6 months

Half a year. It doesn't seem possible for my time with him to be so far away on the calendar. Soon we'll turn the page to a new year, leaving him behind in 2011. Part of me is ready to start a new year, hopeful that it won't be so hard as this one has been. But, the other part of me is sad to move on into a year in which he never lived. For Tim and me, 2011 was defined by Ellis. I remember pondering that during New Year's Eve last year. I thought to myself, "This is the year my baby will be born. 2011 will always be important to us." I had no idea that it would also be the year my baby would die.

6 months later I still struggle with the idea that all of this was unfair. I see God's blessings and grace and know that those too are unfair, but the unfairness of losing Ellis does not sit well in my heart. I don't always feel this way, but it would be dishonest to say that I never felt this way. I'm working on it. I'm learning to trust that His way is truly good and that the plans I concoct for myself are not promised and may not even be good. It's a difficult road to navigate when what you desire seems to be a good thing. Seeing Ellis healed here on Earth, didn't seem like a bad idea. And yet, God in his infinite goodness chose to do otherwise.

I spoke with another grieving mother on Christmas Eve and she shared wonderful insight and words of love with me. She reminded me that we have a choice when we suffer and that licking our wounds, dwelling in the dark, is not going to bring about healing. The little baby born in the manger should cause those of us who suffer to celebrate more than the rest this Christmas. I have to admit, my heart did not feel very celebratory over the weekend, but knowing that my baby boy is rejoicing in Heaven this holiday season reminds me that I should be rejoicing with him. He sees it from a different perspective than I do, but we celebrate the birth of the same Savior. And without that Savior, there would be no reason to rejoice.

Merry Christmas and a Happy New Year, as well.

With love,
Rebecca

a Savior born

Advent.  Expectant waiting.

Christmas. The birth of a long expected Messiah-- a gift of mercy and grace.

This year I approach Advent and Christmas with a different heart, one that feels a bit battle worn. Nothing feels quite the same anymore, even Christmas.  I love this time of year and I want to enjoy it like I have in years past. But, I don’t know if that’s possible. I think it will always feel different, even when this time of intense grieving is over. I view the world and most experiences through a different lens now. I know it won’t always be so hard, but as with many other things, this time of year is now more complicated.

This year I’m not just waiting for the Christ child to be born. I’m waiting for His redemptive work to bring healing, restoration, and peace. I’m waiting for His mighty hand to shift frustrating circumstances. I’m waiting for the day when the pain of this life will be behind us and the joy of eternity with Him will be in front of us. I’ve never been so thankful for that little baby born in a stable. The day He was born was the beginning of a wonderful story. It brought powerful meaning to my own story and to my baby boy’s story.

When we think about Christmas, our hearts become warm and we romanticize the events of Christ’s coming. Yet this year, I’m struck by the idea that His coming to Earth as a baby , the years that followed, the anticipation of giving up His life for the sake of ours, and His actual death on the cross were evidence of His surrender to the will of God for the sake of our redemption. We think about Christmas and we imagine the wonder of God becoming man, coming to Earth as a baby, the Savior born! And yes, it is a story filled with goodness and joy, but it is also a story of great sacrifice…for Jesus, His heavenly Father, and His earthly parents.  They each gave something that was not easy to give.

Jesus—He gave up His heavenly home, forsaking His equality with God

God the Father – He gave His only Son to live as a human and eventually die an unfair death

Joseph & Mary – they gave up a normal life, one that fit their plan, and a clean reputation

The first Christmas was most definitely filled with grace, wonder, and beauty, but I also believe it was messy and hard.  I’m thankful that God in his infinite goodness chose to send his Son for us. What love, what grace, what sacrifice. It’s the giving up of so much that makes it beautiful. I suppose that’s why we love Christmas so much…an immeasurable gift was given. Something we simply did not deserve and suddenly it was ours. This Christmas the pain of loss is real in my own heart, but I hope that is going to allow me to better understand the sacrifices so integral to this story.

I hope and pray that the wonder of this season fills your home with joy, peace, and love. It’s the prayer I’m praying for our home as well. Merry Christmas, friends.

With love,

Rebecca

Luke 1:46b-47

My soul glorifies the Lord and my spirit rejoices in God my Savior.

Abundance

The holidays are tricky for those who grieve. The sense of loss refreshes in our minds. During a time when the focus is on time spent with family, you can't help but realize family photos will feel incomplete and not every stocking needs to be filled. But as we step closer to Thanksgiving, I'm working hard to remember that which I am thankful for. There's quite a bit, really. Tim and I are truly blessed people.

Family. Home. Church. Marriage. Friends. Income. Freedom. Faith. And above all, we are saved by grace.

Today, I'm remembering to say, "Thank you" to the Giver. He gives abundantly.

Thoughts at 4 months

Here we are again, acknowledging the passing of another month. It’s been four now. Sometimes I allow myself to think about what it would be like to be celebrating four months of life, as opposed to only remembering that it was four months ago he was here. It’s a big difference. He’d have grown so much by now, I’m sure. Now that autumn is truly here, we’d make sure to bundle him up warm and cozy…probably acting as over-zealous first time parents who are sure the baby will freeze in this mid-fifties weather. Maybe we would’ve moved him from our room into his room. I’d probably be missing him at nights, wishing he were closer. Kind of like how I miss him now, perpetually wishing him to be somewhere nearby. And of course, I’d be worrying and researching about taking him on his first airplane ride as we’re heading to see family over Thanksgiving and then again at Christmas. Instead my life is very different, quite void of all of that.

I’ve found I can’t let my mind stay in that place where “what if’s” contrast so starkly with reality. It’s not good for my mind or my soul. But Tim and I both think about it from time to time and it makes me wonder what it would be like to experience all of that. For now I watch those life-altering transitions occur in other family’s homes and hope for the day when it will happen in mine. This is a House of Hope, after all. Our minds may get stuck in the wondering why this is our reality and not that, but that does not mean we are not without hope. Our tender hearts are learning to trust that our big, good God knows what He is doing. I can rest in that, even when my heart becomes anxious wondering what our future will look like.

There are still some who are brave enough or kind enough to ask us how we’re doing. I know not everyone is sure how to handle that. I think some are afraid they will open up a wound by asking, but the truth is the “wound” is still open and never far from our minds. We’re not being reminded of its existence when someone asks, but more being reminded that others remember Ellis too. Tears may still come when someone asks, “How are you,” but that doesn’t mean we don’t welcome the question.  And still, four months later, we don’t always know what to say. So, we often stumble over our words and come across as confused. I guess that’s because we are. Grief is quite confusing.

Let me explain.

We ache. My heart still physically hurts most of the time. Even in those moments when laughter fills the air and there's fun to be had, it's still there.  

We have hope. We pray for restored joy and believe that God will grant us that. It makes it possible to get up and do it all again each day.

We’re scared. What will the next year of our lives look like? We’re now very aware that you can plan out your life all you want, but no moment in the future is certain. It can be hard to face an unknown future without fear.

And yet, we’re thankful. God has been so incredibly good, even in this. There is honestly so much to be thankful for that I don’t know where to begin. So, you’ll just have to trust me that we are truly blessed people.  

The emotions are conflicting and it’s hard to convey all that we think, feel, and experience. As much as I can write and talk about all of this, I feel as though I can’t adequately describe the journey. We appreciate that we’re still able to tell our family’s story. For now, we continue to heal, grow, and change through all of this.

