And the results are

inconclusive.  I wish I had more to tell everyone, but I don't.  Her echo and EKG looked just like the last one.  She looks good...although she needs to keep gaining.  Her sats (oxygen saturation level) were down...the highest they got today was 80 and that is low for Hope.  She usually sits around 83-88.  This was pretty discouraging and made me realize that I really can't tell what is going on just by looking at her.  I would swear that her sats were in the 80s...she just looks really good to me.  We have to get her sats checked in 2 weeks in Medina along with a weight check.  We are really hoping she is getting over or starting to get a cold and that they will be back to normal in a couple weeks.  If not, we will have the Fontan talk.  So...pray that her sats are back to normal...she definitely looks better than 77-80.

After Cardiology, we got to head to Nephrology (kidney doctor).  We saw a new doctor today and I absolutely love her.  She is super smart and spent a lot of time going over everything.  She also got to look at some clinical trial stuff I printed and brought along with me.  We talked about the bio-artificial kidney that is in trials for adults.  Hope even liked her a lot...which means so much.

Big John (the BEST phlebotomist in the world) was not there today, so we didn't get labs done.  We are going to head to Medina tomorrow and get her blood drawn.  There is a great lady that works there that can find a vein and it doesn't bother her.  Hopefully the results will be good with her kidney numbers.  So I guess that is another prayer from everyone...that her kidney numbers look good.

I will be catching everyone up when I get the results and definitely when we get her sats checked in Medina.

Appointments Tomorrow

We are off for a long day of appointments tomorrow.  I know there are a lot of mommies out there that spend a lot more time at appointments than we do, but they always make me so nervous.  I never know if they are going to see or find something that I don't see everyday.  I worry that we are going to have the Fontan talk...I am praying hard that we can wait one more year.  The thought of having to go through another surgery scares me like nothing else ever has.  I worry that her kidney function is suffering and that I can't see it.  So many worries before an appointment and I hate it.  She is also older, so she knows a little more about where we are going and why.

I will post an update tomorrow night...please keep us in your thoughts and prayers tomorrow...it is going to be a long day!

CHD Week Wrap Up

I had to post one more day...I am actually back to posting after a break and realize I miss it so much.  The above was posted by The Cleveland Clinic Children's Hospital Community Facebook Page.  I feel like my little girl is a star!  Following is the information that was posted as well:

Our LITTLE HERO today is HOPE... 

Hope was born on September 14, 2009 in Akron, Ohio with Hypoplastic Left Heart Syndrom and Bi-Lateral Renal Agenesis. Hope had the Norwood on September 30, 2009 at Cleveland Clinic Children’s Hospital. She was lucky to have another heart defect (PDA), so her ductus was open and she did not experience any complications from waiting so long to have her Norwood. We finally took her home on the 28th of October; she was just 6 weeks old, but doing so much better than anyone ever expected. Hope had the Hemi-Fontan on March 8, 2010. She spent an amazing 6 days in the hospital for her Hemi-Fontan and came home so much less blue (not yet pink, but definitely not as blue/gray). She has stenosis in her left pulmonary artery, so she has had a few caths to balloon the artery Hope is currently in preschool and doing great!

We thank Hope and her family for sharing this story during Congenital Heart Disease Week! 

And this is a picture of my princess in her "I Believe in Miracles because I am One" Mended Little Hearts shirt.  She wore this to her Valentine's Day Party to celebrate Congenital Heart Defect Awareness Day.

My little girl is amazing me lately.  She is talking like crazy and eating like crazy too.  Since this last sinus infection, she has started eating more solid food than ever before.  She runs to the car after school and tells me what she had for snack...she hadn't eaten anything at school before.  Most people know that we have supplemented solid foods with a high calorie drink basically since she was born.  We have been trying to get most of her calories with solid food, but it has never been easy.  Now...I can't even explain the difference.  She also started Pepcid and I am wondering if that may be part of the solution.  I know we are definitely going to continue the Pepcid because I am afraid her eating will slow down otherwise.

Hope has a jam-packed day coming up on February 25th.  She has Cardiology and Nephrology...which means all day downtown.  I always fear these appointments because she looks and acts amazing to me, but I can't see her heart or kidneys.  I really hope to share a post or two before the 25th, but if life gets in the way, please say a prayer for us.