First weekend of Summer!

Banging on the drum at music class

Here in Minnesota, Memorial Day weekend definitely kicks off the summer season...school is almost done for the year, cabins are open and people are out on the lake as much as possible.

Lucy's ECFE music class that we've been in all year finished last week - it's amazing how much the kids grew from September to May! We've been spending weeknights outside as much as possible and we spent most of the weekend of north, at my parents' house on the lake.  Lucy got a fishing pole from grandma and grandpa for an early birthday present and caught her first fish!!  She also invited her first friend to the park - our 4 year old neighbor boy - so sweet! :)

Racing up the slides!!

Swinging on the big girl swing!!  

On Friday, we are going to Colorado to see some friends and go to a NICU reunion!! I can't wait to see some of the kiddos and moms that we were in the hospital with and be able to take Lucy to some of our favorite Colorado spots!!  She has made such incredible progress in the past 2 1/2 years since we took her home from the hospital.  What an amazing little girl! Lucy is mainly excited for the hotel pool and the airplane ride! :)

Her next dilatation is scheduled for early June, almost 5 months after her last one!!  It will be very interesting to see how open her esophagus as stayed.  Her eating is going well.  I feel like just this past week I've noticed a few more "stuckies" than normal - but it's possible she's just been eating fast...lots of outside play time tends to increase the appetite, right?

Driving grandpa's boat!

Patiently waiting for a fish...

Got one!!

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!

2nd Opinion

Sporting a birthday crown she decorated at ECFE's 40th birthday party!

Wow!  This week we celebrated Lucy's 2-year anniversary of being home from the hospital!  What a difference 2 years makes!  She has been feeling great and has tons of energy to use up running around the house, the yard, the neighbors yard, etc.!

Taking Lucy home 2 years ago!!

Cake and markers - not enough hands!!

 We also had our 2nd opinion visit to talk about removing Lucy's feeding tube.  So glad we pursued finding a new doctor!  Her previous GI doctors were a referral from our pediatrician at Children's Hospital, but they are not actually a part of Children's. However, the surgical team IS a part of Children's.  It is pretty clear that for a patient like Lucy, we need serious coordination between the GI doctors and the the surgeons which we NEVER had before.  As Lucy's advocates, we definitely could have (and probably should have) pushed harder to get the two groups to coordinate, but until the disaster that was her feeding tube removal, things were OK so we didn't feel a strong need.  Now that we understand what can happen, the right decision for us, was to find someplace that has tighter coordination.

This week, we saw a GI doctor at the University of Minnesota and while we was talking to us, he said that he thought a surgeon was rounding in that clinic today, so we invited the surgeon in to have a look and said they would talk about Lucy's case at their next joint meeting!!!  What a change from the previous GI doctor, who told us to "call the surgeon because there is nothing else I can do."  UGH!  Overall, the visit went great and they had some long-term options for us to consider if on-going dilatations do not seem to be working for Lucy.  So, we are having her next endoscopy performed at the U of M this week with possible G-tube removal and site CLOSURE if the surgeon thinks it is possible to do as outpatient.  Oh, and do you remember back when Lucy was in Denver and we considered transferring her to MN?  This surgeon is the same one that would have performed her original surgery if we had actually been able to make that transfer happen, so I was already familiar with him and his work (arguably, one of the best in the country and well-known in this field).  Feeling God's guiding hand and infinite wisdom in this 2nd opinion!!

Prayers are welcome and we seek to be patient and understand what's next in this journey.  I am hopeful that in the next post I will be able to share with you that Lucy's feeding tube is OUT FOR GOOD!  But it not, I am confident that this new team will help us get there when the time is right.

My view when taking Lucy for a walk!