Wednesday, March 31, 2010

Appointment at U of I

Today was Lily's sedated echo and EKG down at the University of Iowa.  This is the first time we have had an appointment down there since November...4 months, can you believe it?  As amazing as Lily has been doing, I was pretty sure everything would be OK, but with these heart kiddos, you just never know.  Most of them look perfect on the outside...you would never know anything was wrong.  We got there at 8:30 and did all of our routine check-in vitals: weight, height, bp and O2 saturations...looking good so far!  We got back to our room, everyone came in and checked her out and we got her sedated.  The whole echo and EKG probably took only 45 minutes.  The last time it seemed like it too forever.  I was still feeling pretty confident that everything was OK until I saw the technician, the physician's assistant and Dr Reinking all talking...then my nerves started to get to me and all of these thoughts flooded my mind.  Dr Reinking came in and looked over the echo and when he said "it's amazing how some of these pictures look like a completely normal heart"  I knew everything would be fine.  In fact, things are better than fine, they are wonderful!  Her heart function is great!  Although she is considered a single ventricle, Dr. Reinking states that she actually has two very strong ventricles that do all the work for her heart and her heart should last a long time!!  He suggested that we try to take her completely off lasix.  For one week we are going to give it to her just once a day and then the week after we won't give it to her at all and we will see how she does.  Things we will be looking for will be swelling around her eyes, excessive sweating or fussiness.  If we see those signs, we can give her a dose.  Lily does have some stenosis (narrowing) of her left pulmonary artery so we are going to watch that.  If it doesn't seem to get any worse, that is something that can be augmented during her Fontan procedure when she is about three years old.  And...we don't have to go back for 6 months!  Shortly thereafter we will have to schedule a heart catheterization and probably have one more before her next big surgery.

She is meeting all of her developmental milestones...lots of babbling, crawling, pulling herself up on furniture and cruising so they have no concerns with that.  One area that they would like to have us get checked in the future is her hearing.  Sometimes being on lasix can affect hearing as well as big surgeries that she has had. 

Overall, we had an awesome appointment.  We look forward to having an appointment free summer!!

Monday, March 29, 2010

Busy, Busy, Busy

Seems like forever since I have had the chance to sit down and blog about all the things that we have been doing this past month and how much we are looking forward to in April.  It's Sunday night, the kids are in bed and I am doing everything I can to avoid grading math tests...what better time to blog??

I can't believe that March is already just about over.  We have gone from having beautiful weather, to having snow and now it looks like we are looking at 70 degree temps this week.  I can't wait to get outside.  We have been trying to spend some time outside with the girls when the weather allows.  They love it as much as I do.  We have gotten out the sidewalk chalk and Ellie has been doodling pictures of her family and Dora and Boots and Elmo and any other character she can think of.  We have also gotten her Dora bike out.  Last fall she was a little too short to reach the pedals, however, she can reach now!  She is slowly getting the hang of it, although I think maybe she would rather have grandpa push her around than pedal herself anyways.  Ellie was officially 2 1/2 on March 1st and I just can't believe how big she is getting and all of the new things she learns and says each day.  Her latest favorite words are "yep" and "nope" and her new song I heard her singing in the car was "Popular" from the musical Wicked...maybe that says I have played it a little too much on the way home from daycare!

Lily, too, is growing like a weed.  She is getting pretty brave as well!  She is walking along furniture and is beginning to let go and stand for a short time on her own!  She has mastered crawling up the steps, and boy is she quick!  Grandma and Grandpa Mihalakis have a one step and then a landing and I noticed she she goes down the landing head first, just like she is crawling.  I guess we really need to watch her around our stairs so she doesn't try those head first.  We have started to give her "real" food and she LOVES it!!  Forget the baby food, if you give her anything else, she refuses to eat any baby food following that.  Some of her favorites are bananas, macaroni and cheese, any noodles, bites of string cheese and yogurt!  Hopefully we can wean her from the bottle soon!

This past Friday we got a chance to go over to our local YMCA for their annual Easter Egg hunt and pool party.  Ellie actually got a few eggs this year and enjoyed holding her sister to go down the slide.  They were both little fish in the water.  There were lots of tears and screaming when it was time to get out.  Neither wanted to leave!  They both love the water so much so they definitely will enjoy spending time on the river this summer.  We can't wait!!

The girls both spent this past Saturday night at Grandma and Grandpa's house so Russ and I could go out on a "date." We managed to stay out until almost midnight...I haven't seen midnight willingly in a long time.  The only time I am up at midnight is when Lily wakes up in the middle of the night.  We were able to get our Easter shopping done for the girls, grab a bite to eat at 180 Main and visit a few other places before I just got too tired!  In the morning we got up and I called my mom to see how the girls did and it turns out Ellie was the one that was up in the middle of the night crying to go home.  Well, when she got up in the morning mom noticed that her eye was all pink and matted.  So, Ellie has pink eye and we are dealing with that.  I really thought after this last round of colds we would be good...guess I was wrong!

This Wednesday Lily has an appointment at the U.  We will be heading there early in the morning for a sedated echo and an EKG.  I can't believe it has been 4 months since we were last there.  Let's pray for good news and that we won't have to go back for another 6 months!!

Here are some of the fun things we have too look forward to in the next month:  On Saturday, April 3rd is the BIG Easter Egg Hunt at the University of Dubuque.  There are over 30,000 eggs, inflatables and all kids of fun.  On April 16th is the Loras College Dance Marathon that benefits Children's Miracle Network.  Those of you that have spent time at the U know all about the vending machines...the Dance Marathon raises money for those!  The Dance Marathon runs from 8 pm-8 am.  Families are given the chance to share their stories throughout the night for motivation for the students to keep on dancing.  This will be out first Dance Marthon and I am so excited!  And finally on May 1st is the Dubuque Heart Walk.  Team Lily would love to have all of you join us to raise money for the American Heart Association.  Registration begins at 8 am and the walk goes from 9-11.  You can go to this link:  http://heartwalk.kintera.org/dubuqueia/lilyduve  to sign up to be on Team Lily or to make a donation!  We will be ordering t-shirts as well.  T-shirts are $10 and all proceeds will go to the American Heart Association!  Please let me know if you are interested in shirts.  I will place the order on Friday, April 23rd.

Happy Spring...enjoy the nice weather coming our way!

Thursday, March 4, 2010

February Fun


We didn't get out too much during the month of February but we still managed to have some fun.  Here are a few of the things we were able to do and a few of our accomplishments!


We were able to make it down to the Congenital Heart Defect Awareness Party.


Ellie and Daddy concentrating really hard on a craft!


My furry lion and my silly clown.


We had a few play dates.


 
 Group Hug!

Two Little Monkeys Jumping on the Bed!



It must have been a pretty scary and suspenseful 
episode of Yo Gabba Gabba!

Somebody learned to crawl and pull herself up!

 
Faster than a speeding bullet!

Ellie wasn't too fond of this...this is her kitchen!
 
We went through a "pout when I don't get my way" stage!  Well, technically we will probably be doing through this stage for the next 16 years!




And finally... we managed to rid ourselves of Pull-Ups (even at nap time and night time)!

 
Yep, that's Ellie dancing before bed in her tutu and "wonderwear" (underwear)!

Can't wait to see what March brings!