Thursday, November 21, 2013

Surgery #2: Centennial Women and Children's Hospital

"Every surgery is different", said the recovery room nurse as we walked Anna Faith with her IV tubes and other taped on probes to her holding room.  I had to agree.  Our experience with surgery this time was quite different from the first.  Some things were better, some things were worse.  Here's how our trip to Nashville for round #2 went:

Since Kris' mom had recently had knee replacement surgery, we were concerned no one would be able to watch our three boys.  Thankfully, a friend at church who stays at home and does some babysitting was willing to take them despite being over 30 weeks pregnant and having 3 other small children in her house at the time.  We don't know what we would have done without her!  We took the boys to her house and they each said their goodbye's to Anna Faith.  It was so sweet how they loved on her and two of them cried as they said they'd be praying for her.  We began our 3 hour trek to Nashville.  She happily played in the back seat with some of her toys.  We stopped for dinner at a southern buffet restaurant off I-40 and she ate her fill of barbecue and mashed potatoes.  At 8:00 we arrived at the hotel and settled in.  Little Lady was not ready to calm down.  She was not fearful like our first trip to the hospital, but full of energy.  I gave her a bath and she acted like she was swimming the English Channel.  Thinking it would wear her out I let her play for a long time in the tub, but when I got her out she was still a rubber band, jumping on us and having the time of her life.  It took until after 10:00 to get her to sleep.  Kris was already so worn out from the trip and work earlier in the day that he fell asleep while she was still tossing and talking to herself in the other bed.
She wouldn't calm down in the hotel!
At 6:00 we got up, and she woke up happy, but soon after started to get anxious.  She must have had a deja vu experience, and was clingy and not happy to be leaving the hotel.  This time we knew where we were going, so easily got parked and to the right building to check in.  There was much less stress because of it.  Anna Faith didn't seem to recognize anything, which was good.  We got her in a room after going through several departments to check in and she sat with us on her hospital bed.  She wasn't crazy about taking her clothes off and getting into a gown though.  When she saw the gown, she grabbed her blanket and it went in her mouth for an hour and never came out.  Blankets are her pacifier.  We know she's either nervous or sleepy when they go in her mouth.  She was still smiling and very compliant with the nursing and anesthesia staff who came in and out to talk with us, fill out forms, and take her vital signs.  They gave her Versed again this time, which makes her forget everything and get kind of relaxed and loopy.  Dr. Chester came in and decided she would go for the cheek nevus and begin on the front of her neck as well.  We were pleased and told her to do however much she wanted this time.  When the nurse came to take her out, Kris and I didn't have a chance to get emotional.  She cried for a just a second until the nurse showed her a phone and she didn't care anymore.  That's the power of Versed!  
Getting ready for surgery- in went the blanket!

She still didn't want her scrub top on- not pretty enough, perhaps?
We didn't get updates on the phone in the room this time.  We waited over an hour before we heard anything.  A nurse came in to tell us Dr. Chester was still working on her but she was doing fine.  Finally we knew what was going on!  I updated everyone on Facebook and worked on reading and journaling.  Another hour went by and we had no word.  I realized she had been in surgery longer this time than the first and was starting to get antsy.  Kris reassured me that if she's in there longer, that means she's getting more taken off this time, and that's good.  I just wanted to hear something!  Finally, 2 1/2 hours after surgery began, Dr. Chester appeared.  She told us that she had to work very slowly because of the nerves on Anna Faith's face being at risk of damage.  She was not able to remove the entire cheek nevus, but will be able to easily take the rest of it off in 6 months.  She took a large portion of the front of her neck nevus off as well, and it will be able to be finished in 6 months too!  We clarified with her that she now only has 2 surgeries left!  One will be in February to finish her scalp and do the back of her neck, and the other, in May, will finish what was started today.  We were so glad to hear the news.  We are HALF WAY!  Woo Hoo!!!
We had to wait a while to get instructions to go to the recovery room.  This time we could both go back, I guess because we were in a bigger space in the room where there was a chair and some standing room by the bed.  I still picked Anna Faith up because she wanted me first (doesn't every baby want their mama when they don't feel good?).  She had bruising and swelling on her cheek. It looked like she had just had a bunch of dental work done.  Her neck and cheek were bandaged where we couldn't see much yet.  We had to wait until morning to take it off.  We were told she woke up in surgery just after they finished and was very upset, so they put her back to sleep to wake up in recovery.  When she woke up this time, she wasn't upset, but very drugged looking.  Her head bobbed around and she could barely keep her eyes open.  She tried to talk to me, but it came out slurred.  When the nurse took her vital signs, she said "thank you" so sweetly we all wanted to cry.  I gave her a tiny sip of water, and she was very eager to get it.  She occasionally coughed to clear her throat where the tube was in surgery.
We went back to her room after about 20 minutes and she was still very tired.  She was starting to cry though, so this time Kris took her and laid in the bed with her to sleep.  It was the sweetest thing to watch.  Eventually he got out the bed and went to call our parents outside where we had phone reception and get us some lunch.  By the time he got back, about an hour later, she had just woken up and was willing to drink some more.  The nurse told us we were cleared to go home when we were ready!  She had not thrown up at all and was becoming alert and had soaked her diaper.  The nurse removed the IV (Anna Faith was very happy about that), the probes on her leg and toe, and she was a happier girl.  They wheeled me and her out together to the car and we were on our way home!

