I'm coming to you tonight to ask you to join with me in prayer for a very special family who is so close to my heart tonight. Since November of last year I have been in touch with a mama named Jessie, who is the inspiration behind my series on Grief, Hope, and Miracles. With her permission I am sharing her emails here...they tell such a beautiful story of hope and faith in the midst of one of life's greatest challenges....
My name is Jessie. I have never had the courage to write to you before. I came across your blog many months ago and have been so inspired by it. My husband and I found out in June that we are expecting our first child. We were elated and feel blessed by God. During a routine ultrasound two weeks ago, we were told that our baby girl has a severe heart defect and after further testing, doctors determined she has "extra chromosome material" on her third chromosome. The doctors have ordered further tests to be done, as they do not know what this means for her life or how long she will live. Our hearts are broken. We are fervently praying for her health and that she will live a long life with us. At this point, everything is very uncertain.
We have named our baby girl Emma. I understand from your blog that you have experienced loss and heartache and I just want to thank you for your courage in writing and blogging. It is touching many lives, my husband's and mine included. Thank you for being a voice for those who do not have one and standing for every child. Although medicine has labeled our daughter as "genetically abnormal", we do not see her in any other way but loved and cherished. Thank you again for all that you do.
Thank you so much for your message and prayers. I cannot tell you how much that means and am so grateful to connect with another mama. Last Wednesday, we learned that the fluid around Emma's lungs has gone down. Praise God! The fluid build-up has come from her heart being unable to fully function properly.
What is very scary is the fact that none of the doctors know what this "extra chromosome material" on Emma's third chromosome actually means for her physically or mentally. They have told us that they have never seen a case like Emma's before. They know it has caused her heart problem, called Tricuspid Atresia, which can be repaired via surgery after she is born. But, the doctors told us that the chance of miscarriage is very high because of the fluid around her lungs. We are praying for her each and every day.
The doctors believe that this extra chromosome material can lead to mental retardation but they do not know how severe it could be. We love Emma. I am so scared, though, by all of the unknowns. The doctors have told us to terminate and my husband and I will not consider it. We love her and will cherish her as long as we can. I pray it is for a lifetime. That is why I have found so much strength and comfort in your blog. I can only imagine how scary it must have been when you were pregnant with Lily, with so many questions and the unknown. Please know you are in my prayers, too, and hope you are enjoying your pregnancy. I know you are a busy mama and am so touched by your email and prayers. Blessings to you and your family!
Happy New Year!! I hope this email finds you and your family doing well and enjoying 2013. I just read your New Years post and wow, how moving and inspiring it was! Truly, as a mama-to-be who, too, is living in a world with so many unknowns and uncertainties, your words of hope and courage inspire me and give me hope. Your words are a ministry. Thank you, thank you for all of your posts, especially this one.
I wanted to update you on our baby Emma. By the grace of God, the fluid around her lungs and heart has gone down drastically and our doctors are no longer talking about "if" Emma will be born, but instead, when she will be born. My official due date is March 28th. What the doctors cannot tell us is what her extra chromosome material means for Emma long term. We do not know if it will impact her developmentally or further physically. I am scared for Emma as her future is so unknown but is it through the words of courageous people such as yourself who give me and my husband hope. Thank you so very much for your words. I hope you are feeling well and am praying for you, your precious baby, and family. Thank you again!!
With Love and Gratitude,
I hope this finds you and your family doing well. I wanted to send an update your way to let you know that my husband and I received news last week about our precious baby Emma. As you may remember, Emma's chromosomal make-up is like no case doctors were able to find. They knew that the extra chromosome material on her third chromosome caused her heart problem, but they were unable to determine what that meant for the rest of her health and life.
Last week, we met with a new team of doctors at the hospital where Emma will be born. We met with their genetic counselor who researched Emma's background and discovered that Emma's chromosomal make-up is a partial Trisomy. Babies who had similar chromosomal backgrounds did not live long after birth. There is no other way to say that Tim and I are devastated. Up until our meeting last week, we were expecting that there would be health challenges ahead for Emma, but we never imagined this. Doctors are not sure how long we will have her after she is born - perhaps a few minutes, maybe an hour, and if by extraordinary circumstances, perhaps days. No one is certain.
