A year ago today...we took Lucy home from the hospital!!

Outfitted for fall!

Today, Lucy is 16 months old and she has been home from the hospital for a year!

Wow, how much has she grown and changed in the past year!!

On the not so great side, when we took her home last year, I didn't in my wildest dreams think that she would still have a feeding tube, which is still just such a bummer for us.  The progress we are able to achieve with her esophagus size seems so slow that at times I can't even imagine a day when she will eat a sandwich (or even an M&M, for that matter!)  It's hard for Jason and I and heartbreaking at times, especially days like tomorrow when she has to go in for ANOTHER esophagus dilatation (#10 this time).

On the flip side, I also couldn't imagine how much I could love her.  She is such a fun, incredibly strong little girl and I love, love, love being her mama!  Her development has been so stellar that at times we forget that she has hydrocephalus.  Her tastes also continue to change and develop and it's been a fun challenge to keep up with pureed foods that she likes, are full of good calories and are a texture she can handle.  True to her mama's tastes, her most recent favorite is pumpkin bread!  She can handle small bites of it and loves to eat it along with me.

Bringing Lucy home last year.

From an eating perspective, we have hit a bit of a plateau.  She continues to eat and drink between 300 and 400 calories orally and get the remaining 400 to 500 calories through her feeding tube.  She has been true to her toddler individuality lately and has been a bit of a picky eater.  If we can find something she likes, she'll eat great.  If it's blah or not a taste she is a huge fan of, she'll pass and every spoonful is a struggle for us.  However, she'll eat baby crunchies (like puff Cheetos) all day long!  She has also been drinking a lot more lately, usually at least 6 ounces per day and sometimes up to 10 ounces.  It wasn't that long ago that she would barely drink 2 or 3 ounces a day, so this is great progress for her.

We have switched from using her Feeding Pump to feed to her to using a bolus to feed her (think over-sized syringe that can hold up to 2 ounces of liquid).  This drastically cuts down on the time she has to sit still while we feed her, as we can bolus 2 ounces of liquid into her feeding tube at once.  Basically, we take the bolus syringe and attach it to her connector tube and let gravity push her Pediasure formula into her tummy over the course of a few minutes.  We do this twice at each meal and it takes minutes instead of a half hour at a time, like her pump took.  It's wonderful to be able to speed up the feeding process and not have to use her pump and bags and an IV pole all of the time.

Checking out a restaurant menu

Whenever we go out to eat (which is rare!), we try to order off of the menu for Lucy.  She usually ends up with soup, mashed potatoes or yogurt.  Not much in the way of pureed foods on most menus!

We will have another swallow study for her in a few weeks, to see if she aspirates at all when she eats/drinks and to take another look at what happens in her esophagus when she swallows.  We also have cardiology follow-up scheduled and need to make eye and ear appointments too.  Ugh!  Our summer reprieve from doctors has ended for awhile, I guess.

Chilling for the briefest of moments in the pillow fort we made

It is impossible to make sense of everything that this life brings to us and as we try to make sense of it, we strive to remember God's faithfulness and blessings, above all else.  The following are lyrics from Laura Story's song, "Blessings."  These words are beautiful, comforting and a really good reminder that blessings often come in disguise.

"Blessings"

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise...

First Airplane Ride!

Jason, Lucy and I went to Washington DC over the weekend to celebrate Jason's cousin's (Billie Jo)  wedding.  Congratulations, Billie and Dale!  We had a blast!! Even though the government shutdown altered our plans a bit, we still found lots to see and got to spend time with great friends and family.

Lucy was an awesome traveler!  She did great on both flights (thankfully we had non-stop flights) and although her schedule was very different from when we are home, she slept and ate pretty well overall.  What a blessing to have such an easy-going child to travel with.   We went to Mount Vernon (the former home of George Washington), saw the Baltimore aquarium - it is HUGE and has some of the coolest exhibits, visited lots of family and friends, went to the National Geographic museum, went swimming at the hotel and Lucy got to hang out with Grandma Jeanette while Jason and I went to Billie's wedding.