Sipping water, and no throwing up!
Unfortunately just down the road she threw up :-(  She didn't even cry,but went to sleep right after I cleaned her up and slept until the last hour of our drive home.  She wasn't happy for that hour though.  I could tell she didn't feel well.  She had soaked her diaper again (I didn't realize until we got home) and was probably in some pain.  I put her in front of cartoons and gave her some power-aide and unpacked while Kris went to get the boys from our friend's house half an hour away.  Then the crying began.  She was not happy at all.  She thrashed and refused to be held.  I gave her Motrin to add to the Tylenol she had already gotten and prayed it would kick in soon.  I hate seeing my girl in pain.  She finally let me hold her and pace the house, then we sat down and played a game together on the iPad.  The laundry and unpacking would have to wait.  When Kris got home with the boys and take out dinner, we sat down and she ate some rice.  Then she cried again.  A lot.  She was tired and still uncomfortable, touching her neck and screaming.  We held her off until 8:30 and noticed she was falling asleep in Kris' lap while I read books to the boys, so we put her to bed.  She woke up only once in the night for more pain medicine and went back to sleep.  We were thankful.  

This morning the pain returned.  She didn't want us to touch her face.  I took the bandages off to apply ointment as instructed and took pictures.  The tears flew.  Poor Little Lady.  The swelling has gone down and only a little bruising is obvious.  Her skin isn't as tight as I thought it would be.  It's amazing what Dr. Chester can do with tissue rearrangement to keep the skin looking normal when it's pulled together.  In six days I take out some of her stitches and the others will come out in a couple weeks.  We'll see Dr. Chester in Nashville for a follow up on December 9th and try to schedule her next surgery for February while we're there.  

We have such a brave little girl.  God has once again answered prayers, and we thank all of you who have supported us, encouraged us, said kind words, and most of all, who have lifted us up to our Heavenly Father.  As we go into Thanksgiving celebrations in one week, we have so much to be thankful for.  WE ARE HALF WAY!

Monday, November 18, 2013

Dreams and a dripping shower head

Drip....Drip....Drip....  Every 13 seconds for the last few weeks, the shower in our bathroom has dripped, and there is nothing I could do to stop it.  I would sit awake in my bed and want to scream, trying sponges under it, closing the door, and trying to count to go to sleep.
Yesterday in Sunday School we talked about the Enemy.  He comes to steal, kill and destroy.  One of the things he wants to steal is our joy.  He wants us to be miserable human beings, wallowing in self-pity, covered in worry, drowning in doubt, and suffocating in bitterness.  He is pure evil, wanting Christians to loose their salt and vitality in a world saturated in darkness.
That dripping, that awful, cursed dripping.  I just wanted to rip the shower out of the wall.  Doesn't that represent the temptations in our life?  We get so mad they are there, we fight thoughts to cause strife, and we want to scream and scratch at them.  We get mad at God for allowing them to be there, thinking "It's not fair, God!"  Why are you doing this to me?  Don't you know I need some peace in my life?  Don't you understand I want a good day?  Why can't I have it easy for a change?
I often don't understand God's purposes.  Why does He want to see His children suffer?  Why does He put thorns in our flesh, dismal circumstances in our path, and cloudy days to block the view of His presence in our lives?
Last night I had an awful night.  I had been struggling with headaches off and on for 4 days, and yesterday the pain hit an all time high.  I still went with our family to church, not wanting my children and husband to miss out on the fellowship and blessing of being able to worship together.  Yes, I'm so stubborn I don't know what's good for me.  After church I went to the car and sat there in tears, eyes closed, waiting for Kris to come with the little kids to go home.  He got in the car and told me "I took a while because there were some guys who were interested in the gospel and didn't have Bibles."  I'm so glad I was stubborn and stuck it out so Kris had the opportunity to share with those guys and put the Word of God into their hands.  Then we went home and he sent me straight to bed.  Drip, drip, drip.  Finally, in an act of desperation, I begged him to do something about that dreaded shower head.  He cut off the valve.  Finally, I could rest.
While I rested, I dreamed.  I've been having so many dreams lately, many about things happening to my children that I couldn't prevent, some about falling, and last night I was on a roller coaster.  Up and down, up and down I went.  Then I went to crystal clear waters somewhere tropical.  There were others there, people I didn't know, but they were all peaceful and happy.  I relaxed and soaked in the warm water.  Then a man came to us and brought us to a table.  I didn't know what was going on until he spoke.  He shared that we have bad things that happen to us, big disappointments that we don't see coming.  Then he pulled out a Bible.  He read 1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it".
 Those words were such a comfort to me.  I woke up, and my headache was finally gone.
My baby girl is about to go under the knife again.  I've been so anxious lately that something would happen to prevent her from having surgery: childcare not working out, my health, one of the kids getting sick, etc.  I don't know why I worry, when God has it all under control.  Why do we try to manipulate our circumstances and play God?  Satan is trying to steal my joy.  I want to crawl into the shelter God has provided for me, the refuge from the temptation to be anxious, miserable, and fretful, and find peace from the storm.  I don't know if any of you are having similar temptations seizing you, but I hope by sharing you will be encouraged to fight off the arrows the enemy is trying to hit you with and return to the joy of the Lord that will keep you strong and keep your light shining brightly.

