Merry Christmas!

From our family....to yours, we pray that you are all enjoying this wonderful Christmas season.

Probably the most popular gift this Christmas - a drum with real wooden drum sticks!!

Isaiah 9:6 For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. 

Loving the Holiday season!

We have had a relatively calm December.  Jason had a few work trips, and Lucy had just two appointments scheduled (eye doc - see last blog and cardiologist - scheduled for this week) .  Overall, we've been able to enjoy the weeks leading to Christmas and do some fun Holiday things.

Lucy likes to watch me do my makeup in the morning - look at this pose I captured of her checking herself out - so cute!!

Lucy's been a great helper decorating cookies (she is very good at adding sprinkles!), she got to meet Santa and see the elves help Santa get ready for Christmas at the Macy's 8th floor display in Minneapolis.  We went to Bentleyville in Duluth to see all the lights and she has even been leaving the presents alone!  In the midst of it all, we moved her to a big girl bed - no more crib for this toddler!!  Every once in awhile, we find her wandering around the house in the morning, but usually she stays in bed until we come to get her!

Getting settled in her bed!

 We hope you are also enjoy the holiday season and looking forward to 2015!!

Snowmen with no noses

Holding baby Dawson for the first time!!

Decorating for Christmas is tough with a toddler in the house.  Anything within reach of little miss Lucy seems to end up going down a slide, getting it's teeth brushed, eating dinner with us, smuggled in the bath or her bed or missing a nose (or a head!) eventually...like this joyful crew here:

They used to have carrot noses :)

Lucy' still doing great and her surgical site is healing nicely.  We had an eye doctor appointment with her this week and got a great report.  You may remember that kids with hydrocephalus often have sight problems because of pressure in their brains that presses on the optic nerve, so we have annual eye appointments to check for any changes.  She is not a fan of eye appointments, so thankfully it's only once a year.

We have been loving some warmer weather here in Minnesota and discovered that Lucy is a huge fan of sledding.  She has a giant grin plastered on her face basically the whole time she riding in it.  We don't let her go down hills by herself yet, but being towed around by someone is great fun to her!!

This is an indication of how cold it's been in Minnesota - mom and dad's lake is totally frozen over already!

We are trying to enjoy the season by planning some fun, seasonal things, balanced with having downtime to enjoy cookies, hot cocoa, Christmas trees, holiday movies and wrapping presents at home.  We hope you are able to do the same!

Cannot resist making a mess!

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 :)