Introduction
Alexandria looking up at me (my favorite picture)
At the time of this writing my wife Kimberly and I have three boys; Aden, Gabriel, and Ethan. In the spring of 2011 Kimberly and I found out she was pregnant with our fifth child (we had previously lost a son, Matthew). At her 20 week ultrasound we were elated to find out we were having a girl, only to be told moments later there were complications. After testing we were given the diagnosis of Trisomy 18, also called Edward’s Syndrome. Her prognosis was dire. There was a rare chance she would make it to delivery, even less of a chance she’d make it through the delivery, and a very remote chance of her living long after birth.
She beat all the odds though – Alexandria Kimberly was born on December 16th, 2011 at 4:26pm weighing 4lbs 12oz, slightly less then a bag of sugar but just as sweet. Below is an exerpt of the e-mail I sent friends and family describing her birth and baptism:
“She was very still. They laid her on Kimberly, she moved very slightly. It did not appear that she was breathing, and the doctor confirmed that she wasn’t when I asked. She did have a heartbeat though, we could feel it on her. She seemed so weak, so purple. I could tell from the looks on the nurses, NICU staff, and others that they did not expect her to live long. I asked them to go get Pastor quickly, and he came into the room. He asked for a little water and it seemed like an eternity before someone had water in a cup for us. He baptized her, we prayed, and said the Lord’s Prayer. Immediately after we were done praying she let out a big cough and began to cry so quietly… but breathe. It was awesome, just an absolutely awesome experience. It was as if we were granted a “yes” right then and there. “
It was, for me, witnessing a miracle. The next few days were difficult, we kept her with us (no NICU), and then took her home. Every day of her life with us was a blessing. She lived 50 days and never slept anywhere but in our arms, we held her 24 hours a day. We had birthday parties, we celebrated her life to the fullest with her, giving her as many experiences as we could. So many people helped us and rallied to us during this time, we thank them so much for sharing her life with us.
This website documents the ups and downs of her journey and our thoughts and feelings as her parents. Many of the pages here were written in the heat of the moment, and we have left it as such to show how that deep emotion affected us as time went on. I hope that these pages help prepare other families who have been given this diagnosis. If you are a parent (new or old) of a child with Edward’s Syndrome and want to talk we’d welcome the opportunity to talk, help, or just be a sounding board. Feel free to share this website with anyone.
Douglas
This is such a great site. Not only will it help other parents with similar struggles, but it provides a resource for your boys to access when they are older. Thank you for sharing your journey with others. =)
Sweet Vogt family, you are an amazing family-such tender loving hearts. Thank you for sharing Alexandria’s journey. Please know that all of you are in our hearts and prayers. May you have a deep sense of our Lord’s compassionate, gentle presence on this journey and always.
Our prayers are with you as you walk this journey with your daughter. Praying for comfort and peace.
Thank you for setting up this site. Know that you are supported and loved by your St. Matthew family and your faithfulness is an inspiration
Congratulation to your and your family Doug! Enjoy your time with Alex! You have done exceptional treatment for your daughter! I don’t have word to praise for you! Our prayers are always with you! Let me know if you need any help.
Deepak
Doug and Kim and Family,
We continue to keep you and Alexandria in our prayers. You have been a great witness to all of us at church as you have relied on your faith and strength from God. May God continue to wrap His arms around you and give you the strength to support and care for Alexandria.
Sam and Susan
Dear Vogt family,
It is with deep sympathy that I send this e-mail! I have just read the news that your beautiful Alexandria has entered into the gates of Heaven! She is now free from her suffering, joining her sibling, and rejoicing with our ever loving Savior! I pray that all of you will feel the blanket of comfort and peace during this difficult time as you temporarily are separated from Alexandria! One day you will all be reunited in that awesome eternal home we know as Heaven! Blessings to all of you! In His love, Lisa and Don Christiansen
Prayers are being sent up for you all from St. Matthew. Rita
Doug and Kimberly, So sorry to hear of your loss. Losing a child is the toughest things you have to go through as Linda and I have been through this as well. Take care, my thoughts and prayers are with you and your family during this difficult time.
My thoughts and prayers are with you and your family. I”m very sorry for your family’s loss. Your daughter is in a beautiful and peaceful place with the Lord.
Doug and Kim,
I can’t begin to tell you what is in my heart and thoughts for you. I’ve always believed The Lord knows who to share his MOST PRECIOUS with, and without a doubt you were chosen more than once. The Master Weaver has graced you and worked in your lives with these most special babies. He has also worked through you and your blessings and heart aches to teach others through your example. My thoughts and prayers are with you.
Doug & Kim,
As I view some of your posts and pictures, your precious little baby was blessed with the best parents, family & friends a girl could ever have. Nothing can heal your hearts right now, but know that many people are keeping you in their prayers.
Doug…I just received info re. your precious baby girl via e-mail from Kurt Veitengruber’s mom. Doug, you don’t know me, but your grandma & grandpa were Uncle George & Aunt Minnie to me. They were very special to me growing up. They always were so proud of you and Pam. I remember meeting you one time when they were in they nursing home. You were so sweet and patient. I was impressed by that. May you find comfort as God’s love enfolds you. You are all in my thoughts and prayers. In Jesus love, Lois
I am moved by your story. Thank you for showing her love in a world where many would have tossed her away when she was first diagnosed as unique. I have found this song to be of great encrouagement in times of trouble.
http://www.youtube.com/watch?v=iOufqWodFNo>>
I pray you will find peace in God’s grace in the day’s ahead.
Kimberly and Doug..
I’m not sure how I happened upon your site, but I am so glad I did. My heart goes out to you and your family…which I’m sure you have heard a thousand times over so far, but it’s no less heartfelt just because I don’t know you guys personally.
