Thursday, May 14, 2009

One Week

One week ago today we had our routine 20-week ultrasound and heard the news "spina bifida" that would change our lives forever. Kevin said he will never look at an ultrasound room the same again. It is almost surreal as our minds try to comprehend reality and prepare for our special daughter. Our lives will never be the same, but we know they have already been blessed, touched and changed by the life of this baby. We know that will continue for as long as the Lord allows us to have her in our lives.

As the ultrasound began the technition asked if we wanted to know gender. I told her "yes," and that I thought we were having a boy. Within a minute or two, she told us, I'm not seeing a boy! Though the baby was not very cooperative, either, so she said she would return to that later and see if she could get a better picture. She continued the ultrasound and refered to the baby as "baby." Later, during the ultrasound I noticed she switched and began to refer to our baby as "she." This was before she checked gender again. I found this interesting at the time, and now realize she had probably figured out the spina bifida by then and knowing it occurs most in girls, that probably confirmed to her we are having a girl. She did return later for more confirmation pictures.

During the ultrasound I noticed she spent a lot of time on the spine, but they spend significant time there anyway, so I wasn't too worried. I did notice what I thought was an air bubble near our baby's back and almost asked her about it. The doctor said later the technition was very glad I didn't as they cannot reveal results like that to us. She also asked if we had an elevated AFP score. For some reason that test was not run. We had talked about it, but never got it done at my last appointment. I suspect now that she saw the spina bifida and wanted to know if we had elevated AFP scores. Elevated AFP scores can signify a number of things including spina bifida, which is why they then do a follow-up ultrasound. We have been asked by several at the doctors office if that is why we were having the ultrasound.

I had already asked the technition what the proceedure was if she saw something concerning. She informed us that the doctor always comes in and checks her findings before the patient leaves. She finished the ultrasound, but before she left the room she imputed some information into the computer. There is a screen visible to the patient as well. I noticed a screen listing all the major body parts/organs. The clicked a button that put normal in all the fields, and then moved the cursor to the spine field and clicked. I never saw the word abnormal as it sent her to another screen, she took the information and went for the doctor. After she left, I asked Kevin,"did you just see what she did?" He said you're really watching her, aren't you?

The doctor returned just minutes later and I will always be grateful for her candor. She immediately informed us that the technician had detected spina bifida on the ultrasound. She said she would check that, but that she suspected she was correct as they are very easy to identify with ultrasound. She then went immediately to what I had thought was the "air bubble" and informed us that is where our daugther's spinal cord is protruding from the opening in her back.

At the time, I only had a very basic knowledge of spina bifida and Kevin had only heard the word. The rest of the appointment is a bit of a blur. We tried to ask the questions we knew to ask, but really didn't know what to ask. Since Loma Linda is a Seventh Day Adventist Hospital, we were very thankful she did not push "interupting the pregnancy," though she did tell us that she had to mention that to us as an option. We let her know that is not an option for us, and that is the last we have heard of it from anyone. That is a huge blessing as I have heard some pretty terrible stories of how the medical community tries to persuade you to "terminate."

The ultrasound was both a 3-D and 4D which I believe, are the highest level ultrasounds today. They were performed in high risk/advanced fetal medicine office at Loma Linda University Hospital which also has a spina bifida clinic. There have been those who say, maybe the doctors are wrong, maybe it is the mild form of spina bifida which is completely enclosed, but we know what we and they saw. We know that we have had some of the most highly trained doctors confirm the diagnosis.

We also know that we serve a God who can do miracles. Can he put our daughters spinal cord/meninges back where they belong? We firmly believe He can. However, we also know that He has set up the physical laws of this world and He usually operates within those. We know that He does not have to heal our daugther to be glorified and to still be God. We will choose to trust Him regardless of whether He chooses to heal or not. We know that either way we will love our daughter and God will be with each one of us through this process. Is it an easy process? I must admit it is not.

These memories are seared into my mind for now, but I know they may not always be. I wanted to record them for the future and to answer many questions from our dear friends and family whom I don't have time to answer personally.

1 comment:

  1. I also believe these words you write will be a testimony and comfort to your daughter. She will read them one day, Lord willing, and know that she was wanted by two parents, and 4 siblings, who loved and cherished her from the start. She will know that her life strengthened your faith in God. And she will know that you had the "option" of not giving her life and without hesitation chose life for her. She will know her life is not an accident, not a problem, but a precious and valuable life created by almighty God and given as a perfect gift to her family. Amen.

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