Questions and Memories

I replayed Lucy's birth today in my mind. I do this quite often and as I do I ask myself many questions. Some are old questions I have asked myself many times, but others are new. Did she cry when they took her from me? No, but I heard her make a sound. The doctors took her across the room to look at her before they gave her to me. How long was she away from me? I don't know. The world was still yet my head was spinning. I would otherwise assume that I was holding my breath, but I think I remember asking aloud, "How is she? Is she alright?" over and over again. I remember Kathy, my midwife, inquiring of the doctors in a determined voice to get the answer I sought. I remember Kathy to the right side of my hospital bed, and my husband on the left side. I remember the waiting, and the feeling of my legs, numb - the desperation in knowing they would fail me if I tried to spring from the bed to run over to her. It felt like my heart left my body to be with Lucy.

Then they brought her to me, wrapped up in a blanket and said, "She's doing GREAT." I held her and cried. And laughed and smiled. I examined the cleft in her lip and dreamed of a future for her. I knew it wouldn't be easy but knew that she was special. I was determined to help her have the best life I knew to give her.

Sometimes I'm glad I didn't know at that point she had Trisomy 13 and that she'd only live for less than 6 days. Other times I feel so guilty I didn't know. In those moments of doubt and sadness I want to go back and find out during pregnancy so that I could have been more ready to... wait, ready for what exactly? To know she was going to die? I can't imagine how hard that would have been. It's interesting to me that I still deliberate on if I should have done the amnio to test for Trisomy prenatally. Could it have been better if I had known? The answer is always the same. To know or not know would have been tough. And the outcome is the same. She'd still be gone.

March was Trisomy Awareness month. I saw others write about it and talk about it. I feel like I lost my voice. I don't have the energy to write about it, but that doesn't mean that I don't think about what it means to have a daughter with Trisomy 13. March is always a hard month regardless because it's the month we found out that things with my 2nd pregnancy weren't "right." Three years have gone by and so much has changed for the better, yet I just know I'll always ache to hold my sweet Lucy and kiss her face.

There are so many questions and so many memories. I can't separate myself from all of it because my heart is eternally intertwined to my baby girl's. Yet the memories fade, so I will try and document them the best as I can as they come back.

Lucy's Light & The Butterfly Release

Back on July 24th, I spoke over the phone with a nurse at Levine Children's Hospital, and she asked if I would be interested in speaking at the Butterfly Release this year. The Butterfly Release is an annual event that the NICU holds to honor and remember the babies that have been lost. Ironically, the nurse that called, Cindy, was the person who had advised us to stay with Lucy at the hospital that very night exactly one year before. That Sunday night with Lucy was our last night with her, and we have been forever grateful to have those final minutes and hours by our little angel's side.

When talking with Cindy this past July, I felt deeply grateful and started thinking about how I might be able to give back to others. I imagined that speaking would be one way to do that and also honor Lucy's life. The event was still several month away, so I agreed and thought, "I'll figure out what I'll say later." 

I have written a lot about Lucy and my grief process on the blog or in my journal, but realized quickly that writing to speak was going to be VERY different. I could't even bring myself to write much of anything until just days before. Here is what I wrote (edited slightly for blog):

8th Annual Butterfly Release

October 13, 2012

Lucy's Light

in memory of Lucy Isadore White

I’m here today to share with you the story of our little angel, Lucy.

The story starts with my 2^nd pregnancy. At our 18 week ultrasound we were shocked to find out that our 2^nd child was going to be born with a major cosmetic flaw – a cleft lip. In the weeks that followed we learned of several other concerns the doctors had, more medically-focused, but none seemingly life-threatening, so we decided against genetic testing. Throughout the entire second half of my pregnancy though I was in a very dark place. We remained hopeful, but I was very, very scared. I want to share with you a prayer I wrote in my journal at about 30 weeks, give or take.

“Dear Lord,

I pray that you continue to unveil your plan and purpose in our lives. Please prepare us for what is to come. Help us to support one another and focus on our blessings. Let us remain faithful even when it feels like hope is failing us.

This child is yours, God, and I pray that you use [her] for your work. Should I have the opportunity, I promise to raise [her] teaching and sharing your word. Should I not have the opportunity, I pray that this baby feel our family’s unconditional love regardless of the time we get to spend together.