Our hearts are broken and we are just praying for God's guidance and strength during this time. We love our precious baby girl and cannot imagine losing her. I know you have experienced loss and life. I don't know how you have walked through such difficult circumstances, but if you have any words of wisdom or insight, I welcome them. The grief is overwhelming and my husband and I are leaning on one another and relying on God to make it through.
I hope you all are well. You, your family and precious baby are in my thoughts and prayers.
Thank you so much for all of your words of encouragement and hope. You and your husband's prayers mean the world, and we are so grateful for them. I can only imagine how busy life is as a wife, mama to 11, and caring for all those around you. Truly, we are humbled by your thoughtfulness and care. Words cannot adequately thank you and express how touched we are.
We are hanging in and trying to hang on, moment by moment. Emma is officially due on March 28, but doctors will likely induce the week before. When we met with doctors last week, something that the genetic counselor explained was that babies born with similar genetics suffered from severe seizures while others simply died in their sleep because of the neurological delays that come with this type of chromosome make-up. One of our greatest fears is that Emma will experience physical trauma after she is born. The only more difficult thought than losing Emma is having her survive but experience such pain. We just are praying for a peaceful delivery and a peaceful life for Emma, however long she is with us.
You are right, God can work miracles and we believe that anything is possible. I am so inspired by Nora Rose's story. She is truly a miracle baby. Thank you so much for connecting us with these families. Truly, Tim and I are both so grateful to you and your husband for your prayers and words of encouragement. Please know we are praying for you and your family, too. Despite all of the sadness that has surrounded us, we find hope and strength in those around us an we thank you.
I will be sure to keep you posted on what we learn. We will see the doctors again this Wednesday and may find out more about Emma's delivery and what we might be able to expect after she is born. Thank you so much again for all of your encouragement. We are very grateful and so very touched.
With Much Love and Gratitude,
I am very sorry for this much overdue message. I hope you all are enjoying the week. I want to thank you for the Grief, Hope, and Miracles series. I cannot tell you how touched Tim and I are by your thoughtfulness and care. We read Elizabeth's story and cried together, reading about their family's heartache and ultimately, the miracle of Josie's survival. It is amazing what God can do and we are humbled by it.
Doctors have set Emma's induction date for this Tuesday, March 19th. We will arrive at the hospital the night before. There were no new findings at Emma's sonogram this past week. We are all preparing for the worst, and praying for the best. My hope is that Emma will be born alive, although doctors have told us that she may not withstand labor. Because of this, they have recommended I not wear a heart monitor while in labor.
I want to believe but am scared to write or say aloud that she will be born alive. She has proven doctors wrong many times and I pray she will again. Many doctors did not think she would make it to the third trimester. She is our miracle baby and we are just loving her and cherishing her as long as she is with us.
Thank you so much again for your kindness, Patti. We are very grateful to you and your family. It truly is the prayers and strength of others that have given us the strength to continue to walk on this journey with Emma. Please know you and your family are in our prayers, too.
With Much Love,
3/18/13 this morning at 12 p.m.
Thank you so much for your message. We leave for the hospital in a few hours. The plan still stands to be induced early tomorrow morning. You are more than welcome to share the email with readers. We appreciate all of the prayers.
I am sorry to say I do not have a family picture on hand to send, but we will have a photographer from Now I Lay Me Down to Sleep (https://www.
Thank you so much for all of your prayers, Patti. They mean more than we can say. This is the most difficult journey we have ever been on and we are reminded of God's loving presence and healing through the kindness and care of others. You and your family are in our prayers, too. I will likely not have access to my email for a while but will be sure to update you as soon as we have the opportunity. Sending much love to you and your family,
I don't know what tomorrow holds for Jessie and Tim and their unborn baby Emma, but I'm praying right along with them for a miracle, and I'm asking you to do the same. I love the heart of this mama when she says We are all preparing for the worst, and praying for the best.
I do believe in the power of prayer, but I also know from experience that we don't always experience the miracle we are hoping for. Some miracles are only seen on the other side of Heaven ~ the place where there is no sorrow, and where God will wipe away every tear...the place where death has no victory. I have four babies waiting for me there, and I know the day I'm reunited with them will be the happiest day I've ever known.
Nevertheless, what I am praying for tonight is the miracle of life for baby Emma, and for her parents to be able to know her on this side of Heaven. I'm asking you to pray as well for the comfort and strength of God for this precious family ~ for whatever they face tomorrow.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.