I guess I think in song. Someone was singing that song yesterday, and it has gotten me thinking. God is love. He is in charge. When I am powerless, I can either despair, or trust in God. The first time I heard that song, I was at an abortion clinic. I was a child. It struck me with its message of a beautiful, faithful, strength. As I watched pro-lifers being dragged peacefully off to jail in defense of the unborn, the song seemed singularly appropriate. There is no evil, no power anywhere, that can stand against our Lord.
The doctors were amazing. Actually, the whole staff was amazing. The technicians who actually gave me the Ultrasound and MRI were wonderful. I had my MRI at 8 a.m.. At 2:30 p.m. I was in the cafeteria and the technician who had taken care of me came over to ask how I was doing, how everything went, and if I needed help finding my next appointment. It was amazing to feel so human in such a large place. I am not a chart. I am not a number.
It was also nice to finally have some answers. I know it has only been a few weeks. I know that Sarah is still very small and getting the information, nevermind a diagnosis, is very difficult. Still, it seems like it has been much longer, and I am not good with uncertainty. Maybe that is one of the fruits God will grow from this pain; maybe I will learn how to handle uncertainty.
The doctors told the story of what they were looking at, and what concerns they had, from the top down. The skull is a little bit misshapen. The MRI showed a clearer picture than the Ultrasounds could, and it became clear why each doctor looking at the ultrasound had a different opinion. It is slightly, not dramatically, different in a few different ways. The radiologist thinks that there is fusing- that is that the bone plates have begun to knit together. That can create problems for brain development, but so far the brain looks OK. It is called Craniosynostosis, if you would like to look it up.
The lungs are the most serious concern. They are larger than they should be, and the diaphragm is flat. She, (the radiologist who was interpreting both the ultrasound and the MRI) believes that it is caused by fluid in the lungs. That is not really a problem, unless it cannot get out. If there is a blockage of some kind, than when the baby is born and has to breath for herself, she will not be able to. I believe she called it CHAOS, but I will have to check on that. Anyway, there are potential treatments, in the worst case scenario, but they are risky for both me and Sarah.
The heart echo also showed an abnormality, but it is less worrisome. There is a vein (artery?) that brings blood from the umbilical cord to the heart. Its normal path is through the liver, which slows blood flow. Sarah's goes straight to her heart. The concern is that it could stress her little heart. It may not cause any problems at all, and it will be moot when she is born. We follow up in one month to make sure the heart still looks healthy.
There were a few other minor things. Taken together, the doctors are trying to find a cohesive diagnosis. Their best guess now, which is not a diagnosis but truly a guess, is called Apert syndrome. It does not fit perfectly, but nothing does.
The genetic counselor was very helpful. She did not discuss abortion, as I feared. It is really wonderful to have been so wrong about that! She even asked if we had named our daughter yet, and thereafter referred to our daughter by her name. When we met her, at first it seemed like she was giving a pop quiz. We soon learned that her job was to make sure we had some understanding about what was going on. She asked what the other doctors had told us, and whether or not we understood. We discussed every piece of new information. She paused every few minutes to ask if we had any questions. When we left, knowing that we were sure to later have questions later, she gave us her contact information. She made herself available to us, understanding that we kind of felt like deer in the headlights. We were hit with a lot of information, some very difficult, all of it new, much of it medical, and we would need time to sort it out in our minds.
So, that is what we know. It is good to finally feel like we understand what is causing concern. We do not have answers, but we at least know what the doctors are seeing and why they are concerned about what they see.
We hear that knowledge is power. Well, sometimes it is not. Sometimes, it is just knowledge. We know more, and we are grateful to the amazing doctors who were able to obtain and share that knowledge. We expect to learn more still as Sarah grows. But we are powerless to do anything for her, for now. So, we trust in God, who is all-powerful. We pray that He bless our tiny one. Love is Lord of Heaven and Earth.
"What thought the Tempest round me roars,We went to Children's hospital yesterday. We met with so many people, it was completely overwhelming. It was a long an difficult day. We had to get up earlier than I am used to, to be at the appointment ontime. (DC traffic being what it is, we were late anyway.) I had four appointments: an MRI, an ultrasound, a echo cardiogram, and genetic counseling. The MRI was first. (I fell asleep. How does anyone not fall asleep? They tuck you in to a little cacoon with as many blankets as you like, and your whole job is to lie still. It is, admittedly, noisy, but after a few minutes I was used to the noise.)
