I knew the Bible was true. I clung to the words written in it. And I knew prayer was powerful. A song that kept coming to me was that there is power in the name of Jesus. People from near and far reached out to us and to our families to share they had been on their knees in prayer for us. You know the difference in the ol' "I'll pray for you" or "Praying!" messages you get and the real, get down on your knees face to face with God "I am praying boldly for you" messages. The latter was felt a million times over through friends, family, strangers. In my life I had never felt so loved or so close to Christ.
The genetic counselor had told us in our diagnosis appointment that we could have an ultrasound whenever we want between then and delivery. Some people choose often; some people choose never. We chose about a week before the delivery so our family could be there with us to see her alive one last time. We knew at this point she would most likely not live through delivery, so we prepared ourselves for this ultrasound as we approached the goodbye stage.
To make it easier for us the office had scheduled our appointment in Midland. I called to change that to Odessa because we loved the ultrasound tech there. And we knew if anything had changed he would notice. Overall, we were just more comfortable with the same tech. We weren't even going to see the doctor or the genetic counselor. This was just for us to begin saying goodbye.
When the tech started the ultrasound, I knew surely my mind was playing tricks on me. I did not say a word as I stared in disbelief. Did her bladder look smaller or was that just me?
At that time he said, "I'm not sure, but I think the bladder is smaller." I held my breath. Oh, God, please. Please.
We let our parents come in for what seemed like 10 seconds, and they were escorted back out. I'm sure they were wondering why they had come all that way to not really see anything. But the tech started looking for the older ultrasounds and comparing the measurements. He was so excited when he found them, "Yes! Last time the bladder was over 5 centimeters. Today it is less than 3. I am going to get the doctor."
Cash and I grabbed hands. Was this happening? Of all the times we had expected a miracle, it had never happened. But now when we came to say goodbye, was a miracle in our midst? A different doctor came in and said he was going to take a look as our doctor was in Midland that day. He said yes the bladder was smaller but most importantly the amniotic fluid levels were normal. Normal. They were supposed to be almost all gone by now. He went out to call our doctor.
He came back in with the genetic counselor and said our doctor had told him, "That is miraculous." My heart leapt.
They quickly scheduled us for 8:40 the next morning to see our specialist. We were ecstatic but trying to control our emotions. What if he saw something totally different? It didn't matter in that moment in time. I told Cash tomorrow can worry about itself, tonight we are praising God.
The next day we saw our specialist who explained to us some of the very real obstacles we had yet to overcome. He said looking at that moment he would guess megacystic microcolon (MMIHS). But he was not sure as he was not in this daily anymore, so he wanted us to go to Houston to the Children's Memorial Hermann Fetal Center. He felt confident that the guys there live in this more than he does and they could steer us in the best direction.
I googled MMIHS. And suddenly the excitement of continuing the pregnancy faded. The average lifespan is 3 1/2 months. Children who survive have multiple organ transplants and life for them..and their families...is hard. Hospitals. Surgeries. Feeding tubes. The list goes on.
The feeling of anger crept back up. "Oh, God, yesterday we began to feel a miracle. Today we hurt so deeply. Please, Lord, spare us from an even grimmer outlook." We felt back at square one, back to facing decisions that no parent ever wants to make. I could not believe this. In a very real sense I was angry that we had had peace and were learning to deal with loss then were tossed an ounce of a miracle all to have it slammed back down our throat.
In the week we waited for Houston I compared us to the Israelites in the desert. It seemed so much easier to crawl back into the bondage of slavery, the bondage of death, because at least then we knew what we were getting. That probably sounds crazy. But that is as real as I can get. I had accepted death; now I had to wait on the promised land. Or was it even going to be a promised land? Would it just be a new bondage of slavery?
The genetic counselor had told us in our diagnosis appointment that we could have an ultrasound whenever we want between then and delivery. Some people choose often; some people choose never. We chose about a week before the delivery so our family could be there with us to see her alive one last time. We knew at this point she would most likely not live through delivery, so we prepared ourselves for this ultrasound as we approached the goodbye stage.
To make it easier for us the office had scheduled our appointment in Midland. I called to change that to Odessa because we loved the ultrasound tech there. And we knew if anything had changed he would notice. Overall, we were just more comfortable with the same tech. We weren't even going to see the doctor or the genetic counselor. This was just for us to begin saying goodbye.
When the tech started the ultrasound, I knew surely my mind was playing tricks on me. I did not say a word as I stared in disbelief. Did her bladder look smaller or was that just me?
At that time he said, "I'm not sure, but I think the bladder is smaller." I held my breath. Oh, God, please. Please.
We let our parents come in for what seemed like 10 seconds, and they were escorted back out. I'm sure they were wondering why they had come all that way to not really see anything. But the tech started looking for the older ultrasounds and comparing the measurements. He was so excited when he found them, "Yes! Last time the bladder was over 5 centimeters. Today it is less than 3. I am going to get the doctor."
Cash and I grabbed hands. Was this happening? Of all the times we had expected a miracle, it had never happened. But now when we came to say goodbye, was a miracle in our midst? A different doctor came in and said he was going to take a look as our doctor was in Midland that day. He said yes the bladder was smaller but most importantly the amniotic fluid levels were normal. Normal. They were supposed to be almost all gone by now. He went out to call our doctor.
He came back in with the genetic counselor and said our doctor had told him, "That is miraculous." My heart leapt.
They quickly scheduled us for 8:40 the next morning to see our specialist. We were ecstatic but trying to control our emotions. What if he saw something totally different? It didn't matter in that moment in time. I told Cash tomorrow can worry about itself, tonight we are praising God.
The next day we saw our specialist who explained to us some of the very real obstacles we had yet to overcome. He said looking at that moment he would guess megacystic microcolon (MMIHS). But he was not sure as he was not in this daily anymore, so he wanted us to go to Houston to the Children's Memorial Hermann Fetal Center. He felt confident that the guys there live in this more than he does and they could steer us in the best direction.
I googled MMIHS. And suddenly the excitement of continuing the pregnancy faded. The average lifespan is 3 1/2 months. Children who survive have multiple organ transplants and life for them..and their families...is hard. Hospitals. Surgeries. Feeding tubes. The list goes on.
The feeling of anger crept back up. "Oh, God, yesterday we began to feel a miracle. Today we hurt so deeply. Please, Lord, spare us from an even grimmer outlook." We felt back at square one, back to facing decisions that no parent ever wants to make. I could not believe this. In a very real sense I was angry that we had had peace and were learning to deal with loss then were tossed an ounce of a miracle all to have it slammed back down our throat.
In the week we waited for Houston I compared us to the Israelites in the desert. It seemed so much easier to crawl back into the bondage of slavery, the bondage of death, because at least then we knew what we were getting. That probably sounds crazy. But that is as real as I can get. I had accepted death; now I had to wait on the promised land. Or was it even going to be a promised land? Would it just be a new bondage of slavery?
To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:
Things Aren’t Quite Right: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine.html
There Is Power In the Name of Jesus: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_90.html
Houston Is Just One Step Closer to You: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_16.html
No comments:
Post a Comment