With love,

Rebecca

October 15th

Today is Pregnancy and Infant Loss Remembrance Day.  It’s a day set aside to pause and remember each of those little lives that have made such a big impact. It’s not just Ellis. Every day others’ stories are being written. In many ways, October 15^th is just another day for us, but now because of the turning point in our own story, today is an opportunity to stop and reflect…to remember. Perhaps, for someone else, October 15^th means something, just like we have many dates that carry deep meaning for us.

December 16^th: we found out a baby was on the way. Worry, fear, and elation filled our souls.

January 5^th: we caught our first glimpse of that precious baby. Joy and anticipation beat within our hearts.

April 6^th: we saw him again, but also heard those awful words, “incompatible with life.”Again, fear, worry, and now sorrow coursed through our veins.

June 27^th: he came and he went, we held him in our arms. Overflowing love, indescribable ache, forever changed.

August 17^th: his due date. He was already gone, but that date represented something poignant, something that might have been. Empty arms and lingering pain, but paired with hope and, again, anticipation of joy to come.

So, although today, October 15^th, is just another day for us, it now carries meaning because of all those other dates that tell our story. Today is a reminder that all those lost babies were precious lives, particularly for those that carried them, whether in their womb, in their arms, or in their hearts. The parents of these babies remember them every day. Other family members and close friends may as well. Today we ask that others do too. It might not be your story, but it is ours. So, please…remember with us today.

"Thank you" doesn't feel like enough

Today my heart is full. I’m missing my baby, just like every day…the wounds still raw and open. But, my heart has been filled with the kindness of a group who shaped part of who I am today.  I’m floored by it -- the generosity and thoughtfulness of those who have blessed my life in countless ways in recent years, but particularly this year.

The school community in which I spent the past three years wants to create a memorial for Ellis. Parents and teachers have joined together to make this possible and every time I let the thought sink in, tears come again. It’s so simple, really. They want to plant a tree. And yet, the idea of that tree perpetually growing, casting beauty, and reflecting the glory of its Creator, all in memory of Ellis, warms my soul. The idea is to plant it somewhere on the property of our church…a place that with the change of jobs this year, I now go every day. A place that is just down the road from our house. We run, ride bikes, and drive by this place so often.

Thank you, Westgate. You surrounded me during the hard days of waiting, supported me after he was gone, and now remember him in the days that linger. It means more than you know.

With love,
Rebecca

Run/Walk for HoPE

Seeing as so many of you who read this blog are from Southern California, we thought you should know about this event being held on October 15th at Biola University. Some members of Rebecca's family are hoping to go and would love to make a group event of it! Online donations can be made on the Familes for HoPE website. Make sure to indicate the donation is for the 5K being held at Biola. Visit Rea of HoPE for more info. You can also find out more by visiting their Facebook page.

We wish we could be there to honor Ellis and celebrate the HoPE that can be found amidst a devastating diagnosis. If you decide to go, please let us know!

3 months

3 months. In many ways I’m shocked to find myself here. How did time move so quickly? My heart remains bound to the moments when I could feel Ellis kick, hear his heartbeat, or better yet, hold him in my arms. And somehow, our time with him seems so far away. For many others, his life may seem distant despite the fact that thoughts of him fasten to every other thought in my mind.  I guess it is just that way when the baby was yours and not somebody else’s.

And yet, with each new day I’m reminded that I’m one day closer to him. My baby is already living a jubilant life in Heaven with Jesus. When I stop and truly consider that, it’s astounding. He’s living and he’s in Heaven with Jesus. It’s exciting. It’s overwhelming. It’s hopeful. It’s good. In my best moments, this is where my mind dwells. I’m praying for more moments like these.

3 months later, there is still so much to process. I keep discovering new things about myself, my husband, our families, our friends, and our God. Every child is a gift and we are continuing to experience the blessing of Ellis, even if we didn’t bring him home with us.  Our hearts ache, because we were the ones left behind, but our hearts can simultaneously celebrate because new life is ours too. Since our God was and is willing to give “new life so generously” we can hold onto that hope. One day, one amazing and glorious day, we will live as Ellis lives: in Heaven with Jesus. I can’t wait.

Titus 3:3-8 (The Message)

"It wasn't so long ago that we ourselves were stupid and stubborn, dupes of sin, ordered every which way by our glands, going around with a chip on our shoulder, hated and hating back. But when God, our kind and loving Savior God, stepped in, he saved us from all that. It was all his doing; we had nothing to do with it. He gave us a good bath, and we came out of it new people, washed inside and out by the Holy Spirit. Our Savior Jesus poured out new life so generously. God's gift has restored our relationship with him and given us back our lives. And there's more life to come—an eternity of life! You can count on this.”

Living well

How do we live life well?

I used to ask this question, or a version of this question, before Ellis was even a hint in my imagination. I wondered about how to best live as a daughter of the King in my circumstances.  I wanted to serve Him well in my role as daughter, sister, friend, wife, and teacher. Nothing extraordinary, just regular life, but the question was how to do it well. Then, April 6^th came, and for the first time I heard the words “incompatible with life.” I now had to figure out how to live life well when my context included waiting for my baby’s birth and impending death. I remember asking Him to help me live those days with beauty. They were hard days, but looking back I can see the good He gave us during that time. And now, since the moment that Ellis was born and so quickly delivered into the hands of Jesus, I again am asking, “How do I live well?”

Each time the answer has been the same and it will continue to be so. Look to Him. There’s no other way. He gives it meaning. The moment I make it about myself, it falls apart. As soon as I try to take the weight of it all upon myself, I begin to crumble. There’s comfort in knowing the answer remains the same, no matter the circumstance. It’s the constant answer to the constant question, even when life is anything but constant. It strengthens me as I face the future, looking ahead to continued days of unknown. Because what I know of Him is good and it will always be that way.

-Rebecca

Don't miss the miracles

Someone observing our lives for the last five months might come to the conclusion that God didn't answer our prayers or perform any miracles.  After all, numerous people from all over the world joined us in lifting up Ellis in prayer for almost three months, yet he died shortly after being born much like the doctors expected.  We believe that over the last couple months God answered many prayers and even performed miracles. 

It's true that God didn't answer our major prayer request the way we hoped He would.  For reasons we don't understand it was His plan to take Ellis home.  Ellis was God's to give and Ellis was God's to take.  But there were many other prayer requests that God graciously granted to us.  Topping the list was that we met Ellis.  From the first ultrasound when we found Ellis's complications to the 25th week when the amniotic fluid went bone dry to the moments when we lost his heart beat during labor, Ellis wasn't supposed to make it.  We prayed fervently that God would give us the chance to meet Ellis alive and God obliged.  God also answered prayer by giving us peace through the really tough times.  There were many occasions between April 6th and June 27th when God covered us in grace, but the one time that sticks out in my mind was our last few moments with Ellis's earthly body.  It was a moment I had dreaded.  In the hours leading up to saying good-bye I didn't think I could do it.  I thought I was going to have to be physically held back from chasing the nurse down the hallway after she took Ellis's body.  In that time we were covered with peace.  We had a wonderful last couple of moments saying good-bye to our son that I will never forget.  It still wasn't easy but we both felt an overwhelming peace when it came time to call the nurse to take Ellis away.

