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

Faith and Following

This blog entry is an excerpt from my personal {handwritten} journal. I wrote it just over a year ago (6/1/2011) as we had learned information about Lucy in utero that concerned us greatly. I wanted to share it because this was written when I started realizing that Lucy may not make it. So weird looking back and reading these words... I was just over 31 weeks pregnant with her.

.................................................

Yesterday (at our ultrasound with Dr. Stephenson) we learned that the baby appears to have an extra digit on the left hand. As an isolated anomaly they would not be so concerned but the obvious overtone of the visit was that this, combined with the cleft lip and the IUGR could be another sign toward something more serious being wrong with the baby. They would like me to consider a late-pregnancy amnio to test for genetic disorders, such as Trisomy 13 or 18, which are considered lethal and even if the babies with those disorders "make it" through labor and delivery, typically they have pretty severe mental retardation, medical issues, etc and can live only hours or days.


Though I understand why they are giving me these options, I guess there is part of me that enjoys being in this space of not knowing too much. It protects me from having to deal with the greater ethical and medical decisions that they seem to want made. The thought of losing this baby, our baby, is paralyzing and traumatic. But it's tough - I also don't want our baby to suffer or go through too much if he or she will have no quality of life. Choosing to "not know" makes me also feel like I'm living in denial. That part of me that says, "If the technology is there, use it... they are offering it for a reason."


There is so much running through my head right now. I just keep feeling like I could lose this baby at any moment. Every kick, punch, flutter - each and every movement I feel baby make is noted with a mix of happiness and sadness, as well as fear. Great Fear. But feeling baby also strengthens my faith that God's master plan is in action and reminds me that I have to trust in Him to provide peace and strength. This baby makes me a mother twice over - I am blessed.


Yet, my dear friends are throwing me a baby shower next weekend and I'm finding it hard to get excited. I almost want to hide away & protect myself from possible loss. I can't help wondering "what if there isn't a baby to bring home and swaddle...?" I feel ashamed thinking this knowing that the baby may still be fine. Hoping the baby will be fine.


Dear God,
Let your love pour down on me and my family. Let your healing touch be with this baby and let your will be done. I pray that you continue to unveil your plan & purpose for our lives. Please prepare us for what is to come and let Jeff & I draw stength from you when we are feeling lost. 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, and I pray that you use him or her for Your work. Should I have the opportunity, I promise to raise him or her teaching and sharing Your message. Should I not get the opportunity, I pray this baby feel our family's unconditional love regardless of the time we get to spend together.


Please be with us always and remind us of the miracles that are possible when we remain faithful. Thank you for the gift of family - for Jeff, for Avery, for baby and for our family members near and far. I will continue to follow if You promise to show me the way.


In your Son Jesus' name,
Amen.

................................................

As eerie as some of the words seem to me now, there is so much comfort in looking back with the perspective that God has given me. Let us remain faithful even when it feels like hope is failing us. I desired to remain faithful no matter what. I will continue to follow if You promise to show me the way. I promised to follow God and let Him lead the way.

“I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

~ John 8:12

"I urge you to live a life worthy of the calling you have received. Be completely humble and gentle; be patient, bearing with one another in love. Make every effort to keep the unity of the Spirit through the bond of peace."

~ Ephesians 4:1-3

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.

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.

This Little Light of Mine

My mom made me think of the song "This little light of mine" the other day. I used to sing it as a child.

We were talking about how it doesn't feel natural to accept grievances on our family's behalf. We don't like for others to hurt - especially not for us. We worry about how we affect others. I worry about if it's awkward for someone to run into me unexpectedly. I don't like the feeling of not knowing what to say (for that person or for myself).

Pregnancy is a pretty public ordeal nowadays. People talk about it constantly, strangers even offer advice at the grocery store or reach out to touch your belly. Friends and family celebrate alongside you the entire time, preparing you and nurturing you. I remember when I found out about some of the issues that Lucy was going to have prenatally - the cleft lip, and the extra digit on her hand - I wished I could hide the remainder of the pregnancy "just in case" there was something more to it. I had many tears and fears throughout the journey. But, alas, I tried to wear my baby belly proudly. I celebrated the little life growing inside me - a true miracle, no matter what.

