Family Vacation...Interrupted

"We have to take Emma back to the emergency room in Orlando" I called to tell my mom in tears on the second morning of our vacation.  She rushed off the golf course, leaving my dad, brother and brother-in-law, to help us figure out what to do.

We were so looking forward to five days away because it was the first time since Christmas 2009 that my whole immediate family would be together.  My sister, her husband and two kids, as well as my brother and his girlfriend were all going to Mom and Dad's place in Fort Myers for a fun-filled extended weekend.  When we scheduled Emma's surgery we mentioned this vacation and they said that it should be fine since we weren't going out of state.  When the swelling occurred and they said talk with us in a week, we knew that meant right before we would leave.  However, after calling several times, we never got to talk to the right person.  Based on what they'd told us previously, we thought it'd be okay to continue as planned.

Our time started great!

Silly cousin!

Happy Grandma and Grandpa with all their kids together

And then Friday morning we finally got to speak with Emma's surgeon's nurse.  We had sent her pictures of the swelling and she said, "We need you to bring Emma to the ER in Orlando."  They were concerned about the amount of swelling two weeks after the surgery and the dangerous possibility that there was spinal fluid leaking out of her incision.  We feared the worst (another surgery immediately?) but hoped for the best (they just need to check her out and she'll be fine and maybe we can come back?).  We made the difficult decision that Mark would make the three hour drive back with Emma and I would stay with Elsie.  

The good news...Emma was okay.  No leaking spinal fluid, no infection.  They stayed overnight in the hospital in order to see her surgeon the next day.  He basically said, we just need to wait another couple weeks to see how she's doing and whether or not the swelling is diminishing.   The bad news...they didn't get to come back to family time.  So, I got a lot of one on one time with this little one...

and Mark got a lot of one on one time with this little one...

On top of all of this, as my mom was driving Elsie and I to meet Mark this afternoon, Elsie had another seizure.  They're always scary.  We still haven't heard if the doctor has reviewed her MRI and what the results are.  So, please keep praying for both of our little ones.  Pray that Emma will continue to heal and get stronger and stronger...since her second little hospital stay, she's actually done great.  And pray that we have a diagnosis and treatment plan for Elsie in place soon.

MRI tomorrow

It's Elsie's turn.  Our poor little lady has to has to have an MRI tomorrow afternoon to continue to diagnose and know how to treat her seizures.  Praise the Lord she hasn't had one in over a month.  We'll wake her early to eat a bit and then she can have a bottle and then from 9:15 until she wakes up from it, maybe around 5 pm, she can't eat or drink anything.  Our friend will stay with Emma and I'll be solo with Elsie.  Please pray for us.

Emma is doing okay.  She goes back and forth from wanting to play and be up and about and just whining and wanting to lie on the couch.  We still just have to wait until Tuesday or Wednesday to talk with her doctor about how she's doing after a week on this medication.  Keep praying for her too.

A bump in the road

Last night as we were giving Emma a bath we noticed some bulging and swelling at the bottom of her incision.  We took some pictures and emailed them to her neurosurgeon this morning.  This afternoon a phone call confirmed what we didn't want to hear...she's leaking spinal fluid and it is pooling at the bottom of her spine.  So now she's on a medication to slow the circulation of the fluid.  It may be that the slowing of the fluid will allow her body to close the hole on its own.  If after a week on this medication, the swelling is just as bad or worse, we go back to the doctor and it likely means he needs to go back in and patch it up.  ie, another surgery.  Please be praying this week.

Dynamic Determination

...when wielded for good, it's an amazing trait to possess.  But this afternoon, after Emma had been lying on the couch for three hours for resting time and then a nap, I was asking her to stand up and she was determined not to.  The scene that followed was not a pretty one.  It ended with me on my bed in tears.  After calming myself down, I had a great little chat with my daughter and we made a new plan.  When we hear Daddy walk in the door, let's walk over to the gate to greet him.  He'll be so happy and so will both of us.  Five minutes later, we hear Daddy and I try to put her down and she just cries and won't put weight on her legs.

But today, Daddy was the hero.  He must have drank some super-Daddy juice at work or something.  By the end of the night, Emma had walked all over, taken a bath, stood to play for a while, and climbed up one and then two and then three steps!  (Maybe I should be the one going to work.)  :)  She really is doing more and more each day, despite how reluctant she is, or how poorly I'm doing at encouraging her.  Please pray that Emma would be determined to do what it takes to get better.

The first time she walked after the surgery, Sunday right before we left the hospital.

Two words

She's home!

Emma's been making steady progress these few days.  She is off of all the machines and her incision is healing nicely.  The therapists and doctors would like to see her up and about, taking steps and standing and they would pretty much send her home.  The problem is not so much that she lacks the strength to stand.  She is super anxious about being "messed with" in any way that might cause her pain.  Pray that tomorrow (Sunday) she is able and willing to stand and take a few steps and that we would be able to bring her home early. 

Emma's nurse took her down to the lobby where there is a cool Disney themed play area.  She had so much fun!

On the up

The doctors are all saying that Emma's doing really well and right on track where they'd expect her to be.  She's able to sit up now and some physical therapists will see her tomorrow to help get her moving.  She's still very apprehensive and scared about anybody touching her.  Changing the bandage on her back is awful, she screams and sobs through the whole thing.  However, we just got the news that instead of three times a day, it can now be changed once a day.  Woohoo!! 

Emma painted my nails today!  They are beautiful.

