this will be brief...

Hey everyone, this is a brief initial update. Yesterday was LONG! Much longer than we expected and while they sent us home there is a little concern about part of the skin in this picture you see that is purple could be bruising and continue to heal or could not have enough blood flow and turn black and die which would mean she would need another surgery soon. I am too overwhelmed to go into everything right now and her front looks great and although the scars are intimidating I know they will heal and fade but please put all your prayers into this section of skin for I know that my God, the Jehovah Rapha, the God of Healing is a mighty God. The other secondary request is that we did have to come home with the drains in (those clear grenade looking things with blood) and I hope we can juggle those ok until Thurs without mishap. Thanks to all for love and prayers! Keep em' coming! More to follow...

Amanda

Fridays the big day

Hey all, this week has been a whirlwind. I can't believe in 36 hrs we will be checking in to the hospital for Sophies expander removal surgery. Seriously this is huge! This has been her whole life so far almost they have been in. I have to tell you all we had the most silly blessing tonight but who says God doesn't care about the small stuff. The nurse called to tell me the preop instructions and apparently the fast for formula is 8 hrs vs breast milk is 6 hrs and I just weaned Sophie 3 weeks ago. So on a whim I dug through our freezer and found one lone blessed bag of frozen milk, a gift from God. So her surgery is noon on Fri. So she can have that wonderful breastmilk for breakfast at 6 am (No cheerios though, sorry kid) and clear juice until 8 am. We will be staying overnight again this time and Craigs mom is coming to stay with Grace. Her surgery should only be a couple of hours and she should actually recover faster this time but initially its a little tougher with the drains to reduce the swelling. We had a nice relaxing vacation last week which the Good Lord knows I needed so badly and I felt a lot of guilt at first about not going to my Grandmas funeral but when we were in the car on our way up to the upper peninsula I felt this tremendous release through my whole body that I could finally relax! I feel as though I have been holding all this stress so tightly in my body about many things that I couldn't believe how good it felt to just get away. Sophie is doing awesome! We did her last injection last night and bless her little heart despite those giant balloons she has invented her own mode of transportation I call the "lurch" because its not quite crawling. However next week she will feel so liberated. Please join me in prayer for her on Friday. I have been so blessed for all the prayers she has been getting through this journey! Love to all, Amanda

Well I have been waiting for awhile to post, a little overdo as I have been "processing" a lot of info lately and lucky for you all I am finally doing this update when I am in a particularly cheery mood and have had a great couple of weeks. You see its summer, Craig was blessed with a summer school job that provides much needed finances but also makes him excitedly more accessible. We have had several fun swims in my moms pool (who is the lovely photographer of these darling pictures) and yesterday was Fathers day and today is my husbands birthday and the weather is so hot that I am enjoying doing computer stuff in the basement rather than freezing down here for a change. Sophie is down to 4 meals a day and still sleeping through the night (which is liberating for me) and last night even slept in Graces room instead of our room. Things are going well for our family. I had been so hoping to tell you that we had already had the balloons out at this point but it turned out that the surgeon was pleased with the progression and has scheduled removal surgery for Fri Aug 14th. We were hoping to have that behind us for the summer and we were also hoping for this process to be a lot faster. In fact we have more than doubled his original estimate of the time frame and he gives no reason or explanation for the discrepency which is very frustrating. I also try not to get into comparisons with other surgeons who do 6 week expansion of these balloons by injecting a lot more once a week. I have been giving all these frustrating feelings to God have been surprised at different ways, people and circumstances he is using to lift me up. Even as we speak, I am listening to a series of sermons by the great Chuck Swindoll called "Special Words for Special People" that he has done for several weeks about dealing with children with birth defects and as I stumbled upon these messages I have been rescued from sorrow and felt loved and understood so many times in recent days in a way I haven't experienced since little Sophies birth. God is good and he is caring for my heart and ministering to me. I had been a little apprehensive about asking Dr. Mann about my question of the use of dermabrasion and he took it well and explained that Sophies mole was so pale in the front it was worth a try due to how much easier it is than the balloons. I posted some pics to show not only how big the balloons are getting but you can see on the right side of her stomach opposite the balloon how pale the area he has done the dermabrasion on. She is so happy and thriving and you really would not know all the difficulties she has faced and will continue to face, she is rolling front to back and back to front, she is almost independent at sitting and she even said "dada" yesterday for Fathers day! Seeing how happy she is despite all THIS I know that God is caring for us on a daily basis and we are making the right decision for our daughter. Thank you all for your continued love and prayers, they are helping so please keep them coming.

Front view: Shows the lightened dermabraded right side (her right)

Side view: Also dermabraded still pink spot on upper back left (her left)

Aerial view: I always giggle that it looks like she is trying to grow a second head! I am amazed that she was able to learn to roll over, its like working against a speed bump!

God bless and have a great week, Amanda

A little update

I wanted to give everyone an update since people are constantly asking about Sophie and I know I haven't posted since her surgery. Today is a good day for Sophie, she finally was able to go the bathroom (its been a week, poor thing!) Last night we finally caved and took off part of the bandages and hope to take off more tonight. They were leaking and we were unsure of the color and odor of the leakage. Man I wish I had paid more attention when studying wound care in grad school, I had NO intention of treating wounds because I normally don't have the stomach for that sort of thing. Its amazing what God and love can do. I found myself praying little 10 second prayers for Sophie all day long yesterday. I was so anxious at work knowing that we were going to do the whole bandage thing last night. It went amazingly well thanks to prayers from myself and all of you I am sure. In fact when I think of the fact that the bandages were on nearly a week compared to the one night last time I am so thankful of how she is doing. And she has maintained her sparkling personality throughout this time, albeit a little more quiet and reflective still smiley and talkative when she wants too. In fact she has a new friend! I put this little bear blanket in her crib with her the other day and when I went to get her up after her nap she had her arm around him. Super cute!

