Happy Thanksgiving!

Lovin' on daddy...awwwww!

I love this time of year.  Thanksgiving is such a great holiday; the turkey, the pumpkin pie, the anticipation of Christmas, the 4-day weekend!!  For us, it is a reminder of that MAJOR life choice we made to move back to Minnesota 2 years ago...remember how little Lucy was then?

Jason and I were talking about what made our top things to be thankful for in 2014 list and really, the feeding tube removal tops all other things.  Even though it was incredibly painful (both physically for her and mentally for everyone else), it is such a HUGE milestone in Lucy's journey and we are thrilled with her progress.  That tube literally kept her alive for the first 18 months of her life when she could barely eat anything orally but it was a constant reminder of her physical challenges as well. 

Ice Cream and Movie night with mom (and yes, she can eat a whole DQ sundae)

She loves not having to get her dressing changed multiple times per day and to be able to be carefree about sliding down the footstool or the slide or the couch cushions.  There is an almost imperceptible difference in the way she carries herself and plays.  Most times I don't notice it, but every once in awhile, I marvel at how uninhibited she seems.

Using her dolly cradle for a bed...can't believe how tall she is getting!

We are looking forward to spending a long weekend with my family at my parent's house and hope that you all have a safe and happy holiday.

Thank you, as always for your continued love and support...never forget to be..."joyful in hope, patient in affliction and faithful in prayer" (Romans 12:12)

Healing

We have been home from the hospital with Lucy for a week now.  I for one, am feeling MUCH better than I was a week ago!  Life has returned to normal for the most part.  Jason and I are thrilled that we don't have to change leaky dressings anymore and Lucy is getting used to her new, flat tummy! She pulls up her shirt often and looks at the scar and says, "No more Tubie?!?"

She is doing great - if I hadn't witnessed the entire hospital stay, I never would have guessed how sick she was last week.  It is amazing how quickly the body can right itself when something is wrong.  I cannot help but go to Psalm 139 at this time and remember what it says in verse 14: "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."  

Here are a few things that I learned or was reminded of last week:

 - Doctors do NOT know everything.  We heard from doctor after doctor theory after theory about what might be wrong with Lucy.  When we were discharged, we were told so many times that they cannot believe her recovery and still do not know what caused her to be so sick.  It's tough to take as a patient, because we do expect doctors to know what is wrong and FIX US!!

 - Doctors have a distinct advantage over patients and their families due to sleep alone.  In the hospital, nurses typically come in every 4 hours to check vitals, lab techs come in before 6 am to get blood so docs have results before morning rounds and residents come to the room shortly after that.  Also, when Lucy was throwing up every hour, I would wake up for that!! While Lucy slept through some of the conversations, I could not!! As a parent, sleeping on a vinyl hospital couch, all of these things happen right around the time you are FINALLY drifting off to sleep.  If you try to catch a quick nap at any point during the day, or grab a shower, the doctors are magically notified and come to update you on something.  By the end of a week in the hospital, I considered Jason's white tee-shirts dressy enough to wear for the day and decided washing my hair in the sink with hospital soap was probably all the hygiene I needed to get me through...I was looking a little rough, to say the least!! :)

 - My friends and family are AH-MAZE-ING!  I am still overwhelmed with the calls, emails, notes, care packages, gift cards and prayers that people sent.  It is tough to give myself permission to take care of myself when Lucy is so sick, so these things literally get me through the day.  THANK YOU from the bottom of my heart - I love you all!

 - Without faith, I would be broken.  Jason and I need to stay positive during these situations and cannot let ourselves think worst case scenarios.  However, there was a brief moment when I wondered if I would ever get my little Lucy back or if something really bad had happened in surgery that would impact her life forever.  The first night after her surgery, before we were admitted to the hospital, I slept on the floor of her nursery and prayed my heart out to God to restore her health.  I could only sleep when I pictured a Guardian Angel standing over her crib protecting her while I slept.  It was as if God told me to rest because He was watching over her.  One night in the hospital after several throw-ups, Lucy and I sat on the couch and we prayed "Dear Jesus, No more throwing up, please. Amen."  I promise you that He gave her a long spell of relief after that sweet, sweet prayer.

 - I was reminded again of how resilient Lucy is.  What an amazing child who has the ability to charm the pants off any medical staff within a 50 foot radius, even when she can barely talk.  When she was having various procedures done, like tubes put in and taken out, I would hold her and tell her how brave she was, over and over.  Before long, she would say it with me, "mama's brave girl, mama's brave girl."  Heartbreaking, really...

Uffta - that got a little bit raw, not my intention at the beginning of this post.  Now that we are home we are enjoying winter, which came over the weekend to Minnesota - not sure I'm ready for this yet!!

Home, Sweet Home!

A picture from Monday, when she was feeling good enough to play :)

After what can only be called a miraculous recovery, Lucy is home!  She was discharged last night and the three of us could not be happier!

The doctors are still stumped as to why she was so sick and why she got so much better without too much intervention on their part (actually, she got better when they STOPPED messing with her). Her recovery really started in earnest on Sunday night, after she had an enema (sorry, honey!!) to clear things out of her intestines and had the feeding tube removed from her nose (it was looped through itself a few times and part of it was looped in her lower esophagus, so must have been very irritating to her).  She had a good night on Sunday and then very slowly started perking up on Monday and began eating somewhat normally on Tuesday.

This is Lucy's "Throw Up" board that I kept for the docs and nurses at the hospital

Today, she is a little slow and still somewhat off balance but otherwise is back to herself.  SO HAPPY!

As always, thank you for your continued interest and encouragement throughout this journey.  Your calls, emails and texts mean a TON to me and Jason and we appreciate them so much.  And a special shout out to mom and dad for coming down to stay at our house and clean and do dishes and keep me company at the hospital so Jason could go to Philly for a work trip (at least he wasn't gone the whole time this time!!)

I'll write more later about how she's doing now that she is home and fill you in on some of the details of the last week later on.

Stumping the doctors is not a good thing

So we are still at the hospital - no trick or treating for little Lucy! :(

The doctors are somewhat baffled as to the issue.  Thankfully, she has stopped throwing up so much, due to a combination of medications and a venting tube placed into her stomach.  Yesterday, it was only 2 times that were not due to other irritants (coughing fits or docs trying to put another tube down her throat).  The have placed an "NJ" tube through her nose, bypassing the stomach and sitting at the top of the small intestines.  The goal is to get food in her that will not be thrown up and get her digestive track moving again, in the hopes that any pressure, etc. left over from anesthesia and surgery will dissipate.

It is possible that having a G-tube for long masked (or created) a different problem related to her stomach emptying into her small intestines which could require a surgical repair (Gastroparesis).  So really a lot of theories but no solid diagnosis. :( The waiting is difficult, to say the least and she is still very lethargic - basically moves from the bed to my lap and back.

We will keep you posted as we know more.

Thank You for your continued prayers.  I'll leave you with a throwback photo from last Halloween :)