She is a very social baby and loves to wave to people and smile at them and even play peek-a-boo with them if they look at her long enough.  She loves being around other people, especially kids, and got to meet 3 new dogs on Saturday!!  That was definitely a highlight for her. :)

Here are a few shots from our trip:

Lucy visiting with George Washington and his family.

Posing on the front lawn of Mount Vernon,

Catching a ride with dad at the Baltimore Aquarium.

Cheering for the dolphin show.

Posing in front of our hotel mirror after swimming in the pool - she loved looking at herself in that mirror!

Oh, and last weekend, we celebrated with the local runners at the Twin Cities marathon weekend.  Lucy ran the toddler trot (well, she walked a few steps and then sat down - mommy had to carry her across the finish line!) and we went to the marathon finish line to cheer on all the runners.

Sporting her runner's bib and medal

Matching mom in our Medtronic shirts!

Esophagus Dilatation #9

Swinging with daddy!

Lucy has esophagus dilatation #9 today.  Jason and I can't believe that she has been in to have 9 of these procedures already.  This time went well; we heard pretty much the same story - her esophagus has grown together some, but not to the extent that it was growing back together in the beginning.  She was able to handle food very well all the way up until her dilatation so we definitely feel like we are making progress - it is just so much slower than we had hoped initially. 

She did great today, as always.  The nurses love her (and they are all getting to know her well!) She took a nice long nap when we got home, drank 7 ounces of chocolate milk when she woke up (4 ounces in a DAY is a lot for her to drink typically!), and enjoyed a laid-back evening walk and trip to the park.

As we have mentioned before, she loves, loves, loves being outside and we use it as a calming mechanism often if she is cranky before nap, meal or bed time - I'm not sure what we are going to do when it is 0 degrees outside! 

We enrolled her in a local early childhood education class through our schools district called 1, 2 Buckle My Shoe.  So, on Thursday nights, we hang out with 8 - 12 other 1 and 2 year olds (and their parents).  Since Lucy is home with us or the nanny pretty much all of the time, we feel like it's good for her to meet other kids and adults and so far she seems to like it.  At this age, kids don't really play together too much, but more next to each other and it's pretty cute to watch their little social skills growing and developing.  As a parent, it's hard NOT to compare your child to others in their age group to see if they are on track.  We often get comments about how little she is for her age (she seems huge to me - 21 lbs at the doctor today!!), but I think she is tracking pretty well with her age group from a development perspective.  I can definitely say without a doubt that she is the best jumper in the group and gets some serious air on the child-sized trampoline! :)  Her new Special Education teacher has a daughter a month older than Lucy and they come to class also, so it's a great opportunity for her teacher to see Lucy in a "real" environment.

Playing with some vintage "Little People" - they used to be much smaller than they are now.

Well, I didn't intend to write a long blog when I started this, but it has turned into a rather long entry, so I will sign off for now.  Always remembering Romans 12:12 that we will be "...Be joyful in hope, patient in affliction, faithful in prayer."

More Lucy/Mommy time...Lucy's perspective

Spending Saturday morning in my PJs...with my dollies

Jason is in Budapest for a week and a half, so Lucy and I get to spend lots of quality time together.  Lucy always sends daddy an email with a picture at the end of the day so he knows what a good girl she is being while he is away.  Here are some excerpts (written from Lucy's perspective):

Loving my cousin, Preston!!

Running around outside...I LOVE being outside and cry when we have to go back in the house.

Smiling at mommy after I made a mess in my room (I personally love the duck and teddy bear hanging out of the crib!!)

Not being such a good girl...seeing if my pacifier would float. :(

Proof that I DO slow down every once in a while...mommy tells me that she needs some down time!

Forward Progress

This week has marked two very exciting milestones for Lucy's eating development and we couldn't be more proud of her!!

First off, we have ended overnight feedings!  Since she was born, basically, Lucy has been receiving formula or PediaSure via her feeding pump for several hours overnight.  We put her to bed with a connector tube attached to her button and then after she fell asleep, we would attach her pump on a very slow drip setting.  We started at about 12 ounces over 6 hours and have gradually been working down to 10 ounces, then 8 and most recently 6 ounces over 4 hours.

