways for us to remember you and honor you because you are so special to us and we love to think about you. You were still in Mommy's belly when we found our new house, and we spent lots of time walking around the yard because we loved it so much! Daddy planted a couple of trees for you, and he has plans to make a garden at home just for you. He's already cleared the space, and next spring, close to the time that we saw you for the first time, he will fill that space with the most beautiful flowers and plants we can find. I love that we can use our yard to remember you because I will always remember that you were with us when we fell in love with it initially.

Even though we have these experiences that allow us to feel closer to you, we still miss your presence terribly. I have been feeling that more and more recently since this is the time that you would have been home with us. We hoped and prayed that you would be in our arms and with our family right now. We looked forward to having you with us for Thanksgiving and Christmas this year. We will miss you so very much. I have a million reasons to think about you throughout the year, no matter what the holiday or month or occasion. Lily, you are so special to me, and always will be.

Sweetheart, you are in my heart everyday, and the physcial distance between us doesn't make me think about you or love you any less. In fact, I can't imagine how I would have loved you any more than I do now. I remind myself everyday how blessed I am to be your mother and to have had the time with you that I did. I will always remember that, Lily. You will always be my little girl.

I love and miss you lots baby girl,

Mommy

Remembrance Day

It's the milestone I've been dreading the most. The month of my due date. I would have been 38 weeks pregnant this week, and anxiously anticipating my baby girl's arrival. I recently learned that October also happens to be National Pregnancy and Infant Loss Awareness month. October 15, to be exact, is "Infant Loss Remembrance Day", the day set aside to specifically remember those infants who did not have the opportunity to experience life. I came across this video and wanted to share it in memory of all infants whose lives were too short. Will you join me this Friday by lighting a candle at 7:00 pm in memory of my Lily?

4 Months

4 months ago, October seemed like a lifetime away, yet here we are wearing sweaters and picking pumpkins already. I was sort of dreading the fall this year, and trying to hold on to the idea of summer as long as possible. Summer is the season that I will associate with Lily, and I hate to leave it behind just as I hated to leave her behind when I left the hospital that day in June.

However, with fall upon us, I am pleased to say that this new season has brought some unexpected positive experiences for me. Duran and I went to Annapolis last week and we had the opportunity to meet an amazing couple who have faced a journey similar to ours. They seemed to understand and relate to our pain and our grief. While it was an emotionally draining afternoon and evening for us, I felt refreshed the next day. I felt like a weight had been lifted off my shoulders. I appreciated the opportunity to talk about Lily to someone who may actually "get it". This experience has made me even more excited about the support group here. My hope is that this group will provide that same opportunity for others who need validation, support, and understanding.

In the last 4 months, we have raised $665.00 for the Trisomy 18 Foundation! I feel so incredibly blessed and honored to have such wonderful friends and family! Each donation has been incredibly heart warming. We appreciate every one of you who have given in Lily's memory. If you are interested in making a donation, please visit http://www.trisomy18.org/goto/LilyGraceHolder. The potential benefits of making a donation are endless. This foundation has offered us education, answers, support, and most importantly, hope.

In the last month, I also began two different bible studies. This is a huge committment, and I was not initially planning to do both, but it has worked out this way, and I have to say that these experiences have already brought me tremendous healing. Speding time doing something meaningful and uplifting has provided me with the comfort and understanding that I need.

I will move forward this month eagerly awaiting the arrival of the newborns who were growing and developing while my Lily was growing in my womb. Certainly, the upcoming births that I have been trying to emotionally prepare for will remind me of what could have been for my baby girl. My nephew, who happens to be due on the exact day that Lily was due to arrive, will be a fabulous reminder to me of the life that I also created. His existence will make it easy for me to always remember my angel, and I can't wait to meet him!

I do believe that my little girl has been watching over me and our whole family, and she wants us all to be at peace and to be happy. I don't want her to know me as a greiving mother. I want her to know me as the person that I long to be- an enthusiastic, energetic, compassionate, positive, giving, caring mother, wife, daughter, sister, and friend. I want her to see me overflowing with joy and passion during my time in this world. I know all too well now that our time in this world can easily be cut short, and I hope to make the most out of mine. Lily probably knows better than I do what is in store for me, and while I am eagerly waiting to see what is next, I believe she is looking down on me smiling because she already knows.

