That & That & Everything In Between!

This is another one of those posts that has a little bit of everything in there.  A little bit of early Spring fun, 1st haircuts, lily's 2nd birthday, the American Heart Association Heart Walk and some other random happenings...here goes...

I finally decided after 3 1/2 years that it was probably time to give Ellie her first haircut.  We've never cut her hair before, not even a little trim and she was absolutely against having anyone cut her hair.  We had talked about this for about a week before we actually had her appt and most nights she would tell me (again and again) that she did not want her hair cut.  The day finally came and we had scheduled appointments for both of the girls since Lily's hair was looking a little "mullet-ish" in the back.  The day of the appointment came and I was figuring I would have to hold Ellie down in the chair and Lily would be jumping at the chance to sit up there and have someone cut her hair!  Much to my surprise it was the exact opposite.  Lily sat in the chair with a sour look on her face and Ellie just thought she was a princess up there having her hair done.  She even wanted it curled!!

We have been waiting very patiently for spring to get here and Mother Nature, more than once, has teased us.  We had some absolutely beautiful days in March and we took every opportunity to get outside when we could.  I got the chance to take the girls down to the flood wall to let Ellie ride her bike and take Lily for a ride in the stroller.  My mom got the chance to take the girls down to the creek and let them throw rocks in and let them wade in it a little.  I have a feeling we will be spending plenty of days down by the creek this summer now that the girls have had a couple chances to play down there.  The girls absolutely love the water so they have been dying to get out the water table ever since they spied in in the garage.  After much anticipation while I was cleaning it up, we finally got it filled up and the girls had a blast...and they were soaked by the end.  Nevertheless, they had a great time and have been asking to get it out again lately.  Thankfully they haven't spied the pool yet!!

On April 16th, our family attended the Loras College Dance Marathon for the 2nd year.  This is such a neat experience.  Each miracle child has a poster hanging on the wall showing pictures from their hospitalization and what they look like now.  Each child gets to "request" a song to dance to during the "Family Hour."  Of course Lily danced to the Hokey Pokey!!  They have snacks, crafts, toys, video games, etc for all of the Miracle Families to enjoy.  This year the girls were actually brave enough to go up on the stage and dance with some of the Loras College students.  For as shy as Ellie is, I was absolutely shocked that she got up and danced in front of people.  I wish we could have stayed later to see more of the Dance Marathon but the meltdowns started and we split!!  This year, Loras College Dance Marathon raised over $129,000 for the Children's Miracle Network and the University of Iowa Hospitals.  For those of you who have stayed in Iowa City for a while, the tokens that you receive for the vending machines are funded by this Dance Marathon.  We are forever grateful for all the work the college students do to fundraise for such a great cause!

On April 22nd, Lily turned 2 years old...where the heck have the years gone?  It is so hard to believe that two years ago today I was sitting in a hospital room with her during her recovery from her 1st and 2nd open heart surgery.  She has grown to become a fiesty, EXTREMELY independent, cuddly little girl!  I can't wait to see what the future holds for this amazing little girl!  I am sure she will do great things!

We celebrated her birthday with just family this year.  Everyone came over for pizza, breadsticks and cupcakes.  It was nice enough that we could spend some time outside and the kids got to ride the bikes.  Lily loved being the center of attention and she was ready to blow out her candles. And no birthday is complete without the ritual smashing of the face into the cake by Uncle Jake!!  Since her birthday she has been singing "Happy Birthday" on a regular basis!

This past weekend was the Dubuque County Heart Walk!!  Team Lily made a strong showing with more than 35 people there to support us and walk with us!  This year and last year we sold t-shirts to help raise funds and for the second year in a row sold over 100 t-shirts.  We cannot thank our family, friends, co-workers and even my students for all the support they show us each year at the Heart Walk.

All week long I was looking at the weather and kept seeing that there was a chance of rain, however, it was absolutely beautiful.  The sun was shining, the temperature was just right and the wind wasn't too bad!  The weather was PERFECT!!  After the walk we headed to a nearby spot right on the river for some lunch and relaxation in the sun.

