Making progress

Well it has been a rough day and a half. Her surgery went as well as could be expected but it was late getting started and went way long. She has another set of balloons in, one in front, one in back. Also a large silver dollar size mole on her leg was halfway removed. It was almost 9 pm before we got home with her and I was very concerned as she will be ok in a position but if you attempt to pick her up or even if you are holding her and move your body a little she begins to scream in pain. That is a pretty heart-wrenching experience as a mom to not be able to comfort her when she cries. Now I would say by the time she went to bed tonight she was about 25% better then yesterday so I expect things to continue to improve pain-wise. We came up with one solution and busted out her old baby papasan seat and we carry her around in it which is easier than holding her. Now she wasn't scheduled to see the surgeon until Jan 4 but due to her high amount of pain he didn't want to wait to see her so he asked us to bring her in on Mon when he was already supposed to be on vacation. I continue to praise God for the care we receive from this fabulous physician. I think it is so cute when he calls her "Soph" which is our nickname for her and he constantly displays his high caliber of care. While the last 24 hrs have left me completely emotionally drained I wouldn't say I was empty and I would be remiss if I didn't give credit where it was due. The Lord continues to bless us and while yes I see Sophie suffering through pain I know that were it not for the constant prayers not only could things be much worse but our tolerance/ability to stand up underneath the weight of these burdens would be significantly different. I am SO thankful for the many people who are constantly sending notes of encouragement and prayers. I am SO thankful to my family and friends who take time away from work and their own busy lives (especially the week before Christmas) to pray with us the night before surgery (thank you Carl, we love you) to sit with us at the hospital (Thank You Thank You Mom and Dad!!!), watch Grace and take her out to have a fun time (I swear this week has been the most fun week ever for her and I think it is good that we try to downplay a little of the heavy burden of the situation around her), bring meals to my house (thank you Wellspring church, I love you) and just let me know how much me and more importantly Sophie means to you. Its those constant messages and people reaching out to us that carries me through. Admittedly for a variety or reasons lately I have been feeling very sorry for myself, it even has put an enormous damper on my usually unquenchable Christmas spirit. Sometimes I feel like its me and Sophie against the world and I struggle against feelings of bitterness that this is a constant battle for me with no end ever in sight. However, tonight I feel a lightness in my heart that I haven't felt in a month. Feeling the power and unity of the body of Christ reminds me I am NOT alone. Poignant more than ever to feel the presence of Christ in your life so powerfully at the season of His birth. Thank you, I love you all and God Bless you all in time with your family this Christmas. Please take time to THANK God for the blessings in your life and most importantly for the greatest Christmas PRESENT ever, his PRESENCE in our life. Please continue to pray for Sophies healing and if I could ask a special request it would be please also reach out to Craig, because I am the blogger and the facebooker and the emailer and we live near my family I get the bulk of the love and he tries to be the "brave, tough Dad" but I know he needs to feel that his people love and care too about our struggles so this will be a secret between us, please let Craig know how you care. Thanks again. Love and Christmas blessings, Amanda

Here we go again...

So tomorrow we begin another round of expansion. Sophie is having 2 more expanders put in, likely one in front and one in back again. Her surgery is at 12:30 and so her fasting schedule is much like last weeks for the MRI which went really well. I don't have the results back yet but the Dr's initial reaction was that everything looked fine. Anyways I am not looking forward to her coming out of anaesthetic again so soon, you feel so helpless when they are so miserable. Anyways we are not going to have to stay overnight, I would imagine it would be many weeks before we worry about injecting. So for now here are my prayer requests:
1. the surgery
2. the recovery 24 hrs after surgery
3. no post op infection (this is especially important as it is the week before Christmas and we are going out of town as is the Dr.)
4. this round of expansion will be successful (I keep thinking that since they are putting in balloons 3 and 4 and 1 in 4 supposedly fail means that one of these is doomed but Craig gently reminded me that is not how statistics work and is definitely NOT how God works, I am so blessed to have Craig around!) Well thats it, please say a word of prayer for us tomorrow. I will update on #1 and 2 soon. Thank you all. Amanda

