It is hard to know where to start; my heart is so heavy…
Several weeks ago, I felt like I heard a difficult question in my heart. “Would I be willing to give Ellianna back to Heaven if it meant salvation for someone else?” Struggling to understand if this was even God, or if I had just made it up, I replied with an angered “NO.” Why would God even ask that of me? Ellianna already seemed to have crossed the scariest bridges and we had seen such healing in her.
Last Tuesday, Ellianna was fussy in the evening. She cried like something hurt her and she was not very interested in eating. She already had a check-up scheduled the next day, so I gave her some Tylenol and found she settled if she could stay snuggled against me. She slept restfully in my arms through the night, waking only briefly. The next morning she was frighteningly pale and refused to nurse and hardly sipped from a bottle. She screamed whenever we moved her. I felt panicked. Ellianna’s weight check was scheduled for 1:00 in the afternoon. We were expecting them to tell us she needed a feeding tube again because she just wasn’t gaining weight. Worried about why she seemed so sick, we called to see if they would get her in sooner, but they said that was the only time they could see her. I had planned to spend some time with a friend that day, and since Ellie was calm and comforted laying on Mark’s chest on the couch, I headed out for a few hours before coming back to take her to the doctor.
By the time we got to the doctor, there was no denying something was WRONG, and I wasn’t going to let them just send us away again. I didn’t even have to plead though. When the doctor came in to see her, Ellianna was just lying there, hardly moving, constanly whimpering this pitiful, guteral groan. I was in tears. “Something is wrong, this isn’t her. Please DO something.” We were sent right to the emergency room. I didn’t even wait for the ambulance. I told her doctor, “I can have her there before the ambulance even gets here to pick us up.”
Half an hour later we were settled in the emergency room. Once again, nurses were poking and poking, trying to get an iv, and finally giving up and putting in a feeding tube because “this poor baby just needs something to eat!” I bit my tongue, holding back the verbal lashing I wanted to unleash on these professionals who seemed so blind. I knew there was something else going on.
The pedicatric neurosurgeon was out of town…again. Finally an adult neurosurgeon came to examine her, and it took him about 5 seconds to see that there was a problem with the shunt in her brain. It wasn’t working. By this time, Ellianna was dfficult to awaken. She was just sleeping in my arms. The surgeon told us he would have to do surgery to fix her shunt, but they needed to stablize her first.
Finally in the PICU they were able to get an iv started and get her some fluids to prepare her for surgery. I sat as still as I could holding Ellie. She whimpered every time I moved her at all. It broke my heart to know she was in so much pain. I sang to her, every song I could remember… hymns I learned as a child, and the song my mom always sang to me. I kissed her soft cheeks and told her it was going to be ok; that they were going to fix it and she would feel better soon.
Mark came with her sisters to see her before surgery. We both almost came unglued when they came in and said they had to poke her AGAIN for more blood because they must have mixed up her blood with someone else’s. “That couldn’t have been hers,” the doctor said, “she’s not that sick.” Big surprise when the next set of blood tests came back with the same terrifying results. Nurses were scrambling to start another blood transfusion before they started the surgery. Our girl was very sick.
Since our oldest son Jacob was away at camp, it was Mark, Baylie, Bella, and I that walked Ellianna down to surgery. I remember this looooong tiled hallway…the four of us holding hands as we walked…and I looked back and thought, “I bet this whole hallway could be filled with all the people praying for us right now.”
Mark sat with the girls while I walked Ellianna back to surgery. In the holding area she was crying and I couldn’t hold her. She was posturing with her arms and legs and my medical background screamed the knowledge of what that meant. I wanted to be hysterical, but as the first tear fell, the nurse who was waiting with us grabbed my shoulders. “No,” he said, “She needs you. You’re stronger than that. You’ve got this.” And then they took her. The tall metal bars of her crib and all the pumps and equipment surrounding my sweet little symbol of grace.
Once we got news that the surgery went fine, Mark took the girls home for some sleep and I went back to the PICU to wait for them to bring Ellianna back to her room. She remained sedated with a breathing tube, but in a way it made me feel better that she was peaceful. Now, I thought, we heal.
She looked better. The shunt had been fixed, she was pink again from the blood she had received, and her vital signs were more stable. The surgeon said the fluid in her brain had looked cloudy so it was sent off to be tested.
