Charlie’s Story…Part 1
We are slowly approaching Charlie’s first birthday and I can’t believe how fast the time has gone by. I know the saying, “they grow up so fast” first hand with my 10 year old triplets but it still amazes me how much she has grown and changed this year. I thought I would blog about our little girl and what we have been through these past few years since I get asked about it so frequently.
So here it goes…
My husband and I were blessed with three children each when we began dating and got married. We discussed the idea of having a child together an “ours” but quickly dismissed the idea as we began to live our lives together. We were very busy running here and there and we weren’t sure we would have time for a baby. Our children were older and able to do things independently. The idea of moving backwards and starting all over was too overwhelming. Every other weekend we were also kid free. We loved traveling, relaxing, and catching up on those weekends. We would go to dinner early at 3:00 and 4:00 to beat the crowds and do whatever we wanted. My BFF always teased us saying “Grandma and grandpa were going out to eat.” We had the best of both worlds in our new found lives.
God had different plans…
Christmas of 2012 I wasn’t feeling quite like myself. I was tired and not very hungry. I remember thinking that something was wrong. The day after Christmas my husband and I were driving to Lowe’s when I mentioned to him that I wasn’t feeling well. During that conversation it occurred to the both of us that maybe I could be pregnant. My husband asked me when I had my last cycle and I simply couldn’t remember. As he began to ponder this idea he said to me…”If I was a betting man, and I am a betting man, I think you might be pregnant.” In my head I though this was impossible. I had struggled for over a year to have my triplets and that was with a lot of help. We decided that maybe I should take a pregnancy test. We stopped at the store on our way home and picked one up! I kept thinking there was no way it could be positive. I had never taken a positive home pregnancy test. I think my husband was in shock at the thought as was I.
When I got home I of course went straight to the bathroom. My parents were in town staying with us so I had to be discrete about the entire thing. As I sat waiting, I couldn’t believe my eyes. It didn’t take long when I saw the line. I was shocked, excited, and very afraid. I didn’t know what I was going to say to my husband.
I went out into the garage and my husband was putting our cow away. Yes a cow! With 8 people in your family you have to buy a 1/2 of a cow to feed them all. So he was loading the meat into the freezer. I pulled him aside and shared the news. I think he was shocked just as much as I was. We both were in disbelief! We got ourselves together and tried to go about our business for the next day or so while my parents were with us.
I did the next typical thing and called my OB. I told her I had taken a positive test and asked for the next step. Keep in mind, my last pregnancy was not typical-triplets and fertility drugs. The nurse ordered blood work for the following week.
Needless to say we had to tell our parents. My parents were getting ready to leave for Florida and my husband thought it was best to tell them in person. I think I sent shock waves through my dad, he was speechless. My mom didn’t believe me at all. She wanted proof. My husband’s parents were excited to be welcoming their 16 grandchild!
For the next week Brian and I became excited about our little surprise. We began to see all the positive things this would bring to our family and we were looking forward to our blood work results.
I went to the lab and had my bloodworm drawn. I knew I was pregnant because as each day passed, I felt sicker and sicker. A day after I received a call from my OB’s office. It was the nurse. She asked me if twins run in my family. I think my jaw fell to the floor. I had triplets but it was through infertility. Sure enough, my husband is a twin. The nurse explained that I had really high HCG. She thought maybe I was further along that I had thought. So she ordered a ultrasound. This would be just the beginning of our worrying.
A week later Brian and I were at the office getting an ultrasound. Even though I have no medical background, I am very familiar with ultrasounds. I had soooo many with the triplets! I feel like I am able to see things pretty well. During the ultrasound the tech asked us how far along we were and she seemed a bit confused. I had a sac (only one) but there was no heartbeat yet. She said I was JUST pregnant! So I had to come back in one week.
A week later there I was again waiting for the ultrasound. I felt like my world had flipped over and I was a nervous wreck! We had the ultrasound done and there was an amazing little heartbeat! We left the appointment with smiles! I was so happy and the stress was gone.
