The Changes

June 12, 2013

We had our last OB appointment on Monday. Or so we thought…

It was a normal, routine appointment. They checked my weight, blood pressure, measured my ginormous belly, and listened to my sweet girl’s heart beat. It’s pretty funny watching my doctor try to find her heart beat with the doppler. Her kicks are so fierce, and his eyes get wide with surprise as he watches my belly bounce around while I’m laying perfectly still. Robert says she looks like she’s river dancing. She is by far the most active baby of all my pregnancies. So, that was it. We were done. The next time we would see our doctor it would be the big day.

We walked across the street from the clinic to the hospital, because we had a meeting set up with the nurse who is coordinating our care, Life Share, a hospital chaplain, members of the ethics committee, a neonatologist, a pediatrician, a bereavement nurse, and who the hell knows who else was in there. People just kept coming in. Annie is apparently a rock star up at OU Medical, and she was bringing people from all corners of the hospital into this meeting. We had a large amount of ground to cover in this meeting, and they just got right to it.

First, the ethics committee asked us if organ donation was something we were sure about and if we had pursued it or someone had coerced us. We assured them that it was what we wanted. Then we discussed the testing that needs to be done after Annie is born in order to find a proper match for organ donation. They can draw blood from her umbilical cord after it is cut, and testing takes about 4 hours. We also discussed the possibility that within that 4 hours, Annie’s oxygen levels may drop below a certain point and put her organs in danger of damage. We had to decide several “what if” options. We signed permission to intubate her if necessary to keep her oxygen up, only to have to turn the machine off when the test results come back. Then I asked if that could be done at my bedside, or if they need to take her somewhere else if I can go too. I’ll be fresh out of major abdominal surgery, so that’s kind of a tricky problem. By the end of the meeting, there were several options being explored to keep us together as much as possible. Worst case scenario, however, is they have to take her to the NICU without me.

This past month there has been a recurring theme when I talk to Robert about our baby’s birthday. I just keep telling him over and over, “you can’t leave me. No matter what happens that day, you have to stay right beside me.” I’m terrified of being alone during this. Robert has gotten me through to this point, and I can’t tell him enough how much I physically need him on that day. This changes all of that. I can’t let our girl go off by herself.  There are about a billion hypothetical situations we are trying to plan for, and in this particular situation, if they needed to take her away, Robert would stay with Annie.

Life Share also explained to us the need to procure her organs within 60 minutes of cardiac death. This means that after she is declared dead, we get 5 minutes to say goodbye before they rush her off to surgery. This entire experience is impossible to prepare for, but this?!!? I just can’t fathom how painful this will be. I have asked multiple times if we can have her back after surgery, and they have always reassured me that we can. That time in between I just can’t think about right now.

After Harper Lou was born, I couldn’t go see her for 24 hours. I was still in critical condition because of severe preeclampsia, and that was excruciating. My little girl that I had carried her entire life was ripped from my belly and whisked away to another part of the same building, but it may as well have been Antarctica. When I finally got to wheel up to the NICU to see her, I never wanted to leave her side. Then 3 days later, I was discharged home and had to leave her at the hospital. I only thought that was hard. I got to go and visit her every day. I got to wake up after crying myself to sleep, get dressed, drive to the hospital and hold and kiss my baby. After Annie leaves us here on earth, that’s it. I’m sure there will be countless nights of crying myself to sleep, only to wake up with nowhere to go…

We were also told that the specialist from California that is flying in to procure Annie’s kidneys can’t be here on the 21st, our scheduled delivery date. The team needed to check with my doctor in order to delay the delivery. They were now planning on the 25th. That news sent me reeling. I finally had a specific day to dread, and they took it away. Today I called my doctor to see if he had rescheduled the delivery, and he gave me another blow. He is putting on a conference in Tulsa and is unavailable on the 25th. It had never occurred to me that this man wouldn’t be there with us and deliver Annie. There was a long silence on the phone, and I finally said:

“I don’t know what to do. Don’t make me decide.”

I couldn’t decide between having Dr. Smith deliver our baby, who has been so compassionate and understanding and walked with us on this road from the very beginning, and our desire for pieces of Annie to live on and lives to be saved through organ donation. He told me he would make some calls and get right back to me. When he called me back, it was scheduled. All parties involved had agreed on the 26th. Our timeline has gone from 10 days to 15 days, but we are able to do this exactly how we want. So I marked off Annie’s birthday on the 1st day of summer, flipped the page in my calendar, and rewrote Happy Birthday on the following week. Now I’m just praying I don’t go into labor on my own.

On the day of Annie’s delivery, we are having our immediate family come to the hospital with us. We are all going to get there half an hour before we need to check in and gather in the chapel. I feel like anxiety is going to be looming over me like a monster on that day, and I don’t want to be medicated any more than I have to be for surgery. I want to remember every moment I have with my daughter. I want to pray with our families for calm and peace as well as several other things, and I’m so thankful the chaplains are letting us have the chapel to ourselves.

In the past 24 hours I have felt myself start to let go. I had been trying to control this again and there is just no way. In one little meeting everything I had planned was blown away. I was emotionally invested in my plan because it was mine. I read a book recently about a woman whose experience parallels mine in so many ways, and one of the things she said struck me deeply. It has been something I’ve had to remind myself of several times, especially in recent days. “I gave my deepest hurt to the Father who wanted nothing less than every bit of it.” (-Angie Smith) I have been hurting so badly for 4 months now, that in the past 24 hours I have felt myself go numb. I can’t mentally explore another hypothetical situation, nor should I. I just need to let it all go, and trust. I do trust God, with everything I have, but I’m human and I have a brain that tends to go into overdrive and it also tends to be louder than my heart. Thankfully, my brain is out of gas. All I can hear now is my heart and it is telling me that my God is good, God loves me, and God loves Annie.

We will get through this, no matter what situation arises. I trust every decision we have made up until now, because we have made them all faithfully and prayerfully. I know the hours after Annie’s death are going to be excruciating, but I just put myself in the shoes of the mother praying for a donor kidney for her sick baby. We are souls who occupy these bodies and even though I will still be holding her, my baby won’t be in my arms after her soul leaves this earth. I know I will be a heartbroken mother, and I will want to take comfort in hugging and kissing that little body, but I can wait until Annie’s job is done. She has helped so many people spiritually and emotionally, it only makes sense to complete her legacy and add physically to that list as well.

If you could pray for us, we need it. We need strength, peace, and endurance. We have another “last appointment” next week, so I’m sure there will be more changes. We also need patience.

Thank you so much for your thoughts and prayers. We have felt and seen God’s love in ways we never have before, and it’s the most beautiful and inspiring thing. I can’t go to sleep without waking up to a text or email from someone new telling me how much they are thinking of us and praying for Annie. I have always had a hard time asking for prayer, and in the time where we need it the most, the body of Christ has come together in ways I have never seen before. We are and will be forever grateful to you all. Thank you.