Annapolis Bound

Duran and I are headed to Annapolis tomorrow afternoon to be part of a group designed for parents who have had a high risk pregnancy due to chromosome or genetic abnormalities. We are both looking forward to having the opportunity to see our genetic counselor again, and to be able to talk to other parents who have shared our pain. We're excited to have a forum to talk about our daughter and our experience.
Although I have many positive associations with Annapolis in general, it is the place that we learned about Lily's diagnoses for the first time, and the place we are now traveling to talk about how this experience has forever changed us. Now, I may always associate Annapolis with my sweet baby girl. I'm hopeful that tomorrow will be a good day. I'll let you know how it goes.

Your grief will turn to joy

I tell you the truth, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy. John 16:20

I'm thrilled to report that there has been some progress with my brainstorming so far, and I thought I'd share some updates.

Two of my co-workers were inspired to use their talents and to share their awesome ideas for things that can be made and given to other families through our local hospital. My co-worker, Mary, and her friend Wendy, used beads to make jewelry, and I was fortunate enough to benefit from their idea! They made me a bracelet and a ring, and I love them both!


Karen has been busy knitting items that can be donated to the hospital for other babies. I have always thought about learning to knit, and I am especially excited now that my interest could have a purpose. Karen has graciously offered to teach me her talent. This is really exciting for me because I love to do crafty things, and even more than that, I love the idea of making things that others can benefit from!

I met with Gail last week from the STAR program at the hospital to discuss getting the support group up and running again. I am super excited about this! The first support group meeting will be held Wednesday November 17 at 7:00. The group will be open to anyone who has lost a baby through miscarriage, during pregnancy, or following delivery/birth. The group will meet once a month on the third Wednesday of the month. If you are interested in being a part of this group, please don't hesitate to contact me for more information.

I have spoken with a representative from the local March of Dimes office, and we have been discussing ways for us to use our experience to educate others about Trisomy 18 and holoprosencepahly. Even the person I have been talking with admitted that she had to research Trisomy 18 after speaking with me the first time because she was not familiar with it either. There may be opportunities for us to share our story at future events and fundraisers for the March of Dimes to raise awareness.

We are continuing to brainstorm ways for fundraising for the Trisomy 18 Foundation. I have spoken with the March of Dimes as well as the Trisomy 18 Foundation, and both organizations are on board with offering support. I have also received lots of support from family and friends about this. Thanks to my sister-in-law, Beth, we are seriously considering moving forward with planning a carnival and family friendly run/walk. Obviously, we are still very much in the beginning stages of planning and things could change. Our tentative idea is for this event to take place around the anniversary of Lily's delivery to be held in her memory. Funds raised will go toward the Trisomy 18 Foundation to help with research, support, and awareness. I'll definitely continue to report any developments with this as things progress.

I'm feeling optimistic as some of my initial ideas have been transformed into reality. It is definitely exciting for me to be a part of something that feels so much bigger than just me and my family. It's about the community and the many other babies, mothers, fathers, grandparents, and family members who have experienced a similarly life changing circumstance. Thank you to those of you who shared your thoughts and ideas. You all encouraged me and gave me hope!

3 Months

I'd love to be able to say that three months after I kissed my angel goodbye I am now standing strong and moving on, but the truth is that I am still very weak. Depending on the day, or even on the moment, I am fragile. I realize now that those "good days" that I've mentioned are only part of the bigger picture which is still ridden with grief.

I realized this more than ever just the other day. Due to my health insurance plan, I had to schedule an appointment with my primary doctor to get a referral for a specialist. I had not seen my primary in nearly 3 years because they were not able to see me during my pregnancies, and apparently, I was pretty healthy during the year between Owen's birth and my second pregnancy, and did not need to go in. I was prepared to see the nurse practitioner for a quick visit, get my referral, and go about my day. Before I could even talk about what I needed the referral for, the nurse asked how things have been in the last 3 years, and if I had children. Ugh. Do I just tell her about my son or does she need to know about Lily too? Well, I thought, they are my doctors and should probably know everything. I was not prepared to discuss this. I took a deep breath, and began to tell her about the birth of my son and the death of my daughter. She immediately spun around on her stool, abruptly stopped writing in my chart, and looked at me with very sincere and empathetic eyes. She talked about her years of experience as a labor and delivery nurse, and her knowledge and first hand experience with babies diagnosed with Trisomy. She repeated the information that we have been told by other health care professionals, and she offered encouragement and comfort.

