Wednesday, August 8, 2007

Baby Avery

I will start off with the good news. Much to our surprise they confirmed at our appointment today that our baby is a girl. I was so convinced for the last 22 weeks that we were having a boy. But the amnio results don't lie... it is for sure a girl. I think hearing that made everything harder. Our way of thinking has now changed. Its not just our baby anymore, it's our daughter. Reality is so much closer now.... but still so far away.

The drive to St. George was quiet, my stomach was turning and I prayed over and over the whole way. When we parked the car and started for the door to the clinic I almost turned back to the car. I didn't think I could handle it. I was so scared of what we were going to find out, or not find out. Before today I thought that them not being able to tell us anything would be worse than getting the definite lethal diagnosis. I was asked to sign a few papers before we could see the doctor and as I was reading them over my stomach dropped. There was a section on the patient information sheet for the diagnosis and underneath it said Thantophoric dysplasia. From all my research I knew this to be a lethal type of skeletal dysplasia. I thought for sure they had the results... why else would they list it as a diagnosis. It took all my strength not to break down right then and there.

We were taken into a very large dark room to start an ultrasound. This time I watched every measurement and the u/s tech talked us through everything she was doing. It was so strange this time around because there were so many things that I had read on the internet and seen in photos, that I was now looking for and my baby looked so different to me. I found myself looking for club feet, bowed femurs, frontal bossing amoung other things. Her legs are still very small and have not grown much, if at all. We still could not see her fingers because her hands were in fists. Her heartbeat is still stong at 165. The tech didn't tell us much and when I asked questions she told me I would need to ask the doctor.

Finally, the doctor came in and gave us the results of the amnio, all the chromosone testing came back normal. No down syndrome or any of the T syndromes. There was a problem with the additional testing that they do for dwarfism, the first test they tried failed so the lab had to start over. This means that we won't know what type of Skeletal Dysplasia our little girl has for another 3 weeks. That had been my fear but now I am somewhat relieved. I get to have some time with my little girl before I find out for sure! Anyway, Dr. G did his own measurements and did say that her chest has grown which is a really good sign. I asked about the heart and whether or not it looked like there is room for the lungs to develop and he said that it looked like the heart was not taking up the whole chest cavity. He sounded very optimistic about her chest size which made me breath a huge sigh of relief. However, he is still very concerned about the length of her long bones and we did notice bowing of the femur. He said her head looked good, it was right on as far as size and did not seem to have any frontal bossing and was shaped perfectly. He couldn't tell us much about her hands and feet because of her positioning and she wasn't moving much. I think she was napping.

So our appointment was okay but not great. I am not as much of a wreck as I thought I would be. I am still worried about getting the rest of the test results but I am feeling hopeful. Dr. G never pressured us one way or the other when it came to our options as was completely supportive of our decision not to terminate. He said because we have the time we don't have to be in too much of a hurry to get the results. He wants us to come back in a month to measure the baby again. He also recommended that we speak to the local neonatal specialist and find out what our options are for delivery. He is confident that we will be able to deliver either way in St. George which is alot better than having to go to Salt Lake. I am sad that Dr. Sanders will not be able to deliver our baby but we have to do what is best for her.

It's so weird to think that I have done everything to make sure that this baby is healthy. I eat my fruits and veggies, I drink my milk and water, and I take my prenatal vitamins. I have also been staying away from deli meat, sprouts, hot dogs and caffine (for the most part). But there is nothing I can do to prevent this, it makes me feel so out of control. All I can do is pray that God will not give us more trials than we can handle. I have to say that I would not be able to get through this if it weren't for my amazing husband. He is my rock and I feel so blessed to have him in my life.

I want to thank all of you for your comments and your prayers. Please continue to pray for Avery, we appreciate every prayer. God Bless!


Anonymous said...

What a beautiful name, no doubt Avery will be a beautiful young lady. Prayer works! My grandson is living proof, he is our miracle baby, I am amazed by him. I'm sure there will be many more sonograms, etc...Brandy had them every 2 weeks until her due date, and it was all so very stressful for all of us, but most especially Brandy. Do try to relax and enjoy this very special time, it is the best thing you can do for Avery. We will continue to pray for your family.

YaYa to Bryan

Anonymous said...

Well, you've got me crying again! Of course, ask Cat, that's not an unusual occurence. God bless Avery and I will keep you all in my prayers. Miracles do happen.

Jennifer/Owen's Grandma/Cat's Mom

How Life is Measured said...

I've been thinking about you all day. I'm so happy that you got some encouraging news! You sound like you are holding up really well. There is a whole world of support out there for you. I hope you don't mind but I posted a call for prayer for you and Avery (love the name by the way!) on Good luck!

Danielle said...

I found your blog through babycenter. I gave birth to my 3rd daughter in April, and she has Achondroplasia. While we weren't told she could have a fatal form of dwarfism, I am well aware of the ups and downs you are going through waiting for a diagnosis. I am praying for you and your baby! Avery was almost our little girls name, it is beautiful. There is a parents group on yahoo for children with dwarfism, there is a wealth of knoweledge available there if you are interested as time goes on. let me know if i can be of any help.


Anonymous said...

Hi Candi,

I met you through the baby center forum. Not sure if you remember me but I just wanted to let you know that you and Avery will be in my prayers. I admire your courage and your strength. Keep your head up and never lose faith. Thank you for sharing your story with us no matter how difficult it can get. Know there are many of us praying for you.

Anonymous said...

Hi Candi and family,

Your blog info was passed to me by a friend. I have a gorgeous 3 1/2 year old daughter, Quinn. My pregnancy experience was very similar to yours. Quinn has SEDc, another form of dwarfism that involves a small chest and respiratory problems. I was told what you are being told by doctors. I would be happy to email you privately if my experience will help you. Quinn had significant respiratory problems, but is a happy, healthy, smart LITTLE girl. Please email me at if you like. If you don't please at least talk to your hospital's neonatologist to discuss options for supporting your baby's delicate respiratory system. Many kids need trachs,etc., while they are growing enough to handle things on their own. Remember that doctors DO NOT know everything, and that you will be your daughter's best advocate.
Amy Lyons