At my next OB appointment everything went as planned. We figured out my due date and went over all of the routine things. As I was getting ready to check out, I said to my doctor (with a little sarcasm) …”Boy you really had me worried there for a little while!” I will never forget her response. She didn’t smile, or say a thing. That should have been clue #1….she was still worried.
During the next OB appointment she told me that I was scheduled for a Down Syndrome screening. She said it involved an ultrasound to measure the babies neck and a few finger pokes. She didn’t ask me if I wanted it, she told me it was scheduled. Clue #2!
So I went for the ultrasound. I was a little nervous but not too much. I asked the tech if the fluid in the neck was measuring normal and she told me it was. I was so relieved! The tech then pricked my finger and put a few drops of blood on some special paper. That was it! I left there with a big smile on my face thinking all of this worrying was almost over! NOT!
At my next OB appointment I didn’t give it much thought. We went through the routine things and then I finally asked how my blood work came back. It was then that I realized something was wrong. I felt like my doctor began to skirt around the issue a bit. Then came the statistics. I have to admit much of this part is a blur. She explained that due to my age, there was a 1 and 100 and something chance for the baby to have Down Syndrome. The ultrasound came back great but the blood work changed my statistics. I now had a 1 in 16 chance of having a baby with Down Syndrome. Shocked does not even describe how I felt. I remember thinking, there is no way! Of course I didn’t have my husband with me because I wasn’t that worried at the time! Next was the whole run around about doing amnio to get a 100 percent confirmation either way and about aborting before 20 weeks….. yada yada! I don’t know that I heard much of any of it I just remember wanting Brian immediately and trying not to cry.
I didn’t get far, the parking garage, before I began to freak out and call Brian. Of course being the level headed man that he is, he didn’t seem too worried. Let me mention that he is junior high math teacher. He said statistically speaking we had a 15 out of 16 chance that she didn’t have Down Syndrome. I was a crying mess and he was my rock. Something that would change back and forth throughout this entire process.
Let me just stop and say that aborting the baby was not an option for me! Our six children were beyond excited about this upcoming baby and I could never do that. Also the amnio was not an option for me. I don’t frown upon that for others it just wasn’t for me. I didn’t want to risk anything happening to this baby just so I could know either way.
Our next step was to go to the high risk doctor and meet with the genetic counselor. I was prepared to hear the same options that my OB gave me and I went in telling my husband that there would be no amnio or abortion! He was in agreement with me. First we met with the genetic counselor who asked a lot of family history and went over Down Syndrome briefly with us. Then we went for the ultrasound. I was told they were looking for “soft sign”. These are signs they find on the ultrasound that are sometimes characteristics of children with DS. I had done my research and was prepared. The ultrasound took over an hour. During that time, I saw that we were having a baby girl. I of course was thrilled but would have been happy either way! What’s one more girl when you already have 4! The little girl was very active and stubborn. It took awhile to get all of the pictures they wanted. Most of the focus was on her heart.
After the ultrasound we met with the high risk doctor. This doctor just happened to be the same doctor that delivered my triplets. Lets just say he doesn’t have the best bedside manner so I was a bit nervous. We went in his office and sat down. He then began to speak what I call the “rehearsed speech”. The same speech I had heard at my OB but with many more sparks and whistles. I got the scenario where I don’t do anything and just wait and see, or get the amnio and find out with certainty and then decide to keep or abort. Since we had spoke in great detail prior to the appointment Brian and I knew what we were going to do.
Before we left the office I asked the doctor if he saw anything on the ultrasound. I can still hear his response to this day. He said, “You had to ask?” I was shocked. Are you kidding me? Of course I “had to ask” I had just sat there for over an hour being poked and prodded worried to pieces and I wanted to know! So we sat there for another ten minutes watching as the doctor scrolled down the ultrasound pictures on the screen wondering what he was seeing and thinking. Finally he began to talk. He told us there were two soft signs. First, he said she had a shorter femur bone. Then he looked at Brian and asked how tall he was. When Brian told him he was 5’7″ he said well she could just be short. Next he showed us that in her pinky finger, the middle bone was missing. He said he couldn’t see it and that sometimes that is a sign. Finally he said to us that based on those two signs he moved our odds form 1 in 16 to 1 in 10. We both left there feeling confused and still questioning the whole thing.