The worst was still ahead. Within the hour the results came back saying she had the most serious kind of infection, and she was to be taken back to the operating room to remove both of her shunts and put in an external drain to wait for the infection to clear. Mark was already tucking the girls in at home and was hardly able to move because of his recent back injury. He had to stay at home and wait for any updates. A couple good friends came by and stayed up through the night with me.
Back from surgery the second time, Ellianna was kept sedated.
Early the next morning I could tell the doctors were concerned about something. I don’t think the neurosurgeon even looked at me when he said “This is serious, and it may be that she won’t survive.” I was stunned, and Mark made arrangements to hurry back to the hospital.
We stood with close friends as they told us that her CT scan showed 50-60% of her brain had already been destroyed. We were shattered, broken, gutted. I cried with her physical therapist who came by to see her. I told her about what I thought God had asked of me. I told her I felt like as soon as I said “yes” to God, she would be gone, and I was not going to do it.
It was not long after that report that the horrible reality started sinking in. We watched in horror as her heart rate slowly dropped lower and lower. Early on in the NICU, her heart rate would drop and all she needed was a little stimulation and that number would jump right back up. “Rub her!” I shouted at Mark. But this wasn’t the same; the number continued to plummet. Beeping and dinging and running feet, and CPR was begun. Mark and I stood helpless in each others’ arms, watching her slip away. That’s when I felt it. An overwhelming peace. A peace in saying “ok, You can take her.” I didn’t want that peace though. I wanted to scream! I hated that I felt that way. But it stayed.
After a few minutes, her heart beat came back and she stabilized. We sat in shock and disbelief. Then it happened again. More CPR, more helpless watching and crying, and then her heartbeat was back again. At this point the doctor told us—even if they kept bringing her back, there was really no chance of neurological function. Through our tears we knew we just wanted her to go in peace in our arms, without anymore trauma to her tiny body. They took everything off except the breathing tube, wrapped her in a blanket, and placed her in our arms.
We cried tears from the deepest places within us. Mark said “I’m sorry I never got to take you out for lunch on your birthday” and he did “Twinkle Star”, a bedtime tradition in our house. I told her how much we loved her and asked her to send butterflies for Baylie. We could tell she was gone, and asked that her breathing tube be taken too, so we could hold just her and see her precious, most beautiful face. I have never had emotion more raw or so deep. My chest felt physically crushed.
I started to feel frightened by watching her color change. Her nurses took her back to her bed and made impressions of her hands and feet for us. They let me bathe her and my tears would not stop as I gave her her last bath and combed her sweet smelling hair into one last mohawk. By this time she looked more peaceful. Like a delicate porcelain doll, and boy did she look just like her daddy with all of the tubes and stickers removed from her sweet little face! We held her again, as long as we could until they came to take her to the funeral home. Setting her down on that stretcher broke the last piece of my heart and we sobbed as they took her away.
I have more to share about the days that have followed since then, but for now I am so drained from these exhausting emotions. Please stay with us, share in our grief, smile in our memories, and hold us up as we make it through this most impossible of weeks. We are thankful for so many people who are surrounding us in our time of heartache.
32 thoughts on “The Day The World Went Wrong”
There are no words for what I want to say to you and your family Hannah. I just want to hug you like a big brother hugs a little sister and promise you that it'll be alright and obviously, I can't do that. What I can do is remind you that there is a reason for everything. While we often don't understand it, especially in times like these, seek to be at peace. Your little one has gone home, the best place for her and one day, you'll be with her again.
We're listening, Hannah, and praying. I'm speechless…I wish I could hug you. Sending love your way. -Jackie Bradley
Sweet Hannah and Mark thank you for letting us all into your hearts. What a precious family Ellianna has. She is one blessed little girl. Even though she is on the other side, she is ever so real, just living in Heaven……no more pain, no more tears for her…….perfect in every way. We are a speck here as far as eternity is…….one day for you all you will be together forrrreverrrrrrr! Some don't have that assurance……so thankful you all do. Thank you for letting us all share in your journey with Ellie……..we will never be the same…….she encouraged us to fight………and run the race…….she did with her family helping her…….she won……we are not all far behind. You gave her the gift of love…. sweet family! Jesus loves you this I know…….for the Bible tells me so! Our family loves you all!