It's funny, though, because I have had days when I felt strong and empowered and I yearned to tell my story, but this day felt different. I felt overcome with grief in that office and I cried as I talked to this stranger about my baby girl. Although, I assume she has not had personal experience with this issue, she has had professional experience working with other women and families who have. It was as if she could understand where I had been like others really can't.

Being in that office brought some of those feelings back for me that I had when I had my post delivery follow up. It was the feeling of being in a very cold and sterile medical examination room talking to someone who is attempting to bring warmth and compassion to the uncomfortable environment as we discussed my daughter's illness. She talked with me for about an hour, and only spent about 5 minutes talking about the actual reason for my visit, which was completely unrelated to Lily. It felt good to talk about Lily again, but it also stirred up all of those feelings of grief that I've been managing to tuck away day after day.

So, when people ask me if I am doing "better", I'm not always sure how to answer. I usually muster up a smile, nod politely, answer "yes", and thank them for inquiring, but I find myself wondering what it would really mean to "feel better". Of course I have days that don't seem so gloomy, and those days I guess I could classify as "better", but today, three months later, I feel about the same as I did just 1 or 2 months ago. It's not that I sit around feeling sorry for myself or that I mope or cry all the time. In fact, it's quite the opposite. I put on a smile and engage in family activities or whatever the day brings and I enjoy things just as I did before, but inside, I question if our family will ever feel whole again with one of us not here. I wonder if this feeling will ever go away, and if it does, would that mean that I felt better?

While I feel somewhat defeated to not be able to demonstrate a positive progression of grief, this is my reality for now, and I believe that this is a normal part of the cycle. Grief is the ups and downs and the unpredictable moments that hit you when you least expect it. I am still as hopeful as ever, but I am also trying to be more realistic. I know that I need to be easy on myself, and eliminate the idea that my grief should have a timeframe. It can't be compared to anyone else's; it is just as unique as I am and as Lily was.

A picture says 1000 words

My adorable 4 year old niece, Caroline, recently made this for me. She seemed so excited to present it to me, and as I told her how beautiful it was and how much I loved it, I realized that the portrait she made of me was crying. I don't really recall crying in front of her, but it is possible that I did because several weeks of my life are now kind of a blur. Once she left the room, I curiously asked my sister if she knew why she chose to draw tears on my portrait. She had also noticed this and when she asked Caroline about it, she simply replied it was because of the baby. Wow. Even a 4 year old is perceptive enough to understand how much of an impact Lily has made.

Lily is so lucky to have such loving and thoughtful cousins! This is definitely going in Lily's box of memories. Thank you sweet Caroline- I love you lots!!

feeling sorry for myself

It's another bad day today. I really miss my baby. I guess it comes in waves.

I was super excited yesterday after I talked to several people about some of my fundraising ideas, but then I got home for the day and was going through the mail.

Another medical bill.

Really?!?? I do not remember getting all these bills when Owen was born, and at least I got to bring him home. Why does the price of my loss keep adding up? This is getting ridiculous. We've already paid more than $700 for pre delivery procedures, and now we have $700 in medical bills from the delivery. I am still expecting to receive a couple more based on the paperwork I've gotten in the mail. I would pay any price to have my baby with me, but I am tired of paying for my grief. Opening that bill was the millionth reminder that my baby is gone.

Haven't I paid the price already?

Some Mothers Get Babies With Something More
16 Aug

Written by: Lori BorgmanColumnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes.Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes, satin skin and straight feet.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome, a palette that didn’t close or a tiny crooked foot or two.Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news.It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw — rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Every body will bear something at come time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

should've, would've, could've

It's one of those days...just when I think I'm doing pretty well...

I looked at my calendar today and realized

I should've been 30 weeks pregnant today. I would've felt my baby's kicks. I could've been decorating her nursery and buying cute pink clothes.

Instead, I am thinking of ways to make money that can be donated to help families whose babies won't live. I love that this is my new passion, but I hate that this is the reason.

Tomorrow will be a better day. It has to be.

Healing my heart with hope to help others

This post took a little longer than I had planned. I want to thank everyone who has been reading, and waiting for this next post. I took a little detour to Sesame Place with my toddler, and we got side tracked by all kinds of furry characters, but we are back and I'm ready to get some things rolling!