Please remind us of the miracles that are possible when we remain faithful. I will continue to follow if, Lord, you promise to show me the way. Amen”

It’s amazing looking back now on that handwritten prayer, knowing how terrified I was, yet hearing the hope in my words.

Two weeks before my due date I was induced to deliver our baby. Our little angel arrived on July 19^th, and she did amazing. She even fooled the doctors at first by being such a fighter she was sent to the regular nursery. However, Lucy’s health steadily declined and we learned on day three that Lucy would not be with us long. She had a life-threatening genetic disorder called Trisomy 13 that would claim her life. I finally knew for certain what I had had nightmares about for months. The odds of this disorder are one in 10,000 – looking at a statistic like that you just never think you could possibly be the “ONE.” Trisomy 13 is described as “incompatible with life,” yet it was so hard to believe when here was this little miracle living and breathing before our eyes.

Lucy’s name means “light.” She truly was radiant. She lit up a room like a little ray of hope, a reminder of God’s love.  We are blessed to say that we got 5 ½ days with our daughter. And in those days with Lucy, God showed us the true power of love. We were able to spend time as a family of 4 – to show both of our daughters what unconditional love was and is. It’s a love so strong and so impassioned that it truly knows no bounds. An unconditional and uninhibited love. A love like there is no tomorrow.

I came across this quote from Beth Moore: “True love is not at all blind. When we are vessels of agape, our spiritual eyes will be open like never before, because only true love can really see… right into the heart of God.”

I don’t know if that speaks to you, but it sure speaks to me. The very miracle of Lucy has opened my eyes, given me purpose and given me hope. Do I understand why I lost her? No. Do I wish she was here in my arms? Of course. Have I wished that she was born without the disorder that took her life? Absolutely. But I also know that without it, well, frankly, she wouldn’t be my Lucy. She wouldn’t be my little Lucy that had the strength to ignite an absolute love fest of Godly proportions.

I still think every day about how I want people to see Lucy’s light in me. Because Lucy’s light is truly one lit by the love of God. Amidst the fear, the cold, the darkness, confusion and deep agony, we learned to love like no other. I want to share that love and that hope with others. Before I ever knew what Lucy’s fate would be, during pregnancy with her, I had said that prayer. I had promised to continue to follow God if He promised to show me the way. While the way hasn’t always been 100% clear at times, the path is surely lit with His love.

This coming Monday, October 15^th is Infant Loss Remembrance Day. At 7 pm around the world people will be lighting candles in honor of their babies that have been lost – it will be a wave of light. We’ll be lighting our candle for Lucy, and I encourage you all to light a candle in honor of your sweet little one. As we remember our babies, may we also take a moment to consider how we can let their memory shine through us. We have a chance to give back, to love in uninhibited ways, and to walk with purpose. I always think of the song, “this little light of mine, I’m gonna let it shine.” 

I want to SHINE.

Thank you Lucy for being my daughter… you are a light in the darkness that will never go out. We love you so much. For living such a short little life here on this earth, you sure have an amazing purpose.

Your big sister Avery asked me if we could go on an airplane ride and come see you the other day. When I explained to her that it wasn’t that easy she thought for a minute and said, “How about a rocket ship?” Though we can’t take a plane or a rocket ship to heaven, we’ll send a butterfly into the sky in honor of you today.  I miss you so much and I can’t wait to see your face again one day.

Avery and her butterfly

Lucy's brick in the Our Children's Memorial Walkway

Me and Avery by Lucy's brick

More than a diagnosis

This past Sunday I reflected on where we were one year ago... that day might have been (officially?) the worst day of my life. After a stressful couple of days, we got Lucy's diagnosis of Trisomy 13 and very quickly learned that her condition was "not compatible with life" (even as she still lived and breathed before us). It slowly sank in that I could have lost her at any moment I was pregnant with her. I've said it before, and I'll say it again... I'm SO thankful God let me meet and know her. 

Sunday was a rough, rough day for me emotionally. I had prepared & braced myself for Lucy's birthday last week but I had not thought a lot about the diagnosis day. And it hurt. I just kept thinking "I'm so sorry, Lucy. I'm so sorry there was nothing I could do."

