Meant To Be

We've decided this will be Abby's Birthday song this year.  

Steven Curtis Chapman

from Veggie Tales- It's a Meaningful Life!

Long Before You Drew Your First Breath
A Dream Was Coming True

God Wanted to Give A Gift To The World
So He Wrapped It Up In You

Every Step That You’ve Taken
Every Move That You Make
Is Part Of His Plan

You Were Meant To Be Touching
The Lives That You Touch

And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring
And Singing The Songs
You’ve Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be
You Were Meant To Be

Long Before You Took Your First Fall
You stumbled to the ground
God started telling the story of you to the angles around
Every failure and victory
Everything in between
Its all in his hand

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring

And Singing The Songs
You’ve Been Given To Sing

Days 6 and 7

It's been a rough weekend for Abby.  Just more of the same discomfort, coupled with a few changes.

Saturday I had her in the bath *carefully* changing her dressings.  As I struggled with a stubborn piece of tape, out popped her feeding tube!  Now, normally it's not a huge deal to change a simple G-tube (not GJ-tube).  But being that this one was placed for a purpose by her doctor I was really trying to keep it in till her appointment.  And being that I have somewhat of a pride issue, I really wanted to show up to our appointment with it still intact... just to show him that we could do it.

To my surprise I was able to maneuver it back into her stomach.  And it worked!  At least until this morning.  Abby had several seizures during church and after about the 5th one I looked down and saw that her pants and shirt were soaked in formula/medications.  yuck.  I knew it had popped out again during one of her seizures.

We gave up on that crazy tube and put in a new Mic-key button.  There's nothing like an obnoxious change to make you appreciate what you had!  I actually missed that G-button.  It's so much easier to use than the 12+ inch, tape laden contraption she had this past week.

The purpose is the same- feeding into her stomach.  And we now know it doesn't matter what type of tube it is, she is just as miserable with both.

It's 10 pm and she is finally settled into bed and comfortably asleep, after 12 seizures and hours of agitation.

Days 4 and 5

Made snow cream.  yumm.  The boys and mommy loved it!

Got Abby's follow up appointment with the GI doctor for Jan 19th, next Wednesday.  Continuing with the hourly bolus feedings.  2 oz has been our max at one time.  As expected Abby just isn't a happy camper during and after feeds.  As long as we aren't feeding her she seems pretty happy.

I know I've said it before but, I HATE REFLUX!!!!

We are trying to teach Josiah not to use the 'hate' word unless it's really necessary.  Today in my world, it fits.

I just want her to enjoy being fed.  To enjoy tasting food and swallowing again.  I think at this point she would rather be hungry.

Waiting on a call back from the doctor's office for further feeding instructions.

Last night we enjoyed a lovely dinner with friends and an extra special treat:  a winter four wheeler ride through the snowy, moonlit woods!  It was like breathing fresh air for the first time in days.

Thanks friends!

Day 3

SNOW DAY!  

We finally got to enjoy it together.

Ice Castles

Sledding!!

Getting cold and cranky!

Day 2

Made a snowman cake

Little hands helped

Little person found the blue food coloring!  Ahhhh!  

blue carpet..

blue shirt...

blue hands...

Long bath!

Gave medicine at 8 am, 9 am, 10:30 am, 1 pm, 2 pm, 5 pm, 8 pm, 9:30 pm.

Gave 1 oz bolus feeds every hour.

Held Abby most of the day to keep her from biting.

Oh yea, and changed lots of diapers as usual.  

Day 1

Most of Alabama were snuggled inside when the snow came... we were driving in it!

View from the pre-op room.

A little friend sent with Abby by Josiah

Stats

view from her room

trying to sooth a sore throat with some candy

Early discharge

Abby has not had any seizures today! Thank you for all the prayers.

We were given the option to go home tonight if we thought we could make it. After checking the roads we decided to take the opportunity to hug the boys!

Sent from my iPod

Snowed in- RM 778

Abby is out of recovery and in a room at Children's.  The procedure went well and we had a good long chat with her doctor.  (he is so wonderful!)  He and the surgeon took a good look inside and gathered more information to help us make decisions for Abby.  Her previously done Fundopliction is no longer working and has become "loose" and "floppy."  They found significant esophagitis.  The pictures they showed us looked worse than previous scopes (in my non-GI professional, mommy opinion).

Her G-tube balloon wasn't as close to her pylorus as he had expected.  This meant they didn't have to move her G-tube site!  They did change her tube to a crazy looking contraption.  The part on the inside of her stomach is very low profile and will hopefully interfere less with her pylorus functions.  The outside part is a cumbersome mess of tape and tubing that can easily be yanked out!  Even he apologized for it.

The plan is to use this wonkus tube for a 2 week trial period where we will attempt bolus G-tube feedings. (no tummy time)  If she starts having a lot of vomiting during this time we will consider placement of a permanent "true" Jejunal tube, with no gastric access.  (This would be a bummer for many reasons I won't go into right now)

Her reflux esophagitis needs to be fixed.  He placed her on a third reflux medication in hopes that it will help her discomfort.

