Wednesday, March 30, 2011

Happy Birthday Josiah!

Untitled from patty hull on Vimeo.

Josiah you turn 5 years old today and you are very excited about it!  For some time now you have been anxious to be 5.  The other day you asked me if you would burst out of your clothes on your birthday!  You figured that you would be growing a lot that day.

You sure have grown into a wonderful 5 year old boy!  We marvel at you daily.  Wondering how you come up with some of the funny things you say.  Enjoying hearing you talk to us, telling us things that are important to you.  We love watching you play and wrestle with Levi, tenderly helping him when he needs it.  You are trying very hard to 'play' with Abby lately too.  I think you are learning to understand her more and hoping to engage her in your world of play.  It's very sweet to see you hold her hands or bring her toys.  It makes me smile to see that you have placed her baby doll in her bed, long after we've turned out the lights.

You are such a joy!  Your giggle is so contagious and your smile melts our hearts.

We love you to the moon and back... 1000 times!

Mommy and Daddy

ps. music in video requested by Josiah: especially Yesu Azali Awa by Selah!

Sunday, March 27, 2011

Recovery continued

Abby and I are home alone this morning as our boys have gone to church.  It's nice to be just the girls for a while.

She is recovering very well and each day seems to be more comfortable for her.  Coughing has become a problem and she seems to have a lot of chest congestion.  The coughing hurts I'm sure so she is hesitant to do a big cough to clear her lungs.  Today each breath seems to bring on a very weak cough.  I can tell it's tiring her out.

I'm trying to change her position often to help her cough better and move the secretions.  They sound pretty thick.  Praying it doesn't develop into anything.

Her incisions look wonderful!

The best part of all is that her fingers are healing!  She isn't biting like she used to which is a huge, huge praise.

Feedings are still going well and she is almost to a target continuous rate during the day.  We'll probably stay on continuous until she is fully healed and then gradually introduce small bolus feeds again.  The thought of not having to drag the feeding pump everywhere we go really excites us!!  Carrying Abby, minus her tether, will be so much easier.  Hooray for improvements!

Thursday, March 24, 2011

Day 4

Last day on the 6th floor!

Abby had a wonderful night and slept straight through after getting some Tylenol with codeine.  That stuff rocks!

Her feedings are going well.  We very slowly increasing her rate and she is doing great with that plan.  Eventually we want to get back to all bolus feeds during the day, but it's been a few years since we have done that and feel a little apprehensive about pushing things too fast.  One day at a time.

Her IV is out and we are ready to go... just waiting on discharge papers!

Wednesday, March 23, 2011

Day 3

Abby had a mostly restful night. Yesterday she had a few restless hours and was hurting and we couldn't get her comfortable. We finally figured out she wanted to sit in her stroller instead of the bed. Once she got settled and medicated she slept there for hours!
Today she seems more herself. Moving her is still painful and she's trying to cough up some congestion which is also uncomfortable for her. But she's really doing great overall!
Today we start feedings. So far she has tolerated small boluses of Pedialyte. If we can get her up to full feeds she can come off the IV fluids and go home!
Sent from my iPhone

Tuesday, March 22, 2011

Day 2

Abby had a pretty good night.  She woke up a few times with pain and stayed restless for a few hours, but the IV meds are working their magic.  It scares her when she tries to cough and is caught off guard when it hurts.  Poor baby, I wish we could explain it to her!

Surgery made their rounds this morning nice and early (5:45 am)!  They thought she looked good and said we could clamp off her g-tube drain and vent her periodically instead.  The plan is to start feeds back slowly tomorrow and see how she does.  We are giving 2 of her seizure meds through the tube and she's keeping quite a bit of residual in her stomach, so I'm glad we aren't in a hurry to push feeds.

It's been a good day so far.  She was agitated for a few hours this morning after moving her around, changing her diaper and getting her cleaned up a little.  She came back from surgery with a tan 'beard' residue left on her face from being intubated.  It took a little scrubbing to get that off.

Another praise:  no seizures!  They had some trouble getting her VNS turned back on to her original settings and we were a little concerned that might cause problems for her during the night, but she has done great.  I found myself really praying during the night when she was agitated that she wouldn't go into one.  That would hurt!

The staff here has been wonderful and very quick to respond to her discomfort.  So far we have loved all of her nurses and they are taking great care of our girl.

Thanks for all the notes, emails, messages and calls of encouragement and celebration!  It's always nice to feel a connection with friends and family during hospital stays.  We love you all!

Hope to be home tomorrow night if all goes well with feedings tomorrow!

Monday, March 21, 2011


Praise the Lord!  Surgery is done and all is well in room 691.

The surgeon was doubtful that he would be able to perform the Fundo laparoscopically and warned us that some kids aren't able to have the procedure completed because of scar tissue complications.  He did have to 'cut down' quite a bit of adhesions and the procedure took about an hour longer than expected, but it's done!

He said her previous wrap (Fundo or 'stomach wrap') was completely undone which was the reason she was having so much discomfort and pain with feedings.

After 2 hours of praying and waiting he came back with such wonderful news, we almost danced!  No complications with bleeding or anything else.  We also learned that they do more of these procedures here at this Children's hospital than anywhere else in the country!  We came to the right place.

Abby is resting peacefully now and will be getting IV fluids and pain meds through tomorrow.  Feedings won't start back until some time tomorrow or the next day, depending on her recovery.  And hopefully now they will be pain free for her!

We are breathing a huge sigh of relief today!