Tuesday, November 12, 2013

Here we go again- Round two of plastic surgery

It's one week away....the 3 hour drive to Nashville, checking in the same Best Western, getting up early to arrive at the same hospital 2 hours before surgery, and the same pains of waiting again. It seems like only a couple weeks ago that we went through this before.  She still refers to her scars as "boo boos", because they took 2 months to completely heal last time.  The healing process was long and painful. Now we get to experience the discomforts of healing all over again.  And it won't be the last time.  I hate seeing my baby sick, vomiting every time she drinks because of the effects of anesthesia, pulling at her tubes and bandages and looking so scared and confused.  It only lasts several hours before she's disconnected from the IV and starts feeling herself again, but I feel like I'm the one who brought it on her.  I chose this for her.  She doesn't know why it is happening and why the parents she's grown to trust are allowing her to go through it.  Sure, kids are resilient.  They overcome things so much more quickly than adults.  But it still doesn't make the imminent any easier for us.

This time we don't know what she's going to have removed. It all depends on how the new skin formed from her first surgery is doing.  If it is flexible enough to be manipulated and rearranged on her face, she will be having the entire cheek nevus removed.  I still can't imagine her without it, or how her face will look normal after it is gone.  If the new skin isn't ready yet, Dr. Chester will work some on her neck and only remove the bottom portion of her cheek nevus.  She'd rather not pick away gradually at these spots since it's going to be harder with a few wounds at once than one wound, but that may be the best choice this time.

Surgery is set to begin at 9:00 a.m. on the 20th.  We don't know how long it will last, but imagine it will be comparable to her first surgery which lasted an hour and forty-five minutes.  This time there won't be a huge head bandage to look at.  We'll see her surgical site(s) pretty clearly, which may be visually disturbing if there is a lot of swelling and bruising.  We expect her to have more pain this time as she recovers, as with a scalp wound you don't stretch and touch it versus a neck or cheek, which is moving constantly while one is awake.

Going for a ride with Mommy and Big Brothers
Our Little Lady has continued to amaze us over the last few months.  She is speaking more clearly in small phrases and is becoming pretty opinionated about what she likes or wants.  Yet she is still pretty easy going.  When asked to do something, even by her brothers, she often does it to please us.  She LOVES to say thank you for everything, and answers "yeah" to most questions.

We continue to try to find the source of her digestive issues.  We have been to a GI specialist and an allergist to try to find answers.  She had tests run and all the GI doctor found was that there is inflammation and white blood cells found in her colon.  The allergist determined she doesn't have a specific allergy, but may be sensitive to either lactose, soy, or wheat.  We have ruled out this past week that she is not lactose intolerant.  She has had no changes for the better by changing to soy milk and milk free foods.  We will try wheat elimination next.  It is frustrating, as we still are clueless, but at the same time we count our blessings.  She has finally gained a pound of weight (24 pounds in March and now 25 pounds in November), doesn't seem to be in pain, and is still developing and happy.

I need to share on this blog more.  So many precious moments have occurred and most will be lost from memory if not recorded and shared.  Every day with my kids is a valuable gift from God.  In the scheme of eternity I only have them home to train them and mold them for a very short time.  Some days I want to wish them away from my care for just a short time so I can go out to town, be around other adults, attend weddings or special meals, retreat to a women's event, fly away on more mission opportunities, participate regularly in outreach and sing again in the choir, and take trips to visit old friends across the state and country or relax at the beach.  People without children have these options, even people with only one or two kids who can easily travel, find childcare, and have flexible schedules and budgets.  But I look at my four little ones and think:  "What is the better gift?  Enjoying my life to the fullest or pouring it to the fullest into theirs?"  What makes me more holy and like Christ?  What is a better investment?  What reflects the heart of Christ more?  My selfish thoughts and wishes are stifled when I hear my 6 year old talk about what he's been praying about lately as we sit and do a discipleship lesson together before bed, my 7 year old in tears tells me as he goes to bed that he wants us to go to the Netherlands one day soon to share with "our people", fellow Dutchmen,  about Jesus, and my four and two year olds sing "Jesus Loves Me" and hug on their children's Bibles throughout the day.  I'm never going to be famous or successful in the world's eyes.  The average stranger looks at me with my car congested with kids as they pour out the door and looks at me with confusion, not admiration.  However, if I'm the mom they need me to be, the mom who consistently points them to Christ, then this life HAS been truly lived to the fullest.

Thanks for your prayers as we approach Round 2 next week.  Surgery is never routine and always has risks.  We know God is holding our daughter in the palm of His sovereign hand and trust Him.  Your prayers are felt and we know we will feel His peace as we wait.  We will post updates on surgery day and share results with you.