She is now at the point that she consistently only needs about 4 ounces of PediaSure to make up for her daily calorie allotment.  So, we are still feeding her after she goes to bed, but now we are giving it to her from 10 - 11 pm and then taking out her connector tube and going to bed ourselves!  For us, this means no more waking up to a beeping feeding pump at 4:30 in the morning and stumbling to Lucy's room, hoping that she doesn't wake up before we can turn it off!  For Lucy, this is one step closer to a "normal" eating pattern!!

Second, tonight Lucy ate exactly the same food as us for dinner.  She is still eating pretty much strictly pureed foods and foods that dissolve quickly but tonight we had Chicken Wild Rice Soup which we pureed for her and a cracker - she was happy as a clam to eat what we were eating and it was such a treat for us to not have to do any special food preparations for her.

Ready for bed - squeaky clean after bath time and sporting some fancy pajama pants

Thank You for your continued interest, support and prayers!  We are excited to be able to share her improvements with you and definitely feel like we are moving in the right direction.

Esophagus Dilatation #8

Posing in a dress that my mom saved from when I was little!

This week marked Lucy's eighth esophagus dilatation and a year since her original surgery to connect her esophagus to her stomach.  Remembering those first months when she had to have a suction tube just to manage her own saliva, wow has she come a long way!!  September of last year was REALLY rough for Lucy - she had a chest tube in for most of the month and was on a ventilator for several weeks of it as well.  What a difference a year makes!  Jason and I were just laughing at her toddling around the house, bare naked after her bath, holding onto a Big Bird book and without a care in the world.

Caught in a rare moment of downtime - loving on her Pillow Pet

The last dilatation went well.  The doctors were able to start at a size 8, which is where they ended up last time, and they progressed to a 10, through all three stages of it (each balloon has 3 different settings).  There was very little growing together like we had seen the past two times and it was an overall very encouraging procedure.  Also, she has been eating great since the procedure - almost 300 calories by mouth yesterday!  That is over 1/3 of her daily allotment!!  Have I told you recently what a trooper she is?

Here are some pics of Lucy's current favorite game - hide things under the footstool!

Just when we think the toys are all picked up...

...we move the footstool and find Lucy's treasure stash!

A great end to the summer!!

 As with everyone else in Minnesota, we tried to pack in as much fun as possible over the Labor Day weekend as it signifies the unofficial end of summer up here!  We spent Saturday at the Minnesota State Fair.  It was a sort of impromptu trip for us...we had talked about going to the fair but weren't sure how Lucy would like it - plus it's been so HOT here and Saturday was no exception.  However, true to her sweet personality, as is typical of Lucy, she did great!

She spent most of the time in her stroller and got to sample the chocolate malts from the dairy building and try strawberry milk and see loads of animals.  She especially loved the dogs that she got to pet and many of the owners commented on how gentle she was while petting them. She spent most of the time in her stroller, but did need to be carried for a bit - thank goodness Grandma and Grandpa were with so that we could alternate carrying her.  She was feeling like every one of her 20 pounds in the hot, sticky weather!!

Looking at a cow

NOT enjoying her pig ear hat, with Grandpa!

Just couldn't keep her eyes open to take in any more fair sites.

On Sunday, we took a quick overnight trip down to Wabasha and spent the night at a friend's house on the Mississippi.  Lucy loved, loved exploring their yard and big, open house - she toddled around all over and explored every corner she could get to.  She was definitely ready for a nap every day!!

Had to take this picture - it was a display  at the State Fair based on a Dr. Seuss ABC book that we have..it's a Zizzer Zazzer Zuzz, as you can plainly see!

Her appetite and eating have been great over the past few weeks and we will go in for her next esophagus dilatation on Wednesday of this week.  We are very eager to see the size of her esophagus this time and are definitely hoping for better news than the last two procedures.  We appreciate your prayers and will let you all know how it goes for Lucy this week.