CreativLEI

everything has changed…

Creating a Life You Love· Life After Loss

Everything in my life has changed, yet it is oddly the same.

Here we sit in the second week of November, eleven months after I became pregnant with Miranda.

But we’re still a family of seven.

Nearly a year has passed me by.

I went to the local knit night last night at the library. Someone asked me how the baby was doing and then quickly apologized when I told her that she died. Others came over and hugged me and quietly said they were sorry to hear about my loss. Like it was some secret we were keeping.

I know my baby is dead. It is okay to talk about it out loud. In fact I like talking about her. I don’t want to wipe it away like it never happened. Since the beginning of the year we had been waiting and preparing for her. She was born and lived for four weeks. I have memories of her. They are few, but they are there and I like sharing them.

I realize the awkwardness of it all. I’m sure I wouldn’t know what to say if I was on the outside of this either. I’m trying to be more sensitive now to others than I was before.

I am acutely aware that the world has not stopped since the birth and death of my little girl.

I don’t really want it to.

I just don’t want to pretend that everything is “normal”. On September 29th “normal” became a foreign concept to me, my husband and my children. We will never regain what was lost.

I don’t believe that God makes mistakes. I still know that the days Miranda’s birth and death were ordained before she had been formed.

But that doesn’t erase anything.

All those feelings are there. All the pain is there.

We just aren’t walking the path alone. My strength is NOT strong enough to get me through this grief. The notion that He doesn’t give us more than we can handle… Yeah, I don’t buy into that one. It certainly isn’t scriptural or true. Surviving the loss of my baby is MUCH MORE than I can handle. I’d be completely lost in despair if it were not for the strength of my Savior.

I have to lean on Him. To choose not to do so would be even more miserable.

My challenge is to figure out how to move forward embracing all that has changed in my life while from the outside everything still looks completely the same.

strangely (un)sad…

Creating a Life You Love· Life After Loss

I miss my daughter terribly.

But don’t know if I would say I’m sad.

There isn’t a moment that passes that I don’t wish she was here in my arms. I’d be a complete liar if I said I don’t look around during my normal “kiddie head count” when we’re out and about and pause for a moment wondering where my sixth child is only to realize, again, that she is gone.

I’m not sad for her. I know she is free from her earthly, broken body and she dances in glory in Heaven. She has seen the face of my Savior. She has met our brothers and sisters in Christ that have also returned Home. She may have even already met the babies my mother lost to miscarriage, the babies other family members have lost, the babies my friends have lost. They must be having quite a celebration there in Heaven.

I’m sad for us.

We have to stay here waiting for that day when we are welcomed into Heaven, waiting in this imperfect sin-filled world, waiting for the day we get to go Home. I’m sad that my daughters will always miss their little sister. I’m sad that Nate is a big brother but he doesn’t get to hold his little sister, instead he holds her picture. Sad that my older boys will always wonder why she couldn’t be “fixed”. Sad that when my children were supposed to be learning math and history they were instead learning how to cope with death.

But I’m also full of joy.

I’m happy that I had an uncomplicated pregnancy and that even my labor was peaceful. Happy that I was able to give birth at home surrounded by people who love me, and that my other children saw and kissed their sister before the ambulance whisked her away. I’m forever grateful for the doctors, nurses and RTs at JHH who cared for my sweet girl and answered every question I had, but I am glad my faith was in my Lord and not the doctors.

I’m thankful that I had my little girl for 28 days when she could have died on that first night.

I cry often, but I take refuge in the knowledge that Miranda will never shed tears again, and that makes me un-sad for a while longer.

Beauty through pain and faith through great storms…

Creating a Life You Love· Life After Loss

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.

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