But, now I'm experiencing the feeling of wanting to be in hiding once again. I thought I could start venturing out, but oh - it's so difficult. I'm not sure how to act. At times I feel like I'm walking around in a fog, just floating through. Other times I'm over-aware. I start questioning everything. I'm curious if strangers look at me and wonder why I look so sad? Other times I wonder if someone I know is seeing me and wondering why I seem so happy? I find myself wanting to duck behind things and take cover so no one sees me.

I wonder constantly about what will come out of my mouth the first time I run into someone who doesn't know what we've been through and asks excitedly, "Oh, you had the baby!?"

Um, yeah, I had the baby... (weird, awkward pause)...

But there is probably something to exposing the wounds a little, letting them air out. I assume there has to be some healing there. I'm trying to realize that in time getting out will allow my light to shine out into the world a little brighter. (Again, it's so fitting that Lucy's name means "light"). Slowly but surely I will get there.

This little light of mine, I'm gonna let it shine.

This little light of mine, I'm gonna let it shine.

This little light of mine, I'm gonna let it shine.

Let it shine,

Let it shine,

Let it shine!

Hide it under a bushel... NO! I'm gonna let it shine.

Hide it under a bushel... NO! I'm gonna let it shine.

Hide it under a bushel... NO! I'm gonna let it shine!

Let it shine,

Let it shine,

Let it shine!

And yes, I think the repetitive nature helps the message stick, so I wanted to type each line out! ;)

There is nothing to hide. Some things are private, yes. And how well you know someone dictates how much you are going to share. But I never want to feel like I have to hide myself (or my child) from this world. I want Lucy's light to shine through me. And more importantly I want God's light to shine through me.

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

What's up, Doc?

Just some good ol' baby #2 updates for ya.

We've been meeting with specialist Dr. Courtney Stephenson the last several visits at CMC Women's Institute, and she is very thorough. Yesterday she took another look at baby's kidneys and they pretty much look the same as they have. The good sign is that there is plenty of amniotic fluid surrounding the baby, which means that one or both of them are functioning correctly. As the doctor said, "You really only need one!" Of course, we'd like there to be two working properly. But we will count our blessings. (One of them NOT being that the baby is sitting in a breech position again. I just KNEW it. Lyss and Hill - did I not say this last week? But still, there are many other blessings we cannot ignore.)

The baby has gained over a pound in the last 4 weeks, and should continue to grow steadliy at this point. Baby is measuring a bit on the small side for 35 weeks, but she said is still at a healthy percentile. He or she is currently at a 14th percentile and she doesn't want to see it drop below 10%. Fatten up, sweet little one. (I ran and got a cookout milkshake immediately after my appointment - I felt it was absolutely necessary!) They estimated the weight at close to 4 1/2 pounds and said typically baby will gain about 8 oz per week at this point.

Once again baby kept hands and arms over face the entire time. At one point baby actually was clasping one arm with the other fist in a pose that resembled a cross between a karate and cheerleading move, very firmly blocking any view of the cleft. Oh well. Not much more we can learn at this point anyway.

I also found out in chatting with Dr. Stephenson that she had surgery performed by the plastic surgeon we met with a couple weeks ago! Her son kicked a soccer ball that landed smack-dab in the middle of her face and broke her nose. As she phrased it, "I even let Dr. Lefaivre operate on ME." To which the counselor in the room followed with, "And she's VERY particular." I guess we can count that as a very good referral! She does seem awfully particular. Which I think is a good thing in a doctor. :)

We go back again on July 18th for yet another scan. They will check on kidneys and fluid levels as well as baby's growth. Thanks for all of the thoughts and prayers coming our way!

Oh, also - I don't know if I mentioned it formally, but you may have assumed... we have decided NOT to get the amnio testing done at this point. We are just going relax (hahaha) and wait for our baby's arrival.