I have to leave you with a picture of Lily's new obsession.  She recently has taken a very strong interest in having her hair done (she tells me 2 ponies everyday), having lotion and make up put on and drying her hair!  All of the above she also has to do to her babies...did I also mention she is BIG TIME into playing with her baby dolls.  Whatever I do to her, such has putting lotion on her cheeks, she then has to do to her babies!  The latest is drying her baby's hair...even the bald babies!!

One last thing...please take the time to say a little prayer for Ellie Jo Schmitt.  Ellie is recovering from her Fontan surgery in Iowa City.  She is starting to make great progress and I pray that things continue to improve for her.  We will always be thankful to Ellie's mom for introducing herself to us as we were waiting in Pediatric Cardiology for our very first ECHO at 20 weeks!  And remember those adorable calendars from last year...Ellie's mom put those together!!

Hope everyone is enjoying the great weather...hoping these next 17 days fly by!  Summer vacation, here we come!!

The Duves

Could It Be?

Could it be?  Has it REALLY been 3 months since I last posted?  Where has the time gone?  Since my last post we have celebrated Thanksgiving, Christmas and New Years...and here we are, just about ready to celebrate Valentine's Day.  What does Valentine's Day mean to you?  For most of us it means celebrating with a romantic dinner, the giving of cards and presents and spending time with the one we love!  Since Lily was born though, Valentines Day, February 14th, has taken on a new meaning.  February 14th is the end to a week of raising awareness for Congenital Heart Defects.  Every year, from February 7th through the 14th, parents and families of children born with a congenital heart defect do everything in our power to get the word out.  We ask for proclamations from our states and cities, we hand out stickers and pamphlets, we flood Facebook with messages of awareness, we post stories about life with a child who has a congenital heart defect. How many of you knew what a congenital heart defect was before Lily was born?  I'm sure I had heard those three words in passing, but I had no idea what they meant.  Those three words changed our lives!


Although many congenital heart defects are detected at a 20 week ultrasound, many are gone undiagnosed until after birth...some too late.  Here are some things you might not know..


*  Congenital Heart Disease is considered to be the most common birth defect, and is a leading 
cause of birth-defect related deaths worldwide.

*  Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

*  Congenital Heart Defects affect nearly 40,000 babies each year in the United States alone.


*  Nearly 4,000 babies born with a CHD will not survive their first year of life.


This past weekend Mazzuchelli Catholic Middle School held their 1st Annual Mini-Dance Marathon.  Loras College in Dubuque does a 12-hour dance marathon in April, and as an extra fundraising opportunity they invite local schools to host their own dance marathon.  Schools all vary in how they put their together.  Some have fun days with activities, others have dances.  Mazzuchelli celebrated Catholic Schools Week with a Penny War between the grades!  This is where we did the majority of our fundraising.  The week culminated with our mini-dance marathon held on February 4th.  The Loras College students helped to get the students motivated, they helped sell pizza, gave out prizes, etc.  We could not have done it without their help.  And the kids who came had nothing but good things to say.  They had a blast dancing for the kids and the Children's Miracle Network.  All in all, they raised over $2600!  How awesome is that??!!  I couldn't be more proud of my students, my school and the dedication that many of our kids put into this to make it a success!


Since it has been three months since I have last written, we have a lot of little things to share, some good and of course some not so good.  To start with both girls have been really healthy this winter (knock on wood).  We've had the runny noses and coughs but nothing too serious.  We think Ellie had a slight touch of the flu about a month ago, but other than that nothing that required any Dr visits.  However, we have been to the Dr for other reasons.  Since last May, we have been taking Ellie in to see Keystone (our Area Education Agency about every couple months.  We were concerned about her speech and her pronunciation.  I never thought about the connection to her hearing.  They did a hearing test and she passed some and failed some.  This last time we were in she refused to do any of the tests but they noticed that her ear drums were not vibrating like they should so she was referred to our pediatrician who said she has fluid build up in her ears.  They then referred us to an ENT where she again refused to participate in any of the tests with the audiologists.  They looked at her ears again and both were 100% filled with fluid that looks as though it has been there for a while.  He also noticed that her adenoids and tonsils were extremely enlarged.  That might explain why we can hear her breathing when she sleeps from down the hall!  So the plan is to have tubes placed in her ears to drain the fluids and to remove her adenoids.  We are hoping this solves her hearing issue which will then lead to better pronunciation in her speech!!


