It's hard to find the words to express what we have felt in the last three weeks since Esther has passed. Most of our time has been spent praising our father for the most amazing gift ever, 20 days with our beautiful daughter. We have come to realize how blessed we truly were for those 20 days. For those of you that weren't there experiencing what we were, every day was extremely fragile for Esther. We knew Esther was really sick, but didn't really know how bad it was until we looked back at it all and realized how many times we almost didn't get another day with her.
I remember giving birth to her thinking that was the last time I was going to see her. I felt so much joy seeing her held before my eyes by the doctors and hearing her make two little crying sounds out of her mouth. I was thinking, "if that is all we get, that is the most incredible thing I have ever heard." I remember back when we had to put her on ECMO. Within a few hours her life was hanging before our eyes again. Her heart had stopped along with the ECMO machine and we were crying out to the Lord again to save her. Each time she fought back and we gained more moments with our little Angel. I remember praying at the beginning and saying, "Lord, I thought you were going to take her home. I don't know how much of this up and down I can take. I don't know if I am strong enough. Give me the strength to make it through this fight with her." I was so scared at first to get attached to her in case she went away so quickly. All I can do now is thank the Lord for giving me every one of those 20 days. I needed it. Without Jason knowing it, he patiently taught me, through his own example, to stand strong in faith and prayer, fervently trusting the Lord that she is ours right now. To give everything you have. He gave me the courage to stand by her side, unafraid. To simply stroke her hair, whisper I love you and to just hold her hand and whisper prayers over her. I was terrified in this process with how swollen she looked. Each time I tried, I'd break. Tears would flow and the words just couldn't come out. I was so afraid I would have to see her die. Many times I would wait outside the door while the alarms screamed, panicking while Jason smiled at his new love. He would just sing to her in the midst of the chaos. Tears streamed down my face as I watched him fall more and more in love with Esther in every moment he got with her. Every morning I saw Jason's face light up just getting a glimpse of our little girl. He was the one who taught me how to be still before the Lord and wait before him. For he had chose us to take care of Esther those 20 days. Thank you Father for Jason. In more ways then one, for knowing the exact person I needed in my life to get me through those days.
Each day the Lord gave me more strength to face the day. Skipping forward to the last few days with Esther now. We felt an overwhelming presence of peace and comfort of the Lord over us. The last two days with Esther went so quickly. The doctors had noticed a small amount of blood forming under her huge incision on her stomach. They needed to reopen that area of her stomach. I remember being at one of my lowest moments with Esther during this time. We knew that each procedure was critical. Not until we had the social worker discussing what our plan is if we loose Esther, did we realize how bad she really was. I had just gotten done pumping and cleaning my equipment when I walked in on the social worker discussing with Jason if he thought Soulumination should come in to take pictures with us and Esther in case she didn't make it. My eyes looked like they were going to explode. I didn't understand why she was talking this way. I thought things were okay. She informed us then that she may not make it through this procedure.
Jason and I waited in the waiting room with tears streaming down our face as two ladies across from us did the same thing. Each family waited as we did to hear the results of surgery. It was all to familiar to us. Each face says a different story. But we all wait and hope that things are going to be okay. A doctor came up to those two ladies saying, "The brain surgery went well. In fact better than we expected." The ladies gathered there thoughts and tears, but kept glancing towards us as we sat holding each other. We cried knowing we could be saying goodbye to Esther at any time. They both got up within moments and said, "we are so sorry to bother you, but we wanted to know if we could pray for you." Our hearts jumped, and with tears streaming down all of our faces, we began to give our worries and tears to the Lord. Soon after, our surgeon came in saying they were hopeful again. That the blood looked like old blood. They found no active bleed, only clotted blood. We were hopeful once again, and thanked the Lord for another miracle that he had performed before us.
Jason and I rushed into Esther's room as soon as we could and gave thanks to the Lord together with Esther for saving her again. A few hours later as the oscillator was shaking her to loosen up the lungs and get them to open up more, Jason noticed blood starting to come out of the incision again. They would bandage it up with a little gauze and no worries would come of it; or so we thought.
