Dr appt today, stiches out, they look really good. Now she can take a bath (good because the odor of sour milk and baby acne takes away from the adorableness a little!) except we are waterless in wyoming right now! Anyways the dermabrasions are still early to tell I guess you have to wait till they are totally healed and basically see if they look like normal skin or do they look brown like mole still. And the balloons... he still wants to wait to inflate at least another 2 weeks to make sure they are fully healed. So nothing really new to report in terms of her surgery we are sort of in a holding pattern. Praise God for the good healing though. In terms of her fussiness the nurse thought in may be gas so after a weekend pumping her full of Mylicon drops with no change they are now going to try her on Zantac thinking she may have reflux. So hopefully she starts feeling better after she eats (because the screaming for 5 hrs straight we experienced Sat night is NOT fun). Anyways I will leave you with a sweet picture of her when she is being low maintenance (it reminds me of that cute pampers commercial where they are playing Silent Night and show all the sleeping babies, super cute!) and ask you to all please have a Merry Christmas and spread cheer to your loved ones and cherish every minute with them and thank God for sending his precious baby Jesus to earth for us! Amanda and company

Just wanted to post some cute pics, nothing new to report! Dr appt Mon, will write more then. The pics show Sadies way of bonding, cuddling for a nap!

Three pics from her 1 month (time flies) on Thurs.

And the big meeting with Santa, I almost felt like a normal person going to the mall. Thank goodness for snow days and Craig will be home for 17 days straight!

Post op appt

Hello all, the Dr appt on Thur went well. His exact words were, "I couldn't be more pleased, everything looks great. " He also said that he had been praying for her all week, we had never really mentioned anything to him about our faith except for in response to all his comments which makes me think that they are genuine. It's a pretty awesome concept, a Dr. that prays for his patient. Its a blessing and a challenge. Anyways it is not time to start injecting the balloons yet, they are still healing. And the dermabrasion is healing fantastically but it is too early to tell if it worked. So we are going back to his office on 12/21 and at that point we may be able to take off the bandages and begin moving forward. She hasn't needed any Tylenol in a few days and although her personality as a bit of a fussy kid had emerged several days before surgery at least I know when she is screaming its not due to pain! Seriously we had a few BAD days this week but then Thur, Fri and Sat night have all gone amazingly well. She is starting to be able to go to sleep with a little bit easier time. Which makes mom and dad much happier. Last week Craig almost missed work one day because we over slept from being up most the night with Sophie and it has been a little rough on me as I seem to spend ALL day holding her but like I said she is starting to mellow out a little more. This weekend we even went on some outings, three stores, dinner and the library. Have I mentioned it is only my 4th time out of the house in a month! Talk about cabin fever. Well I continue to appreciate all the prayers and notes. I guess a continued request is getting her adjusted to sleeping and awake times. Starting soon I think we will have to adapt her positioning especially for the balloon in the back. Love to all, Amanda

