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