mri

Hello all, we made it through the MRI today, it was a LONG day! Its funny, I thought the hardest part was the before when she had to fast and she did fine and was her normal sweet and social self flirting with patients and staff alike. The after I thought would be a breeze because I naively (that is probably not a word, sorry Sue) assumed that previously when she would scream and cry coming out it was from the pain of having surgery and that she would be groggy and hungry but no big deal this time. Well she was pretty unhappy for a long time and is still what I would consider "fragile" as she is taking a nice warm bath right now intermittently starts to cry. But overall it was a success and if we focus our prayers on a crystal clear result she will never have to worry about that again. We have our pre-op appt on Mon and then its gearing up for surgery on the 15th. I feel as though I am trying to keep my head down and barrel through this month, hold my breath until January and then breathe. On top of all of these things I may have to change job locations (quite involuntarily) and believe it or not I got summoned for jury duty AGAIN! I feel as though it is raining inconveniences. I am just glad I did all my Christmas shopping before Thanksgiving! Well enough griping for tonight God is good, he got us through a long difficult day and gave me two wonderful parents who sat with me for seven hours at the hospital so Craig didn't have to take another day of work. Now I am of to cuddle my sweet baby girl off to bed. I will write again after our appt on Mon. Amanda

A little business

Another fun pic of me and my girls from the fall photo shoot!

So glad she finally said Mama! Oh well, I have always know she is crazy about me by this look!

So it has been a whole year! I am AMAZED! To think of the year that we all just went through from the minute she was born and I can't believe how much the Lord has worked to make a very difficult situation go well and while it is not quite what I was picturing for any of us it all is happening according to God's purposes. Well, unfortunately our break is quickly coming to a close. With her birthday and Thanksgiving marking the last two weeks of our time away from focusing on the Nevus. Well the schedule is December 3 is Sophies MRI, she has a preop appt the following week and her next surgery for tissue expander placement is December 15th (the week before Christmas -ugh!)

First I wanted to reveal her stomach and back pics from the first surgery I waited a long time to show you to allow as much healing as possible.

The stomach balloon on the left side was pulled down to her waist.
When he pulled the skin down and across the stomach it formed a pouch of extra skin called a crown that he will eventually use to stretch further and minimize scarring.
The back balloon was pulled down in a t formation and the right side which was blackened is still bright pink like a scar, I don't know if that will ever heal or if he will eventually remove it in future surgeries.

Lets talk MRI: Here is the lowdown which will hopefully clear up a little confusion. People with Giant congenital nevus can sometimes have something called neurocutaneous melanosis (ncm) which basically means the pigmented cells go all the way down into the nervous system which is the brain or spinal cord. Now we are doing the MRI to see if there is any evidence of this. Here are the possible options:

1. No NCM (by the way this is what we are praying for)

2. NCM present that eventually disappears or is nonsymptomatic and never causes problems

3. NCM that causes mild symptoms (seizures, etc.)

4. Severe NCM - possibly fatal

The reason for doing the MRI is if she ever did have a symptom like say a seizure then we would have a baseline which could help determine if there was a problem that was progressing. Thats it, we are doing to help Sophie if she needs it. Obviously there is some concern that something will show up and then I will worry about it nonstop but I did read that if a child with NCM is going to have symptoms they show up in the first year in over 90% of cases so I am feeling a peace with this decision. I am obviously somewhat tired and stressed about the feeling of starting all the surgeries and shots and medications all over again but I want to believe that it will go just as well as last time.

On a very serious note, a few weeks ago my sweet little 16 year old cousin Swan died and my Aunt Susan and Uncle Jed are living my (and every parents) worst nightmare. I have realized that we as parents work tirelessly our whole lives to do everything that we possibly can to keep our children safe and healthy and the bottom line is nothing is in our control. Love, hope and faith, this is what we have. We can love them like crazy, hope for their safety and health and have faith in a God that has our and their best interests at heart. To my Aunt Sue I love you and promise not to take a single moment for granted in honor of your darling Swan. To everyone out there praying for us please pray for my Aunt and Uncle as well when you pray for little Sophie. I will update you about the MRI/surgery as needed. God Bless, Amanda

A little fun

Beautiful sleeping baby smiling in her sleep!

Well its been awhile! I thought I needed to do this today as I had been waiting for the right moment and today seemed fitting as today is....Sophies 1st Birthday!! I am going to do two separate entries one that is fun and one that is business. For fun I will tell you that Sophie is doing extremely well, she is up to seven teeth just this week, cruising all over (moments from walking I think), she is learning more and more words although she held out and never said mama until finally last week much to my chagrin. This weekend she had a birthday cake at Grandma Travises house with frosting abundant, as you can see!

we took fall photos outside

and tonight she had her birthday dinner with a bow on her head!