On a more exciting note, I am going to be an aunt again!!  My brother and sister-in-law are expecting in July. They already have one little girl, Emmy who is 2.  My parents have three granddaughters so secretly I am sure they are all hoping for a boy, but really as long as the baby is healthy, everyone will be happy!!


Lily's next cardiology appointment is in April.  We get to do an unsedated echo since she did fine the last time.  That is nice since it means we don't have to leave Dubuque at 5:30 to get there!  She will also have chest x-rays and an EKG.  We are hoping that her saturations remain in the mid 80's.  The lower they go the closer we are to her next surgery and we hope that she can wait until after she is 3 years old.  Please pray that things have remained stable for her over the past 6 months.  We haven't noticed any changes in her but that doesn't mean things haven't changed!


I have to leave you with a short video...if you know Lily at all, you know she LOVES food!  So when she is falling asleep at the supper table you KNOW she is tired...Enjoy!!

The Duves

Help For A Friend

Remember that friend from grade school who always made you laugh...laugh to the point where milk was coming out of your nose?  Well, that was my friend Courtney.  Courtney was everything you could want in an elementary school friend...she was kind, she was intelligent, she wore cool clothes and had a pool in her backyard!  Of course, what was important then isn't quite as important now!  Courtney and I have been friends since the 3rd grade when I transferred from a Catholic school to the neighborhood public school.  Courtney and I remained friends through the awful junior high years, lost touch a bit through high school, but re-connected in college.  I even had the pleasure to room with her our junior year!  I can't remember the last time I laughed as much as I did that year!  Now 10 years out of college, Courtney and I still get a chance to chat once in a while.  While she has been very busy raising three little boys, she has been there every step of the way with Lily.  Courtney has supported us in every fundraiser that we have done for congenital heart defect awareness.  Put simply, Courtney has a heart of gold.  Now it is my turn to help her...

Courtney and her family have decided to adopt a little girl from Ethiopia to give her a chance at a better life.  The expenses to adopt a child from Ethiopia exceed $25,000!  Courtney and her family have started a blog to journal about their adoption experience.  They have also set up several fundraisers to help defray the travel expenses to and from Ethiopia.

The family is currently selling t-shirts.  The cost is $10.  If you are interested leave a comment on her blog.

In January there will be a bean bag tournament held at Courtside.  The cost is $10 per person.

All coffee lovers:  There is a link on Courtney's blog to a website that sells coffee.  For each bag of coffee you buy, the family will receive $5.

If you link to Courtney's blog, there is also a donation site through PayPal!

Whatever child is chosen for Courtney and her family, she will be one lucky little girl!  She will grow up surrounded by love and three older brothers who will protect her.  Lastly, please say a little prayer that all things go smoothly!

http://smithethiopianadoptiondubuque.blogspot.com/

When in Rome...

Where did we go this weekend?

Okay, so we didn't actually make it to Rome...but close!

This weekend was unlike our normal weekends.  Most weekends Russ is spending time at work fixing a truck, working on the recycling line or fixing some other piece of equipment.  However, this past Friday night Russ came home from work and asked if we wanted to take Ellie to Wisconsin Dells for a night...that meant we had daddy to ourselves the whole weekend!!  And what a great weekend it was!

We made our reservations at Hotel Rome which is a part of the Mt. Olympus Theme Park.  Mt Olympus has an indoor and outdoor waterpark and an indoor and outdoor theme park.  The place was plenty big for a three year old to wear herself out, as well as mom and dad!  We left Saturday about noon after dropping Lily off at grandma and grandpa's house.  We figured we would arrive in Wisconsin Dells about two, however, after missing a turn and too many potty stops we got there about 3:30.  We were able to get right into our hotel room, dropped our things and headed to the outdoor theme park.  There were roller coasters, go cart tracks, and some little rides for Ellie.  She rode on the hot air balloon ride and the airplane ride, but by far her favorite were the go-carts, or racecars as she calls them.  She had a smile from ear to ear everytime I looked at her riding the go carts with daddy!  It was just priceless!