We also believe that God performed many miracles.  Miracles don’t have to break the laws of nature in front of multitudes of people.  We believe miracles are simply the works of God.  Sometimes God parts the seas or walks on water, other times His ways are more subtle but no less profound.  Ellis himself was a miracle, a wonder of God's creation.  The outpouring of support we received from family, friends, and strangers was miraculous.   The impact of Ellis's short life continues to be a miracle.  His story has been in sermons, Sunday school classes, letters, blogs, emails, and conversations.  God is using Ellis’s life, which lasted less than an hour, to reach many lives.  While we can’t fully understand God’s plan to take Ellis, we believe God has given us just a glimpse into His scheme by letting us see some of the ways Ellis impacted people.   For that, we are grateful.

-Tim

Infinity

Infinity.

     God covers all of that. His love. His goodness. His grace. His wisdom. All of it, infinite. He governs every moment. He holds all things together. He knit Ellis together perfectly because He is God and He is infinitely good. If I don’t believe that, I discredit the essence of who God is.

     Recently, some friends sent Tim and me a book, Trusting God: Even When Life Hurts by Jerry Bridges.  These friends know suffering. They are young, newly married, and life has been uncertain for them these last few months. A diagnosis of leukemia put them in the midst of an intense life storm. Through it all, we’ve watched them remain steadfast in their love and trust of our God. We’re learning from each other, encouraged by each other’s responses to our respective hurdles. In his infinite wisdom, grace, and love God is using others to teach us more about Himself. I’ve only just begun to read the book they sent, but it is already teaching me so much about who our God is and what that means in the midst of suffering.

God never pursues His glory at the expense of the good of His people, nor does He ever seek our good at the expense of His glory. He has designed His eternal purpose so that His glory and our good are inextricably bound together. (p.23-24)

     God in His infinite wisdom, infinite goodness, and infinite power was there when my baby’s brain didn’t form correctly beginning a chain reaction in his body that led to the irregular development of his face, his heart, his lungs, his kidneys, his spine, and even his feet. This God, whose ways are perfect, was the creator of Ellis. I still believe that and I still believe Him to be infinitely good.

     This infinite God cannot be contained, cannot be fully explained, or completely understood. To try to do so as a finite being is impossible. Every explanation or description falls short – that is the wonder of infinity.  The concept is bigger than we can comprehend or imagine, just like every aspect of our God. We cannot adequately describe Him if we cannot explain infinity. It’s humbling. It’s overwhelming. It’s good.

     I hope and pray you’re willing to partner with us in this pursuit to learn about and better know this infinite God. As we’ve already found, God has placed us in each other’s lives to teach, encourage, and grow together. Tim and I know we can’t grasp it all, but we want to discover as much as we can. Please join us, will you?

He does as He pleases…No one can hold back His hand and say to Him, “What have you done?”

-Daniel 4:35

With love,

   Rebecca

The Truth

This coming Monday it will have been 7 weeks since we met our baby boy and held him in our arms. It feels like a long time ago, which is hard. We don’t like feeling so far away from June 27^th, because it makes us feel far away from Ellis. The memories aren’t as fresh and already we begin to wonder, “did it happen this way or that way?” For us, the memories are a mix of joy and sorrow. We met Ellis! But, we also had to give him away. It’s not easy to do that so quickly.

Daily we’re asked, “How are you doing?”Honestly, it’s a tricky question to answer. Sometimes we don’t know what to say, because our emotions are all over the place. In the moments when I’m feeling at peace, I fool myself into thinking I’ll feel this way all day. Only to be kicked in the gut with sorrow or frustration. When I feel deep in the pit, I think I might never get out, yet joy and peace find their way in. So, to answer your question: We’re doing OK…I think. We have moments of joy, sorrow, peace, and frustration. Sometimes, all in a row (practically simultaneously), but from what I hear, that’s OK.

As Tim and I navigate this path, there are three thoughts I keep running into. You know when you feel like God’s really trying to teach you something because you keep hearing or reading the same idea over and over. Well, that’s me right now. Ever since April 6^th, when we heard something was wrong and knew our lives would be changed because of it, I kept coming back to the simple truths about God I’d been taught my whole life. These three truths have been in my thoughts frequently these last few weeks.

1.       We are in the midst of God’s perfect plan for our lives. Strange isn’t it? Life doesn’t feel perfect right now, yet I know God is sovereign and I believe His ways are perfect. This is part of God’s plan for our lives. I don’t fully know why, but I know I can trust His will for my life.

 “This God – his way is perfect”  
-Psalm 18:30 (ESV)  

2.       God’s grace is sufficient. It’s bigger and greater than my biggest and greatest problem. Those low moments we find ourselves in are not without hope, because we KNOW God’s grace still covers us there. And it is He who carries us through those valleys. It is in God’s nature to give abundantly and He gives us a bottomless ocean of grace.

 “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” 
- 2 Corinthians 12:9 (ESV)

3.       He is near. These last four months have been hard and there have been moments, days, and weeks when we felt like we were just scraping by. But, I can say with confidence that I have never experienced the nearness of God like I have in these last four months.  There are days ahead that can bring me to my knees with fear and anxiety, but thoughts of those days are coupled with the knowledge that God is near. I have never been more certain of that in my life.

 “But as for me, the nearness of God is my good”
-Psalm 73:28 (NASB)

Today, nearly 7 weeks since Ellis was born and died, we are thankful to know that our God is good. He is so very good.  

“Give thanks to the LORD, for he is good. His love endures.” 
-Psalm 136:1 (NIV)

With love, Rebecca

Ellis's Life in Pictures

We didn't have much time with our little boy, but the time we had was precious. We tried to capture as many moments on camera as possible. These pictures give you a glimpse into the short time we had with Ellis.

The song used in the slide show is significant to us. After we found out about Ellis's complications, a few people recommended the book I Will Carry You by Angie Smith. Angie is the wife of Todd Smith, one of the members of Selah. A few years back they had a similar experience with their sweet little girl Audrey Caroline. Rebecca read the book back in May, during a particularly difficult time when we weren't sure how long Ellis would be with us. Angie's words communicated so much of what we were feeling and experiencing. We found out that Selah had written a song in honor of Audrey. Two versions were made: one for the loss of a baby girl and one for the loss of a baby boy. In the week following Ellis's birth and death, we spent hours sorting through his photographs, choosing the perfect ones for the slideshow we'd share at his memorial service. We immediately knew we wanted to use the song I Will Carry You, but couldn't find the "boy" version anywhere. Rebecca had emailed with Angie after reading her book and took a chance by asking her where we could find the song. Angie so kindly passed on a copy of the song to us to use with the slideshow. We are so grateful. The words so perfectly convey our thoughts.

We wish we could have shared Ellis with each of you in more real, tangible ways, but we are so glad to share what we have with you. We hope that as you watch the slideshow you will be able to sense the joy we had in meeting Ellis. We miss him terribly, but are thankful for the way these pictures spark our memory.

 

Happy Anniversary

Just over a week ago we celebrated our fifth wedding anniversary. Simply put, it was good. We felt like we celebrated that day. We remembered the moments between saying, “I do” and celebrating five years of marriage and there were so many wonderful things to remember. Heading into marriage we knew there would be trials ahead. That was a given, but we didn’t worry about it on that day. With blissful ignorance of what events might change the way we think, live, and love, we chose to assume that we’d be happy and able to face those trials as long as we were able to do it together. Now that we’ve weathered the storm, I can say with confidence that although we didn’t know what was to come when we celebrated with friends and family on July 8, 2006, we were right.

