Well today we got the much awaited letter telling me when the next surgery is scheduled. When at the Drs he asked if I had any scheduling issues and I said I didn't want it before Mothers Day (because she is being dedicated at church) and so he scheduled it right after on Wed the 13th. So here we go again, another round of dermabrasions. I have a much better idea of what to expect and perhaps that will make us better equipped to handle it but literally I have not emotionally recovered from last time and I am not sure I am ready to do it again. I am so tired of being brave and going through the motions day in day out acting like I am living some sort of normal life. There is no normal for me, I feel like I am holding my breath under water waiting for the end of all these surgeries and the removal of the mole so I can look at my baby and say "ok, this is what we are going to be dealing with" and I can finally exhale. What a way to spend your daughters first year of life, waiting for it to be over. And then these feelings lead to feelings of guilt, like on top of this dumb mole she has a mom who still has a hard time looking at her body and not feeling sick that this is happening and wishing it all away. And I get so angry sometimes, I feel mad when I see people with their beautiful perfect babies and I literally feel mad, sometimes I have to fake happiness for people and their new babies. This is the most shameful, horrifying feelings and why I am admitting them to all the world I don't know but this is my therapeutic outlet and most times when people say "How are you?" its much easier to lie and say fine because they don't generally really want to hear all of this anyways! I just read the Mistaken Identity book today about the Van Ryn/Cerak switch (if you don't know what I am talking about come out from under your rock and google it :) !) and I am amazed and humbled by their story every time I hear it. Their use of the blog to update everyone of Whitneys progress during that ordeal was partly where I got the idea for this although I in no way liken my experience to what those two families went through. But the book left me feeling so ashamed. They were able to take this horrible experience and use it to lift up the name of Jesus Christ. There wasn't a question that Matt Lauer could throw at either family on NBC where they wouldn't bring it around back to God. And here I am struggling through this hard thing and seeing God work yet being bogged down with these awful feelings. I know He is here and I can rattle off dozens of answered prayers and times I have seen him at work and yet I have never felt more alone in my whole life than I have these last few months. Last Friday I actually managed to get myself to the Dr (after several weeks of being sick but never having time) and the nurse actually commented to me about having a break from my kids. I didn't know if I should smack her or hug her for recognizing that only times I have done anything without my kids since last Nov was to go to work or the grocery store or this appt. Thats my Break! A Dr. Appt.! I am really frustrated with where I am at emotionally these days, and reading that book helped a lot but my main request leading up to surgery is peace. I don't ever have peace in my heart. God is so good. I know he will carry me when I grow weary. Also we need a blanket of healing over our house as all three girls are currently on antibiotics and the illnesses are not helping my emotional stability either. Thats all, I will post times and specifics again a couple days prior to surgery. Thanks for listening and letting me get stuff out. Try not to worry, just pray. Amanda

Just because

Hello its me AGAIN! The giggle video was a big hit so I just wanted to post these two videos because they a.) are super cute b.) show how smitten Sophie is with Grace (Craig and I think it looks like she is trying to imitate her dancing) c.) summarize my main form of entertainment these days and d.) because I can. Enjoy, especially the Grandparents.

Quick Update

I trust you all had a Happy Easter, weren't my girls beautiful! Not bad considering Dad was in charge (I had to work at the hospital!) I went to the surgeons today and had a few updates to share. He is so pleased with the balloons he wants to leave them in for another 2-3 months! Wow that surprised me. I was kind of looking forward to them coming out soon but I am also glad that he thinks they can get that much out of this round. He is also so pleased with the dermabrasion that he wants to do another round before the balloons come out. So he will be sending a letter soon as to when that will be. Finally he did indicate that he thinks that the satellite moles usually stop around one year. Its nice to know an estimate since he is not big into projections. So I will let everyone know when the next dermabrasion is. Obviously we will need lots of prayers again because the aftermath is not super fun but I also see constant answers to prayer which is wonderful! Love to all, Amanda

Sophies giggle

Tonight I was feeling low on the way home from work, I had a rough day and apparently so had Sophie, I was praying for God to give me joy and help me to count my blessings (and if he could spare an extra one I would appreciate it!) and I came home to this...

God is good! All the time!