I would say the main reason that I haven't posted in awhile because I was relishing the period of time we had to be as "normal" as possible between procedures. And now on to business...

OK, so I was not going to do update because I am SO tired but I am also SO excited to share so here goes... Last week when Sophie had her surgery as we were literally walking in the Dr said "Oh there is a possibility that some of the tissue doesn't make it and turns black and die" so after what was a MUCH longer than anticipated surgery everything seemed to be going well. I think initially I wasn't prepared mentally for the big incisions all over. When you look at before and after pics its after after not like seconds after if you know what I mean and the incisions have time to heal. So initially I was a little let down by the appearance. Then we passed the time and really Sophie was just sleeping and had no interest in eating so eventually around 10 or so Craig and I went to sleep (I got the little cot thing and Craig dozed in a chair - good man!) When the nurses would come in Craig or I would get up and we had seen that one of the drains was bleeding a little early on but not too bad. Well around 5 am I thought it was about time to reposition Sophie and Craig and I thought we can do this without help and I went to roll her on her side and she had been on her back and the bed was covered in blood and as the nurse came to investigate I discovered the purple area. I was emotionally and physically sick! I thought oh no this is the dying tissue. I remember sitting there thinking of when Jesus asked the disciples to "watch and pray" in the garden of Gethsemane and how many times I have thought over the years "how could they fall asleep?" and here I am sleeping when my sweet little baby needed me praying for her. I was filled with shame. Later the Dr said it was too early to tell if that area would make it and we would just watch and see. (Try watch and pray! I learned my lesson!) Later that day I took a nap with Craig and Grace. Grace was laying next to me and had a tank top on and I was looking at her sweet little perfect back and thinking how awful that at nine months old my little baby girl has feet of railroad track scars all over her body, more than some of us have several decades later, I felt so sad! That night I wept bitter sobbing tears into my pillow. How can we go through this again and again, year after year? How can I make things right for my baby!? Unfortunately we came home with the drains in which ended up being a whole fiasco where they required constant dressing changes as she would bleed rather profusely at the drain sites but not into the actual drains! We only emptied a few drops once! So after 4-5 days of constant laundry loads of blood soaked tshirts and sheets and blankets and dressing changes 4-5 x a day (we were only required to change them once mind you but we had to more because she was soaking through the gauze) which was not fun (ask my mom and dad) as it was the only thing that seemed to cause her pain. We came up with an elaborate configuration so she wouldn't see the drains and pull on them to pin them up to the back of her shirt and put a stretchy net tube around her torso and we called her the little uni-bomber because she looked as though she was ready to blow some place skyhigh! It was amusing! As the days went by we were told to keep watch for blistering that was the sign that the skin was going to die. Tue night when we changed her bandage there was a second spot that was REALLY dark, blacker than the other spot which had virtually not changed. Craig and I were heartsick. Wed afternoon the Kerkstras from church came to pray with us. We sat little Sophie on the dining room table and all put our hands on her and prayed for her healing and specifically that spot. Literally as they were leaving Craig got the mail and we opened a letter saying the surgeon had booked her for surgery the next week and we had been told that he would set aside time in case he needed to drain it or fix the dying section. Then moments later we noticed that a new section of her shirt had stains. We suddenly realized this wasn't the side with the drain and pulled up her shirt to see it darker still, draining fluid and two circles that looked like blisters, I thought Oh no this is really happening. I was brokenhearted all Wed evening, had trouble concentrating at bible study, would frequently burst into tears in the car. Well if ever joy comes in the morning....This morning I had to work and was concerned about getting bad news at work but felt almost relieved that Craig was bringing Sophie in. They went to see the Dr and....