I found an article yesterday that I want to share. It is written by Dr. Keith Barrington, a Neonatal Doctor who has some advice for doctors & medical staff handling these kinds of Trisomy 13 or 18 diagnoses. We were so thankful to have the care that we did... a doctor who prayed with us and provided comfort, nurses who cared for our little girl and smiled genuine (yet pained) smiles when they saw us. Those people made it clear that our daughter mattered. Many families with trisomy children have NOT gotten this kind of care and love from the medical professionals they have encountered, and it's disturbing to me. They have even had people refer to their baby as a "T-13" baby and not use the baby's name. I'm thankful for Dr. Barrington (who wrote this article, "Our children are not a diagnosis") and I think he delivers sound advice to other Neonatal doctors and caretakers.

These Trisomy babies are absolute blessings to their families, and I am here to say that I wouldn't trade my "T-13" baby for any other baby in the whole wide world. The love that Lucy has taught us is helping us to impact others.

Yesterday was of course an emotional day, too. Exactly one year ago, Lucy went to be with Jesus. Yet, I think back and remember that it was a surprisingly peaceful moment in my life. Time stood completely still, and the world was perfectly quiet.

We held her, we bathed her, we made her foot imprints and snuggled her "one last time" before we left the hospital. I remember looking at her body and thinking, "She's not there anymore. She's somewhere better." I'll never forget walking out of the hospital the morning that Lucy died into the sticky July heat. I felt like the air was closing in around us, suffocating us. We drove home during morning traffic. I saw the people on their way to grab coffee, or heading into work and thought, "For these people it's just another day." For me, everything looked different. Everything felt significantly different. The day was sunny, muggy, sweaty and hot. I suppose I will never forget how it felt. I feel the intense heat sometimes, and that day comes back to me clearly.

There have been so many memories swirling around in my head lately and I've had a tough time expressing what I'm feeling. It seems like I have second- and third-guessed everything I have done. I know this is another piece of the grief process, and I'm just trying to heal like I need to. Thankful I have connected with other mothers who have been through this too, and I know it will continue to get easier.

Trisomy 13 Awareness Day

March 13th is Trisomy Awareness Day.

I just have to add this picture on this blog, because it is Avery's all-time favorite picture of her baby sister Lucy, and I can see why. I mean, look at it!

It was taken a little while after Lucy was born when they finally weighed her (they let me snuggle her LOTS before they got to that thankfully). I share Avery's love for this picture. Lucy is pink and looks as healthy as can be... a beautiful 5 lbs 10 oz blondie. She even shows a bit of her sassiness here - she was so strong and opinionated. For a while Avery thought she was laughing. (Now she says, " Mommy, I think she is cold and she needs a blanket.") She ALWAYS flips to this picture in the little Lucy photo album we have in our family room.

I want to point out that Avery asks a lot of questions about Lucy and the hospital. I have to say it's been tough answering questions from a curious two-year old, and at times I'm dumb-founded. J & I just roll with it as it comes. I don't remember if I've mentioned it before or not, but she seems to think that Jesus and Lucy kind of live at the hospital. It's confusing.

Avery sometimes will randomly ask things like "can Lucy come to dinner with us tonight?" or "how do I get to heaven?" It's really hard to know the "right" things to say at times.

One day when we drove near the hospital, she said (out-of-the-blue) "Mommy, you looked like a princess at the hospital." A princess? That was the furthest thing from what I felt, but I feel honored that that is how she saw me.

Avery still says "I miss Lucy" fairly often. I started being skeptical that she even really remembered anything. One day in the car she started telling me she was sad and that she missed Lucy I asked her, "Do you really remember Lucy?" I'll never forget her answer. She said back to me matter-of-factly, "I played music for Lucy at the hospital." I don't remember talking about that a lot - but she sure did have a stuffed lamb that played music for Lucy in the hospital. Another day she started talking about the hospital and told me "I ate snacks in the chair with the lady." She was remembering the nurse who gave her snacks, and sure enough she had climbed up into this big ol' chair and entertained one of the nurses. I was shocked... it was such a minor detail of that day we all four spent at the hospital, something you would never think she'd remember. But she does.

I just have to keep documenting all of this, because I don't know if her little brain has the capacity to keep these memories! Wow... this kid never ceases to amaze me! :)

I know much of this doesn't relate to Trisomy, but I guess it shows that even the littlest of lives can make a big impact.

Raising Awareness

Earlier this week I heard someone say "it's amazing the difference a year can make."

It really is QUITE amazing.

