Beauty through pain and faith through great storms…
I’ve been so hesitant to post anything, because for the past month I have been in constant prayer for a different outcome…
My sweet Miranda Gloria was born at home on September 29th. After taking her first breath and letting out a soft cry she quickly turned blue.
We committed her to God’s hands.
My midwife and her assistant began immediate rescue attempts with deep suction and oxygen and also contacted EMS for a hospital transfer. Even the hospital could not stabilize her after intubating. In her first 24 hours of life she was transferred to 3 hospitals, the final one being Johns Hopkins where she was placed on ECMO, a heart and lung bypass machine. We were given no promises, she had been without adequate oxygen for great lengths of time, she had both her lungs collapse at the second hospital, her heart stopped in the process of going onto ECMO and she had been resuscitated. She was now stable but in critical condition.
Our new life had begun.
My husband and I began spending alternating nights at the hospital with her so that she wouldn’t be alone and the other children would see both of us each day as well. Our church family stepped in immediately to make sure our home was taken care of, meals were delivered, child care was arranged and housework was handled. When we were home we were free to just rest and spend time with our other children, when we were at the hospital we could just spend time bonding with our sweet baby.
We prayed constantly for healing.
She was diagnosed with PPHN of unknown cause. I had no signs of infection, I had a beautifully uncomplicated pregnancy, all my screening was negative my ultrasounds had shown nothing of concern. Her echocardiograms and xrays showed no congenital defects. The doctors were quite challenged by her.
They began every known intervention for PPHN and even tried unconventional therapies in hopes of reversing her condition.
She didn’t respond to any of them.
The only other thing it pointed to was alveolar capillary dysplasia(ACD). That could only be diagnosed by biopsy. Because she was on ECMO which necessitated her being on heparin the surgeons would not recommend biopsy because of the inherent risks. Vince and I declined the biopsy because it wouldn’t change anything. ACD is not reversible. Knowing whether or not she had it would not give us anything more than an “answer”, it would not give us back our girl and it could possibly take her from us even sooner.
We know we are never promised tomorrow, we continued to thank God for each day as we received it and for His mercies and grace that were ever present in each moment.
In this past week we knew she was nearing the end of her very short life. Each day was bringing her more complications. God was making it clear to us it was her time, though we continued to pray and hope for a miracle. On Wednesday we began talking to the doctors about removing ECMO support and how we could allow her passing to happen as gracefully as her birth did.
I needed to hold my baby.
I asked if it was possible to remove the ECMO cannulas. They consulted with the surgeons and agreed to do it and warned me of the risks of her passing in the process. Through prayer I accepted that I may not ever hold my daughter while she was alive, but I knew I needed to hold her with those things removed. I needed to hold her close and kiss her and I could not do it with her attached to that machine.
On Thursday morning, 28 days from her birth, my husband and I gathered our other children in our bed and shared with them that God was calling Miranda to Heaven and that today would be our last day with her. We all cried. We answered their questions as openly and honestly as we could, the same as we had been in the last four weeks. They would be brought to the hospital to kiss her goodbye.
Our pastor and his wife came over to help us through the day. Vince and I made our final trip to Johns Hopkins. The staff had moved Miranda to a private room for us. My dear friend Kim came to take pictures for us. The children were brought up by my pastor’s wife and one of my sisters (the same sister who sat with me each of the weekends of Miranda’s life). The social worker and child life specialist helped us bring the children into the room. They saw their sister and all of the medicines and machines that were required to keep her alive. The nurses, respiratory therapists, and doctors were with us to meet our other children and help answer any questions that they had. Doctors that had been on Miranda’s team from previous weeks came in to see her and our family as well. We were so touched by their sweetness. My older children touched and kissed their sister, talked to her and helped with some of her care. We gave them each as much time as they wanted. When they had all said their goodbye we helped them out of the room and they were brought home where other family members were gathering.
The surgical team came in and prepared to remove Miranda from ECMO and to remove the cannulas. The surgery took minutes, but it seemed like forever. Then we were called back in so I could hold my daughter for the very first time.
She had survived the surgery. Her heart was beating and the RT was bagging her so they could remove her from the ventilator and place her in my arms.
She lived her final hour in my arms. Her little heart beat for longer than I ever imagined it would as my husband and I said goodbye to her. Her grandparents each came in to say goodbye as well. She very quietly faded some time after we asked for her to be extubated. She fought so hard while we prayed for her run to Jesus’ open arms and leave this pain-filled life.
After she passed I dressed her in a diaper and a sweater I knit for her. I washed and combed her hair, it was beautifully dark and curly just like mine. Kim took pictures of her and of Vince and I with her. We said a final goodbye and prepared to leave the hospital.
Family had gathered at our home to receive us back. We all cried and laughed and just enjoyed being close for the evening.
Her life and passing were more beautiful than I could ever imagine. There is a gaping hole in my heart and my arms long to cradle my youngest daughter, but I know she rests joyfully in the arms of my Savior as we each wait for the day we are reunited when we all return Home. Through this journey we have seen much healing and miracles, but they were different from what we expected. Instead of Miranda’s physical healing we were witness to the healing of countless broken or hurting relationships and miraculous introductions to families we would never have met in other circumstances and being able to share our faith with doctors, staff and strangers that may have never listened to us outside of this.
We are planning the arrangements for her funeral services and memorial service that will happen next weekend. We will celebrate her very short but incredibly grace-filled life, while we obediently stride to bring glory to God through this storm that we know has not yet fully passed us.