I've mentioned that I want to give back to the community, and I hope I'm not biting off more than I can chew, but my excitement is causing me to want to give in so many different directions, so this is where I need some help. I'll talk about all of the different ideas that I have, and I really want your thoughts and feedback. I am very much in the beginning stages of brainstorming, so these are just some general thoughts. I really would appreciate any ideas.

First, I want to continue to help the Trisomy 18 Foundation. It is my understanding that Trisomy 18 is the condition that caused Lily's other abnormalities (specifically holoprosencephaly and the kidney defects). Following Lily's death, we have received multiple donations in her honor to the trisomy foundation. I would love to continue to collect money for this cause. Lily has a legacy page set up on their website so that we can keep track of all donations made in her memory. This money will allow for further research to be done as well as for assistance and support to be offered to the families of other children with this diagnosis. It will also allow for awareness and education on this diagnosis. Like many others, I was not even aware of what this diagnosis was or what it meant for our daughter and our family. So, I am brainstorming ideas for fundraisers that will help us to raise money that can be given to this foundation in Lily's honor. Now, I don't want to do the typical fundraisers...no bake sales, yard sales, car washes, or dinners. I want to do something a little more creative. I am a little bit of a crafty person, so making something to sell could be an option. I read about another mom who makes hair bows and sells them for $5 to raise money for her organization called Lacey's Love. Lacey is her daughter, who is diagnosed with holoprosencephaly (HPE). Her mom is raising money to help other children with special needs to be able to get treatment, therapy and equipment. I love the idea of selling something hand made to raise funds for such a heart warming cause!

In addition to raising funds for the Trisomy Foundation, I also want to give back to my local hospital, specifically to the STAR (special treasures are remembered) program. This is the program set up to work with families when a baby has passed away. A significant part of this program operates off of donations. I received many items while I was in the hospital that were provided by donation. Lily's baptism gown and her blanket and hat were all lovingly hand made and donated to the hospital. We also received a stuffed teddy bear given by another family who lost their precious baby. I would love to contribute something to the hospital that they could give to other families in their time of loss to bring some sense of comfort. These items are the only tangible reminders that I have of my time with my baby, and they do bring me peace. I am slightly embarrased to admit that I have slept with Lily's hand knit blanket nearly evey night since I said goodbye to her. That blanket was wrapped around my baby when I held her. She had pictures taken in that blanket. When I see it, I remember her tiny little body peacefully resting in the midst of the soft yarn. I like to hold it close, and sleep with it near my heart. It is the most comfort that I can get without my baby to snuggle with. My point in sharing this is to reiterate that there are ways to offer solace to those grieving without having to say a word. People probably have no idea the impact that these items can have. For me, I have put all of Lily's memories in a container. It isn't much...my pregnancy journal full of my thoughts and feelings both during the time that we thought everything was okay and during the time that we were unsure about Lily's future, sonogram pictures, articles and information on holoprosenchephaly and trisomy 18, tons of cards, hospital stuff, Lily's certificates of baptism and cremation, copies of her obituary, and our treasured pictures of our baby girl. Sometimes, I look at this container and think about how weird it is that her life is summed up by the content kept inside. When I start to think about how unfair that is, I tell myself that considering how brief her time here was, she has a lot to show for those 19 weeks. It is for this reason that I want to come up with some ideas for something I may be able to offer to others. I'd like to think of something that the hospital can give to other families just as I received things given to me. One of my regrets from this experience is not getting more pictures of my child. I realize this may seem odd to some of you that I would want pictures of my deceased baby, and to be honest, I never anticipated that I would have wanted them either, but at this point, it is the only way for me to remember my own daughter's face. I have learned a lot and done a lot of research on grieving the loss of an infant and it is actually quite common to have photos taken of your child. In fact there is a professional organization designed just for this purpose. Unfortunately, we do not have such an organization in this area, but I do wish that I had the opportunity to have professional photos taken. Keep this in mind as you help me to brainstorm areas for giving...