This week has been incredibly emotional for me. It was exactly a year ago today when we went into the ultrasound appointment that ROCKED OUR WORLD in a very scary way... we learned at that appointment that our baby would have a cleft lip, and you find out a little more about the days that followed HERE. It's crazy to think that a year and a day ago we were so clueless to what was about to happen and how our lives were about to be significantly changed.

I haven't been the same since that fateful appointment, and we didn't even know the full extent of her diagnosis until days after our daughter Lucy was born months later. I think in some weird way we honestly expected to go to the follow up appointment (which was 2 days after the first ultrasound) and have them tell us "oh, wait, we were wrong". But no, that did not happen... and this week last year was a nightmare - filled with fear, sadness and anger. We were in serious denial, and had so much fear for our baby and what this cleft meant. Do you know that just two days ago a women from my bible study told me she was born with a cleft? I mean, what are the odds... Seriously? I just "happen" to find this out this week? It was like God gave me a snapshot of what Lucy's life might had been like. This sweet woman expressed how tough her life has been in and out of surgeries and how she struggled with the notion of even having children because her chances of having a cleft baby were so high. I know Lucy's life would have still been tough even with "just the cleft." Really tough. But we would have had her to hold.

Now it has become important for me to raise awareness about Trisomy 13, and Trisomy in general. Honestly the more I have connected with other moms that have had Trisomy babies or babies with other genetic disorders, the more I realize that "1 in 10,000" is not as rare as you think!

Well, wouldn't you know...

March is Trisomy Awareness Month.

I can imagine that many mothers feel pressured to terminate pregnancy if they get a prenatal diagnosis that includes birth defects, especially when that diagnosis is "not compatible with life." Most probably don't even realize that there is a chance they will meet their child. Lucy's diagnosis was "not compatible with life"... but Lucy lived almost 6 days! I remember reading the description of her condition in words the night we received her diagnosis, when she was still living and breathing before us. She LIVED, yet those words told me she could not. I feel the need to speak out and protect babies like Lucy, and I have come to believe that "if you have a pulse, you have a purpose." Though I would not judge someone for their personal choice, it makes me so sad that some parents would say goodbye to a baby like Lucy before they even got the chance to meet him or her.

Meeting and losing Lucy was truly heartbreaking... but I am filled to the brim with joy to have known such a special little girl and be able to call her "mine."

Here are some facts about Trisomy 13 / Patau Syndrome:

- Trisomy 13 is a genetic disorder in which a person has a third copy of material from chromosome 13, instead of the usual two copies. (Trisomy 18 is similar, but it affects the 18th chromosome. Down syndrome is the most widely known Trisomy - which affects the 21st chromosome. Defects tend to be more severe the lower the number, from my understanding.)

- Approximately 80% of Trisomy 13 babies have a "full trisomy" where every single chromosome set is affected (this is what Lucy had).

- Approximately 60% of Trisomy 13 babies have a cleft lip and/or cleft palate (Lucy had both).

- Approximately 80% of these babies have a congenital heart defect (Lucy had a more "minor" heart issue, which was not seen prenatally. They said it was something that normally would not have affected her until much later in life).

Much of the above information and more can be found here.

The two websites below are ones I have found helpful both for the information/resources and for the stories of other families going through what we have:

www.trisomy.org

www.livingwithtrisomy13.org

Recently I was made aware that presidential-hopeful Rick Santorum and his wife have a Trisomy 18 baby, Isabella. I realize that when that news hit the general media, most people were hearing about this chromosomal disorder for the very first time. A year ago I would not have known the first thing about Trisomy. This video was posted on his blog, and definitely touched my heart. Here is an article the NY Times posted after a more recent health setback. What a special little girl she is! I am just inspired by someone so much in the public eye raising awareness.

Despite hearing inspiring stories and connections with other families, the obvious fear for us is that something similar happens again with another baby. I am sure many wonder if Jeff and I are more likely to have another baby with Trisomy 13. The answer is, not really. The doctors may say our risk could be considered increased only because we did have a baby with the disorder, but the chances are still very, very slim. We do not carry any genetic material that was responsible for the Trisomy. It was random. Regardless of knowing that, does worry still enter our minds? OBVIOUSLY. But then we think about what a blessing Lucy has been to our lives and will continue to be in the life of her big sister, Avery. And I think about the simple fact that Avery is healthy, happy and HERE with us on this earth. She is my proof that we can have a non-Trisomy baby, yet she also confirms to me that Lucy was not a mistake on anyone's part. Just as Avery was meant for us, Lucy was meant for us - all of us.