I just wanted to let you know that I will be sharing your story with my family and friends and have lifted you and yours up through my pastor and through my own prayers. May God be with you in this treacherous time.
Much love,
Amanda Gilbert
Dear Doug, Kim and family. I am so sorry for your loss. I pray for comfort and healing for you and that you may always hold those precious memories that you’ve created over the 50 days you were blessed with her presence in your lives and hearts.
i am so sorry for the loss of your beautiful little girl my thoughts and prayers are with your family
Kim, Doug and family,
You do not know me but I am a friend of Jackie’s. She told me of Alexandria’s amazing birth story and I have had Alexandria and your family on my church’s prayer chain ever since. I have also lifted up your family during a recent prayer service and in my daily prayer devotionals. May the Lord’s loving arms be wrapped around each and every one of you at this difficult time. You are in my prayers.
Renee
We are so sorry for your loss.
What a lovely tribute to such a sweet precious angel.
“She lived 50 days and never slept anywhere but in our arms” The best loving parents. You are such amazing, tender loving heart family.
May your memories of her always be blessing to you.
Your friends and neighbors,
Stone & Nancy Peng
Dear Doug and Kim,
May God bless you and your family. You are in my thoughts and prayers daily. Love you. Julie
I cam upon this by pure accident and wanted you to know how lucky you were to have such a strong and willing little girl. My wife and I lost our son to Trisomy 18 2 years ago. But what brought me to your story was her name. My daughters name is Alexandria and her baby rother was Connor Alexander named after her. She still talks about him as if he is still a huge part of her life. We lost him on his due date but the few precious moments we spent with him will last a lifetime. There are many of us in the world that have experinced this and for that has forever forged a bond to complete strangers because we can understand what it takes to be there. God is strong the will of caring and compassion know no bounds. God speed with you and your family during this healing process
First off, I am so sorry for your loss, but clearly the impact of Alexandria’s life on her family and even complete strangers such as myself is incredible. Thank you for sharing her with the world! Thank you also for the sweet comment you left on my cake cutting video! You explained a little bit about your story in what you wrote and it immediately sounded familiar to a tribute video I had JUST watched earlier in the day. I clicked on your link and sure enough – it was the same! Your little Alex is just the sweetest, cutest little baby girl!!! I absolutely LOVED the pictures of her painted toenails with Mommy’s! What an amazing story of hope, despite everything you and your family have been through!!! You have indeed been blessed. My husband and I would love to talk with you both in regard to our own situation (expecting a little girl with T18 on April 17th), if you are open to that. It helps to talk with others who have been down this road. Thank you, again! – Aleisa
Thank you for sharing the beautiful life of your daughter. I was introduced to your sweetie on Aleisa’s, “I Will Carry You.” Her video had me in buckets of tears. -May you be consoled by her prayers for you up in Heaven. And know that her brothers are blessed to know that their parents truly love their children unconditionally.
God bless.
Kim and Doug,
Thank you for sharing your journey with Alexandria with everyone. We, too, have our own little angel in heaven, Molly Ann, who was born with Trisomy 18 17 years ago. We found out late in the pregnancy and lived in fear of losing her prior to birth but we were given the gift of 11 months with Molly. We feel very fortunate to have been chosen to be her parents. She has left such a lasting impression in all of our family and friends’ lives. I feel as though my other daughters (who were 4 and 2 at the time and one born after Molly) are more sensitive and caring persons because of their experience with Molly. I truly believe that she was brought into this world to strengthen our faith and she was called to heaven after such a short life because she had fulfilled her mission in this life. God bless your family!
God has a mysterious way of working. I was doing a google search for hospice links to share with a friend whose mother is in her final stage of life, and your beautiful daughter’s blog popped up as the first result.
When I saw your (Dutch) last name I wondered where in the US you were from. Imagine my surprise when I saw in Alex’s obituary that you’re a fellow Grand Rapidian.
I just finished reading your daughter’s story from start to finish today. Please know that the story of her life was a blessing to me today- a reminder to praise God for what he has given me, to always find joy in the small things, and above all else to let my family know how much they are loved.
We will probably never meet, but please know that your daughter changed my life for the better today.
wish i had seen this sooner, because i am guessing we could have benefited from it. but i’m glad i still ran across it today. we just lost our little girl, anysia, on december 19th. she also had trisomy 18, and she lived six lovely hours. i’d give anything to have had more time, but feel very blessed to have had that much. we were told all the same things you were… that she probably would not make it. she almost did not survive birth, as her heart rate dropped dramatically. but she pulled through on her own. she was 4lb, 8oz. and she was… is… beautiful. your alexandria is beautiful, too. thank you for sharing your story.
Georgia,
My wife and I read your comments this morning. Thank you for your kind words about Alexandria. I am very sorry that you lost your daughter last month. I have no words to take away the pain, but know that we understand how you feel. It is a horrible thing to go through. I am so thankful that you had 6 hours with her and have no doubt she knew how much you love her. God bless you.
Merci à votre petit ange Alexandria d’avoir embelli notre terre le temps de quelques semaines !
Vous êtes une famille formidable. Vous êtes l’Amour.
Merci à vous de partager ces moments si précieux.
Merci pour vos aimables paroles.
I just got finished reading Alexandria’s Journey, the entire thing, some parts I read twice. I had a much needed cry, and now my brain won’t stop. I am pregnant with my fifth child, a little girl, Ava Marie, I am currently 31 weeks. At 18 weeks Ava was diagnosed with Full Trisomy 18. She had a large VSD in her heart, and aside from the clenched fists, no other anomalies are present at this time. What a beautiful life you have your daughter. You honor her in such a wonderful way. Up until now I have been reluctant to be in contact will our palliative care/hospice team, but your experience is encouraging. Thank you for sharing your story. May God bless your family all of your days.