I am sorry if you are hearing this story again or if you are hearing it for the the first time. We have been meaning to shaere Ellie Catherine's story. It has been a long four weeks with lots of emotions, sadness, heart aches, questions, confusion, and more. But telling the story and life of Ellie is so important to me and I want to share everything I can about her.
My pregnancy started out normal with morning sickness being the first indicator that some sweet little precious baby was growing inside. We were both very shocked but excited when we found out we were expecting baby number two. With our calculations of when we thought we might be due we soon realized that our new little one and big brother Jonah were going to be 19 months apart!! Oh my we were going to be busy. So after our first doctors visit we figured out we were due March 13th. The pregnancy continued to go well with no complaints. We went back for our 18 week ultrasound and that is when they started to notice and Ellie was measuring small. They were not alarmed but to be sure all was well they wanted me to come back in 3 weeks for another ultrasound. So back to the doctor I went again. After all the measurements were done on our little babe inside they calculated that she was still measuring small. They still were not really worried but wanted to have me keep coming back for ultrasounds every 3 weeks, changed my due date to the 17th of March, and sent me for some lab work. They tested for everything from down syndrome to infection and everything came back normal. There was no concern for infection and no birth defect they could see. The visits continued and every time they were reassuring that Ellie was fine, just small.
Things started to get interesting at my 34 weeks ultrasound. They did the normal measurements that they due at every appointment and this time Ellie was measuring a bit smaller on the growth chart than she had been. They did a BPP (biophysical profile) and they were noticing that her diaphragm was not moving. So they sent me for a non-stress test. She failed the non-stress test which landed me my first trip to Labor and Delivery. I ended up in triage and the nurse was having a hard time finding the heart beat. So the doctors came in and things got crazy. An IV was started, I was consented for surgery and all I saw from the bed was a blur of green scrubs. Ellie's heart rate was going from 150 to 50 and this was very concerning. After some fluids and close monitoring they were able to get her HR to stay at 150. I was then moved to a room and started on pitocin to start contractions to see if she could handel the stress put on her. After 2 hours of painful but not horrible contractions sweet Ellie passed with flying colors and we were sent home at 2am.
I had a follow-up appointment Friday which landed me back in the hospital and they repeated everything plus did an echo of Ellie's heart which came back perfect. I scheduled another appointment to see the high risk doctors that following Tuesday and thats when we realized we would be meeting our little girl 5 weeks earlier than planned.
I went back for my routine appointment and after lots of discussion and Ellie not responding to the BPP's like they wanted her to I was back at the hospital. I had a non-stress test again, and one more BPP. When the resident started looking around she called for the attending and it was decided right then and there I was going for an emergency Caesarean. Tim had started his two week rotation of nights on OB so he came to the hospital as soon as possible and we all went back to the OR. We welcomed our sweet Ellie Catherine into the world on February 12th at 6:38 pm. She was 4 pounds 7 ounces and 18 inches long. She was perfect in every way.
The next few hours were hard as I was recovering from surgery and we were separated from Ellie. She was immediately intubated at delivery and taken to the NICU. I was able to finally see her that night around 11. The doctors started doing tests and the next morning did an ultrasound of her head. They found a few spots with fluid and ordered an MRI for further diagnosis. We got to go down throughout the day and see Ellie. We would stand by her side and talk to her, hold her sweet tiny little hands, stroke her feet, feel her warmth. We finally found out the MRI was going to be done late that night and we would get the results the next morning. Everything was kind of a blurr from that moment on.
Thursday morning the doctors came to visit with us and told us the news any parent dreads. The diagnosis was not good. Ellie was diagnosed with Lissencephaly. Lissencepahly means "smooth" brain. It is where the brain never develops in utero but this is something you can't see on ultrasound only with an MRI. Because the brain was underdeveloped they said Ellie would never breathe, roll over, sit up, eat, talk, walk or do anything on her own and her form of Lissencephaly was severe. I sat calmly in my bed just staring at the doctor. For some reason it didn't hit me. I was rolling everything around and around in my head thinking about what was next and how we might be spending the next few months making trips back and forth to check on Ellie in the NICU and nurse her back to health. I was thinking what every mother thinks when you end up at the hospital to have your baby, "I am going to take my sweet baby home." There was nothing in my mind saying that she would never leave the hospital with us and be part of our lives forever. The doctors told us all they could about her condition and left us alone to talk. It was then I was finally able to cry, sob, shake. I would never be taking my baby girl home.
That night Tim and I were finally alone in my hospital room. He climbed in bed with me and we sat there in silence, hugging each other as we let the tears roll down our faces. I have never felt such sadness, disappointment, or dispair, in all my life. After carrying that sweet precious child for 8 months I couldn't imagine life without her. As a mom you get so attached so that miracle of life the moment you find out you are pregnant. We had been to so many doctor appointments together, had many nights of restless, but ever so perfect, sleep, time rocking Jonah together. We had done everything together and now I had to let her go. How do you deal with something like that? The tears continued to fall as people came and went, explaining the situation over and over again. Each time the shift of nurses would change they would come in happy as they should be, not knowing the whole situation and each time I had to tell them my baby girl was not well, stinging more every time and opening that raw wound again and again.
We said goodbye to Ellie Catherine Erpelding at 5:38 on Friday February 15th. The details and memories still sting, but I want to hold onto them for eternity. Everything about her was perfect. Perfect little feet, hands, arms, legs, a head full of beautiful light colored hair. To look at her you would think everything was completely normal. Nothing was wrong at all just a beautiful baby girl. But it wasn't and that is what hurts so much. I look back and find peace now that I can somewhat piece it together. I never understood what it meant when you prayed "God if it be your will." I remember praying it, but really only praying that he would give me what I asked if it be his will or not. God knew from the moment we found out we were pregnant with Ellie what the outcome would be. And now I know what it means "God if it be your will." I would have never imagined that His will was not for Ellie to live here on earth but to be with him in heaven for eternity. That was His will? It was, and I trust that God does know best. If we would have been selfish to keep Ellie here, it would have been a life changing situation. But God knew and made the decision for us.
At times it seems like it was yesterday we said goodbye to Ellie and then there are days it seems like so long ago. Some days are harder than others, but I feel the wound is beginning to form a small scab and we are healing, each in our own way. God has been gracious and we have felt the prayers of many. We have a peace that only our Heavenly Father can give and knowing we have a loving God who bears this sadness with us makes it that much more bearable. There are days I long to hold my Ellie, to rock that sweet tiny girl and hold her close. I have such a longing for her but I remind myself daily that she is loved more than I can imagine and in heaven right now so perfect and whole. I pray that God will continue to give us the strength to look forward and trust him in all situations. He has been good and we continue to trust him in all of this. I want everyone to know that though we go through trials and affliction there is a higher being that gave his life for us and someday we will join him in heaven, that gives me such joy. And once we join him on high that is the day I will see my Ellie Catherine for eternity.