Doing much better

My Sophie is back, smily and talkative as ever. She stills beams when she looks at me and I am thankful for her safe return from her very long week. Well yesterday was Sophies official post-op (nevermind that we had three other dr appts since surgery since she had been having such a rough time of it!) and she was given all gold stars. Everything is 95% healed and she doesn't need anymore bandaging. Now we just need to wait a few weeks to see how well it worked. To back up a bit, when I had last posted it was the end of a really bad weekend. As the week went on it got gradually better but it was really tough as she continued to scream every night with bandage changes. In fact this past Sat night, when Craigs mom was visiting (the first time we actually had help!) was the first time she didn't scream through the whole thing and was completely cheery! She hasn't had any tylenol since Thurs I think! So a huge thank you to everyone for all your prayers. I really learned the meaning of the song by Casting Crowns this week "Praise you in this storm" which says "And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm." It was evident to us all through the last week and a half even in our darkest moments that God is good. Thinking back to that Fri when everything went down hill it was no coincidence that that was the day the prayer quilt arrived and the pharmacist was working at a different location and chose to pray with my husband. God doesn't keep bad things from happening to us but he definitely loves us through them. If you have stumbled upon my blog and don't believe in a Great and Loving God I beg of you to seek him out and you will be found and you will be blown away. I consider it my humble duty to record these moments for my darling daughter that she may look back on a period in her life that she was not even aware of and be amazed by Gods love and mercy. This I pray will be the story of her faith. Amanda

Update

Hello, The last few days have been extremely rough and I thought I would take a breath while Craig and Grace are at church and give you an update. Thurs Sophie had her bandages changed at the Drs. He showed me what to do should any of the other areas get "gunky" and need redressing and she seemed surprisingly fine. In fact on Thur I stretched her tylenol doses out because she seemed ok. Then at 2 am she woke up screaming and nothing would console her, we would get her back to sleep and she would wake 20 min later screaming for the rest of the night. Obviously Tylenol was not working. So in the morning Craig trudged bleary-eyed off to work thankful that at least it was Friday and I guzzled coffee and faced the day with a hyper 3 year old and a miserable baby. First item on the agenda, change the bandages. Now Sophie had her tylenol and then nursed so we're talking 45 min into her tylenol I attempted to change her bandages and the tylenol should have been at its optimum. She screamed and I soldiered on. Grace is actually a fairly good assistant and I felt like some old rerun of MASH (because it obviously was not a proper setting like ER) calling out "gauze", "scissors", etc. and she hands things to me all the while singing a song to Sophie. Well it turned out more of the bandages were coming off and she was soaked from the drainage off her wounds. So I removed more of the original and redressed all the wounds. You sort of have to tune out her screaming and keep your head in the zone (I imagine that is how athletes stay focused with millions of screaming fans) but I knew that if I got all flustered by her screaming it would only take me longer. Well I thought that once she was all bandaged and in clean clothes she would finally calm down, I mean after all the tylenol ought to be working by now. No, it was awful, she would cry and you pick her up and it escalates to blood curdling screams. She was obviously in bad pain everywhere. I called the doctor and they said to switch to Tylenol with Codeine. I had some from her first surgery so, no problem.
After that she slept A LOT but when she woke up at 4 pm she was fireball hot. We got a temp of 103, we were on the phone a lot with both the surgeon and the pediatrician. By Sat morn her temp had come down to 99.3 but Craig still wanted to take her to the pediatricians and sure enough he said one of her ears was really red so now she is on antibiotics too. When we had switched to the Tylenol with Codeine the surgeon said to keep it up every 4 hrs until we see him on Mon.
Since Fri she has been so different. When she first wakes up she is in a lot of pain again and I give her the Tylenol first thing. Then she eats, which is not very much. Then she goes upright on my shoulder and I hope for a burp naturally because there is literally no where to pat! Then I set her down somewhere comfortable, her bouncy seat, swing, pillow and she lays there and moans and whimpers or stares with a blank expressionless look on her face. I haven't seen her smile or talk in three days and that is something she usually does all day long. Its like my baby is gone. And her cry has changed, last night as Craig and I redressed all the wounds she cried the entire time but it was like a defeated cry. Like she knew we weren't going to help her because we are the ones doing it to her. And Craig and I had a talk last night because I was sobbing and I didn't understand why he shows no emotion what-so-ever. Being male he wants to fix it and if he can't he wants to ignore it or at least down play it as much as possible. I told him if he said "she'll be fine", "we're doing the right thing", or "she won't remember any of this" again I might scream. Poor guy hides all his emotions, he said that when he watches me change her dressing and sees the blood he wants to run away or get sick and he is proud of the way that I am able to do it. So it has been tough, her fever finally broke late last night and I am hoping each day she gets better, less pain. I just want my Sophie back. Literally since the week she was born she beams whenever she sees my face and mouthes the word hi, and it is so sad to have her stare at me with cold eyes like she doesn't even see me, it breaks my heart. I am hoping it is just the drugs and not that we have crushed her spirit.
Despite all this sad tale (because I need to use this blog for my own emotional cleansing as a very public version of a diary) I did want to end with a couple of remarkably touching stories that happened right in the midst of all this turmoil. Craig went to get some rolled gauze to wrap around her to keep the dressings on without having to use tape on Fri night and the pharmacist asked what it was for (he was visiting from a different store so Craig had not seen him before) and when he explained the nevus and her surgery he said "I am a Christian and I would like to pray with you" and took Craigs hands right there over the counter with people milling about shopping and prayed for my baby to be healed! Also on Fri which was the start of her decline, I got a package in the mail and it was a quilt signed with love and prayers from a group of people from a church in Arkansas. I guess one of the ladies knows my Aunt and her church group (this stranger not my Aunts) made the quilt praying for Sophie as they made it and then prayed over it before they sent it out. So she has been sleeping under it since Fri afternoon and most literally been covered in prayer. It reminds me once again how Great God is! And what a blessing to be part of his family! I was telling a dear friend in an email the other day that sometimes I feel so bad that she didn't choose this and as the only option for treatment for this condition she was born with we her parents had to choose it for her, but then I think of God the Father and what he had to put his son through, and I know he understands! I laid in bed last night almost wishing for pain in my body somewhere to take away some of the pain in my heart but mostly to take away the pain on my baby. I burned my finger last week, it was just a first degree burn from steam but it hurt so badly and I feel sick thinking of her feeling that all over her body and I think what on earth possessed us to do this? We were more optimistic that the bandages would stay on and she would have had very little pain like last time but because he did such big areas they just wouldn't stick. They are supposed to be mostly healed in 10 days. Thats just 5 more days from now. I pray that pain gets less and less each of those days and my long lost Sophie comes back to me. I know God is good and he is caring for us all through this time. Please join me in prayer for my baby! A Brokenhearted Momma