After grabbing some supper Ellie was thrilled to check out the indoor water park.  We had such a blast here!  We tried out the Lazy River but that wasn't quite her thing!  So next we tried out the waterslides...and these were some fast waterslide, ya know the kind where ya hit the water at the end and get a major wedgie?!  We couldn't get her off of the slides.  Really, I think they need some escalators to the top of these slides.  I was pooped just from walking up the stairs half a dozen times with the intertube and child in tow!  We finally did convince her to check out the Sunken Pirate Ship which is an area designated for younger kids.  Here Russ and I could relax while Ellie played on all the slides.  It was so great to see how much fun she was having!

Finally, we decided it would be best to head back to the hotel room before she got too tired!  All three of us snuggled up in bed and watched some SpongeBob before falling asleep.  I thought for sure since she had such a busy day that she would sleep in...not quite!  She was up at 6:45 and ready to go exploring again.  We told her we would take her back out to the go carts since those were her favorite but since it was a little rainy they closed the outdoor theme park, but they opened the indoor theme park.  Here we got to ride go-carts again, rode bumper cars, rode in a big bus that went way up in the air and played in the Alien Ball Pit.  And of course the trip wouldn't be complete without a stop in the Arcade!  By noon, Ellie was looking a little tired so we decided to take a quick trip to the outlet mall before heading back home.

 I think Russ and I actually enjoyed this part more than Ellie.  These cannon gun things shot foam balls across the ball pit so we were having some fun with some other little boys shooting back and forth!

Overall, we had an amazing weekend.  Although all three of us missed Lily like crazy it was wonderful to be able to spend some time with just Ellie.  And she was just a little angel...no tantrums, no meltdowns...just unbelievably perfect!  I could not have asked for anything more from her!  This is a trip we will definitely be repeating again!!

All About Lily

It seems whenever I decide to update our blog I can never figure out how to start, even though I have so much to say.  I thought I would dedicate this post to Lily since she will be hitting some pretty big milestones this month; turning 18 months and being 1 yr post-op!

We'll start with her cardiology check up in Iowa City.  When we originally scheduled he cardiology appointment we purposely scheduled it on the same day with an ENT Dr.  Lily has had so many ear infections since last September we decided to have tubes put in and see if that works.  Because we had to fit all of these appointment in in one day it was decided that Lily would have an un-sedated echo.  Many of you have seen Lily in action and she doesn't sit still for very long.  The thought of having an un-sedated echo just didn't sit well with me.  I kept thinking if she didn't lay still they wouldn't get good pictures and I wanted to make sure that everything was checked over really well and we didn't miss anything.  Fortunately for us she was amazing.  I couldn't believe how well she laid there on the bed watching Sesame Street and before we knew it, she was fast asleep.  Actually the whole day she was just incredible.  The chest x-rays have always caused her tears and fits.  They lay her on a long table and put some weights on her arms and legs to hold them down...and if that isn't bad enough, I have to move behind the wall to avoid the radiation.  She surprised the heck out of my by just laying there and letting the techs get all the pics they needed.  Lastly, we had the EKG done and again, she was just perfect.  Overall, I couldn't have asked for her to behave any better.  It is almost like she knew what had to be done!  Dr Reinking came back with all the results of the tests, etc and everything looks just great for her.  Her heart function is really good and her oxygen saturations are holding in the 80's...all good news!!  We don't have to go back for another 6 months...yippee!!

The following day we were in Iowa City to her Lily's tubes out in her ears.  It was an early morning leaving the house at 4:00 am so we could be there at 6:00 am.  I thought like in the past we would be able to walk back into the operating room and hold her as they put her to sleep.  However, they decided to give her a little something to relax her and before you know it she was in the arms of the Dr and he took her back into the operating room.  Because of Lily's heart condition we had to make sure that we had an anesthesiologist who works with pediatric heart patients and we had to be in the main operating room in case anything should happen during surgery.  Fortunately all went smoothly and in less than 30 minutes they told us everything went great and she was being moved to the recovery room.  By 9:00 she had recovered enough from the anesthesia that we were able to leave.  So far things have been great with her ears.  We go back to the ENT in the beginning of November to have her tubes checked...wish us luck!

