While Dad's Away...

March is always Jason's busiest travel month, often with back to back to back trips.  This year was no exception, so Lucy and I got to spend lots of quality time together over the past few weeks.

We went to the library, visited grandpa and grandma for 4 days, got ice cream, played at the Maple Grove "Maze" indoor playground, got some fancy cupcakes, went to the toy store, did some baking, went to the Children's Museum, took several trips to the airport to drop daddy off and pick him up again, and we played outside and watched a lot of Thomas the Train (a recent favorite!) and even got to Face Time with daddy (almost) every time we missed him! :)

Baking pumpkin bread with mama!

Creating some big bubbles at the Children's Museum

Reminding daddy that we miss him!

Uummm...a little help here?!?!

Bedtime snack with Grandpa

Ice cream...and a half of a cup of M&M's...she could be up awhile!

Lazy morning at grandpa and grandma's house!

Fancy cupcakes!

Playing a matching game with grandma

Climbing up to get to a big slide at the Maze...not sure if she's relaxed or stressed here, haha!

New sunglasses and a Thomas Toy!!

Three years since we knew...

Climbing the staircase to great things!!

Lucy:

You have many milestones that daddy and mama celebrate.  Your birthday.  Your first TEF surgery.  Your second (and this time successful!) TEF surgery.  Your shunt placement.  The day we FINALLY got to take you home from the hospital after 4 MONTHS!  But today....today is the day that makes mama the most emotional...remembering the day we knew that your life would not be typical, and that ours wouldn't be typical anymore either.  Today is the anniversary of when we chose for a second time to give you life knowing even then what a wonderful testament of grace and courage you would be to everybody.

It's true that God doesn't give special kids to special parents, he gives them to us ordinary, common people and it's YOU that makes us special.

We love you, goose!

Love daddy and mama.

A few of my favorite things

I am fortunate enough to have a toddler that enjoys many of the same things I do...even if she does put her own spin on it! :)

My morning coffee...even if I have to drink it out of a plastic teacup on Saturday mornings!

Girly things, like accessories and make-up...even if I have to share the bathroom with Lucy!

Naps...although not next to the toilet like Lucy likes to do instead of taking a bath!

An update on Lucy's TEF

We get asked a lot of Lucy can eat "normally" now.  The answer to that is still "no!"  Here's what she can eat:

 - Most cereal (Kix, Cheerios, Chex, etc.)
 - Crackers (Ritz, Saltines, Triscuits in small portions, oyster crackers, etc.)
 - Sliced cheese in small portions
 - VERY well cooked soft vegetables like carrots, green beans and peas, about 5 to 8 small pieces at a time, followed by a few swallows of liquid
 - VERY well cooked pasta rings, again about 5 to 8 at a time
 - Fruit bars, like Nutrigrain cereal bars
 - Anything that is naturally smooth (peanut butter, applesauce, yogurt with no fruit chunks, etc.)

Everything else we grind up for her in the most fabulous invention for a person with this condition...the hand-held food grinder!  We are forever in debt to my mom for getting us one of these - we use it multiple times a day and never leave home for a trip to a restaurant or weekend away with out!  We can't make a quick food stop at a fast food restaurant because most don't have anything that we can grind up for her to eat.  We end up going to places like Panera, Potbelly or Culvers if we are on the road and need to make a quick stop - because those places all have soup on the menu!!  Most of her main courses are ground up soups, pasta with sauce and veggies or whatever we are eating mixed with a liquid or sauce to make it smoother for her.

Our best friend...the handheld food grinder!

We try to balance letting her eat what she wants if we are eating it, with saying "no" to things we know she won't be able to handle.  Often we give her "tiny bites" of whatever we are eating, like the crust of a pizza slice, or a tiny piece of fish (think very tiny - like a mere crumb).

Lucy's esophagus is shaped like an hourglass, but the inside of it has a "shelf" of scar tissue.  Her entire esophagus had to be connected together when she was born, so there will always be a part of it that is 100% scar tissue and will never be as stretchy as the rest of her esophagus.  As she gets older and understand more (and has better self-control), she will be able to eat more "normally."  However some foods will always be hard for her to eat, like meat for example.

Here is an example of what Lucy's anatomy looked like when she was born.

We are so thankful that she is doing as well as she is.  We are also so thankful for the doctors and nurses that God has put in her life.  We haven't always liked everything about every one of them, but we are confident that they tried to make the best decisions for little miss Lucy and for that we are grateful.  I follow many stories of children born with VACTERL/TEF and there are some tragic endings to those lives and many, many children with feeding tubes, respiratory issues and many, many dilatations.

Despite everything Lucy goes through, she is still able to enjoy life...and let me tell you...this girl LOVES to laugh! :)

Fake sleeping at her first live theater event - we saw Goodnight Moon - what fun!