(From Craigs Prayer Journal) Praise God, the Jehovah Rapha - the Great Physician, My Savior, My Righteousness. Holy Holy Holy are you God, the Healer, you are SO great! Awesome, wonderful, So good and merciful. Holy Father, Thank you for your continuing answers to our prayers and your miraculous healing hand on my daughter. Yesterday fear crept in that her back flap was dying, but you rescued it from death and brought it life giving blood. You brought healing and reassurance. You brought peace and comfort, joy. You are so good. To hear the words from Dr. Mann "its healing well, it looks great" was just a wave of relief and assurance that not only are we doing the right thing but more importantly that you the Creator of all, the one who forms us in the womb is in control and orchestrating every detail, even to the point of her preferring to sleep on her stomach so that the back would heal with minimal fluid build up. Oh praise you, you are holy, holy, holy. Thank you God for such a great cloud of witnesses, all the people who pray for her - family, friends, church people, people we don't even know. Praise you God for all these wonderful prayer warriors....

I second our devoted thanks to all of you! Basically Craig described a red ring that has formed over night around the dark areas indicating that blood is flowing up from below, that new skin is forming. Where there was death God has brought life! Amen. I just had my second to last bible study on the book of Daniel last night, and we were reading in Revelation that the ultimate enemy that Christ will defeat is not the Antichrist or Satan, no its death! He will destroy death! And I just witnessed a preview in my living room! Wow. Craig and I are blown away! So yes it was a good day! I will post more pics later when it has a little more time to heal. The Dr is already planning to start the next round of expanders in a couple months. I hope this time goes slow and we can just enjoy being "normal" for a little while. Thank you thank you thank you, a hundred times thank you to all of you. An especially big thank you to my Mom and Dad, who sat with us ALL day at the hospital, prayed with us, encouraged us and dried our tears (and Sophies too!) and also survived assisting with a horrific bandage change and got an unfortunate taste of what we go through far too regularly. Thank you to Mom Travis for coming and giving Grace a ton of fun and attention, for doing laundry, cooking, grocery shopping, dishes! You rock! We wouldn't have survived without you either. You pick up all the loose pieces even making sure the dog isn't neglected. It came in handy that you are a nurse too!! Thank you to my sister Ange for having Grace over last night so Craig could take Sophie to the appointment alone. And for our church and specifically the Kerkstras for praying with us! I could go on and on, everyone is awesome. Please watch the video above and praise God with me! Amanda and Craig!

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

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

Surgery

Surgery is tomorrow (Wed) at noon. It is supposed to last about 45 min. 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

Thank you all, here is a cute pic to think of when you pray!

Gearing up for another one...

I have been wanting to update for awhile but sometimes I have to mentally make sure I have both positive things to say and new requests otherwise I get blocked mentally. Starting with some things to praise God about... The injections have been getting much easier. Sometimes we can do both of them and she won't even cry, she will just goo and coo at me all the way through it. Occasionally we have that problem where the liquid won't go in, but we kind of take a collective sigh and mentally step back and we can usually manuever the needle in to where we can push the fluid without having to remove it and restick her. So that stress is drastically reduced.

I went back to work two weeks ago and again praise God that the transition has been going relatively well. Craig literally had to rip her from my arms that first day (I am mostly kidding) and I cried a little but it is good for me to have some away time too. I usually try to use my commute which is a bit longer now that I am working out in Allendale to cry and pray. I feel like after that first week of adjusting I went through an emotional drought for awhile and I didn't cry very much and I was kind of just surviving and going through the motions but I was stuffing a lot of my feelings way down. To be quite honest I went through a period where it was hard to pray. How do you come up with new words to say to express to God how you desperately want to be rescued from a situation when you have told him over and over and you feel foolish or small asking day after day? So the extra time in the car to reflect has been good for me to get out some of my emotions with God.

Wed March 4 is Sophies next surgery. If all goes well she won't have to stay overnight. It is just the dermabrasion next time and we will be meeting to map out the spots that morning. I don't know the time of the surgery yet but I will post that so that people can pray when the hospital calls.

I am still nervous about the satellite moles as they seem to continue to appear. No info from the Dr. about how long that continues. I am blessed that they aren't on her face and don't seem to sinister in appearance. The balloons themselves are getting a little awkward. She doesn't seem to react to them but it is getting a little more difficult to hold her without feeling a bit unsure of how the best way to hold her is. Well I am keeping the faith, I know how much God loves her. He gave his son to die for us, surely I can love my daughter through this storm. Here is a cute pic of her talking to her sister. God Bless, Amanda and company.

Today was a tough one...