Another overdue post... a look at plastic surgery

On June 16th we met with a plastic surgeon at the hospital. It was a very informative and interesting appointment, and I think we felt much more educated after speaking to someone that performs the cleft surgery. We still feel a long ways off from grasping the whole scheme of what's to come, but I will try and give the best overview that I can!

First of all, we are talking about a baby and a cleft before we've actually SEEN the baby. I have to keep reminding myself that we don't really know what the extent of the cleft lip/palate damage will be.

Here's is what I took away from our meeting with the surgeon. First of all, there are many, many, MANY different factors that can present themselves with a cleft baby. The cleft palate can affect feeding, hearing, breathing and more and there can be a long series of corrections throughout the child's life - up through their teens and sometimes beyond into adulthood. Up until this meeting with the surgeon I had really only focused on the first year or so - basically the initial lip and palate surgeries.

So, here's a briefing on what we can expect:

The surgeon would likely come visit us and evaluate the baby in the hospital or we would meet with him very soon after the baby arrives. Our immediate concern will be feeding. Lactation specialists at the hospital would help us address any immediate feeding needs. Plan (A) - to breastfeed. Plan (B) - anything that works. There at the hospital we will have access to many different types of bottles and nipples that we can try. If the palate is affected, the baby may have trouble gaining suction, making it nearly impossible to nurse, and even tough to use standard bottles. They need easy-flowing bottle nipples and perhaps even extended nipples so that the milk doesn't go up into the nose, so the opening sits back further in their mouth (from what I understand).

The cleft will be evaluated to determine the baby's individual needs, but typically the surgeon will start some taping for the lip soon after baby is here, to help stretch the skin of the lip and prepare it for surgery, which is done around 3 months. There will be a hospital stay involved and what I describe as extensive surgery for a wee little one (under general anesthesia). It typically takes up to 6 weeks for the healing to be complete, and we are to expect some scarring. It can take up to a year for the lip to gain full flexibility and for the skin to become soft and natural feeling.

Around a year of age, our child would get the palate surgery done, if necessary. They may also recommend that baby gets tubes put into the ears, as there is a lot of fluid that can get into the ear canal. They try and do these at the same time so as not to put child under two more separate times. The baby teeth are generally growing in around this time, but they don't really tend to discuss fixing the teeth until permanent teeth are coming in.

If the nose or lip still needs adjustments (such as to correct an uneven nose structure), they usually will schedule them before the child goes to school. Then there is another possible surgery that can happen closer to age 8 to repair any gumline/bone damage affecting how the permanent teeth will grow in. Oral surgery, orthodontics and implant dentistry will be made available based on need. Once the child's face more fully develops (in his/her teens) another rhinoplasty surgery may be needed for cosmetic and/or breathing issues.

Here is some information through the Levine Children's Hospital site that I find helpful:

http://kidshealth.levinechildrenshospital.org/PageManager.jsp?lic=236&dn=LevineChildrensHospital&article_set=22974&cat_id=138#

We think we are going to meet with another surgeon in the Charlotte area that does a lot of cleft work. The surgeon we met with already is certainly experienced, but he does more breast cancer related surgery and reconstruction. He seems to be an amazing surgeon, but we may go with someone that does cleft repairs more regularly. We are in this for the long haul and want to be 100% confident in our decision.

Whew, exhausted yet? I am. Overwhelmed? You have no idea!

The good thing? The cleft is FIXABLE. And we know that the child will be loved and adored for who he or she IS, and that is not based on the outside appearance (but c'mon, of course he or she will be ADORABLE!)

Still, scary. I just sit here and think about the next stretch of time, ranging from the next several weeks (I'm 35 weeks along in the pregnancy now)... to the next 20 years... to the rest of my child's life. I am anxious to make everything "right" and yet I know it's all out of my hands.

I worry about the psychological affects on my child. I never want my child feeling bad about him or herself and putting too much emphasis on looks. I know at some point in our lives we have all been plagued by some sort of image issue - I sure have. Who hasn't looked in the mirror and wanted to change something about yourself? We are never satisfied.