Oh Hannah, well done and thank you for taking the time to share with us all of Elliana's final moments on this earth. Reading of you holding her as she went to be with Jesus took me back to the final moments that I had with my Molly. What you did was the most courageous and selfless thing a parent could ever do. And it is also the most difficult and heart breaking thing to choose. I am praying and lifting you all up as you go through this week, making decisions about her service and holding tightly to the one who now holds your precious little girl.
Much love and prayers,
Came across your blog on Facebook just now. You and your family are in my prayers. We lost our little boy in 2008. I pray that you will be surrounded with much love and support from your family and friends, but most of all I pray you will feel God's arms around you at this most difficult time in your lives.
Jody, Kris, Jake and angel Grant
July 18, 2011 10:11 AM
Jody sent me your link….and I just couldn't stop crying….Although our daughter was much older we lost ours at age 18 and it wasn't easier then either. I know at least we got 18 wonderful years with her but I miss her sooo bad sometimes. You have huge amounts of courage I don't think i could ever have. Please know that God is still there and loves you all and your precious baby is sitting with HIM now and forever more. Sometimes I don't understand all of it but I know I can feel my LORD's love all around me and I will pray for your family to feel the same love every minute of the day!
Thank you for sharing from your heart so honestly. You are a blessing to many. I don't have answers about why these things happen, but I am praying for you, Mark and the children. That God will with time ease the pain and get you through these very difficult coming weeks ahead. Much love. Jane
My heart is breaking for you…I know where you are. I remember making that same choice and having that same feeling of peace when my son George died. Praying for you and all your family as you walk this path. May God be with you and carry you during the moments you cannot walk on your own.
Hannah, our friend Kate linked your blog to us and told us about your sweet Elliana. We lost our little girl Georgiana nearly four months ago. We know how you are feeling. Even trusting God and in His plan does not take the burden away or the pain. My heart is broken for you and I am praying for you. Feel free to reach out if you want to talk to someone who understands. Prayers and love to you and your family.
Praying for you and your sweet family in the midst of such incredible grief and loss, Hannah. May God overwhelm you with His comfort and hope…our hearts hurt for you. –John and Janel Breitenstein
My heart hurts for you guys. Praying.
There have been many times in the life of our family when all the pat answers were useless and all I could think to cling to was: “God is good.” This is such a time. We know that He has purpose in all that He allows in our lives and we know that He does all things perfectly. It’s because of those things we ABSOLUTELY KNOW about Him that we can continue on. He loves you Hannah and I love you and together as a family, as we cling to Him, we will prevail…not because we are strong, but because He is.
God bless you and your family sweetheart. God hears your cries and He does feel your pain. He lost a child once too.
Hannah, My heart aches for you and your family. I can't even imagine what it is like to lose a child, but I do know that God is with you! He hears your prayers, he knows your pain, he cries with you! We are never prepared for the loss of a precious child, but God is always prepared to help us through that loss. He alone will give you the faith and strength that is needed to overcome your sorrow. May it comfort you to know that the loving arms which now embrace baby Ellianna are the very same arms holding you close in your sadness. In Christ's Love, Cindy Kahle
I cried when I read of your last moments with your precious one. I will be praying for continued peace for your whole family. I know this will be hard. I have not lost a child, but lost my grandmother last year, and something that I try to remind myself of when I am missing her and the tears come is that she is safe in heaven and no longer hurting. And while I ache for her still today, she is happy and whole. I am believing that your little one is in the arms of our Heavenly Father laughing and smiling and pain free.
(((((((HUGS))))))) and many prayers
A real life angel to bless your lives forever.
Thank you for sharing….we lost our precious grandson Alex nearly one year ago from SMA. Your precious words brought back a lot of those memories and feelings.
In Christ alone,
I read your story through a link a friend had posted and I want you to know that your family has been in my heart and many prayers have been said for you. I truly do not have the words to express what I wish I could to you, but just wanted to tell you I am praying for you and how thankful I am that you would share your story so openly. You have a strength that I can't even fathom. God bless you and all of your family, I will continue to pray and to keep your family in my heart.
Thank you for writing all this down to help us know and understand those moments too. I loved my niece since the moment I knew of her and holding her in my arms only made me love her more. My heart aches for you, for me for all the things her Auntie would love to do with her and teach her. Still, I know she is in the arms of Jesus. Knowing her Mommy is walking with Jesus too is one of the most precious gifts I could know. I know that in the years to come we will see God continue to weave all the threads of Ellie's life that we can't yet understand into a beautiful tapestry. I love you!