The community that surrounded us then, surrounds us now. The better part is that a host of others we didn't know then are a part of our journey now. We're so very thankful.

Lesson from Ellis

I've been encouraged by a few people to post what I shared at Ellis's service. It is a bit long for a blog post so here is a link to a pdf of what I said.

Tim 

Two Weeks Later

Somehow two weeks have managed to pass by. It seems strange that two weeks ago, Ellis was still growing in my womb. At the start of that Sunday, I thought he was still safe. I knew he wasn’t healthy, but for the time being, he was safe. This morning when I woke up, it felt so much like that Sunday, except that the absence of Ellis was piercing my heart. I know he’s in Heaven…it brings me joy when my heart is feeling especially heavy, but sometimes Heaven seems so very far away. I want to picture him there, but sometimes I can’t. I often pray that God will give me glimpses of Heaven and what Ellis’s life might be like there.  

I’m reading a book by Randy Alcorn titled Heaven. It’s putting details into what my imagination had already begun to envision, but I think God is helping me to see what that place is like. Reading about it and pondering it helps it to feel not so far away. Our little Ellis taught us so much these last few months. He helped to set my sight on eternity. Although I knew this was the ultimate as a child of God, I don’t know that I truly lived it until now. God created us for more than our years here on this Earth. He created us with eternity in mind. Our little boy, the one whose breaths only lasted a few minutes, is the one who taught us that lesson. It’s humbling. And thankfully, God is gracefully using it to bring me joy. There is joy in knowing that Ellis is already living out his eternal calling.

With love, Rebecca

Letter to Ellis

I wasn't sure what would become of this blog after Ellis was born. We started it with the intention of keeping people informed, allowing them to pray more specifically for us. Some have asked me if I will continue to write now that Ellis is gone. While pregnant I spent alot of time reading the written words, through books and blogs, of those who had experienced the loss of a typical pregnancy, a "typical" child, or the life of their child. Those words have been encouraging and educational to me as we've walked this unusual path. Now that we are on this side of things I continue to journal, just as I did before. Writing has been a healing process for me and I hope to continue. So, for now, House of Hope will be a place to continue telling Ellis's story and share our thoughts as we process this experience and heal. I hope my words can be an encouragement to others. Thanks for being with us throughout this journey. We have loved sharing Ellis with each of you.

Below you will find a letter that was a compilation of two different journal entries I wrote in the days after we met Ellis. My sister, Sarah, was kind enough to read this for me at the memorial service this past Friday.

My sweet Ellis,

      Monday was your Birth Day. On that day, you blessed us in a whole new way. You came to us. You took a few breaths and your heart beat to the sound of life. You came feet first –leaving your footprint on our world. Daddy and I were scared about you coming, because we knew you’d probably be gone so soon. But, you came and we loved every moment we had with you. We long to hear your beating heart again, like we did as we waited for you to come in that hospital room. We hated to say “Good-bye,” but are so glad we got to say “Hello.”  There is joy in knowing you are home with Jesus.

       I love to picture you running, jumping, and laughing in heaven. My heart is full knowing the joy and freedom you have there. You’re worshipping the Lord fully there, perfectly fulfilling your purpose as a sweet child of God. Daddy and I can’t wait to see you there someday. It gives us hope and helps us push through the days.

      Ellis, your Birth Day was so special and there aren’t words to adequately describe it. I held you in my arms on that day. I don’t ever want to forget how that felt. I want to remember the excitement of hearing Daddy say, “He made it! He’s alive!” I want to remember seeing your full, dark head of hair, feeling your soft skin, smelling your fresh baby scent, and noticing your chin looked like Daddy’s. I miss having you here. I think about how I carried you in my womb and in my arms. I miss your kicks and tumbles. I miss hearing your heartbeat. I miss your long fingers wrapped around mine and your soft, rosy cheeks.  Your earthly body is what I picture in my mind, but I’m sure your heavenly body won’t compare.

      It’s difficult for my mind to stop thinking “pregnant,” where my every thought was, “What does Ellis need right now?” I thought about you all the time. From the way I made sure to lie on my side as I slept, to choosing the right food, to praying over you when I would wake in the night. How could I not think of you in every action when you were my constant companion? You needed me. And now, you don’t. Although Jesus met your needs better than I could while you were here, He is certainly providing for you now. He’s healed your body completely. I can’t stop imagining what that must be like. You are perfectly healthy and whole in ways that you weren’t while you were here. Our big God is so good, but, of course, you already know that…much better than I do.

       My sweet baby, there are hard days ahead for your mommy and daddy, but we are at peace knowing you are in a much better place. I’m praying Jesus will share my written words with you. I can’t wait to be with you again. You will have to show me the best parts of Heaven. For now, I’ll worship our big, good God with you from this place. I love knowing that is something we can still do together.

                I love you, Baby Bear.

                                -Mama

Part 3: Going Home

Part 1 and Part 2 of the story.

Our hearts were full. He was here. And, he was alive! We saw him gasp for a few breaths and felt his body move in our hands. For us, those were sacred moments. Ones we will never forget. Although he only breathed for a matter of minutes, his heartbeat lingered for a while longer. During that time Grandma Linda, Grandpa John, Aunt Sarah, and Aunt Hannah got to meet and hold him.

The rest of the day was truly beautiful. We were able to hold our son, take pictures, and share him with family. Tim's parents and brother, Nate, all made it there that day as well. Uncle Matt, Aunt Molly, Aunt Heather, Uncle Scotty, Aunt Lydia, and Uncle Dave were all there via skype and phone calls throughout the day. We wish we would have had more time to spend with Ellis and to share him with our family and friends, but God gave us a great gift in what we had that day.

Another blessing was the incredible medical staff who took care of us during our stay at the hospital. Every nurse and doctor showed compassion and respect while dealing with such a difficult situation. We felt they truly cared for us and Ellis. It helped make the day more sweet.

At the end of the day, we had a time of prayer with our family. It was a time of thanksgiving for Ellis's life and to say good-bye to his earthly body. After our extended family left, we had time to say our final good-byes and spend a short time together as a family. We journaled with him in our laps, read him one more story, took a few more pictures, gave him one last kiss, and said good-bye. God covered us with grace and peace in that moment.

We miss our boy, but celebrate that he is healthy and whole in Heaven.



Part 2: Hello Ellis

Part 1 of the story can be found here.

As Sunday night progressed into the early morning hours of Monday, Rebecca was able to get some rest. With Ellis's heartbeat as the continuous soundtrack, Tim stayed awake and waited. Rebecca's family arrived around 2:30am. We were so grateful and relieved to see them. It was hard to believe only a few hours earlier they had been home in California. After hugs and hello's, they decided to wait "with" us in the hospital's waiting room instead of going to Rebecca's sister's house to sleep.

The contractions continued to grow in strength and frequency. With each contraction, Ellis's little heartbeat began to waver. Our growing fear was that we would not be able to meet him before he left us. The nurse and the doctor both came to see if we wanted to continue monitoring Ellis's heart. We wanted to hear his heart as long as it had life and so kept the monitors in place. The next hour and a half we had as a family, we will never forget. As the monitor would periodically lose Ellis's heartbeat, we pleaded with God for the chance to meet Ellis. Each time, his little heartbeat would resume. In between our prayers, we read books we'd read to Ellis throughout the pregnancy, as well as our favorite portions of Scripture. We are so glad we had that time as a family.