Much rests on a parents' shoulders to raise their child with the confidence and assurance that they are perfect just the way they are - despite their flaws or weaknesses. And we must instill these values in our children so that they can look at others with the same perspective.

Yep, this parenthood stuff really comes with a lifetime contract.

And we are prepared to fulfill it! :)

On another note, this Thursday, June 30th, we have an appointment with the specialist again to take a look at the baby's kidneys. Please keep baby in your thoughts and prayers. We are praying the one kidney looks remarkably better this time around!!!

No one said it would be easy

So, it's about time I give some "blog love" to the baby, AKA "White Baby #2." I have started this update so many times, and just have not been able to put everything into words. Bear with me here - I'm trying! I have now passed the 30-week mark of my pregnancy, and feel like I've hit what could be considered the home stretch. But it has not been easy (As you can tell from the tired-looking photo below, documenting the pregnancy at 30 weeks - yikes. I can tell why Jeff despises taking these pictures - ha).

The second trimester, which most would describe as the easiest, most enjoyable part of pregnancy, was burdened with a lot of worry and stress. As each doctor appointment (with the specialist) approaches I am filled with a mix of excitement and fear. At my previous appointment on April 28th, I met with Dr. Stephenson, another specialist at CMC Women's Institute - I was really hoping to get a better idea of what to expect with the cleft and palate. The ultrasound was fairly inconclusive and we couldn't get any pictures of the cleft to give us a better idea of what to expect. I was extremely frustrated with the whole process (as it was a THREE HOUR process) - especially when I couldn't get the information I wanted. Baby was cute, but NOT very cooperative. As Avery would say "Not nice, baby. Not nice!" The kidneys still had quite a bit of extra fluid at this visit.

Then, on May 9, I added to my stress by failing my O'Sullivan's Test - the initial glucose screening. After fretting for 10 days about how I was going to have to go on some extreme diet and get insulin shots (because in my mind SURELY I had gestational diabetes) I took the three hour glucose test on May 18th and PASSED it. Mark that one off the list, thankfully. Celebrated by eating Starburst candies. Practically an entire bag of starburst. Oops.

Between the glucose tests, visits with my regular midwife at Charlotte OB, and the appointments with the specialists at CMC Women's Center, I have spent a good deal of time down at Morehead Medical Plaza. Thank goodness it's not even a quarter mile from my office! Overall, I feel good, baby is very obviously growing and getting stronger, and we have yet to have an appointment where his or her heartbeat isn't just the healthiest sounding heartbeat I ever did hear. Love love love that strong little heartbeat - never fails to make my own beat a little stronger! Yet, just when we start coming to terms with things, gaining more confidence and hope that all is FINE...

... Yesterday at our 31-week appointment with Dr. Stephenson, we learned an additional detail about the baby that has us worried all over again. They scanned over the baby's hands and showed us what they are fairly certain is an extra digit on the left hand. If isolated this is a cosmetic and easily fixable issue, but you can imagine the overall tone in the room when this was discovered on top of what we already knew - and I was scared to death. Along with the cleft and the extra fluid in the kidneys, the chances of something more medically serious with the baby have been elevated once again. :(

There is no sure knowledge we can gain unless we do an amnio or wait until baby gets here, so at this point we will probably wait. We will go back on June 30th so that they can take another look at the kidneys, but we have chosen to isolate that issue, as the others are cosmetic and repairable. We are just praying steadily that they are not related to any larger issue.

We'd really appreciate the additional prayers for baby and for our family in the coming weeks. We still need to make a final decision about the amnio before this next appointment, and we hope to find peace in our decision whether we move forward with testing or not. And of course, at the end of the day, we pray that we can bring a healthy little baby home from the hospital to put in those cute little newborn diapers, to swaddle in those soft little blankets, to kiss and cuddle constantly. We pray that our baby will come to know an unconditional love no matter what. Please pray that each day we can be reminded about God's love for us and that He may continue to reveal to us signs of a plan that is much bigger than our own.

Many thanks to those of you who are supporting us along the way.

"I can do all things through Christ who strengthens me."

Philippians 4:13