Each baby is 100% unique and special. If God chooses to leave our family just as the four of us, we will be just fine. Any way, it seems strange to consider "planning" for anything when OUR plans got thrown out the window ages ago. Yet, I look forward to what God has in store for us.

Finding Hope

What is HOPE anyway? I'm not trying to answer that question today by any stretch, but I like the first definition of hope in Merriam-Webster dictionary:

HOPE - to cherish a desire with anticipation.

But I like the definition several lines down more - to TRUST with CONFIDENCE.

Of course, we can try to bottle up the concept in words, but hope is a feeling, a belief.

And feelings are so very hard to describe.

Christmas is now past and the beginning of a New Year is days away. 'Tis the season when we find it appropriate to talk about hope. But it shouldn't be the only season. Hope is all around us, in our daily lives, even in what seems to be the least hoped-for situation. Finding God through the tough times and believing can often be the difficult part. He's there regardless. Hope is there to be found. We may just have trouble seeing it and believing it. We may "cherish a desire"... but do we "trust with confidence"?

I see perfectly healthy babies being born all the time and know many friends getting pregnant. Healthy babies come along every single day. I should have hope. But after losing Lucy I feel like I've become somewhat of a skeptic - for someone who has always tried to see the positive side of things, I'm on the opposite side of the fence for once. It's challenging.

I constantly, daily, roll around different scenarios in my head. I feel guilty in some way that I didn't get the genetic testing done during my pregnancy with Lucy, that I didn't know the sex of my baby before she arrived, and that we hadn't even settled on a NAME. (For heaven's sake, for half of the pregnancy we assumed Lucy was a BOY). There was so much that happened in her short little life. So much hope, and then so many shattered dreams. Moms tend to question themselves entirely too much as it is. I don't even have my sweet Lucy by my side and I'm questioning if I was a good mother to her. I feel as though I lacked in planning for our little miracle baby. We weren't equipped with all of the knowledge that was available to us. How could I have done that?!

At times I have felt a little strange talking about Trisomy 13 - not many people know what it is. Or, if you've heard what it is, you try not to think about it... because you think "oh, that wouldn't happen to ME." I have gone through phases where I've felt ashamed or embarrassed about it and thought "How could this have happened?" All the doctors say it's nothing I did, and additionally my faith says that it's all in God's plan. I know what I'm supposed to believe... but I can't help still thinking that I could have changed it. I had hoped for the best.

This week a friend of mine passed along the blog of the Green family who had a baby girl, Hallie, this past Monday before the holiday. Hallie was born with full Trisomy 13, just like Lucy. The Green family's story about baby Hallie has been truly amazing for me to see. I can relate to the story from the inside because we've lived something similar, but I'm also very much seeing things from the outside looking in.

I am so very glad that The Green Family has openly shared their story about Hallie and Trisomy 13. Hallie was diagnosed prenatally and her parents accepted her whole-heartedly and gave her a chance - this chance - at life. I was just devastated to hear that her sweet, short life came to an end on Christmas Eve. Another sweet angel gone home to be with Jesus. Her story is a beautiful one full of love and hope, and it's still unfolding as this family mourns her loss. Seeing the LOVE that they experienced by her very presence gives me faith that is indestructible and hope that is eternal. It's a sad story - it's heartbreaking. But I have hope. I believe that little Hallie's story will continue to change lives.

If I had to do it all over myself - the pregnancy, the testing options, the time in the hospital with Lucy - I wouldn't change a thing. As much as I can doubt and question myself, I know everything was exactly as it should have been. I run through the scenarios if we'd chosen a different path at different forks in the road. But that isn't what happened.

Our story is just that - OUR story! Lucy's story.

A parents love for their child is built on HOPE. Hope for our babies. It doesn't matter if we got the genetic testing done during pregnancy or if we knew as much as I could possibly know about Lucy. We gave her a chance. We chose Lucy. We had hope in her, and ultimately had hope in God's plan for her. And she fulfilled it with the beauty, grace and love that was her purpose. I can only hope to do that much in my lifetime.

I will never be able to describe hope in words.

But hope is the future. And despite our losses, the future is hopeful.

Find the Green Family here.

I encourage you to surround this family with prayers.

They will need them.

Cleft of the Matter

It's all about perspective sometimes.