Teddy bear has been doing everything Emma does.  He too gets his heart checked, and his blood pressure taken, and even gets his bandage changed.  He gets scared too.  The nurses have been great about this!

"Poor Teddy Bear" Emma says.  :(

A few special visitors...

Emma was able to see a few new and fun visitors today...

And then there was...

Thank you for your continued prayers. Emma is more and more like herself.  No infection or leaking spinal fluid at this time.  Pray for her heart and anxiety though, as every time a nurse or doctor enters the room she is agitated and upset and every time she's touched (which is every hour) she can really lose it. 

Tired and stressed

Does this describe Emma or me?

Yes.  (I've had about two hours of sleep in the past 38 hours, so this is going to be brief.)

Recovery so far has been rough for Emma.  Until this morning if she wasn't sleeping, she was crying.  That made for a long hard night.  Today she ate some and played some and has slept much better.  However, when the nurses or doctors have to do anything to her, she freaks out.  We've had to change dressings and an IV.  She screams "Mommy!" at the top of her lungs while I hold her hand brush her hair and cheeks and say, "I'm here.  It's okay.  We're trying to get you healthy and strong."  It's awful.  

Keep praying against infection and for no leaking of the spinal fluid.  We've not been told either has occurred yet.  And pray that we both get some sleep tonight.  

This woman's sole job at the hospital is to play with the kids, explain what's happening and make their stay as comfortable and fun as possible.  Emma wanted to sit up, she's explaining that it's okay to play lying down.  :) 

One long day

Maybe it's normal for your days to start at 4 am, but in our house that's not normal!  We pulled Emma out of bed and put her in the car seat.  She whispers, "Mommy qu (to, in Chinese) doctor?"  "Yes baby, we have to see the doctor today."

We had quite a bit of time to play before surgery started.

And then they came to take her back.  A very clear example of trust and dependence...in the team of doctors, yes, but ultimately in God.  He is the Great Physician and it's in His hands she is and always will be.

We were told a 6-8 hour surgery and we thought that meant the surgery part.  Not the anesthesia part which was about an hour on either end.  So we were in for a long day.  We said goodbye at about 8, got the phone call about 9:15 to say the surgery had started, and then at 11:15 we got a call to say, "the doctor wants to see you."  Mark was actually in line at the cafeteria.  I was sitting with our bags.  I scooped everything up, got him out of line and we went upstairs rather anxiously.  "Does this mean bad news?  It's been two hours!  Why would he leave surgery?"  Our hearts raced.  And then he walked into the consultation room with a smile on his face.  Things had gone pretty much as expected, just faster.  The MRI we had done in Columbus had shown what they needed to see.  They were able to remove the bone that was literally splitting her spinal cord in two.  Some of the fatty mass had come out relatively easy, other parts had to be lasered out.  And then we heard those beautiful words, "really it couldn't have gone better." We rejoiced after he left and praised the Father in tears.  We ran to the cafeteria, knowing we still would not be able to see her for another half hour to an hour.  

When we saw her again she was still sedated, face swollen from lying on her stomach for so long.  Her first words as she came to were, "Mommy hold you?" (Which is Emma language for "Mommy hold me." Obviously I can't do this for several days.  Pray for her little heart to be patient.  The rest of the day she's been in and out of consciousness, but when she is awake she's been mostly whiny and crying.  It's hard to know if she's scared or in pain.  We know its both but we need to know which to address in the moment.  

Pray against infection and pray that no spinal fluid leaks, which is a possibility given all that they had to rearrange to do this surgery. 

We're SO thankful for the love and support we're receiving!  Hugs from the Fertigs! 

Pray for Emma's surgery

She comes, running, tumbling, jumping, somersaulting and bounding into the room.  She heads straight for the front door.  She heard someone enter.  Her daddy is home.  She loves being thrown up by her daddy.  She loves her daddy.  This is our active little lady, our beloved Emma Hope.  If you’ve met her and have spent any time with her, you know she is spunky, personable, wants to be involved in it all…and so full of emotion.  Her facial expressions are priceless!  It just doesn’t seem fathomable that our “healthy” little girl has to have this major surgery.  Right now she is NOT sick!

But her back…her spinal cord is tethered in three areas.  (I am definitely not the expert, but this is what I think I understand.)  Spinal cords are supposed to be loose.  As she grows, if tugging starts to happen, the nerves will start to be affected.  There is also a bone growing through her spinal column which could actually start to sever her spinal cord.  So on Tuesday, October 8^th, the doctor will make an incision from Emma’s neck to her tailbone.  He will use a laser to shrink the fatty masses that the cord is attached to and then somehow release the cord.  He will also remove that bone.  I wish I could give you an exact time the surgery will start.  We have to be there at 5:30 am to start the check-in and the prep work.  Once it begins the surgery will be 6 to 8 hours long.

Please pray.  Please consider fasting for lunch to spend time praying for our little girl.  On Tuesday, we will be waiting on pins and needles all day to hear “all went as planned, she’s doing fine and can begin recovering.”  We also want this to be a once-and-for-all surgery.  Emma will need to have MRI’s yearly because there is a 20% chance the cord will reattach and another de-tethering surgery will be necessary.  Pray for her recovery.  They say she will be in the hospital a week and then lying around for at least another week at home.  We long for her to be up and about again as soon as possible.  We also are anxious that there could be permanent damage.  We don’t want to even think about what life would be like for our Emma to never run and jump again should something go wrong.  And daddy will be oh so thrilled when that little lady feels good enough to run to the door and jump into his arms to be thrown in the air.