Later that night my friend Cynthia came by to see Esther. I went into the room to show her sweet Esther, and the nurses wore concern all over there faces. I asked them if it was okay for us to see her. They said yes, it would need to be quick though. They needed to go back in to the incision and pack it with gauze and a drain tube to drain the blood. I found Jason soon after and said "you need to get in there and see Esther right away, they are going to do another procedure." There was concern at this time with the bleeding. Being on ECMO, they have to give Esther blood thinners. In order to stop the bleeding we were going to have to get her off ECMO.
That night at 2 am we received another phone call. They had to open up her incision a little again with a fresh attempt to stop the bleeding. We fell asleep again from exhaustion but with a heavy and sad heart. That morning we went to 8am rounds with the doctors. There were about 25-30 (more than normal). They had smiles on there faces as they showed us how much Esther lungs had opened up over the night. They were hopeful and unusually optimistic to trial her off ECMO. It needed to be done in order to stop her bleeding. Jason and I felt so confident and at peace with this news. We got our breakfast, opened up our bibles, prayed with our pastor, sent out prayer chains, you name it. The procedure was going to start at 9:30 am. At 10 I went to do my daily pumping. I had just finished washing my pumping supplies and headed down to the breast pumping room. I asked the desk ladies for permission to enter the pumping room and they asked me if I had seen my husband Jason. He was looking for me, and the doctors wanted to speak to us. I couldn't find him at first, but his head came out of a room that I was unfamiliar with. My stomach went into knots. I knew something wasn't right. I asked him why we had to be in the private room and he said because the other one was getting worked on. We both felt something wasn't right. Moments later the doctors and nurses came in with disheartened faces and said, we have tried everything, but the trial off ECMO did not work and she is not able to make it without it. Jason and I were shocked. We couldn't speak. There were no words. I looked at Jason for him to speak. We could barely spit anything out. They had tried everything and there was nothing else they could do to save Esther. They could not stop the bleeding and her lungs were not strong enough to come off ECMO.
We called our family and sent out texts for those that could to join us in saying goodbye to Esther. Our hearts broke. We got 6 more hours with Esther saying goodbye. We sang and prayed over our little girl. We got to be in the same room with Esther as she went to meet her Father, Creator and Savior. It was the most beautiful thing you can imagine. In fact, I think we are brave enough to include a clip of us praying over Esther hours before she had passed. We worshiped together, prayed together and rejoiced in the gift the Lord had given us.
Her funeral was on Friday the 11th of May. That Sunday, Jason and I flew to Mexico to begin our healing process. I can personally say that I continue to feel the Lord's presence, peace and comfort in this time. There are times of crying and missing our little girl but we feel joy in the midst of it all. We will spend the next days, months, to years processing this. In blogs, prayer, quiet times, worshipping, rejoicing and grieving. This is a wound we will never heal from, but with Christ can learn to live with. I came home with a lot of peace and understanding. While reading a book called "A grace Disguised" by Gerald Sittser, a man who had lost his wife, daughter and mom all in one car accident, I have found some comfort. I will share a little bit of it here: Its a long quote but of so much value "we have the choice to choose the direction our life will head, even if the only choice open to us, at least initially, is either to run from the loss or to face it at best. Since darkness is inevitable and unavoidable- we need to walk in the darkness rather than try to outrun it, to let experience of loss take us to a journey wherever it would lead, and allow ourselves to be transformed by our suffering rather than thinking we can avoid it. We need to choose to turn toward the pain, however faltering and to yield to the loss, though not knowing at the time what that will mean."
Right now, this loss is beautiful. We are experiencing life like never before with our Savior carrying us above it all. We are experiencing new things as meaningful to us, but maybe used to not be. We get to experience the joy of birth and life in a whole new way. We are learning to not take life for granted. That having a healthy baby is truly a miracle. We are learning to be more sensitive to pain and not as oblivious and selfish as we used to be. We get to feel the Lord wrapping his arms around us with peace and comfort and the hope for better days to come. Lastly, and I may say this a million times, we can't wait to experience the joy of another child. Our daughter Esther has her reward! In heaven, right now! We can hardly wait to receive ours and hold her in our arms again.