18 Months, Walk, and More

Hope turned 18 months old today...AMAZING!  She is absolutely adorable and her personality is just the cutest ever.  She laughs, smiles, and talks all the time.  I can't understand a word she is saying, but she carries on a conversation.  She is still hanging on to everything when she walks, but I know she will do it on her own sometime soon.  I don't mind because I know life will get that much harder when she is walking on her own and able to get places so much faster.

This past weekend I had the privilege of getting together for lunch with a bunch of heart moms, Hope's dietitian (whom we love and respect and don't know what we would do without her in our lives), and my newest inspiration...Alicia.  Alicia is 31 years old and has HRHS and Heterotaxy.  She is beautiful, funny, smart, and just the nicest person.  She is taking the lead on the CHF/ACHA Congenital Heart Walk in Cleveland and also works at Rainbow Babies and Children's Hospital.  She works with the new Cardiothoracic Aurgeon as well as the Interventionist Cardiologist.  She sees baby hearts all the time...words cannot express how much I respect anyone that is able to do that...especially a CHDer.  She gives me so much hope and inspiration and I am so blessed to know her.

I could go on and on, but I want to spend a few minutes trying to recruit my readers to form a team for the Northern Ohio Congenital Heart Walk.  Our Walk will be taking place on September 17th at Wade Oval Park in University Circle at 11am.  The website is below...please register either for our team or create your own team.  If you are out of the area and would like to sponsor our team...we would love it.  I am so excited to be working on this walk and hope it is a great success.

Our team is Hope's Heart Warriors.

Glenniversary

Today was the day...one year ago.  I had to hand my beautiful daughter over to Dr. Mavroudis once again to work on her little heart.  It is another day I will NEVER forget and always look back on in ways I can't describe.  Hope had been home for almost 5 months before the Glenn.  We got to know our beautiful princess outside of the hospital.  We went through so much before her Norwood and the thought of her Glenn scared me even more.  I spent weeks worrying...since the day we had a date scheduled.  It breaks my heart when I think of everything Hope has been through and the thought of what she will have to endure at least one more time.

Check out the glasses...they are Build A Bear sunglasses that you usually buy for your bear.  I had to buy them for Hope because they fit so well and she looks so darn cute!

Hope's Glenn went pretty well...she was put on bypass 3 times because she had problems coming off.  They had to make her left pulmonary artery bigger.  Her stay was fairly uneventful...although she did develop Pneumothorax when they took out one of her drainage tubes.  They caught it really fast and for that I am grateful.  It did increase her stay in PICU because we were going to be moved to Step Down the next day.  Even with the minor (they seem that way today, but I can assure you that they didn't feel that way a year ago), she was home 5 days after her Glenn.  It was miraculous!  It was so different than the Norwood and I am hoping the Fontan will be a whole lot like the Glenn.

Look at all my cuties.  They are all in Jerry's bed...they all do have their own beds!

It has been a while

and so much has happened in the heart world.  I hate these weeks when heart babies pass away.  It is heartbreaking and also brings out an anger in me that we can't 'fix' all of the babies.  There are some days that my mind works overtime thinking about all the different ways I think we can fix our little ones...technology that does not exist.  I think about how long transplants have been around and it really bothers me that we have not been able to figure out how to keep people from rejecting donated organs.  It seems like it is something we should have figured out by now.  I feel like we should be further along and I often wonder if it is because so few doctors are pioneers the way they used to be.  Do we just have great surgeons, but no one that can think outside the box and figure out a way to actually fix our babies?  Maybe it will be something mechanical, maybe a different surgery, maybe some medicine...something.  I don't know, but I know that babies dying from CHDs is totally unacceptable...babies dying from anything is totally unacceptable!

Onto some other news.  Anyone in the northeast Ohio area is invited to a luncheon with Hope's dietitian.  She will be talking about diet and effect on heart kids of all ages.  She will be answering any question you might have related to food, feeding, etc...She is a wonderful dietitian and we love her...she has given us some brilliant ideas.  She will be meeting any heart family that would like to join us on March 12th and Buca Di Beppo in Strongsville, Ohio at South Park Mall at Noon.  Lunch will be $17 per person.  Children 4-9 are half price and under 3 are free.  Even if you have no questions, please join us to meet other heart parents from the area.

Finally...we have a date!  The Congenital Heart Walk in Cleveland will be help on September 17th at 11:00am at Wade Oval in University Circle.  The website should be up soon and I will be posting a whole lot more information here as we get things rolling.  I am really excited to be helping with this wonderful fundraiser for The Children's Heart Foundation and the Adult Congenital Heart Association.  Both organizations are very near and dear to my heart and our walk will benefit both organizations.  I hope that if you are in the area you will consider walking on Team Hope or forming your own team!  We are looking for a HUGE turnout for this event.  If you know of any company that would like to sponsor the walk, please let me know.  We will provide a LOT of recognition for any corporate sponsor.

I am going to finish this post with some pictures...enjoy.

Yep...baby gate is now up!

It was actually in the 50s...still snow, but warm for Ohio.  Our weather has been crazy cold and snowy this year.

We can't wait for SPRING!