When we weren't sure how much more time we had with Ellis, we both heard a strange noise. Rebecca's water had broken. The doctor told us it was time. The next 15 to 20 minutes seem like a blur, but in that time we experienced the miracle of life. He surprised us all by coming feet first. The greater surprise was the doctor handing Ellis to Tim and Tim exclaiming, "Rebecca, he made it! He's alive!"

Part 1: It's Time

As promised, we wanted to share more about Ellis's life and the opportunity we had to meet him. We will share the story in parts.

Last Sunday began in a very typical fashion. We had no reason to suspect that anything was different and, in fact, we were quite at ease considering the journey we'd already been on for almost 12 weeks. Soon after waking Rebecca noticed something of concern and decided to call the doctor. He suggested coming in to see him at Labor and Delivery. So, we grabbed our hospital bag and went to the hospital, nervous, but not really thinking this would turn into anything. Rebecca remembers praying that God would prompt others to pray for us at that moment. The uncertainty of the last few months was only multiplied in our hearts as we drove to the hospital.

The doctor monitored Rebecca for a couple of hours, noticed she was having irregular contractions, but decided to send us home with directions to return if the contractions increased in pain and frequency. We left feeling relieved, but aware that something had changed. We had a sense that we'd be meeting Ellis soon, but thought we might still have a little bit more time to prepare. Hungry after a long morning at the hospital, we enjoyed brunch together and then spent the afternoon resting at home.

Rebecca felt contractions on and off throughout the afternoon, but nothing was consistent, although she could feel them with greater intensity. Around 4:40, a series of contractions began that were not only consistent, but continued to grow in strength. Before an hour had passed, Rebecca had 6 contractions and we called the doctor back. He asked us to come in so he could monitor further, but indicated we might be able to go back home either late that night or the next morning. We left for the hospital worried that this might be the real thing. With so many stable appointments in the past month, we had fully expected this moment to be coming in a number of weeks, not hours. It was daunting, but God gave us grace in those moments. This included the willingness of Rebecca's sister, Sarah, to come back to the hospital with us that night. We were so glad to not be going in alone.

After the first examination, the doctor decided to keep us overnight, but things still seemed a bit precautionary. We had contacted our families, letting them know we were going to the hospital, but still thought this could be a false alarm. Rebecca's parents and sister, Hannah, decided to do what they could to catch the last flight out of San Diego that night. It was a moment where they had to make a decision without much information to guide them, but they felt the nudge to go and so they did. They got the last 3 seats on the plane and began their flight to Chicago. We were relieved they were on their way, but didn't know if we would be welcoming them only to say, "Well, he's not coming yet."

By 9pm, the contractions had again grown in strength and regularity. The doctor's examination found that labor was progressing. We began to realize that Ellis was on his way and that by sometime the next day we would be meeting our son.

Thank You

Today we will gather to celebrate Ellis's life. We miss him so deeply, but are glad to be able to share his life with others today. To those who are going to be able to make it to the service this afternoon, thank you. To those of you who can't come, we are blessed by your love from afar. Thank you.

Thank you for loving Ellis with us. If anything, we know this little guy has been loved and that means so much to us.

Donations

In lieu of flowers, we would ask that donations be sent to Families for HoPE or Now I Lay Me Down to Sleep. There are links to both organizations on the sidebar of the blog.

Thank you for your kindness, love, and support. We are blessed by the love each of you have given.

Memorial

A memorial service for Ellis will be held at 4:00 pm on Friday, July 1 at Parkview Community Church in Glen Ellyn. The church's address is 764 St. Charles Road.

This is an open service. We would love to have you join us in a celebration of Ellis's life.

Soon we will post an update with some details and pictures from Ellis's birthday, but we are way too tired right now.

Welcome little guy

Ellis Timothy Henry was born at 5:08 this morning. We were able to meet him and cherish him while he was full of life. Ellis has gone home to meet his Savior.

Happy birthday buddy. Love, Mom and Dad.

Baby Bump

There are some curious to see how big Ellis is getting. So, here we are: Henry Family Photo at 32 weeks!

Not much has changed...

Well, another week, another appointment, another "things are looking about the same." Fluid is still on the low end, but Ellis's little heart is beating strongly and that makes the doctors (and us!) happy. The doctor said he doesn't worry too much about fluid levels being low if the baby's heartbeat is strong and there isn't any cord compression. So, for now, we continue to wait, hope, and pray.

Conversations with the specialist and my regular OB brought up a few interesting things for us to consider this week:
1. My doctor recommended we begin looking for a pediatrician for Ellis. I was so surprised to hear him say this. It felt so good to hear him talking about the future with a positive outlook. This doctor has been wonderful and very kind, but he's been very careful to not paint any rosy pictures for the outcome of this pregnancy. I think he's pleasantly surprised by Ellis's strong heartbeat and continued growth at this point.

2. The specialist said that as we continue to keep an eye on things, he and my OB will be discussing the possibility of intervening early, if necessary. He isn't saying this is the direction we're headed, but that they're open to it if it provides a better outcome. There's a lot to consider with Ellis's development and his breech position in the womb. Either way, we're thankful for the good relationship our two doctors have and their desire to do the very best for us and Ellis.

Looking back over the last couple of months, it's hard to believe this is where we are. If you had told me at the beginning of May Ellis would still be here and that he'd still be happily growing inside of me, I would have cried tears of joy. At that point we thought it very likely that he wouldn't be here anymore. So, despite the continued waiting and longing, we are so thankful to be enjoying each new day with our little guy. Tim and I are striving to make the most of every day, recognizing that each is a gift. We find great joy in the little things, like his squirms and pokes, but also find that each new joy is followed quickly by sadness. Without knowing the outcome of this situation, we always wonder if this is the only time we'll have with him. Regardless, we're thankful for this time. And we're thankful for you. Your prayers, care, and concern continue to be a great blessing to us.

With love,
Tim and Rebecca

June 14 - Update

Today's fluid check revealed a decrease in amniotic fluid, but the doctor did not seem too concerned. He seems to think that our fluid levels are just going to fluctuate like this. So, we're praying that he's right and the fluid levels go back up again soon. Otherwise, he indicated that everything else is looking about the same. So, another "status quo" appointment. We're always a bit relieved when there isn't any bad news delivered at an appointment, but we, of course, would love to receive really good news at an appointment. Such is the nature of this experience.

Thank you for all your prayers today. We're feeling very at peace today and know that so many of you have prayed that would be true. We're blessed by the love and support each of you provide.

Each new day with Ellis is another one of thanksgiving for us. We hope God will grant us many more. We'd love to share our little gift with each of you.

With love, Tim and Rebecca

Next appointment

We see the specialist again on Tuesday morning. As usual, we appreciate your prayers during this time. This week's appointment is a fluid check, but they usually take a peek at Ellis's brain, heart, and bowels. We go into every appointment unsure of what's to come. Always a little apprehensive, but hopeful. We love getting a chance to see our little guy on the screen, but it's not easy to hear about his problems week after week. We're looking for hope and joy in these days. Thanks for supporting us in this.