A few more pics

Post op day 1

Hey everyone we made it through. I know many of you at least on my side of things have been updated by my mom but here is somethings I wanted to share. The day before surgery I made myself really busy and didn't even think about what was coming and I didn't really do it on purpose but in retrospect I think that was a huge answer to prayer because my normal self is a worrier. The night before was a little tough, I'm not going to lie, Sophie was not to happy about having to fast. Again in retrospect even though she was crying I held her and rocked her for two hours and now its a little harder to hold her so tight so that was good. At the hospital a couple from church met with us and prayed and I had a lot of peace going in to the surgery, the worst part was right as they went to take her away from us or as Craig says rip her out of my kung fu grip (if you have seen Meet the Parents you should giggle) she started crying again and that was hard for both Craig and I. During surgery my parents served as excellent support and distractions and I dare say we had fun and the time went fast. We were probably the only group in there chuckling and making friends. A woman saw Craig reading his bible and asked him to look up a verse for her, we struck up a conversation and her little 5 year old boy was diagnosed with brain cancer at 1 month old and has had countless surgeries and procedures. It sure makes you think. After surgery the surgeon came out to talk to us, in the front there is an expander, and incision, and three areas of dermabrasion. In back there is an expander, an incision and one small dermabrasion. The dermabrasions he is doing in areas where the mole looks very surfacy because while painful if successful the healing will be much easier and quicker than the expanders and it will create more healthy tissue. Anyways I really liked what he said, there are three stages and each require an equal amount of prayer, the first is the actual surgery and we are through that already, the next is the immediate post op and last is the long term plan of expanding and preparing to replace the tissue. I praise God again for a surgeon who emphasizes prayer. So we went back to see Sophie. This was another tough spot she screamed at the top of her lungs for almost 2 hrs. She wouldn't eat either by nursing, a bottle, or a little sugar water solution. Her sweet little face was so swollen and she kept trying to find her hands to comfort herself and kept bashing her self in the head with all the tubing and splinting for the IV in her hands. We went up to a room and it wasn't what they told us originally where we would have a private room so I could stay with her and have privacy and the nurse that we had initially was very robotic and would answer my questions like she was reading from a textbook and kept asking me what I thought should be done for Sophie. Like I knew, this is the firsttime I ever had a my two week old baby require major surgery!?! And Sophie was still screaming! It was like 1 pm and my head was starting to pound as I was extremely hungry and tense and did I mention Sophie was still screaming! I had praying on and off in my head ever since we got her in are arms again and I was about to send Craig to get me food although I was petrified of the thought of him leaving me there with my screaming child and an unhelpful nurse when Sophies meds kicked in finally and she quieted down and a tray of food came in for the mother of the patient. God is good. Hospital food never tasted so good and within moments my headache was gone and after I ate Sophie nursed! Praise God! As the afternoon wore on Craig had to leave for awhile to transport Grace from babysitter 2 of the day (Grandma) to babysitter 3 (Aunt Angel) and there were still rough patches and Sophie would intermittently cry out and her little throat was so hoarse sounding and as the afternoon wore on the cries turned to moaning and whimpering and late that night it almost sounded like hiccups. Craig came back around dinner time (didn't help that we are in the middle of a blizzard so the roads have been slick). My mom and sister were praying for a night nurse that was more emotional or "our style" as I called it although that first lady bless her heart did arrange for us to have our room alone so we would have privacy. But my night nurse was FANTASTIC. At 5 pm Sophie drank one ounce from a bottle but then after that wouldnt eat. Each time I would try nursing first, when that wouldn't work I would pump and then try to give her a bottle and then would give up as she just slumbered on. The good thing is she gradually seemed less and less in pain as I described the changing cries above but she just was zonked out. I got a nap from 8 pm to 10 pm and Craig went home from 11 to 5 and slept and cared for the dog. And Angel graciously (no pun intended) took care of Grace. All through the night Sophie slept soundly and by this point wasn't making any crying noises just fast asleep. One difficult thing is I selfishly want to hold her but feel afraid to, there are few areas on her trunk that aren't affected and its hard to know how to hold her. In a week or so that should be a lot easier. In the morning the parade of Drs started, all the plastic surgeons came in none of which appeared to have any experience in pediatrics but Craig and I suspect they had a curiousity to see the once in a million nevus baby, but had no real answers in terms of her not eating. Finally we got her to eat another ounce from a bottle around ten and then our Dr came in around 11. The surgery stuff all looked fine but he wanted her to eat one more time and for us to feel comfortable before we went home. And praise God at 12:30 she gulped down a 2 oz bottle. We got home about 2:15, Grace was still with my parents who took her off Angels hands this morning. And at 4 pm Sophie woke up, looked around at me with eyes wide open for a few minutes, NOT CRYING. She took her medicine and started nursing! Praise God! Just then my parents showed up with Grace and we had a nice visit and dinner with them. She is still very sleepy but wakes up on a regular basis to eat. She isn't crying too much and when she does its not a severe pain cry which is awesome. She is a bit easier to handle now without the tubes and stuff and in her real clothes and lovees. So that brings you all up to speed. As you can see many answers to prayer along the way and please continue to pray for this phase 2 recovery period as the Dr described. I have been so touched by the outpouring of love and emails, my parents forward all the emails they get to me. I have to say my dad's One America family is most impressive in there sending of prayer! The prayers are working, God is so good. I am attaching pictures so you can see little Sophie brave boo-boos. Love to all, more in a few days. A weary Momma

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