Getting Started

I am starting this blog for my baby girl to keep everyone across the country who has been graciously praying for her informed about what is going on. Partly because I want you all to know about what you are praying about, also so nothing gets lost in translation as I don't have the time or energy to update everyone individually. Also I want to be able to show little Sophia some day from the start what people were doing for her. From the very beginning Sophia's life has been a tremendously sweet addition to our family with a touch of bitterness from all the worry and concern her condition has been. When she entered into the world the Doctor called out "Oh what a big birthmark!" In the first few hours not much was said about the birthmark and in my heart there was a quiet heaviness. She was so beautiful and I loved her so much but as a mother and a woman I could only think of her being teased, embarrassed and ashamed of her body as she grew and all the heartache that would cause weighed heavily on my mind. I knew and people kept reminding me it is just a birthmark, it was not as though she was born with a disease. Our pediatrician was called right away to come look at it and he was encouraged that it was not related to her heart and set up a consult with a dermatologist the next day. In the quiet of our room that night as Craig was escorting the last of the visitors to their car I was able to let down my strong front for the first time and cry out to God on behalf of my baby girl. If only it had been only a birthmark and the biggest concern was her self-esteem....

The dermatologist was not going to be able to come until late that next night so we were able to spend that next day enjoying getting to know our new little one. I marvel at how she looks almost exactly like her big sister in the face. We had just settled down to eat our dinner that night when the dermatologist came in. He informed us that her condition is called a Giant Congenital Nevi (basically extremely large mole) and that it carries with it an increased potential for melanoma or malignant skin cancer. He was a little difficult to follow and his advice was not too clear or perhaps it was just too much for us to absorb that first night but he reported that you can do nothing and risk your child getting cancer as well as living with the emotional stigma of the giant mole or you can remove it through a long series of surgeries and your child will end up being scarred all over. He suggested we talk to a pediatric plastic surgeon before we leave the hospital. And he left the room! I scooped Sophie in my arms and clung to her and sobbed. I felt as though I had been given a death sentence for my two day old baby. I called my mom and very unarticulately tried to explain what had just been dropped on me and cried and cried and I know that I kept saying "Oh Momma, Oh God" over and over again. Well he heard my prayer and was quick to answer. I felt very ill and nearly close to hyperventalating. We had called several family members but I didn't know how to quiet the screaming fears in my head and the heaviness in my heart and hear God's voice. So I called for my nurse. Although I knew I was heart sick and not physically sick as an almost immediate answer to prayer the Lord sent an angel named Aubree into my room and the Lord spoke through her and she called me to fight as a mother and do whatever I needed to do for my child and to be strong. She sat by my bed and spoke words of encouragement to me and Craig for almost an hour. And by the time she was done the peace of God rested over me like a blanket. In fact we all laughed as she was leaving because she reminded us of the phrase "lets not make mountains out of molehills".

The next day we met with the pediatric plastic surgeon Dr. Mann who basically explained the typical course of treatment as stretching the skin with tissue expanders and then slowly replacing the moleskin with the newly stretched non-mole skin. He was patient and answered all the questions we had at the time as they were not too articulate (remember we were still in the hospital and had not had a chance to do any of our own research yet). He explained that there is some urgency in getting started right away and scheduled us to be in his office on Mon the 24th with a first possible surgery date of Dec 5th. We went home with our heads and hearts still whirling.
God has been so good to us in the week we have been home. To quickly update you our pediatrician has called several experts for us who all report with the size nevus she has surgery is the typical course of treatment. Our appointment with the surgeon went well and we had peace about moving forward with the procedure however we did learn some tough facts. For instance 1/4 of the balloon expanders fail and you have to start over. Also when trying to get the surgeon to predict either the number of years or surgeries which he couldn't do I said "well she won't still be having surgery at 15 will she?" to which he replied "yes she most likely will". We have had multiple confirmations that this surgeon is the best in the area, multiple confirmations that surgery is the right course of treatment and overwhelming love and support from friends and family. Both our pediatrician and plastic surgeon have mentioned praying or would pray for us which means a lot. I have been saving all of the emails of people sending love and prayers so I can show them to Sophie one day. What an amazing testimony for such a little person. We had settled on her name several months back and I know it is divine providence as her first name Sophia means Wisdom and she requires quite a bit of that in her young life and I know that she too will gain a lot of wisdom through the path the Lord has planned for her. Her middle name Caroline means beautiful woman and I take that as a promise from the Lord that these surgeries will not in anyway change the beauty that radiates from my beautiful girl now. I have and imagine I will continue to have difficult "dark" moments. It is so impossible to face this and not be able to have an option c which doesn't cause pain or heartache to your child. I would gladly give her all my skin if I could save her from one ounce of pain but parenting seems to have its fair share of difficult decisions associated with it. Anyways I know this is long. I want to be able to keep everyone updated so they know how to pray. We are going forward with surgery this Friday Dec 5th at 7:30 am. She will have 2-3 balloon expanders put in her back and for the next 3-5 months Craig and I will have to inject a little saline into each one everyday and then she will have another surgery to replace some of the mole with the newly stretched skin. I want to attach some pictures that show you the size of the mole, it is estimated at 35% of her body. And I will post pics as I go and prayer concerns. I still have a ton of questions and everyday I think of more but God is so good and is helping me to take things one step at a time. Last week a couple from our church brought us a meal and a gift for Sophie and they prayed with us before they left and all that night I had the old praise song "I'm so glad I'm a part of the family of God" in my head. I am so glad for all of you. Love, Amanda and Craig