As you may know, when I was pregnant with Lucy we found out at my 20-week ultrasound that she had a cleft lip. I still remember the moment that they told Jeff and I that our baby had a cleft. And I am now thoroughly embarrassed and ashamed of how superficial my initial reaction was. I was concerned about the medical aspect, sure, but I was DEVASTATED over the physical aspect. I felt vain and superficial, but I just couldn't picture a baby with a flaw. MY baby with THIS flaw. To put it simply... I was FREAKED out.

After a follow up ultrasound and confirmation, we slowly started wrapping our minds around the "cleft of the matter." The cleft was a fact. It was there, and there was no changing that. We opted out of the genetic testing because it wasn't going to change anything we did, and we focused on educating ourselves on what we knew for sure. We were going to be parents of a cleft baby, a sweet, innocent little cleft baby. Do you know a cleft is actually a more "common" birth defect? I connected with so many parents online that were going through what we were going through! And as we started hearing other stories and learning from their experiences... it became easier. We gained acceptance.

Two cool things I learned about the community of people raising cleft babies during my pregnancy is that, (1) they are a big family, sharing tools and tips. I connected with many, many of them in an online group on www.babycenter.com (thank goodness for the internet!). (2) there are SO MANY resources here for cleft babies. We are so lucky to have wonderful doctors and programs here in the United States to support families going through this challenge. By far, though, the best part about these families I connected with? They saw so far beyond the cleft that they hardly saw the cleft at all. Their love for their child was evident no matter how severe the cleft was or how challenging their cleft-related issues were!

Then there was Lucy's cleft. When we met Lucy, her beauty was still very evident despite this "flaw." In fact (I've said it before and i'll say it again), the cleft was actually a major part of her beauty and uniqueness. It gave her whimsy and charm. It made her "Lucy." If the cleft had been an isolated issue, it would have been nothing. NOTHING. Totally fixable, doable.

Of course, in Lucy's case the cleft was related to her Trisomy 13 condition. It wasn't "just" the cleft. When we started realizing there was more to her condition, our focus changed significantly. I have learned a lot about Trisomy 13 since her birth. At this point I have actually even gotten the amazing opportunity to connect with another mother of a Trisomy 13 baby here locally. (The condition is quite rare, so the fact that I've connected with someone this close is a huge blessing!) And what I've realized in thinking back on all this is... I can't believe that we were that worried about the cleft!

I just keep remembering how TRAUMATIC it felt when we received the news of the cleft in our ultrasound. We were broken down and started having pity for ourselves over what our child (and whole family) would have to go through with surgeries, possible feeding issues, developmental delays, emotional and psychological issues, etc. I even worried that I would not love my child the same - that I would feel different somehow. Wow, now I'd give anything in the whole wide world for our sweet little cleft baby. Anything for it to have been a condition that we could have fixed. How we wish it was "just" a cleft.

And, shame on me.

How could I have questioned for a moment that I wouldn't love this baby the same?

I did.

I do.

I will.

Always.

In Memory of Lucy

God took our angel Lucy Isadore to his heavenly Kingdom on July 25^th, 2011 at 5:46 a.m. While she was only with us for less than 6 full days here on earth, the impact she had on our lives was truly amazing. We experienced a range of emotions and love that we could never have imagined possible without God’s love and protection. We have experienced and continue to experience God’s grace through the prayers of many as we strive to find peace.

The night Lucy was born - 7/19/11

Lucy had a great evaluation after her birth and we were relieved and hopeful. We knew she would get genetic testing after birth because of the cleft lip (which we knew about prenatally) but at this point there was so much joy. We didn't know the sex of the baby during pregnancy, so when it was revealed that we had another baby girl, we were both shocked and excited. Lucy was a magnificent surprise!

Our precious angel – 7/19/11

When I took the above photo of Lucy late into the night of her birth, I had no idea of everything that was about to unfold in the next several days. There was the obvious cleft but we had done so much research on cleft surgeries and procedures that we looked past this almost immediately. She also had a tiny little flap of skin on the outside of her left hand – but it seemed so minor and was totally fixable. You would have never known otherwise (by looking at her) that there was something much more significant going on with her sweet perfectly made form.