Truthfully, not that helpful to have an extra cart pushed by Lucy in the grocery store!

Esophagus Dilatation #21

Post-surgery recovery - still pretty out of it

 Thursday's endoscopy and dilatation went great!

Although the doctor was running about an hour late (Ugh - since we have to be there 1 1/2 hours before her procedure - that's a 2 1/2 hour wait before we even get her to the OR!), the day went pretty well.  They were able to dilate her esophagus to about a 15 (so around 5mm, I guess), which is the widest it has EVER been.  Prior to the procedure, we really didn't see any new eating issues so we are going to stretch them out (no pun intended) even further than our current every 3 months to 4 or 4 1/2 months - isn't that great?!?!

She did throw up a few times right before and after the procedure, but after a 3 hour nap when we got home, the anesthesia seemed to wear off to the point she was feeling good (and asking for dill pickles and chocolate chip cookies to eat!)  It's possible that she has developed a slight reaction to anesthesia now or that the stuff they use at the U is slightly different than at Children's, so I'll have to do some medical records research to see if I can find out what might be different.

I mentioned in my last blog that I was anxious about this procedure, so I was so, so happy to wake up on Friday and have Lucy be back to her normal happy (sometimes hyper!) self.  What an amazing, strong little girl...we just love her to pieces!

Recovering with a little Tea Party at home

"We don't need to see Lucy until she is...4"!?!?!?

Having breakfast with Lucy and her new doll...named "Dolly"

Just before Christmas, Lucy had a cardiologist visit at Children's where she had several tests and ultrasounds of her heart.  She did not like it - I can't blame her!  An unfortunate side effect from all of her hospital stays last fall was some serious doctor/clinic/hospital fear, so we are working through that with her.  Again - it's totally understandable how she could feel that way!

In any case, the cardiologist said that although she has a small VSD (hole in her heart), there is a very small chance (like less than 1%) that it would ever cause any issues for her.  Her veins and arteries appear to be working correctly and we don't have to go back until she is 4...wait, what?  I cannot imagine a day when Lucy is 4 years old!

I think I mentioned on here that her pediatrician was leaving Children's Hospitals and Clinics at the end of 2014?  Last week was our first visit to a new doctor for Lucy and we chose one close to home that is in the same system as the University Hospital where her GI and surgeon practice.  It was wonderful to have a 5 minute drive vs. 25 minute drive and to have free parking for the quick 20 minute visit!  So, we are hopeful that this will work out for us all.

This coming Thursday is her next dilatation.  If you feel like it's been awhile - it has!  Almost 3 months since her last one and she is still eating with very few issues!  I am VERY anxious about this because of the terrible outcomes from her last 2 procedures.  I know that the feeding tube was a huge factor in those situations, but nonetheless, it will be her first time having a "normal" dilatation with our new docs and I am already ready for it to be over!  As always, your thoughts and prayers are greatly appreciated in the days leading up to the procedure.

I'll leave you with some fun winter pictures of Lucy - so nice to have milder temperatures in MN!

Helping mom finish our snowman

Discovering how GOOD snow is to eat! :)

Happy New Year!

2014 was definitely an incredible year for Lucy.  While she had some ups and downs from a health perspective - I don't think anyone would have imagined that she would have to be hospitalized not once, but twice - there were more ups than downs.  At the end of it all, she has recovered well and has no more feeding tube - what an accomplishment!!

Cousins!

Who needs presents when you have a box?

When I reflect back to the beginning of 2014, we were just a few months removed from the feeding pump and still pretty new to bolus feedings.  Lucy was eating very little variety in her foods - mostly baby foods and small amounts of "real" food at a time.

Here are a few highlights that Lucy wants to share with you all:

 - I got to go to Virginia to visit daddy's family again - and me and mom got stuck in Atlanta overnight!!  Mom seemed stressed but I don't know why - it was fun!!
 - I started brushing my teeth all by myself
 - I got to go on an Easter Egg hunt outside...in the snow!!
 - I got my first car (it's all plastic and doesn't have an engine, but aren't most cars all plastic these days???)
 - Grandma and Grandpa got to take care of me overnight while mom and dad celebrated a night away for their anniversary
 - I got to be a flower girl and meet cousins Emily, Matthew, Shelby and Brody for the first time
 - I got to put my feet in the Atlantic Ocean
 - I turned 2 and got to go to the Minnesota Zoo with all my cousins
 - I got to go to a pumpkin patch and ride on a hay ride
 - I got my feeding tube out!!
 - I went sledding for the first time
 - I visited Bentleyville for the first time and saw a TON of cool Christmas lights
 - I had around 20 doctor's visits (that's only half of what I had last year!) but I had to spend 10 nights in the hospital this fall :(

Despite the rough fall, I think 2014 was Lucy's best year ever.  What fun it is to be a 2 year old!

Lucy at Christmas last year - she is getting so big!