I hear the Truth! It liveth!
What though the darkness round me close,
songs in the night it giveth.
No storm can shake my inmost calm,
while to that rock I'm clinging!
Since Love is Lord of Heaven and Earth,
how can I keep from singing?"
The doctors were amazing. Actually, the whole staff was amazing. The technicians who actually gave me the Ultrasound and MRI were wonderful. I had my MRI at 8 a.m.. At 2:30 p.m. I was in the cafeteria and the technician who had taken care of me came over to ask how I was doing, how everything went, and if I needed help finding my next appointment. It was amazing to feel so human in such a large place. I am not a chart. I am not a number.
It was also nice to finally have some answers. I know it has only been a few weeks. I know that Sarah is still very small and getting the information, nevermind a diagnosis, is very difficult. Still, it seems like it has been much longer, and I am not good with uncertainty. Maybe that is one of the fruits God will grow from this pain; maybe I will learn how to handle uncertainty.
The doctors told the story of what they were looking at, and what concerns they had, from the top down. The skull is a little bit misshapen. The MRI showed a clearer picture than the Ultrasounds could, and it became clear why each doctor looking at the ultrasound had a different opinion. It is slightly, not dramatically, different in a few different ways. The radiologist thinks that there is fusing- that is that the bone plates have begun to knit together. That can create problems for brain development, but so far the brain looks OK. It is called Craniosynostosis, if you would like to look it up.
The lungs are the most serious concern. They are larger than they should be, and the diaphragm is flat. She, (the radiologist who was interpreting both the ultrasound and the MRI) believes that it is caused by fluid in the lungs. That is not really a problem, unless it cannot get out. If there is a blockage of some kind, than when the baby is born and has to breath for herself, she will not be able to. I believe she called it CHAOS, but I will have to check on that. Anyway, there are potential treatments, in the worst case scenario, but they are risky for both me and Sarah.
The heart echo also showed an abnormality, but it is less worrisome. There is a vein (artery?) that brings blood from the umbilical cord to the heart. Its normal path is through the liver, which slows blood flow. Sarah's goes straight to her heart. The concern is that it could stress her little heart. It may not cause any problems at all, and it will be moot when she is born. We follow up in one month to make sure the heart still looks healthy.
There were a few other minor things. Taken together, the doctors are trying to find a cohesive diagnosis. Their best guess now, which is not a diagnosis but truly a guess, is called Apert syndrome. It does not fit perfectly, but nothing does.
The genetic counselor was very helpful. She did not discuss abortion, as I feared. It is really wonderful to have been so wrong about that! She even asked if we had named our daughter yet, and thereafter referred to our daughter by her name. When we met her, at first it seemed like she was giving a pop quiz. We soon learned that her job was to make sure we had some understanding about what was going on. She asked what the other doctors had told us, and whether or not we understood. We discussed every piece of new information. She paused every few minutes to ask if we had any questions. When we left, knowing that we were sure to later have questions later, she gave us her contact information. She made herself available to us, understanding that we kind of felt like deer in the headlights. We were hit with a lot of information, some very difficult, all of it new, much of it medical, and we would need time to sort it out in our minds.
So, that is what we know. It is good to finally feel like we understand what is causing concern. We do not have answers, but we at least know what the doctors are seeing and why they are concerned about what they see.
We hear that knowledge is power. Well, sometimes it is not. Sometimes, it is just knowledge. We know more, and we are grateful to the amazing doctors who were able to obtain and share that knowledge. We expect to learn more still as Sarah grows. But we are powerless to do anything for her, for now. So, we trust in God, who is all-powerful. We pray that He bless our tiny one. Love is Lord of Heaven and Earth.
"O Most High, when I am afraid, in you I place my trust."
Psalm 56:4
This blog touched my heart today. I remember the overwhelming feelings that you are feeling. I am glad your genetic counselor is a good one. We had a wonderful one too. Keep blogging---your writing, thoughts, and songful soul will bring you God's direction. Beyond that your blogging will reach out and gift someone else.
ReplyDeleteLet His words continue to flow through you. Know that our prayers will be added to those already praying for you....your writings will be part of the journey for many others. Wishing you blessings....Kate http://BelieveAnyway.wordpress.com
Love and prayers for my little namesake from your cousin
ReplyDelete