Finally, many of you reading this are aware that I am a licensed clinical social worker, and I am trained to provide therapy to individuals, families and groups. It has been both a blessing and a curse to me that I have several therapist friends. It was great to return to work surrounded by other therapists, but at the same time, I certainly did not want to be a burden on my friends by using them for counseling. The hospital offered a support group in the past, but it is no longer running. At some point, I would love to expand my practice to include working with other mothers who have lost a baby. I realize that I am not emotionally in a place to be the most effective therapist for someone else in this situation, but I look forward to that time in the future. I am also very interested in facilitating a support group. I may talk with the hospital about coordinating something with the STAR program to bring this service back to the community. If any of you have any ideas about this please let me know. I know some people who were part of this group at the hospital in the past, and I would love to talk to you more to get some ideas. Also, if any of you have experienced this kind of loss and have some thoughts on being part of a group like this, please feel free to email me. I'd love to hear from you!

So, I am looking for any and all ideas for ways to raise money for the Trisomy foundation, an item that I could offer for the hospital to distribute as needed, and ideas for getting a group started. If you have any thoughts on any of these areas, please, please please comment!! I will keep you all updated on my plans and progress.

Thou hast enlarged me when I was in distress. (Psalm 4:1 KJV)

2 Months

Two months have gone by since I said goodbye to my Lily. It's amazing how much has changed for me during this time. I have felt myself move through the stages of grief, and am proud to say that I am hopeful (at least today). I am hopeful that Lily's existence served a purpose. She has taught me more about myself, my purpose, and the things that really matter. She gave me a new perspective and a new appreciation for life. I believe she accomplished more in her brief time here than I have in my 32 years. She changed my life. She gave me a gift that I will always be grateful for.

I am determined to share my story with others, and to tell others about my daughter because she deserves to be known. I want to recognize her for all that she has done for me and for my family.

My sister-in-law brought us a book of daily devotionals, and this is an excerpt from the devotional for today, August 6. "Sometimes God causes severe winds of trial to blow upon His children to develop their gifts. Just as a torch burns more brightly when waved back and forth, and just as a juniper plant smells sweetest when thrown into the flames, so the richest qualities of a Christian often arise under the strong winds of suffering and adversity. Bruised hearts often emit the fragrance that God loves to smell." How fitting!

I am empowered to move forward and to help someone else. I've been doing a lot of thinking lately, and I am ready to use my experience to make a difference for someone else, but I could use some help. I'll post another blog entry explaining my thoughts, and asking for some feedback, so get your thinking caps on....I've got big plans!

Fear

Sometimes I feel like I'm living my life fearing the future, and barely getting through the present. I think about all of the uncomfortable things that have yet to happen, and I dread how I will ever survive them. I've been doing this ever since we found out that Lily was sick.When we found out about Lily's diagnosis, I feared having to share the news with our family and friends. I didn't want to answer the same questions over and over. The same questions whose answers I didn't completely understand at the time. I feared leaving my house because I didn't want to run into someone who didn't know that our baby was sick. I couldn't pretend that I was okay when I was already grieving the loss of a life that I created. I didn't want to hear strangers make comments to me about my baby bump because all I could think about was the fact that my baby was dying. No one expects to hear that when they ask when your baby is due or what you're having. I feared returning to work because I couldn't stand the thought of people talking to me about my pregnancy or my baby. I feared crying in my office by myself, or worse, in front of my clients who had come to me for help. How could I help someone else when I couldn't even help my own baby? I feared going back to church in those initial weeks following Lily's death because I knew I would break down, and I couln't bear the thought of strangers looking at me with pity, not knowing why I was so sad. I still sometimes fear going out because there seem to be pregnant women, infants, and the most adorable little girls everywhere, and they all make me think about Lily, and the life I wish she could have. I fear the end of the summer and the beginning of fall when I would have been reaching the end of my pregnancy. I fear my due date arriving. I even fear Christmas this year. As soon as we found out I was pregnant, we talked about the fact that last Christmas was the last one that Owen would have without a sibling to share the joy. I already fear Memorial Day weekend as I will probably always relate it to the time we learned that our baby would not live. Of course, I also think about June 6, which will always be the anniversary of Lily's death, the first and last time I ever saw my baby girl.I realize that I am preparing myself for the worst, and probably spending way too much time predicting what hasn't even happened yet. I know that I should be thinking more about today, and taking it one day at a time, but somehow I get through each day by dreading the things that haven't happened yet. Then, when the time comes, it actually doesn't seem that bad. I am surprised at how far I think I have come already.Going back to work wasn't as bad as I had predicted it might be. Going back to church was actually the best thing I could have done. Maybe October won't be that bad either. I will get to meet my new nephew, and that will be wonderful! I will keep myself busy in December, and we will somehow make Lily a part of our new holiday traditions. I'm hopeful that we will continue to look for ways to keep Lily's memory alive, and to offer something to the community and other families facing the loss of a precious life. This will keep me going day after day, and eventually, maybe, I won't have anything to fear.