We spent the next few weeks trying to accept that we wouldn’t have a firm answer before her birth and that we needed to learn more about DS and what we could be facing.
Next up was our scheduled OB appointment. This appointment was important. My OB had decided not to deliver babies anymore. I knew once we met that day that she would be referring me out to someone else. As we sat down to talk she began by saying that she would be willing to deliver me. This was a huge sense of relief. Her only apprehension was the hospital that she delivered at would not be able to meet the needs of our child if she had serious health problems. She had an alternative suggestion for us and of course we were willing to listen. She said that recently another hospital was doing a blood test to identify DS. She explained that the babies skin cells shed and were living in my bloodstream. The lab technicians could draw my blood and do a DNA analysis on the two different DNA’s in the blood. This would verify with 99% certainty if there was one DNA with an extra chromosome 21. It was not harmful to me or the baby and it would verify is she could deliver our girl. I was thrilled this choice was available and off we went to a different high risk office at a different hospital.
This next experience was much different from our last high risk appointment. Things were done differently and in a much nicer way. First we went into the ultrasound room where again I was poked and prodded. Only this time while I was doing the ultrasound, the doctor was viewing the pictures at the same time as well as the genetic counselor. As soon as I was done, we all met in the room to talk. This time the doctor had all the information he needed and he explained to us what he saw on the ultrasound. He also saw two soft signs but they were different. The first one he saw had to do with her intestines. They were shiny in some spots. There is a name for this but I have no clue what it is. He also said that many typical babies have this as well. Then he said they noticed she had a big space between her big toe and her second toe. They call this “sandlefoot.” Guess what I have a big space between my big toe and second toe and I don’t have DS! Again I felt like it was nothing convincing but they suggested the blood test which is what I wanted anyway! So downstairs we went and my blood was drawn. We were told it would be 8 days until we had an answer.
We had our blood drawn on a Thursday and to be honest I felt relieved to know that we would have an answer soon. I didn’t worry too much that weekend because I knew we had 8 days to wait. That Monday while I was at work I began to think maybe it would come sooner. I almost had an intuition that my answering machine light would be blinking when I got home. Sure enough it was. It was a message from the genetic counselor telling us that she had the results.
I remember shaking as I tried to locate the number she had given me to call her back. That day my husband was coaching track. We only had the triplets on Mondays so they were home with me as I made the call. I went outside to kind of “get away” just in case it was news I didn’t want to hear. When our counselor answered, she began to say a bunch of things. I couldn’t understand her and what she was saying. I don’t know if it was the nerves or the reception. Finally I just asked her if she had down syndrome. Then I heard the answer that I don’t think anyone could prepare themselves for, yes. I remember trying to keep it together as she tried to counsel me over the phone but I couldn’t actually begin to tell you what she said. As soon as I got off the phone I had to get it together because I didn’t want my kids to see me. I was a total mess. I know they asked me what was wrong and I skirted around the issue several times. I waited and waited for Brian to come home that night. Of all nights, his practice ran late. When I heard the car in the driveway I went running out. I didn’t have to say anything, he knew just be looking at me. We cried and hugged for a long time. I was a mess and he became the rock. He told me it was going to be ok. We would be ok and our little girl would be ok. I couldn’t believe how strong he was being. I felt a bit selfish for being so sad.
As the night went on I began to realize it was going to be ok. We were going to get through this together. There were moments where Brian began to fall apart and I was the rock, it was as if we traded throughout that whole night.
We took some time that night before we called our parents. We decided that we would only tell them and our siblings. We had not mentioned anything to our other 6 children and we wanted time to think about how we should prepare them so we kept it to immediate family only. I would say that there were many tears on the ends of both phones as we shared our news that night. We were all grieving the loss of what our child would be. Something only people who have experienced this would understand. Our last call that night was to my brother and his wife. As we talked and cried one thing stands out to me that my sister in law said. She said, “Megan we are all crying now but in a year from now we will wonder what we were crying about!” I will never forget those words. She was absolutely right!
to be continued…