With love, Tim and Rebecca

Fluid Check

Today we went in for a fluid check with the specialist. Although the numbers were slightly lower from last week, they were still within the normal range! A quick scan of the other majors (his brain, heart, and bowel) looked about the same. We're thankful for a "status quo" kind of appointment. Every time we go in we're hopeful that we might hear some good news, but for now, no change is good news.

As always, thank you for the love, prayers, and support. We feel blessed to know that Ellis is loved by so many.

With love,
Tim and Rebecca

June 7 - Update

Yesterday we met with the head neonatalogist at our hospital. There are a few things to be very thankful for here. One, our hospital, the one we would've been at no matter the circumstance, is partnered with Children's Memorial. They have a Level III NICU, which is the highest level available. Second, this means the neonatalogists work out of our hospital and Children's. We know these doctors are good at what they do. Third, this doctor was wonderfully kind and knowledgeable. He also comes from a similar faith background to us, which is no small thing for us right now.

With the doctor, we discussed what it might be like for us and Ellis after delivery. He talked us through some of the scenarios we might encounter and decisions we'll need to make. He also explained the varying levels of intervention, as well as what it would be like should we decide "heroic" intervention is not what would be best for Ellis. These are hard things to talk about. These are scary things to consider. But, we are thankful to have the time to think through it. So often, we remind ourselves that some people find themselves in these situations at delivery with no warning. They are asked to go through the shock and grief while making heavy decisions. Please pray for us as we consider the birth and care plan for our little guy. We have no idea what his needs may truly be, but we need to be ready for anything.

Something else he made clear to us yesterday is that Ellis's ability to breathe at birth will be one of the most crucial indicators of survival. Along with all our other prayers for Ellis, we are praying that his lungs will develop strong and healthy. We're praying for healing, all the while asking for God's grace to meet us no matter the outcome. Thanks for praying and waiting with us.

With love,
Tim and Rebecca

May 31 - Update

Well, we've made it through another week. Tomorrow marks 8 weeks since we found out about the possibility of complications. 8 weeks ago today we were functioning under a very different, much more carefree, mindset and yet today, we still have so much we are thankful for. One being the overwhelming love and support of family and friends. We've learned to lean heavily on others when our own strength is weak. God has placed us in the midst of some wonderfully kind, supportive, and sensitive people.
One of the ways in which people have cared for us is through prayer. Many of you saying, "I don't know what else to say or do, but I wanted you to know I'm praying." Friends, prayer is the best thing you can do for us and we never tire of hearing that someone else has joined us in doing so. So many of you have shared our story with others, allowing countless numbers to be flooding heaven's gates with our requests. I know God already knew all about Ellis, even before we did, but I'm confident that the names Tim, Rebecca, and Ellis are familiar to him now. I've been told time and again that our emails are being forwarded on to people's friends, family, co-workers, neighbors, etc. So, in order to make it easier to share updates and specific prayer requests I've started a blog. I will post updates there and those of you who care to receive updates via e-mail will still be able to do so, as you can "subscribe" to the blog by typing your email address into the form. Feel free to pass on our blog's address to anyone who might be interested. You can find us at http://henryhouseofhope.blogspot.com/.
Today's appointment went relatively well. Ellis is definitely growing, although his head is still measuring quite small. The doctor is seeing some possible malformations in the area of the eyes and nose. All of this would contribute to his diagnosis of HPE. The development of his brain is our greatest area of concern for Ellis. As you pray, please keep his little brain and sweet face in mind. Some of the good news is that fluid levels went up again this week! We are well into the "normal" range and this contributes to less cord compression and a healthy heartbeat. The doctor spoke optimistically about carrying to term and the likelihood that Ellis would tolerate a typical delivery. This is an answer to prayer for us! Ellis's bowels continue to be dilated, but even at the point of build up we were able to see where the bowels are continuing to try and push the fluid through. We're praying that we would be able to see improvement in that area of development as well.
So, despite exhausting appointments that are nothing like what we envisioned going through 8 weeks ago, we are thankful for the good news we heard today. Perspectives can alter greatly in the midst of such circumstances. Although we are daily tested, there is so much that is changing us for the better these days. We are learning a great deal about having the courage to hope and the faith to believe in prayer. In the last week alone we've been up on our feet rejoicing in the miracle of a friend's healing of cancer, only to be back down on our knees pleading on behalf of another friend's diagnosis. Joy and sorrow are so closely intertwined.

Thanks again for praying with us and for loving our little boy. We are truly blessed.

With love, Tim and Rebecca

Ellis's story: May 2011

The letters below were written as e-mails. The story began in April. We write as the story unfolds.

May 3, 2011

Dear friends and family,

 Our ultrasound today showed there to be little to no amniotic fluid surrounding Ellis. This most likely means his kidneys are no longer functioning, as there was fluid a month ago when we last did an ultrasound. This new development is of great concern to the doctors and has set us on a new course of direction. Without amniotic fluid, it is likely that Ellis would miscarry before coming to term and the best opportunity we can give him is to deliver within the coming days or weeks. At this stage in the pregnancy, 25 weeks tomorrow, this obviously carries significant risk as well. This is particularly true for a baby like Ellis with many other complications already known. His chance of survival is very low. Today I was given the first of two steroid shots that could aid in quickening the development of his lungs.

 We have many hard decisions to make in the coming days and are obviously still processing this hard news. We still believe in a God of miracles and continue to pray for one right now. But, our hearts are heavy with the reality of losing our baby boy so soon. Please pray with us as we navigate this new path.

 With love,

Tim and Rebecca

May 9, 2011

Dear family and friends,

Tomorrow we go back to the specialist. We do not know what tomorrow will bring, but I guess we never did before either. Today we are more painfully aware of how little we know about what lies ahead, but we are so very sure that what is to come is already known by the God who loves us and is forming Ellis right now. This past week has been one of questions and worry, but also a deep reassurance that God is caring for us, even in this. We have been absolutely amazed by the widespread impact of Ellis' story. People we don't know sending us cards and emails. A group of  8 women fasting together for two days in earnest pleading on our behalf and only one of them has met us before. A man's passion to minister and serve restored as he began to fill heaven with requests regarding our comfort and Ellis' healing. These kinds of things amaze us as we dwell in this uncertain time of life. Thank you for caring for us through meals, phone calls, cards, emails, kind words, and prayers. For those who work with me, you've written my sub plans and made it so I don't even have to think about what is happening at school. It means so much. Thank you. Despite all the heartache and worry, our hearts our full. We are blessed by each of you.

 We'd like to ask you to join us in prayer for tomorrow. The doctor will be checking amniotic fluid levels and Ellis' current condition.  Decisions will need to be made and they are not easy. We are still boldly asking for a miracle and hope that tomorrow may provide us with that. Our appointment is at 10:30. We're asking for clarity in conversations with the doctors, wisdom as we make decisions, and peace as we enter unchartered waters. Ellis' heartbeat was strong again today and I have felt his kicks with great frequency. We are learning to experience the joy of these things amidst the sorrow of what may come. It's a delicate dance.

 With love,

Tim and Rebecca

The LORD your God is with you, the Mighty Warrior who saves.

He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.

-Zephaniah 3:17

May 10, 2011

Dear friends and family,

 Today's ultrasound revealed that amniotic fluid levels are still very low and Ellis' already known complications are causing further difficulty with his growth. We went in today thinking we might be scheduling a c-section for the coming week or so. That plan has now changed. The c-section would pose signigicant risks to any subsequant pregnancies, as well as my own health. It seems likely that Ellis will not tolerate a typical delivery, but we do not know how long he can survive without amniotic fluid. We will be checking back in with the doctor on a weekly basis to monitor his well-being.