Lily

It is with such a heavy heart that I write this blog entry. I've been wanting to write about Lily's name, and I think this is the best time to do it.

Lily was a name that we have liked ever since we started talking about having children, and really, even before that. When I was a little girl, I had a stuffed animal that I had named Lily- a soft, comfy white teddy bear. When I was pregnant with Owen, if he had been a girl, Lily was the name we had chosen. When we began talking about names this time around, I realized that Lily was becoming a popular name.

After Owen was born, a couple who attended our church named their baby girl Lily. She was diagnosed with spina bifida, and I was amazed at her family's strength and faith as they faced the reality of having a baby with a medical condition and probable physical limitations. I had the privilege of being a part of their church family, and hearing them talk about their baby girl, and their hopes and dreams for her. I remember wondering if we would ever have a Lily of our own someday.

More recently, one of my co-workers, who was pregnant and due four months before me, planned to name her baby Lilyanna. I remember telling her how much I had always liked that name.

When we found out we were having a girl, we took that name off of our list because we wanted to select a name that could be unique to our baby. We came up with two other names that we both really liked. When we learned about Lily's diagnosis, everything seemed to change, even her name. The other names that we chose reminded me of pony tails, hair bows, lipgloss, and a little girl who would melt your heart with her smile. When we learned that we would never have the opportunity to experience life with our daughter, we knew immediately that she was the Lily that has always been in my life and in our hearts. She was unique and special. Naming her Lily didn't make her any less unique than anyone else. We no longer had to worry about her sharing her name with other little girls in her class, or anywhere else she may be. It was okay for her to share her name with other Lilys in heaven.....which brings me to the hardest part of this entry.

Earlier this week, my co-worker's baby girl, Lilyanna, passed away. Her Lily was just three weeks old, and was beautiful and healthy. My heart goes out to her, and I think about how much harder her loss must be compared to mine.

I was given a diagnosis (actually 2), and lots of information and articles about Lily's conditions. I have had the support of the medical professionals who diagnosed and delivered her. We knew that our Lily was not going to live before she ever left my body. We were educated about her diagnosis and her prognosis. That certainly didn't make it easy, but we began grieving before she was even gone. It was a terminal illness that allowed us to begin preparing for the loss even before it happened.

Lilyanna's family may not have the opportunity to get these kind of answers that are so helpful in understanding and healing. She was delievered at full-term with no known medical problems. She was joyfully welcomed into the world by her family and friends, who never suspected that this would happen. This is a kind of loss that I cannot imagine. I cannot pretend to know what her family is feeling. I only know how I feel without my Lily, and it is a feeling that I would not wish for anyone to have in common with me.

I'd like to think that my Lily is with Lilyanna, and that they are finding peace and comfort with each other. Obviously we would prefer for them to not have met this way, but I've realized that it's not such a bad thing for Lily to share her name with one of her newest friends.

It's all about perspective

Lily’s death has put a lot of things into perspective for me. I wrote earlier about my feelings of guilt as a result of insignificant complaints. I think about this a lot as I listen to other people complain about the miracles in their lives. Pregnant women may complain about being too hot, too big, too swollen, etc. I was one of these women during my pregnancy with Owen, and I recognize now that I failed to take enough time to talk about what a miracle it was that I was creating a life. I should have had an attitude of gratitude. My weight gain and water retention really could not be compared to my healthy, beautiful, perfect baby. In the end, we all say that the woes of pregnancy were well worth it, so why complain about it?
People complain about the struggles of parenthood too. I am one of them. My toddler, who is very much like me, has been a true test to my patience recently. He is very independent and he knows what he wants. Now, these are traits that could serve him well in the future; however, it proves challenging when we are trying to get him dressed to leave the house, and he doesn’t want to wear the shirt that I have picked out or the sandals that match. He’ll tell me “No sandals Mommy! “hip fops”!” (flip flops). He may not want to brush his teeth at the exact moment that I would like him to, and I hear him firmly say “don't want teef” (I don't want to brush my teeth). While these moments can be frustrating, I have been reminding myself more and more lately that I am blessed to be his mother. God chose me to love him, to teach him, and to guide him. I used to feel like I was losing my patience in these moments, but now I feel like I lose my patience with those parents who lose their patience. Does that make sense? It is much easier for me now to recognize my blessings, and I wish that other parents could see how much of an honor it is to bring a child into the world and be given the gift of that child’s life to nurture and protect.
I will never have the opportunity to be Lily’s mother in that respect, but I do recognize the privilege that I was given while she was in my belly. I was her safety zone, and my body kept her protected as long as it could. This was truly an honor. I do not want to question why her time with me was so short, rather I want to celebrate the gift that I was given in that brief period of time that I held her close.
People comment to me that at least I have Owen to focus on, and while I acknowledge that he gives me more than enough to focus on right now, he does not replace Lily, nor do his toddler tantrums allow me to be distracted long enough to forget her. She will always have a very special place in my heart that can never be replaced.