Her followup with the surgeon is not until June 1 so we have a ways on our own yet and I plan on taking a little of the dressing off every night as able. Ironically with all the prayers for her bandages to stay on they are stuck on pretty good but like I said they were leaking and due to the color, etc. we need to take the bandages off and dress them with special cream with antibiotics in it and now the bandages are taped on so good they won't come off. She was crying quite a bit last night and we only got the worse part off so lift us up in prayer if you think about it between 7 and 8 pm every night as we will need to change the bandages. Ok I decided to link a song now and again to share my feelings in a more eloquent way from time to time. The above video is a song I have been singing to little Sophie a lot lately. I hope she will feel the same confidence in God's plan someday, I know I have used this song to get through other rough patches before in my life. Peace and Love, Amanda

Mothers day/Sophie's dedication in 90 year old family christening gown

Surgery was successful and we are home and she has literally been sleeping all day thanks to morphine. Once again I will update the specific requests.

1. Easy time coming out of anesthesia - easy as pie, they gave her morphine and she hasn't been crying because she has just been sleeping. When she has opened her eyes at the most she has just been a little fussy.

2. Not too much pain- so far so good. We are getting ahead of the pain by using codeine until we know if her bandages are staying, plus now she is old enough to have Motrin so she can get better pain coverage. Praise God.

3. That she'll be OK to come home- at first her oxygen kept dipping low because she was sleeping so soundly. Then we did a bugger flush of her nose (trust me that is technical medical jargon!) and her O2 level jumped up to 95% and we got to come home.

4. That he will be successful in removing a bunch with the dermabrasion - this is always too early to tell. He did a second pass on a lot of areas that he had already done including a bunch on the legs. He also did new spots and avoided the lower areas near the diaper.

5. That she will do OK in the morning before with the fasting! She did pretty good at the hospital, was a little fussy but not too bad. Praise God we got to go first thing in the morning this time.

6. That healing will be quick /7. The bandages will stick to minimize the mess and pain - I should combine these two as six depends on seven. So far so good, he was prepared for this complication and hopefully accommodated accordingly to avoid the bandages coming off. At least if they do we are better prepared to handle it to but so far so good. Last time they were already leaking before we even left the hospital and so far they are holding but this is definitely an area that needs continued prayer.

8. That I will have peace as I have been bombarded lately with people telling me this is the wrong course of action. - the people really are trying to help educate me, but it is hard to have doubts about such big decisions. I had great peace today so thank you, I do plan on addressing my concerns with Dr. Mann at my follow-up but as of now did not feel the need to interrupt the course prior to the surgery.

A new one: Sophie has intermittently been having some redness on her balloons, when looking at it this morning he thought they may be showing early signs of infection. I guess sooner or later your body rejects the foreign objects and you get an infection. He said we should tentatively plan on the removal a month from now. So that surgery is going to be much more major, she will have to stay overnight again and the healing will be more difficult. So I pray for the planning of that to go smoothly. Also for the tough discussions involving my questions for the Dr, I trust him and don't want him to think I doubt him but also need answers to my questions as I learn more about this condition and there are many more variables than I imagined. Thank you all who prayed, and helped out with Grace and such. I appreciate everyones love and support more than anything. God is lifting me up daily. I know I don't always report the good as often as the struggles but I give the Lord so much glory for how he loves both Craig and I through every aspect of this. The Lord loves us so much, I had an AMAZING Mother's Day/anniversary weekend that was the perfect respite before a potentially difficult week, my pneumonia is healed, and my asthma has made a tremendous recovery since Monday and I even got to talk with a lactation specialist today at the hospital as I am dealing with possible infection and both my primary Dr and OB said they didn't know how to help me and by this woman's recommendation I am feeling TONS better now than I have for the last week! Praise God, look at what power there is in prayer.

Shout for joy to the Lord, all the earth.

Worship the Lord with gladness;

come before him with joyful songs.

Know that the Lord is God,

It is he who made us, and we are his;

we are his people, the sheep of his pasture.

Enter his gates with thanksgiving

and his courts with praise;

give thanks to him and praise his name.

For the Lord is good and his love endures forever;

his faithfulness continues through all generations.

Psalm 100

Thank you all, a Happy and relieved Mom

Now to prepare for the Lost finale...

Surgery is wed 5/13 at 830am. I am resurrecting the prayer list from last dermabrasion. Prayers are:
1. Easy time coming out of anesthesia
2. Not too much pain
3. That she'll be ok to come home
4. That he will be successful in removing a bunch with the dermabrasion
5. That she will do ok in the morning before with the fasting!
6. That healing will be quick
and I am adding
7. The bandages will stick to minimize the mess and pain
8. That I will have peace as I have been bombarded lately with people telling me this is the wrong course of action.
Thank you and I will update Wed afternoon when we get home! Love to all, Amanda

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