"I praise you, for I am fearfully and wonderfully made." ~ Psalm 139

Lucy got very quickly sick on Wednesday morning. By noontime on 7/20, she was admitted into the Neonatal Intensive Care Unit (NICU) at Levine Children’s Hospital and I was in shock. I think we still had the hope that they would call and tell us that everything was ok, it was all a fluke. We went and sat with her several times that day, but it all seems very blurry. Doctors and specialists seemed to be in and out all day. We didn't understand some of the terminology and we certainly didn't know what questions were the right ones to ask!

Lucy in the NICU - 7/21/11

While Lucy was in the NICU they kept uncovering things that were “different” about her when they did scans and tests on her. Many things were very “fixable,” but it was clear that with all of the factors put together the chances of them finding chromosomal condition were getting higher and higher. I was released from the hospital on Thursday, 7/21. We had to leave Lucy in the NICU’s care, and we were just starting to wrap our heads around things. Because of the ventilator and monitors, we were not allowed to hold her, and it was such a sad feeling, like we couldn't care for our little girl. I did get to change her diaper though, which was a big deal. (Never has changing a diaper been such a thrilling task!)

Lucy was very responsive to our voices and that made us feel really great and gave us hope. Most babies seem to take to Jeff very easily, and Lucy was no exception. She responded so well to his voice. She would shift around or turn her head when she heard us near her.

Mommy gets to hold her! - 7/22/11

We were able to hold her the night she was born, but hadn't in what seemed like FOREVER. By Friday, Lucy has adjusted well to the ventilator and her breathing had stabilized. She had a really great night/morning so I got to hold her on our visit around noon this day! Look at that precious blondie of ours! I think Lucy had more hair at birth than Avery had on her first birthday! She was opening her eyes and looking at us too. My heart was melting in the photo above - so in love with her!

The night of Lucy's diagnosis - 7/22/2011

The above photo was taken Friday evening. We were called back up to the hospital at 5:30 p.m., and by 7 p.m. we learned of Lucy's diagnosis of Trisomy 13. We knew Lucy was special and unique, but she was a perfect doll baby... her perfectly round head, her shiny blonde hair, her long torso, her long legs and thin, beautiful feet. She would open her eyes and gaze into ours. She knew us; she recognized our voices. When she got mad, she’d kick her legs and push herself way up out of her little foam-like pad she was sleeping on. She was strong! When we thought about how we'd picture a baby with a genetic disorder it wasn't Lucy. She wasn't sickly looking, she wasn't weak. She wasn't deformed. She was perfect... and the cleft was NOTHING. It could be fixed. We almost felt silly at this point for worrying about it in the first place!

But Friday night the puzzle pieces came together when the doctor told us the news - Lucy's diagnosis from the pediatric geneticist. Our worst fears were confirmed. Lucy had a genetic disorder that couldn’t be fixed and couldn’t be reversed - Lucy had Trisomy 13. It was determined the second she was conceived and there was no way we could have changed it. Though completely devastated, it wasn’t a surprise at this point. Through the tears of sadness, we also found that we could breathe easier just knowing they would stop their poking and prodding her.

There is no doubt that God's peace was there with us. Trisomy 13 is described as "not compatible with life." But yet, here was this precious gift - here was the little LIFE. Lucy was not going to be with us long, and the doctor informed us that the strategy of her care would change. We were going to focus on making Lucy comfortable and loved from that point on and his goal was to make us feel like a family. That’s right, we were just simply going to be a FAMILY. I love the quiet moment pictured above between Daddy and daughter, captured that night.

Lucy catching some rays - 7/23/2011

Everybody needs a little "sun." We loved walking in on Saturday morning to see Lucy catching some rays under the UV lamp, and found comfort in knowing that even "normal" babies need to be treated for jaundice. Our little Lucy got a bit jaundiced too. We loved seeing her in her faux baby "sunglasses" and the peace in this picture. She was thrilled when we got there and she could take those "shades" off though!

Visitors! – 7/23/2011

Lucy got her first visitors (aside from Jeff and I) in the NICU on Saturday. Big Sister Avery came to visit along with her Nana and Papa Bricker. Avery brought Lucy her lamb toy and sang her a passionate version of “Twinkle, Twinkle Little Star.” She also enjoyed singing Dora the Explorer songs to the nurses and jumping around entertaining whoever would look her way. She is QUITE the performer. Lucy actually seemed a little annoyed. Sisters!