From "with child" to "with grief"

I can only equate my grief with the worst kind of roller coaster ride. I actually love roller coasters, but I feel like I've been riding on one that is too jumpy or jerky, and with too many twists and turns, or maybe it's more like that feeling you get when you've gone on too many rides too close together after eating some really gross and greasy amusement park food. Okay, you get the point. It's bad. It's hard to keep up from day to day. I had a few really good days, then I had an awful day. One day last week was so bad that I couldn't even bring myself to compose words. I tried to write, but nothing came out. I found a website devoted to blogs written by those who have lost a baby. I read other women's blogs for hours that night. I cried most of the night, and stayed up way too late. I suffered the next day at work, and even shed tears that day in my office. (Thanks to one of my co-workers, I wasn't completely alone) This is really, really hard.

I know that this happens way too often, and that other women can relate to my story in some ways, but it is still amazing to me to read that another woman out there actually shares my exact thoughts and feelings. One particular blog entry really hit home. This mother lost her baby at 25 weeks. This is an excerpt from her blog:

"Sometimes its like I'm pregnant with your memory--I can no more put you down and walk away from you than when you were safe inside me. I can't feel your kicks in my belly anymore; now you kick in my heart. You're here but you're gone and you're never coming back."

It's crazy to me that I can feel so alone in this process, then read something like this that strikes so close to home. Is it possible that other people really know how this feels?

Although I feel much emptier now than I did when I was carrying Lily, in some ways I do feel "pregnant" with grief. My grief temporarily is defining me; it is all I can think about. Sometimes, it is all I want to talk about. Other women who have experienced grief like this can relate, but those who haven't may try to understand, but they really don't. I am seven weeks pregnant with grief. In a typical pregnancy, seven weeks is just the beginning. I fear that this is just the beginning for me too. No matter what I do, I cannot separate myself from it. I cannot decide to not carry this with me today; it is here to stay. At times, it is so uncomfortable that it causes me physical pain.

I can't seem to get my mind off of everything to do with little girls. Hair bows, summer dresses, tutus, tights, even those cute bathing suits with ruffles. I see little girls everywhere I go, and they are all so beautiful. Just seven weeks ago, I had dreams of brushing my daughter's hair, painting her nails pink, taking her to dance class,and teaching her how to use make-up. Now, I have dreams about how she felt in my arms on the one and only day that I was able to see her and hold her. I dream about her tiny hands and feet, and the peaceful expression on her face.

Usually things get easier after the first trimester. I hope that will hold true for this "pregnancy" as well.

Prayers

"I have unanswered prayers" is the first line in my newest favorite song, but it's really got me thinking. Have my prayers really been unanswered? Selfishly, of course, I wish I could have my baby girl still in my womb, and prepare to meet her in October; however, my prayers were for her to be healthy and safe. Although she is not going to be in my arms in October, she is in God's arms every day. I believe she is healthy and safe now. I guess that means that my prayers have been answered.

My prayers now are for myself, my husband, and my son. I pray that we continue to grieve the loss of our little girl in the healthiest ways possible. I pray that my husband and I continue to remember our daughter, and talk to each other about her and about our feelings. I pray that I do not let my grief override my role as a mother to my son or as a wife to my husband. I pray that I can use my experience in a positive way. I look forward to becoming more involved with organizations designed to educate and offer support to the community like the Trisomy 18 Foundation or the March of Dimes. I'm not usually one to ask others for favors, but I would like to ask anyone reading this if you would also pray for us as we continue to grieve. We might seem like we're okay, and you may even catch us smiling, but we are still hurting inside.