Tonight was the first time in awhile that I broke down and really sobbed about everything. The injections went horribly this evening. My poor husband much braver than I who is doing the absolutely best he can do and I am convinced better than I can do takes it on himself I know. We wait to do the injections right before she will need to eat because I figure the feeding will comfort her after. However that means that sometimes she is already crying before we even stick her and for those of you who have heard my dear little Sophie cry its not a girlie cry, the girl can scream. And when she is crying she does larger breaths, which means great big lung excursions expanding and contracting while Craig is trying to hold still and inject. And for some reason tonight TWO times the needle was in and the fluid wouldn't go in so on the back he ended up poking her 4 times and she was bleeding and the needle I swore almost snapped off inside her because its so small and she was wiggling so much. Meanwhile our whirlwind 3 year old was circling around wanting to alcohol swab Sophie or give her her binky to "help". And I am blabbering instructions to Craig the whole time not because I am trying to criticize (I make sure he knows that, I tell him a hundred times what a good job he is doing) but because I feel helpless. Now picture 2 min after this drama and all four of us are on Grace's bed (Sadie would be up there too if it weren't for all the stuffed animals there is no room), Sophie is happily nursing as though nothing happened and all is well with her world, Craig is reading us all library books and our family PRINCESS devotional while I brush the pile of wet snarls on Grace's head. Somewhere between the third and fourth story I am reduced to a blubbering pile of tears. I am sad and angry. I am so mad that she has to go through this, that I can't protect her from it, that on top of having to poke her, her skin is going to get all big and stretched, and I, her mother am going to struggle to hold her and comfort her. And then she will have to have surgery upon surgery upon surgery. Even now several hours later when I thought I was calmed down I am crying again. I know in my heart I need to be grateful that she is ok and we will all get through this. There are people hurting far worse than this and I have no right to complain. But tonight I don't feel so hopeful. "I lift my eyes up to the hills - where does my help come from. My help comes from the Lord, the Maker of Heaven and Earth" Psalm 121. Please pray.

Next surgery scheduled

Big girl at 2 months, she likes to sit up and do the bobble head dance!
So the Dr had mentioned wanting to do more dermabrasions but was sort of vague and casual about it and then I get a letter yesterday that he has scheduled the surgery for the first Wed in March. He is the kind of Dr that when he tells you your appt is you come then, there is no "Thurs don't really work for me..." He is too busy and in demand. Its stressful, I won't really be able to get off work after just going back. I am already not getting paid these last few weeks of maternity leave. Plus, the dermabrasion idea still freaks me out a little bit, but I am also freaked out by the number of satellite moles that continue to crop up. Yesterday I found 3 more! Well keep praying, and for the injections too. We have to do that again this evening. Amanda
PS This is what Sophie thinks of the injections...

We did the injections last night by ourselves, it wasn't too bad. We did it when she was already ticked off and crying from getting dressed after her bath. Craig did very well this time and she is not a great binky person but I let her suck my finger which I think helped a little. Our theory for the one on the back next time we are going to try her bent sort of like when you get an epidural. We'll see, thanks for prayers Amanda

Update

Hey quick update, the Drs office found a pharmacy so we got everything but until they establish a contract with Messa we have to pay, it was a brand new pharmacy and they didn't even have a cash register. Anyways we got all our stuff and Craig did the injections under the Dr watchful eye on Mon and it was a little rough. We have to do it ourselves at home today so wish us luck. She also had a pediatrician appt and weighs a whopping 12 lbs 2 oz. Big girl. Its her sisters third birthday today so can't write much got to run. Amanda

New Year update!

Hello everyone, I hope everyone had a blessed Christmas and happy New Year. We had a very busy couple of weeks (exhausting but good) and have been trying to get into a realistic routine the last two weeks with Craig back at work. I think he gets a little exhausted trying to balance new baby "issues" with work but more on this later.

Sophie on Christmas DAY!