Love, Love Me Do – 7/23/2011

Jeff and I came back to see Lucy Saturday night with my parents. Pastor Bill Roth joined us to baptize Lucy that evening in her NICU bed. Afterwards Jeff and I stayed to visit with her. I sang Lucy songs like “Love Me Do” and “Jesus Loves Me” along with “Amazing Grace.” This was the last day we saw Lucy open her eyes to look at us. We have so few photos with her eyes open, because most of the time taking a photo of her with them open with the absolute LAST thing we were thinking. We were just gazing back at her! This above photo is one of the few we have.

I read Lucy a letter I had written to her early that morning and she focused on me with both eyes the entire time. Another memory made; another peaceful and perfect moment.

Comfort and Love – 7/24/2011

Lucy came off the ventilator around 2 p.m. on Sunday. I held her and Jeff was right by our side. We had no idea how it would go, we were just hoping for a moment with her, praying for longer. Our tough little girl had more bonding time in store for us… she did fine when she came off the monitor. It was pretty clear though that the doctors and nurses were worried she would not make it very long. We were very focused on making her feel perfectly comfortable and loved. She seemed to be so happy to get rid of that ventilator and we were so happy to see her face without that tape across it!

Remembrance Photography – 7/24/2011

Once Lucy was off the ventilator and her breathing was fairly stable, the nurses arranged for us to have a volunteer photographer affiliated with the Now I Lay Me Down To Sleep Foundation come to do some remembrance photography Sunday afternoon. The above photo was taken after we got Lucy all dressed up in a pretty white gown for the photo shoot. We had to keep her wrapped up tight to keep her very warm once she was out from under the heat lamps. Avery joined us for the photo shoot and for several hours at the hospital, and this is the day I will remember us truly feeling like a family. They put us into a comfortable room at the hospital with a double bed and we were able to just simply “BE.”

We won't get the actual photos back for a couple weeks, and I know it will be tough to see them, but I am so glad we were able to make some memories together as a family.

"I thank my God every time I remember you." ~Phillippians 1:3

Saying Good-bye – 7/25/2011

The above picture was taken in our room on Sunday night - just some more bonding time while Lucy was doing so well. Soon after we were advised to stay in the “boarding” room at the hospital overnight. My worse fear was getting a call in the middle of the night, and Lucy’s vitals were starting to get worse, so we decided to stay that night. We are so glad that we did. We kept her with us until almost midnight and then sent her with her nurse so we could try and get a wink of sleep. I don’t think we did; I honestly don’t remember.

We got "that" call in the middle of the night, and thankfully we were just steps down the hall from Lucy. Lucy was brought to us around 3:30 a.m. and once we realized that a farewell was imminent, the doctor made a decision to take away most of the tubes and wiring so we could see every last inch of her in her final moments. We asked Lucy to watch over us and her big sister Avery; we told her we’d love her forever. We loved on her, prayed over her, sang and chatted with her before she passed away peacefully at 5:46 a.m. in our arms. God never left our side. We felt His presence welcoming her lovingly as we let her slip away. We felt our hearts crashing to the floor, and His peace filling up the massive void that was left behind.

The New Normal.

In the last several days we’ve had to make decisions you never think you’ll have to make. The difficult times are not behind us – this healing will take time. But I believe in divine purpose. We had what we’ve called our “earth angels” beside us every step of the way. A nurse that reminded us the “The Lord giventh, and the Lord taketh.” A doctor that prayed with us several times and told us he didn’t believe in “chance.” One thing is clear - Lucy was meant to grace this earth, and she was very much meant to be a part of our family.

"And we know that in all things God works for the good of those that love Him, who have been called according to His purpose." ~ Romans 8:28

Our journey as a family continues. We are adjusting to a “new normal.” Part of our healing process is the desire to give back to some of the great people and programs that were instrumental in helping us feel like a true family during our time with Lucy… They have also given us the tools and resources so we can continue to blend Lucy's life into the rest of our lives and explain to Avery the special relationship that she and Lucy will always have. We will pass along several web links in a separate blog post if you desire to support some of the people and programs that have supported us.

We appreciate all the prayers, love and support. There will be sadness that haunts us. There will be paranoia that creeps in. There will be medical bills bearing her name. There will be songs on the radio that remind us of our Lucy. And we won't physically have her here to hug and hold. Lord knows it won't be easy. But our hope is only that blessings of love can come from those who hear our story. The story of love that rings true through all our pain and sadness.

"I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow." ~ Jeremiah 31:13