Walk As Lions

My sweet friend Erin drove me to the appointment.  On the drive over we talked, joked, had normal conversation.  As we parked I begged her not to leave because once she left I knew things were going to get a little too real. Somehow having her there felt like holding back the tide. Danny met us and they both accompanied me back for the procedure.

The ultrasound tech greeted us with a smile and was upbeat as she told us she was going to take a peek at the baby first before the doctor came in etc etc. I wondered if she knew our baby was missing half of his heart.  I felt really bad for her. How was she going to react when she saw that shocker on the monitor?  Wow, this could get really uncomfortable, really quick.  Danny must have wondered the same thing because he interrupted her and asked if she knew why we were there.  She instantly became somber and as she spoke I realized that she had intentionally been trying to keep the mood light, to tell us the plan without having to say what she was then forced to say.

“I need to make sure there still is a heartbeat (at all) before we prepare for the procedure.”

Strangely this admission put me at ease.
We began the ultrasound and as the first image popped up on the monitor Erin burst out “Oh look at his nose! Look how he cute is!”
My heart leapt within me because I suddenly remembered, “this is still a baby. This is still my baby.” It’s so easy to distance myself and allow all of the “medical stuff” to dehumanize him.

The doctor came in and discussed some of the medical pieces with us including risks. The risk of miscarriage related to the procedure is 1:500 which she explained was actually less than the risk of the results coming back abnormal (based on the presence of the heart defect). Through the ears of a mother whose baby who has been given a probable death sentence my brain processed this info and said, “the risk of your baby dying because he’s dying is much more likely than dying because of the amnio so what does it matter what the miscarriage risk is?”
I did ask the doctor if she suspected the amnio results would be bad news. She responded that she honestly didn’t know in this specific instance because of the NIPT having been negative. She explained that NIPT is so new that in instances like these it is very much unknown how accurate the results of the testing really are.

The doctor and ultrasound tech kept the atmosphere of the room light as they bantered back and forth with each other and us. I may not have been able to express it to them, but I did appreciate it. They were pleased that Jonathan was in a “perfect” position for them to perform the amnio. While there was definitely discomfort involved it was actually much less painful than I had anticipated. The doctor and tech remarked to themselves afterward how smoothly it had gone, one of the quickest and easiest they’d done. Thank you Jesus.

After the catheter was inserted through my stomach and into the amniotic sac, Jonathan reached out and grabbed it. Everyone laughed and called him a stinker.
“Can he see it?” I asked in astonishment.
“No, there’s no way he can see it but somehow he seems to know that it’s there.”

The lighthearted moment struck something heavier inside me. What if this is the closest to interacting and playing with my baby that I ever get? It even seemed sad to me to see the tubes of amniotic fluid. Just a moment ago the fluid was touching my baby and may have gotten to hold him for longer than I will.

The amount of pain I was in after the amnio surprised me, even though the doctor had warned me about it and given recommendations for managing it. I had contractions, my back hurt, my abdomen hurt, it hurt worse when I laid on one side.

 As I laid in bed that night I focused on the physical pain I was in.  I’m sure that made it feel much worse than it actually was but that felt better than the emotional pain and mental anguish I was feeling.

This is what we refer to in hospice as “psychological pain.”  We periodically see a patient who no matter how much their pain medication dosage and frequency are increased, report that it has absolutely no effect on reducing their pain level. In essence the person is struggling to confront the mental/emotional/spiritual pain they are going through related to the end of life and instead experience it as physical pain. I can admit, this is most likely what I was doing to myself.

I felt certain the results would come back positive for an additional complication. Danny was convinced they would not. During those days of waiting he began to prepare himself for the hard road of surgery and recovery. I prepared myself to say goodbye to Jonathan.