 Our hearts are heavy and hurting tonight as it is likely that we will have to say good-bye to Ellis before he makes it here. Of course, we still believe in miracles and will continue to earnestly pray for one. In fact, this really just gives us more time to do so. But the fact of the matter is the reality of this situation is just plain hard.

 Thank you for praying with us today and on into the coming days. It gives us great strength.

 With love and thanks,

Tim and Rebecca

May 17, 2011

Hi everyone,

Today we had our standing weekly appointment with the specialist. We were happy to find out the ultrasound tech, Janet, we had at our first Level 2 was going to be conducting the fluid check today. She is a truly kind woman and makes it a little bit easier to endure the appointment. When Tim stepped out of the room for a moment she graciously asked me how he was doing. As she laid her hand on my shoulder, she offered her sincere condolences and wishes to be able to do more to help us. It may seem like these are such tiny gestures, but in the midst of this storm it is so encouraging.

 The fluid check revealed an increase in amniotic fluid. Although this sounds like a positive, it is a likely indicator that Ellis's bowels are not absorbing the proper amounts of fluid. The increase in fluid did give the doctor a chance to see some things a little bit more clearly on the ultrasound. Last week he had indicated a possibility that Ellis has something called holoprosencephaly. This has to do with how the brain develops. (Unless you truly feel the need to, I wouldn't recommend looking up holoprosencephaly...some of it can be quite alarming). Basically, the front and top of the brain are not fully forming. This does not carry a very positive prognosis. It can also cause some serious impact on the way a baby's face develops. We had been warned about holoprosencephaly weeks ago, but it is hard to hear that this is Ellis's likely diagnosis.

 Currently, we are in a bit of a holding pattern. Ellis's heartbeat continues to be strong and we feel him kick and squirm with great frequency. For now, it seems like he is content in his current home. We go back in to see the specialist every week, along with regular OB appointments and meeting NICU doctors. We are thankful that the specialist we are working with has actually seen and worked with holoprosencephaly cases before. This is not always the case, as it is very rare.

 We are learning to savor every moment we have with Ellis. Both Tim and I have decided that THIS is our time with our little guy and we are going to cherish it. Now is our chance to love him fiercely, make sweet memories, and care for him as our son. So, despite the sadness and desires for the circumstances to be otherwise, we are choosing to celebrate Ellis's life while he's still here...however long that may be. We feel blessed to be Ellis's parents and thank God for this precious gift.

 Thank you for the continued prayers. It is holding us up and carrying us through this valley, especially during the moments when we feel like we might not ever climb out. We are thankful that God's mercies are new every morning and that we don't have to go through this alone.

 With love,

Tim and Rebecca

May 24, 2011

Hi everyone,

 We went in for our fluid check today and found that the fluid levels remained at about the same level as last week! The numbers are slightly lower than what's considered "normal," but still above the number where they begin to be concerned. Since today was not a full ultrasound, they did not check on every part of Ellis's development. What they did look at (his bowels, heartbeat, and brain) looked about the same. The good news is that the increased fluid levels have allowed the cord to move more freely and help his heartbeat to be at a normal rate and rhythm again. Although the major concerns are still a reality, it was nice to hear about something working right. We were also blessed to have Janet as our ultrasound tech again. It's amazing how the little things can make such a big difference. So, for now, Ellis seems content to hang out in his little home. He's definitely growing. Next week we'll be able to measure during the ultrasound.

 For those of you who are interested in learning more about holoprosencephaly (HPE, for short), we wanted to pass along a website that we find helpful. HPE is a rare condition, that is often misunderstood, even in the medical community. We're finding that it helps to know where to look to find the most recent and accurate information. http://www.holoprosencephaly.net/Holoprosencephaly is one such site. We don't put this out there to expect you to become an "expert" on HPE, but more so for those of you who are curious to know a little bit more. Because HPE is hard to diagnose in utero, it is hard to know what Ellis's true problems might be.

 Thank you for continued prayers for us and Ellis. We are so incredibly thankful. You've supported us through prayer, making meals, sending cards, giving gifts, e-mails, phone calls, meeting us for lunch, and more. We feel very supported and loved these days.

 With love, Tim and Rebecca

Ellis's story: Beginning in April

The following letters were written as e-mails. They were written as our story unfolded. If you are new here and want the full story, this is the place to start.

Morning of April 7, 2011

My sweet friends,

  I'm coming to you this morning with an urgent request. Our ultrasound yesterday did not provide the joy and excitement we anticipated. The doctor found something that is cause for concern. Right now, we don't know a lot. We are supposed to meet with a high risk pregnancy ob-gyn today, as well as receive a level 2 ultrasound. Friends, please pray with us. Our hearts our terrified. We trust and believe in a God who can move mountains. I know my baby is on his mind, especially as there have been many flooding heaven with prayers in the last 15 hours. We're praying for a miracle, but also for the strength and peace needed to face whatever outcome.

  I'm deeply thankful for each of you and would so appreciate you joining Tim and I as we plead with God for the safety of our baby.

 love, Rebecca

Evening of April 7, 2011

Friends,

What a long day it has been. Our world has dramatically altered in the last 24 hours. Today we learned that our baby boy has problems with his kidneys, bladder, heart, spine, and brain. It is very likely that this is due to a chromosomal abnormality. The prognosis for our baby's life is not good. His possible syndrome may not be compatible with life. If he makes it to term his life will be fraught with challenges and could only last a few weeks. . An amniocentesis was done today to determine what possible chromosomal abnormalities have impacted the baby. We should know within a day or two if it is a lethal syndrome. Further results will come within the next week or two. We are still praying for a miracle, but also preparing our hearts and minds for what this news means.

 We've been so blessed by the outpouring of love, prayer, and support from family and friends today. This journey has only just begun for us and it is hard to look too far ahead. Please keep our baby boy and Tim and me in your prayers. We are thankful to know we are not going this alone, but our hearts are hurting right now.

 Love to each of you,

Rebecca

April 11, 2011

Dear Friends,

 Thank you so much for the emails, phone calls, and texts. For those of you at work, some of you have written my sub plans, made copies, and filled in the gaps that I couldn't while away. It's been an immense help. More importantly, thank you for your many prayers. Showing your love to us in this way means more than you know. This has been a hard and dark journey, but through it all Tim and I have been overwhelmed by God's goodness to us. He's been faithful, even when it seemed like there was no way out of this mess. I am amazed at the change in our hearts and minds even since Friday morning. Your love and prayers have strengthened us.

 My parents flew in Thursday night. This was also a huge blessing for us. It has been wonderful to have them close, ready to listen, to cry, and to lavish hugs. My mom and sister won't let me lift a finger and so have cooked all our meals. As we speak, my mom is cleaning out my impossibly dirty refrigerator...without any judgement! Through all of this, God has helped us to see the good, despite all that seemed so bad.

 This morning we spoke with the doctor we met on Thursday. (Another one of the "goods" in our life these days. He is very kind and calm. He's been a wonderful help). We were able to discuss the preliminary FISH results from the amniocentesis. This portion of results came back normal, letting us know that our baby does not have abnormalities in chromosomes 13, 18, or 21. This would most likely indicate our baby does not have a syndrome incompatible with life. The rest of the amnio results will come by next week. This will let us know about the rest of the chromosomes. Obviously, there are still many significant issues with our baby's development, but we are encouraged by this bit of information.