Sophie as a Christmas tree

Sophie had an appt yesterday with the surgeon. She had her first injections (the Dr did it to show us how so we haven't had to do it yet) and we are to start injecting 3 ccs into each port every other day. The one in front she didn't even cry but the one in the back she did, the needle is sooooooooooo fine the Dr said he could stick it in him self and he wouldn't even feel it so apparently she didn't feel it in the front but did in the back. The drawback to the very fine needle is that its hard to get the liquid in and takes longer. If we had used the bigger needle it would go in faster and not take as much pressure but hurt more. I think Craig will have to do the needle because of the pressure it took. I guess all be the on the soothing/no squirming team. So now for the trouble acquiring our supplies. He wrote us a "prescription" for the needles (we need a seperate kind for drawing the liquid out of the iv bag) the syringes, the iv solution and alcohol swabs. He told us to get to know our pharmacist well and explain the situation and that they would need to hear all about it because they were going to be someone to help with all the supplies. So Craig went to our friendly local Walgreens that we always use and the Pharmacist was like I can't get you those things and bill your insurance, I wouldn't even know how to do it. And I can't get you saline in a bag it only comes in a bottle. So we have nothing we need and we are supposed to start doing it tomorrow... Craig is calling our insurance today and then calling the Dr's office back, maybe if he calls the pharmacist. Anyway if you are reading this say a little prayer that all the kinks get worked out. I guess we need on official method of disposing of the needles too, you cant just throw dirty needles away! I would have thought with all the diabetics in the world that this wouldn't have been so complicated.

Then the Dr thought the dermabrasion especially on front looked promising which I thought was really weird because you can still see brownish colored mole in the area it is just much lighter so now he wants to schedule a whole bunch of dermabrasions which she will still need to be put completely under for but thinks they would not make us stay overnight. He said he may just try to abrade a bunch of the satellite moles and the paler stuff mostly on the front, thighs, buttocks, etc. Craig seems to think this is a great thing. I trust this Dr wholeheartedly but I don't feel psyched about this. If it doesnt completely remove the mole the way the expanders do then it doesn't completely remove the cancer risk, right? So I don't understand why we would go nuts literally burning my baby all over just to lessen the appearance and not remove the risk. This is me just thinking out loud and obviously I will pose this question to the Dr before we go ahead with this plan, but I need to pray about this issue also because I don't have peace with it although it would be a lot easier then the balloons and she didn't seem to have pain with the burns before because I guess the saran wrap bandages keep it contained where she doesn't really feel it whereas if the bandages come off then it stings when exposed to air like a skinned knee.

Finally I have wanted to post my feelings for a few weeks (all they change on an hourly basis) but I feel really weird venting about things that all people adjusting to new babies experience. But I figure if you are reading this you have already expressed a willingness to pray for our family and if you are willing to pray about Sophies "situation" than maybe you wouldn't mind adding a few extra prayers for normal baby issues. The Zantac for possible reflux has seemed to help somewhat and being through the holidays and getting into a routine has also improved her sleeping but she still goes through occasional bouts of insane crying especially right before bed for the night. But sleeping she is doing well, a lot of times she doesn't wake up until early when Craigs alarm goes off (around 5:30) and doesn't nurse very well which makes me think if we weren't sharing a room she would maybe sleep all the way through the night! Ah the joys of a small house! So you are all thinking what is her issue. Here it is I am rapidly approaching my return to work date and I barely leave the house, I am plagued with anxiety when I do and can only manage with Craigs help and the thought of doing it without him and both kids is petrifying. The only time we did it was a 30 min trip 5 min away to the pediatricians for Graces flu shot. I am petrified that I will never be able to function in society, those of you that know me well know that getting out and about isn't my strong suit anyways. There are periods of each day when I literally feel I am having a panic attack at the thought of going back to work. And the times I have peace I am going through the motions, trying like a mad woman to get my whole house in order so that I can function! As if lists are going to help my emotional turmoil. So know that some of you have a glimpse of my secret neuroses (only my mom and sisters were supposed to know!) I guess you could pray for my peace and sanity as well. On top of everything we are trying to potty train Grace, going through extra stress in order to hopefully eliminate one more stress from our life. I feel everyday that I feel so lost and alone God is teaching me, I am becoming stronger in faith, praying for others more (especially mothers!) and praising God for my many blessings. Top on that list is all the wonderful family of God that has blessed us with love and prayers. And Sophie is thriving. She is becoming so chatty. Every time she finishes nursing and gives a good burp she always wants to chat and sits and goos and coos and smiles at me. Its so cute. She even has this way of saying hi where her mouth moves like she is saying hi and she smiles even though no sound comes out. This is usually when she first sees me. I am going to try to get a video of one of our chats to put on here so be on the look out for that. Love to all. Soldiering on..... Amanda

Bonding in the bath. Sophie is fascinated by her very "animate" big sister and always stares at her in wonder and amazement when ever she is around. Graces makes for good tracking practice.