In other news we have begun the fun task of potty-training Lily.  When we first introduced her to the potty I would sit down with her in the morning and we would sing songs while she was sitting on the potty.  We are in a pretty consistent routine now of getting up in the morning, enjoying a little cuddle time and then we head to the potty.  The first thing she does when she sits on the potty are the actions to the Itsy Bitsy Spider.  I guess that is her favorite potty time song.  Something else that we have used during our potty time routine is sign language.  Of course we use potty, but also the signs for more, all done, wash and good job.  I am amazed how quickly she picked up on the signs for our potty time routine.

Lily has been in an actual daycare center now since school started and she has adjusted really well.  She is beginning to be very verbal, in fact, I would say she has become quite sassy!  She is a girl who definitely knows what she wants and when she doesn't get it...boy, you'd better watch out!  I think part of that attitude is probably our fault since we tend to spoil her a bit.  She's been through a lot so she deserves it!!

Something we are not looking forward to is cold and flu season.  We are waiting to her from Lily's pediatrician to see if she will be able to receive the RSV vaccinations again this year.  They don't think it should be a problem but you just never know with insurance companies.  Pray that these are approved for Lily because getting RSV would take a huge toll on Lily.

We are looking forward to Halloween this year.  Last year we celebrated Halloween with Lily in the PICU.  She has her bi-directional glenn surgery on October 29th of last year so we are just about to the one-year anniversary of that.  WOW!  A year already!  This year we are heading over to my brother and sister-in-law's house for chili on Halloween night and then taking the girls trick or treating.  I can't wait to see my little witch and black cat all dressed up!

Hoping everyone is having a great fall so far!  I will leave off with a few cute pics of our little Lily Bug!

A Horsey-Riding, Tap-Dancing Kind of Girl

Recently, Ellie started a tap dancing class.  She is so excited each Monday to get her tutu on, and her tights and of course, her "tap tap" shoes!

 In the past, she has gone to gymnastics class, Tot Lot and preschool without any fear or tears.  But to our surprise, she cried the first day of tap class.  She came running out of class hysterically crying.  As hard as it was, I handed her off kicking and screaming to the teacher who took her into the class.  Moments later, there was no crying to be heard.  However, she decided to sit and just watch the first tap class.  So this past Monday she was hurrying around the house looking for her tutu and "tap tap" shoes, ready to get dressed and go to tap class.  There were no tears and she walked in the class ready to tap away...or so I thought!  Turns out Ellie decided she was just going to be a spectator.  Her instructor said she was sprawled out on the floor enjoying watching the other girls!  So we've decided at this point to give it a couple more weeks.  Hopefully she will get over her shyness and start to participate.

Now, tap dancing at home is a whole other story.  In fact, Ellie is so talented she can tap dance and ride her pony at the same time!!

And of course it wouldn't be quite "Ellie" unless she was riding her pony and tap dancing without pants!!

Tomorrow (Thursday) is Lily's 6-month cardiology check - up!  We are hoping for all good news and no surprises.  On Friday, we will be in Iowa City again to have tubes places in Lily's ears.  Since last September she has had 13 ear infections.  We are hoping these tubes help!  Please say a little prayer that our Lily Bug has a good appointment and the tubes help alleviate some of the ear infections.

Happy Fall Everyone!!

The Duves

Looks Who's Three!

Just three short years ago we welcomed Ellie Jane Duve into our family at 2:31 pm.  Ellie was 7 lbs, 8 oz and 20.5 inches long.  From the start, she was our cuddle bug.  She is still our little cuddle bug, taking every chance she can get to cuddle up with us.  Ellie will always hold a special place in my heart...she was the reason I was able to be called a mother!  I love you Ellie Jane!

             First day home from the hospital

            Nothing but trouble...

            But she sure looks sweet doesn't she?

            Ellie and her friend Nora

             Proud big sister!

            First day of school!

            Happy Birthday Sweetheart!