Today

Today went as well as possible. We are praising God for his care and tender mercies.

To respond to each of the requests:

1. Easy time coming out of anesthesia- Compared to the three hours of screaming last time she barely cried, nursed right away drifted off to sleep and has been mostly sleeping today, Praise God
2. Not too much pain- She hasn't been crying much so I will take that as not too much pain, Praise God
3. That she'll be ok to come home - we are home and both girls are fast asleep (and I am hurrying because Lost starts in 6 min but my mom said I had to update you! Praise God!
4. That he will be successful in removing a bunch with the dermabrasion- He did a lot, more than I even thought he would, we won't know for a bit if it was successful but have every reason to believe it was, so Praise God but continue to pray on this one!
5. That she will do ok in the morning before with the fasting! - It was a little tough, I won't lie, especially with fussy nurses but she made it, Praise God!
6. That healing will be quick- obviously this is another one to continue to pray about.

Additional request, one of the bandages is leaking right down into (pardon me but even as a physical therapist I dont know the anatomical politically correct word) buttcrack and the worry is if fluid can get out germs (or specifically poop) can get in which is obviously bad SO tomorrow he will have to take that bandage off, which will likely hurt her terribly, so a few extra prayers for that tomorrow, plus the fact that I have to drag her out of the house the day after surgery, not fun! Well thats about it, the pics show you how the balloons are getting big (he said those are about 1/2 way) and also how happy she is tonight and I have you all to thank for that with all the glory going to God, gotta run, the "island" beckons. Amanda