I pray also for anyone else who has just recently received a diagnosis as devastating as Lily's. I will continue to pray for the unborn children and their parents as they struggle to understand and cope with the idea that they have been given a terminal illness even before their life has begun. As rare as I understand that this is, I pray that those families will find strength in their support system, and that they will feel the comfort of prayers coming from a complete stranger. I know that this has certainly helped me.

1 Month

It's been one month since we lost our little girl.

I went back to work today for the first time since May 25. When I left work that day, I was so excited to have our sonogram the next morning. I thought that when I returned to work the next day, I would be able to share with everyone our baby's gender. I thought I would be making plans to go shopping since I had been holding out until we knew for sure if we would be buying pink or blue. I had no idea all that was about to happen. I didn't know that I would not return to work for six weeks. I didn't know that I would be delivering my baby, handing her off to someone else, and saying goodbye forever. I didn't know that I would be communicating with a funeral home or composing an obituary. I didn't know that I would come back a completely different person. My life changed forever during these last six weeks. I will never be the same, but I know that this was God's plan for me.

It probably wasn't the best idea to return to work on the one month anniversary of our baby's death. I knew I had to go back sometime, and that it would probably never be easy. It was a reminder of how things were when I was there last. I was happy. I had a baby bump, and was starting to wear maternity clothes. I had been told that I was glowing.

My "glow" is gone. I tried really hard to keep it together and not to cry. I expected it to be a rough day. Within fifteen minutes of being there, I weighed an envelope to be mailed, and was caught off guard when the scale read nearly 7 ounces. I immediately thought of Lily, who weighed just 7 ounces. As I carried the envelope out to the mailbox, I tried to remember feeling the weight of my baby girl in my arms. Although this experience took place within about two minutes, it stuck with me all day.

Several of my friends called me or sent me texts just to let me know that they were thinking of me. My husband sent me flowers. Many of my co-workers welcomed me back with hugs. Some didn't say anything. It was a reminder that I have to go on. Life goes on. Everyone else goes on with their day as if it is just another day. For me, each day that passes is another day without my baby, and one more day since I last saw her. I don't ever want her to be forgotten. I resent it when people don't say anything to me because they don't know what to say. Obviously, no one will ever say anything to make me feel better, but I appreciate those who acknowledge that my daughter existed. I don't want to pretend that this experience is done and over because she is gone. It's not "over" for me. I want her memory and her spirit to live on. I love those people in my life who have acknowledged that I need support and although none of them know what to say, I appreciate them even more for just saying that.

Maybe this next month will start to get just a little easier. A lot has changed for me during the past six weeks. I didn't talk to anyone other than my husband, sister, and parents for the first couple of weeks, and now I am publicly expressing my feelings for the world to read. Who knows what this next month holds for me? In the meantime, while everyone else is going through the motions of their everyday routine, I am embracing my grief, and putting myself in the vulnerable position of expressing every raw emotion as it hits me. I'm hopeful that this will help me, and maybe someone else too.

Fireworks and "The Silver Lining"

Thinking a lot about my little girl today. It's the 4th of July, and Duran's favorite holiday. It brings me joy to think that Lily will be watching beautiful fireworks all night from the best seat in the world!
Our genetic counselor told us that the "silver lining" for us is that Trisomy 18 does not tend to be hereditary. We have opted to have genetic testing to be sure that we are not carriers. I just found out the other day that my blood work has all come back normal, which means that all of my chromosomes are as they should be. This is really good news! This means that it was not my genetic makeup which caused Lily's abnormalities. Trisomy 18 usually is a random occurence, and now we are fairly certain that it was in this case as well (we'll know for sure once Duran gets his blood work done). Our doctor shared with us that a typical Trisomy 18 case most often occurs due to the mother's egg. However, Lily's case was not a typical Trisomy 18. Since she had Isochrome 18q, we may never know if it was the egg or the sperm that caused this problem. I'd rather not know anyway. What I do know is that if and when we choose to get pregnant again, our recurrence rate is no different than anyone else's chances of having a baby with a chromosomal abnormality, about 1%. At this point, this is the best news we can get!

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