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!

Every Heart Has a Story

A fellow heart mom, Stefanie, has put together a great blog event to help families connect with other families going through similar situations.  I have decided to join the event and tell "Lily's Story."

Our heart journey began on December 4, 2008 when we found out that our unborn daughter most likely had a complex congenital heart defect.  We were absolutely devastated.  Our doctor referred us to the University of Iowa Hospitals and they confirmed what we feared…our daughter did indeed have a congenital heart defect that would require open-heart surgery shortly after birth. 

The months leading up to Lily’s birth were an emotional roller coaster.  On one hand we couldn’t wait for the birth so we could meet our daughter.  But on the other hand I wanted to keep her inside because that was a safe place for her.

On April 22, 2009, Lily Mae Duve was born weighing 7 lbs, 12 ounces.  She was 20 ½ inches long.  We saw her for a brief minute before she was whisked away to the NICU.  It was 6 long hours before I got to officially meet Lily.  She was beautiful, even under all the IVs, wires and tubes.  Lily was officially diagnosed as having a criss-cross heart (extremely rare), transposition of the great arteries, a vsd and mild pulmonary stenosis.

For the next 10 days, Lily stayed in the NICU, getting stronger, learning to eat from a bottle and showing the doctors just who was boss…boy, was she a feisty one!  I guess that comes from the red hair!  I finally got to hold Lily was she was almost a week old.  It was the best feeling in the world.  I just looked at her in amazement and admired her strength.  Lily was then moved to the PICU to get her ready for her upcoming surgery. 

On Monday morning, May 4^th, Lily was taken into surgery.  I cannot describe the helpless feeling I felt as my newborn daughter was wheeled away with all her tubes and wires through the big double doors of the operating room.  About 2 pm Lily was wheeled back to the PICU and the surgeon came to talk to us.  Things hadn’t gone as planned.  The placement of the BT Shunt was successful but every time they would clamp off the pulmonary artery, her heart would stop.  This was heartbreaking news.  I had been looking forward to the surgeons coming in to tell us that everything was a success and we would be on the road to recovery and heading home.  Unfortunately, Lily had other plans.  It was back to the drawing board for the cardiologists and the surgeons.  When I saw Lily for the first time after surgery I just broke down.  This wasn’t the baby that I had sent into surgery.  The baby that I sent into surgery was pink, this baby that was wheeled back into her room was gray.  My baby was full of life, and this baby lay almost lifeless hooked up to so many machines and IVs that I couldn’t even count.  I felt a huge sense of guilt for sending her into surgery.  I felt like it was my fault that she looked the way she did and I can’t even imagine how she was feeling.  And to make things worse, they were asking me to send her in to surgery again…in only 4 days.

On May 8, Lily went in for her second open-heart surgery.  All heart surgeries are risky, but this was even more risky because they would be putting her on by-pass, meaning they would be stopping her heart to work on it.  They let us know in not so many words, that if this surgery didn’t work, they wouldn’t know where to go from here.  Basically, they would have no other options.  The time drug out slowly, until finally we heard from the doctors.  The surgery was a success!

My little miracle baby began to recover and before we knew it we were being moved down to the general pediatric floor.  Moving to the pediatric floor was awesome!  I finally felt for the first time like I was her caretaker, her mother!  I could pick her up and hold her whenever and for how long I wanted.  She could finally begin to eat real meals.  We were no longer measuring her meals in CCs but in actual ounces!  Lily made an amazing recovery and we were headed home 8 days after her open-heart surgery!

Life at home was pretty.  She very much seemed like a normal baby to us, despite the doctor appointments and medications.  Lily continued to grow and meet all her milestones right on time.  We knew though, that once again we would be heading to Iowa City for the second stage of her three stage repair.  When Lily was 6 months old, near the end of October 2009 we made the dreaded trip again.  All of the anxieties were setting in again-how long would we be away from home, how would big sister Ellie handle being away from us again, how could I let them take her into that operating room again, would she come out the same vibrant baby she was before, or would she not come out at all?  It broke my heart to imagine her going through another open heart surgery.

On October 28, 2009, we put our trust in the surgeons and our faith in God and handed over our precious baby.  This time around was a little different for me.  I felt a sense of peace and calmness when she was in surgery.  I knew God was with her and taking care of her and I knew she would come out of the operating room safely.  Mid-afternoon, Dr. Davis came in to let us know that things had gone very routinely and Lily would be heading up to her room in the PICU very soon.  Lily’s recovery went very smoothly and we left Iowa City only 5 days after her surgery.

Again life returned to normal for our family.  It has been nearly 6 months since Lily was last seen by her cardiologist.  Lily will have another surgery around the time she is 3 years old, but we don’t think about that.  We spend our time just enjoying each day with.

Lily’s is an inspiration to everyone in our family.  We thank God everyday that Lily is still here with us.  Things could have taken a very different path, but the miracle workers at the University of Iowa gave our daughter a chance at a normal life and for that we will forever be grateful.