BEST CASE scenario:  She tolerates bolus feeds again, doesn't vomit and isn't terribly uncomfortable thanks to the increase in meds.  After the 2 week trial we change to a low profile G-button (yippee) and continue with life.

WORST CASE:  She absolutely can't tolerate G-feeds and goes back to surgery.  They would place a true Jejunal tube (bye bye normal feedings) and perform a redo Nissen Fundoplication.

EXPECTED CASE:  She tolerates the feeds to a point, continues with the same discomfort she's dealt with for years, which looks like: finger biting, hair pulling, moaning and yelling until all hours of the night.  We go back for biopsy results in 2 weeks and discuss doing the Fundoplication.




With what we expect to happen, she might be able to return to normal bolus (not a continuous drip) feedings without the horrible reflux.

We prayed for the truth of her discomfort to be discovered and a good plan to develop from the new information.  The Lord is faithful and has accomplished that today!  The next several weeks will probably be hard on Abby but we are narrowing down the options.

 The fun part of this ordeal is that we got to drive in the snow last night!  Generous friends let us crash at their home last night, only 10 minutes from the hospital (in the snow).  Thanks Micah and Julianne! This morning was a winter wonderland with white roads and icicles!  The boys are home having a blast with Papa and Grandma enjoying the rare treat.  We miss them.

Abby will stay here overnight and hopefully we can safely drive home tomorrow and play in the snow!

(our backyard!)

Procedure Scheduled

Abby will be having her GI procedure Monday morning.  Her GI doctor along with a pediatric surgeon will be there to make decisions about her care.

They will start by doing an EGD (upper GI endoscopy).  She will be under anesthesia during the procedure so they can perform any surgery that might be needed.  The GI doctor spoke with us over the holidays to propose several different surgical options.  We won't know for sure what will be done until they get in her stomach and take a look around.  I'm most interested to know what her esophagus looks like as she has had esophagitis and gastritis in the past.

Her G-tube will likely be moved to a better position, away from her pylorus.  He mentioned placing a different kind of G-tube (low profile) also.

We are anxious to get this procedure done, hoping it will bring more comfort to our girl.

Behind the scenes things have been rough for Abby.  The magic juice (Carafate) has lost some of it's magic effect over these past several weeks, and her discomfort has been difficult to manage at times.  There have been some days that it seems we are just living for the next dose of medicine, doing everything in our power to make her comfortable.

We've had to completely stop giving her meds through the G-port (stomach).  In the past we were fearful of giving her meds through the J-port (intestine) b/c it has become clogged.  If this port clogs we can't feed her and it's practically impossible to fix without totally replacing the tube... which is another outpatient procedure at the hospital!  These past few weeks we've resorted to putting meds through this J-port b/c she totally comes unglued if we use the G-port (stomach).  (I'm sure this is clear as mud; I know it doesn't make much sense unless you are used to using G-tubes)


On Monday we will be at the hospital at 6 am.

One concern we have is with the anesthesia.  The past 4 times Abby has been sedated for various procedures/surgeries she has a dramatic increase in seizures afterward.  In April after she had the shunt revision she ended up going into status (prolonged seizure) the next day, which sent us back to the hospital.  Her VNS (vagus nerve stimulator) will have to be turned off during the procedure which also puts her at higher risk for problems.

Thank you to everyone who has prayed and continue to pray for Abby.  The Lord has been so faithful in every detail of this ordeal; from the wonderful doctor, to his nurses, to the hospital staff and their scheduling this procedure so quickly.  Our family who are willing to give of their time (and energy) to stay with the boys.  Somehow even with all the blessings I still find it difficult to trust that all will go well Monday and her problem will be fixed.

"We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
C.S. Lewis

I pray this verse over Abby:

"that he who began a good work in you will carry it on to completion until the day of Christ Jesus."


Philippians 1:6

10th Anniversary

(warning: long slide show!)


10th Anniv from patty hull on Vimeo.


Thursday we celebrated 10 years together!  I have 10 unique bouquets of flowers around my house (from my sweet husband) to remind me of all our blessings.

We spent the day reminiscing about these past years.  How can you sum up this amount of time in one post?  You can't.

A few land marks include living in 8 different places, 3 cities and 2 states, earning 3 degrees, having 3 children, Abby's 13 surgeries, 220+ nights in a hospital, numerous ER visits; owning: 4 vehicles, 4 motorcycles, 3 jetskis, 3 houses, 1 farm, loving 1 dog, traveling to over 19 states, camping a few times and learning deeply about this life.

The learning about life bit is where we find ourselves dwelling on the memories.  We've learned to cry together, hear bad news, wait, move, allow dreams to die, embrace new ones, rejoice together, work, read, make friends, build a home and rest together.  Most importantly we are still learning to pray together and trust that our heavenly Father is able to carry our burdens, wipe away our tears, provide for our needs and comfort us.  He is walking this road with us.

So many memories in what seems like a very short time.

This special day reminded us how thankful we are for the gift of a committed, loving and giving spouse!  And today as we start a brand new year, it's fun to imagine what new memories we will make together, as a family.