We just got back from the MFM doctor to check on your progress. We saw Dr. Cook for the first time today and we really liked him. He is very smart and seems to be well versed in all aspects of your condition. He also knew how to make us giggle in a tense situation--that is always appreciated.
We saw a couple of new things at this appointment, but everything that we had already seen stayed about the same. Your bell shaped chest is still very pronounced and Dr. Cook seems to think that this will be a battle that you can not win. Most of your symptoms point to Thanatophoric or death seeking Dysplasia. This is not a survivable condition and we would inevitably lose you shortly after your birth. Dr. Cook did say that most babies with this are born alive, so we pray for as much time with you as we can possibly get if this is in fact a true diagnosis. Only time will tell.
A couple new things that we noticed at this appointment were that you have Kyphosis in your spine. This is similar to Scoliosis, but your spine curves front to back instead of side to side. We also saw that your middle and ring fingers have a wide space in between them on each hand. This is called trident hand and it is NOT characteristic of TD--there is still a little hope that it could be something less severe! I also have an excess amount of amniotic fluid in my uterus. This leads the doctor to believe that you are not swallowing how you should which presents another concern for viability.
Dr. Cook checked me for any symptoms of preterm labor and said that at this point things look great. He doesn't think that there is much of a chance of me going into labor anytime before our next appointment on January 13th. He thinks that it is very important for us to diagnose your condition regardless of your survival. He said that this would have to be a postnatal diagnosis, but he wants for us to get in contact with some geneticists in California so that they can start following our case. He strongly urged us to pursue genetic testing after your birth so that we can be prepared to help your future brothers and sisters should they have similar issues.
You are still as beautiful as ever and I cherish every chance that we get to see your pretty face. I know that God has a plan for your life and that you are here for a reason. I wish we knew with more certainty what your future holds, but it is in God's hands and His hands only. I am so glad that your Papa was able to see you today. You are sooooo very loved sweet angel.
Hugs and kisses,
Mom
Today was the first I've read on the blog and I just want you to know how much I admire your strength and grace in all of this. I will keep you, Avery and your husband in my prayers. I love seeing you on the April board. Many hugs! Gisa
ReplyDeleteCarey,
ReplyDeleteI truly believe that me finding your blog was no accident. Everything does happen for a reason. I found your blog through a mutual friend, Holly T. I worked with her at Vanderbilt when she lived in Nashville, TN. Funny thing is, I used to live in Louisville too, and worked at Baptist East and I saw an OB in Dr Link's group as well and also worked with him. Truly a small world. I am fascinated how we are all connected and how God's will is interwoven like a beautiful tapestry. Please find comfort in knowing that I too am praying for your sweet angel, Avery. She has delved into my heart and has pulled on my heart strings. I hope you find comfort too in the fact that Avery has helped me with some difficulties I have had personally. The love you have for her is beautiful and I know that God is using her and your family as an example to others. Prayer is powerful and I am going to add you all to my prayer list and friends as well. - KiMi S. Bowling Green, KY