Thank you for all of the loving and compassionate prayers lifted up!  We felt every one.  Abby was calm before the procedure and peace is filling our room as I type.  The Lord is good.  And we are so thankful!

Waiting for surgery

No fever this morning! (taken with hipstamatic ... magic of iphone)

Sunday, March 20, 2011

Countdown to relief

 Flash back...

Abby after her open Nissen Fundo procedure June 2004

Tomorrow is the big day.  Abby's surgery is scheduled for 9 am and we need to be there for pre-op by 7 am.  The plan is to attempt a laparoscopic Nissen Fundoplication.  Due to Abby's multiple, previous, abdominal surgeries (6) there is a possibility that the scar tissue present will prevent this from happening.  The doctor will then have to revert to an open procedure which will make recovery much harder for Abby.  

An open procedure would mean he would make one long incision down her abdomen as opposed to several tiny incisions.  She had the open Nissen at age 9 months and it helped her tremendously.  She was failure to thrive before the surgery.  This is also when she got her G-tube.

This weekend our family has had a cold, and Abby has been sick.  She's been running a fever (100.6-101.4) since Friday night and has had over 16 seizures.  We are praying her fever will clear before tomorrow morning.  Although we recognize once again that Abby is in the Lord's hands... we have NO control over the situation.  We know He has heard our requests.

Today we are home, preparing for the next several days and trying to rest.  The boys are a little under the weather and fussy, but nothing too terrible.

Praying earnestly that tomorrow will bring comfort and relief to our sweet heart!

Thank you to all who are praying!!  We love you all.

The following video explains a little about this surgery:

Oatmeal feast

21 month old Levi eating breakfast.

Untitled from patty hull on Vimeo.

Friday, March 18, 2011

A Promise

"Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light."

-Matthew 11:28-30

Tuesday, March 15, 2011

Trust and rest

I've hesitated posting much about Abby lately for many reasons, but the Lord has been teaching me some things I think I should share.  It's hard to describe how things have been simply because it changes from day to day.  Depending on her comfort, or lack thereof, and the state of my heart in the midst of difficult days I often lose the words to say.

I think I have learned to compartmentalize.  To place certain hurtful or difficult things into neat little places in my brain where I can retrieve them if asked, separating my emotions from said retrievals.

Maybe it was a skill I learned while working as a nurse.  Taking care of real women and real babies, who often experience real problems during labor and delivery.  Removing my fear and emotions during a stressful situation in order to think clearly and care for that person appropriately.  Or maybe it's just my way of coping with memories that hurt, but still have to be dealt with because their effects still linger in my sweet girl.

There are so many longings I have for her.  Longings to see her free from struggle, free from pain and discomfort.  I find myself striving to fulfill these longings in any way I can-- worrying and fretting seem to help.  Stifling tears and plowing ahead also tend to keep me going.  But then the occasional day arrives when I find myself exhausted and tearful, letting my mind wander to those hidden places I'd rather forget.  Fearful of the future full of dark unknowns.

My faithful Father finds me in those moments.  He leads me to a new place, mostly unfamiliar.  A place of rest and trust.

We are doing a Beth Moore women's Bible study at church and my heart is deep in search of Him!  I'm so thankful for the Lord's ways of guiding me back to His word.

Isaiah 30:15

"This is what the Sovereign Lord, the Holy One of Israel, says: 'In repentance and rest is your salvation, in quietness and trust is your strength'..."

Instead of striving to fix Abby's problems and struggles (which include my own), many of which no one sees but me and my heavenly Father, I'm learning to find rest in Him.  It brings a season of trust in His love for her-- and for me.

Isaiah 30:18

"Yet the Lord longs to be gracious to you; He rises to show compassion.  For the Lord is a God of justice.  Blessed are all who wait for Him!"

Waiting... not my strong-suit.  Learning to be quiet before Him... also not my first choice.  Trust... definitely something He is working on, in me.

With Abby's 14th surgery looming ahead, I'm both anxious and full of peace-- if that's really possible.  Anxious knowing the risks involved, desperate for a sure solution to her discomfort.  At peace because we have given her over to the Lord countless times before.  Regardless of the outcome, and this is hard to say, He is faithful to her.  He is faithful to me.

My prayer for this year has been to have new eyes to see what my heavenly Father sees.  Eyes to see beyond what I'm looking at today.  I want to gain His vision.  I recognize how shortsighted I am-- blind really.

Wednesday, March 9, 2011

19 months

(no hair cut yet)

Our littlest munchkin just keep growing and changing every day.  He is really trying to talk more these days and makes a solid effort to repeat us.  Most of the time his words sound about the same, but some are becoming clearer.  He still signs and loves to watch our happy response to his attempts at communication!

New words:  bread, no, Grandma "Gem," Papa, shoes, socks, book, ouch and oh no.  He loves to announce that he is stuck, which happens frequently thanks to his adventurous spirit.  He gets stuck on counters, stuck climbing Abby's potty chair, stuck in his high chair (which he can climb into and out of now), stuck under chairs and stuck upside down.

(singing and playing the piano)

He makes us laugh so much!  What a joy to have this little munchkin with us, shining joy into some rather dark and sad days.  This past weekend we spent time with Papa and Grandma.  It was so good to see Papa smile and play with Levi.  They are buddies.

Levi also likes to tell me that he needs a Dye dye (diaper), as he pats his pants in the front.  Then he walks funny to demonstrate that he's uncomfortable.  When I ask him if he needs a diaper change he vigorously shakes his head NO and runs away!  So funny!

And no, we are not potty training yet!!  (can you tell I'm dragging my feet)