 The situation is still serious and we don't quite know what to expect in the future, but we will be meeting with a geneticist and some pediatricians to learn more about what kind of difficulties our son is likely to face. We would appreciate continued prayer on behalf of our baby's development and health.

 As you pray, we wanted you to be able to pray for our baby by name. So, we've decided to share this with all of you. Ellis Timothy Henry has been a blessing in our lives already and we pray that we can enjoy him for a very long time. In fact, we'd love for you to meet him some day.

 Today's news, although not wiping away all of our worry, gives us great hope that we will actually MEET our baby boy and have the opportunity to care for him.

 Again, thank you. We could not have made it through these last few days without all of you who have rallied around us. I am blessed to count each of you as friend.

 With love,

Rebecca

April 16, 2011

Hi everyone,

 We just wanted to send out a little update regarding Ellis. Tim and I met with the geneticist yesterday. It was a bit overwhelming/exhausting. I feel like we left with more questions than answers, but that is where the doctors are at right now too. I think Tim and I are a bit of a puzzle to them, as there is nothing in our health or family history that would indicate this should be happening. The geneticist basically presented us with a number of hypotheses, but nothing definitive. She does have a plan for narrowing down a possible diagnosis, but she also said that we might just have to wait until the baby is here. Her hypotheses vary in level of seriousness, some sounding more hopeful than others.

 The next step is for us to meet with the maternal fetal specialist again to do a 3-D or 4-D ultrasound...this would give them a better picture of what is happening developmentally. Depending on what the rest of the amnio results reveal next week, they may be sending out the chromosomes again to be looked at under an even clearer picture. These results could take a few more weeks. We will also be meeting with NICU doctors to find out more about what they do there and what our wishes are for Ellis's care. Depending on what the next level of ultrasound shows us, there is a possibility they would do an MRI to find out more. Clearly after this whole conversation, I went home and took a long nap.

 We are still hopeful after receiving Monday's news about chromosomes 13, 18, and 21, but there is still so much unknown. It is still scary and we often find ourselves just worn out by the whole thing. Thank you for your continued prayers and support. I know I've said this before, but Tim and I have been overwhelmed by the love and care others are showing us during this time. There are people praying across the country and even around the world. Many who don't even know us! We are so thankful that others are willing to plead on our behalf. No matter the outcome, we know that Ellis is a blessed and loved little boy. Thank you for loving him already.

 As you pray, here a few specific requests:

-The doctors are most concerned about his brain. They weren't able to get a good look at what exactly is happening there and this could give us a better idea regarding life expectancy. We are praying for healing in this area of his body, specifically.

-Tim and I returned to work this week. It's been an adjustment to get back into a regular routine. We are in need of an extra amount of strength to make it through the days.

-This experience has obviously been a roller coaster ride. We are thankful for the grace that has been shown to us thus far, but are aware that we'll need God's grace to carry us through. This isn't going away today or tomorrow and the days ahead seem long.

 This week a certain line from a song struck Tim and I and I wanted to share it with you.

"For the risen king has given us this gift to love."

 This is exactly how we feel about Ellis and are thankful for the love that others are showering on us and him as well. Our desire is to love this little guy with everything we have. Our prayer is that we will have a long opportunity to do so.

 With love, Rebecca

In my tiredness, I forgot to add one little thing.

This morning our hearts were encouraged by something we hadn't experienced before.

 I've been feeling Ellis move for weeks now, but just yesterday I started to feel what I thought were kicks. This morning I felt it again and was able to feel the kicks with my hand. Ellis kept kicking, which meant Tim got to feel it too! Such a gift. I was feeling a bit worn down when I woke up this morning and those little kicks gave me a new burst of energy and hope.

April 27, 2011

Hi everyone,

 Just wanted to send out a quick update. We don't really have any new news as we are still waiting for the rest of the amnio report to come back. We are told it should be ready in a day or two. Today marks 3 weeks since we had our first ultrasound. Life has changed since then and time seems to have evolved into eternity. We look ahead to the future with a variety of fears, but know that just as God has carried us through this valley so far, He will go with us in the days ahead. My perspective on everything has changed and I'm thankful for what we've been learning so far.

 Our next ultrasound is this coming Tuesday, May 3. We, of course, have no idea what this will reveal. As much as I want to be prepared for any circumstance, I am praying for miracles. What a joy it would be to see little Ellis growing the way he should at this point in the pregnancy! His FREQUENT kicks and tumbles are such an encouragement and provide some of that hope we are searching for right now. A visit to my OB last week also allowed us to hear his heart beating strong.

 Listed below are some of the things we'd like to ask specific prayer for:

1. Amnio results and upcoming ultrasound...our hope is that some definitive news can be discovered from these tests. Of course, we're still praying for miracles. :) (Just as a reminder to you: we are praying about his brain, his heart, his spine, his kidney, his bladder, and his size).

2. Other upcoming doctor visits...We're finding that each and every doctors' appointment is draining, emotionally and physically. Even if we hear nothing new, the appointments make the reality of this situation so heavy on our hearts.

3. Back to work...We've both gotten back into the swing of things at work. We have good days and bad days (sometimes it's more like good moments and bad moments). We're thankful for the support we've received from friends, family, and co-workers and even enjoy some of the distraction work brings, but emotional exhaustion bears down heavy when trying to maintain a normal routine.

4. Worries about the future...we obviously have no idea what the future holds. The plans we had made for this coming year are on hold and that's hard. Aside from the excitement about becoming parents and welcoming a little baby into our lives, we were looking forward to some of the changes we would be making as a family. For now, we don't know what any of that looks like.

I'm so thankful for each of you. Thank you for your prayers, emails, cards, phone calls, and support in other ways. Tim and I are so thankful to not be making this journey alone. What a blessing our friends and family have been...each of you are a part of that. So, thank you.

 With love, Rebecca

April 30, 2011

Hi everyone,

  Yesterday we received the results on the rest of the amnio. The results were normal! (This means that all of Ellis' chromosomes appear to be normal. Genetic anomalies can exist outside of a chromosomal abnormality, but these results tell us there are no duplicated or missing chromosomes). Although not knowing what to expect, Tim and I were both surprised by this. We are thankful for what sounds like good news, but don't fully know what to make of the results either. We have another ultrasound scheduled for this Tuesday and hope that more information can be found then. Further testing will also be done on the chromosomes to get a closer look at each individual band. For now, we are choosing to be thankful with the latest results and are allowing it to bring us some hope about what's to come. Obviously, we still have no idea what lies ahead on this road and we continue to approach things day by day.

  I know I've said this a thousand times, but we are so thankful for the support we've received from all of you. Your prayers mean more than we can articulate. So many of you have shared our story with others, allowing them to pray as well. It's been an overwhelming blessing. This situation is so much bigger than us and we are a bit humbled to be at the center of all of it.  We're praying for miracles and can't help but wonder if a miracle is transpiring as we speak. This we know, God is good and will continue to be good, no matter the outcome. In that, we rest.

With love and appreciation,

Rebecca  

"Be at rest once more, O my soul, for the Lord has been good to you."

-Psalm 116: 7