Amniocentesis (3/9/17)

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

Regardless of my faith/hope/peace in God I was absolutely terrified to go in for the amniocentesis….ok, maybe terrified is an exaggeration but I was definitely a little anxious to say the least.

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.

Snow Globe

Our excitement over seeing the baby quickly turned to shock and sorrow. The specialist sat down on the bench next to me with tears in her eyes and broke the news that our precious baby’s heart had not fully formed.

(Snow Globe: because sometimes your life gets shaken and turned upside down.)

Danny and I decided that “Jonathan” would be the perfect name for baby boy #4.  Actually, it was more or less the Lord who directed us to the name. Days after deciding on a name we attended our routine, mid-pregnancy anatomy scan.  Typically this is when we find out if the new baby is a boy or girl but we already knew we were having a boy from our non-invasive prenatal test (NIPT).  This screening helps to determine the baby’s risk for certain genetic/chromosomal issues as well as gender. Our screening had come back all clear.

The first thing we saw during the ultrasound was Jonathan’s little button nose that looked exactly like his brothers’ noses had looked in their ultrasounds. During the ultrasound D grew uncharacteristically quiet.  I commented on it then assumed he was having a moment. What I didn’t know was that while I could only see the ultrasound tech’s hand moving the wand over my belly, he could see her face and what he saw in her face unsettled him. Our ultrasound concluded with a specialist coming to the room to speak with us.  I thought this was odd but chalked it up to the fact that they had pre-warned me this u/s would be more in-depth due to the fact that I am 35 years old and technically considered “high-risk”

Our excitement over seeing the baby quickly turned to shock and sorrow.  The specialist sat down on the bench next to me with tears in her eyes and broke the news that our precious baby’s heart had not fully formed.  His heart only had three chambers instead of four.  His left ventricle was missing.  Then we were ushered next door for an urgent, unscheduled appointment with our OB/GYN.

My ob/gyn has been the perfect doctor for us because of his ever-present, calm and laid-back manner. It was reassuring to me for us to see him.  His calm demeanor was present as always yet, the seriousness with which he addressed us in that moment, conveyed the devastating reality of our baby’s situation. Within twenty-four hours we saw the fetal cardiology specialists at the Children’s Hospital over an hour away from our home.

The drive to the appointment felt like it took an eternity.  We spent what felt like another eternity in the waiting room. All of the staff greeted us warmly but we couldn’t muster much response back.  I kept thinking how horrible it would be to work there.  It’s not just a few families here and there you are dealing with who have difficult situations.  Every single family who walks through the door has a baby with a serious cardiac issue.

A fetal echocardiogram was performed.  Now that I knew what the medical staff were looking at, I could so clearly see the three chambered heart on the ultrasound monitor.  I couldn’t bear to watch. I squeezed my eyes shut and had no control over the hot tears that silently slipped out. We waited, then we waited some more.  A nurse finally led us to a room where we were left to sit at a table with a box of tissues. You never want to be the people who get shown to the conference room with the box of tissues.

The doctor and nurse who met with us for over two hours were truly amazing in their patience and compassion. Our baby was officially diagnosed with Hypoplastic Left Heart Syndrome (HLHS).We learned that without immediate and aggressive intervention upon birth, Jonathan can only survive hours, perhaps weeks.  Aggressive intervention would include medication immediately after birth that will keep the heart functioning the same way it functions in utero (able to pump blood to the aorta without use of the left ventricle).  The medication requires close monitoring in the NICU.  After a couple of days of adjusting to life on the “outside,” the next step would be open heart surgery (eventually followed by two more surgeries).

Based on some things seen in the echo (diagnosis of Unbalanced AVSD Right Dominant a variant of HLHS) the doctor did have concerns that Jonathan may have a chromosome abnormality even though our NIPT had not indicated it. If any other such issues do exist then it removes the option for the life-saving surgery.  Without surgery….

We left the appointment well past business hours, exhausted and overwhelmed.  Even so, I didn’t feel hopeless because my ears had heard hope. I heard about the hope of surgery, hope for survival, and hope for quality of life. It wasn’t until later that I could in retrospect process the fears and concerns I didn’t realize I’d heard. It wasn’t until then that I heard the words of what had gone unspoken.

It was a surreal week that started oriented toward a goal with a name but ended it in feelings of loss and confusion.