I don't know what to say, except that I cannot imagine the pain of losing a precious child. A child who you fall in love with the moment you find out you're pregnant and cherish even more deeply when that child is born. My thoughts and prayers are with you and your family. You know you have a little angel now watching over your family!!! <3<3<3HUGS<3<3<3
How brave of you to share your story, I wish I had words but there are none. Know that “hallway of support” you spoke of is bigger than you could ever imagine! The family of the Medved's and Foote's (my side) have been pulling for you guys since day one. My friends have been sending prayer after prayer your way. My sister Lisa has an entire church from Friendswood, TX praying for you guys… and their prayer group is no joke… it a huge group of cute old ladies who don't mess around when it comes to praying (I witnessed it first hand when my baby came early). Also, my friend Nicole & founder of http://www.jennabearsfoundation.org/ (she lost her 6 month old Jenna) helped me with ideals putting the basket/food together. She also offered to help with the reception and will reach out to you soon. Take all the time you need and know when you are ready you will have an endless line of support…. enough to fill more than just a hallway. Ellianna will NEVER be forgotten. With Love, The Medved's and Friends
“An Angel in the book of life wrote down Ellianna's birth. And whispered as she closed the book “too beautiful for earth.”
I continue to think of you guys so often. It is so hard in my joy of new life to think of how you must be feeling in your grief of a lost one. Thank goodness for faith-knowing she is so much more at peace than any of us are here. Love you!
So sorry for your loss, you are in the thoughts and prayers of many more than you know.
Thank you so much for sharing your story…you are an incredibly strong woman. I read your blog through a post a mutual friend put on Facebook. You don't know me (I live in TN) but your story has really touched my heart! I sat here, in the middle of a restaurant (on my lunch break), and read you story, crying throughout the whole thing! My heart goes out to you and your family…you are in my prayers! Your example of love and faith is one that I will not forget! Thank you and know that you are loved!
I am praying for your family. the Lord knows why He does everything and there is a time for everything. Your daughter may have been very small, but this vers, i want to leave with you I have fought the good fight, I have finished the race, I have kept the faith. 8 Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing. 2 Timothy 4:7-8
It's amazing you use butterfly's as a part of your memory for her. A person brought into this world with so many complications, loved by family, and everyone who reads this. But as you gave her back to God, as he took her back to heaven an amazing thing occurred. Her true beauty opened up in all it's beauty as she became like the buterfly, and is now free of pain, and anguish. Each time you see a butterfly, I know the peace and love will always come back to those preciuos memories of your little princess. Maybe she will be in charge of a butterly garden in heaven, who sends them to earth. God is love, and I know he has sent his angels to comfort you through this time. Big Hugs for both of you, and your entire family.
My heart is breaking for you…sending prayers and love.
I am heartbroken in tears for you, thanks for sharing her story. You are a strong mommy, hugs and prayers coming your way.
This is a heart breaking story but such a beautiful one, as well. You told it with such grace and love. I will remember you always in my prayers. She was/is such a beautiful baby. I have a granddaughter with full Trisomy 18. Her life is fragile and the doctors don't understand that her life is valuable to us. They like to say, “incompatible with life”. Not so, she's beautiful, smiles, has personality and I could go on and on. I just want to say that I know someday we will be facing the same kind of loss you have with your dear girl. I always say to myself and everyone, I am her grammy FOREVER. Delainey will live forever and we will all share in God's Holy Kingdom. Love you and lots of hugs for you and your family. ❤
Nothing I can say will relieve your pain nor brings you daughter back. It might sound selfish but I am happy we met in this life. I am happy that Akemi was with you and your family because you are a great woman with a wonderful family. God will bless you forever, and that's a long time.
I found your page because my baby girl is “Elliana Grace” as well, she is 5 months old…my heart goes out to you. I cannot imagine the hurt you feel even now…I pray that Jesus will bring you healing and peace to see His plan in this. How beautiful that even in the moment you did know He was talking to you, there with you through it all.
Thank you so much for sharing.
In Christ's love,
Thank you Laura for stopping by. What a beautiful daughter you have, and a precious name 🙂 Thank you for your words of encouragement.