Monday, November 29, 2010

I Hate These Posts

The hardest posts I have to write are when I find out another person with a Congenital Heart Defect (CHD) has lost his/her fight.  I hate it and I hate that CHDs take the life of anyone.  It is sad and a little more of my heart breaks each and every time. 

Today it is with a VERY heavy heart that I share the passing of Steve Catoe.  He is an adult CHD warrior and the voice of many excellent posts about CHDs and life in general.  I never had the opportunity to meet Steve in person, but learned a lot from him online.  He shared so much of himself through his posts and always shared on Facebook as well.  Steve will be missed by many and their are a lot of tears being shed in the heart world today.  RIP Steve...and give the little CHD angels hugs and kisses from all of us.

Another CHD warrior also earned his wings recently.  Andrew was almost 4 years old and is welcoming Steve to heaven.  It breaks my heart to read through his blog and realize that he was doing so well and yet his CHD took his life.  It scares me all the time and I worry almost daily that something might happen to Hope.  It brings her heart defect to the forefront of my life when another CHD warrior earns his/her wings. 

Please be sure to say a prayer for their friends and families. 

Wednesday, November 24, 2010

Happy Thanksgiving

The thankful and giving season is underway and what a beautiful time of the year it is.  I love this time of year and am so thankful for so much this year and every day.  I am thankful for such a wonderful family and friends.  Real life and online friends have shared so much with our family this year and it has changed my life forever.  I have met so many wonderful families and made great friends and am thankful that when I was many people rallied around and helped me find the courage and love to endure everything we have been through this past year.

Every year we spend time with our families on Thanksgiving and this year is no different.  We will be going to their houses this year which is different than last year.  Last year Hope had been home from the hospital for only a few weeks and we were not going anywhere.  We had family come long as they were not sick.  We cooked and fed everyone and let family and friends spend time with Hope and our family.  It was a miracle and we wanted to celebrate with everyone.  This year will be great as well because I don't have to cook and we will be able to spend time with family.

We have not started Christmas decorating time.  I wish I had more time in the day to get done everything I would like, but days are not getting longer so it will wait.  I know we will find the time to decorate and get Christmas together.  Even if we didn't...we still have our family and that makes the holiday season complete.

Happy Thanksgiving to all my friends...I know you have a lot to be thankful for this year!

Monday, November 22, 2010

Hope's First ER Visit and a SPECTACULAR Abstract

Anyone that knows me knows that I am not overly paranoid.  When my kids get a cold, we wait it out.  I don't rush them to the doctor or the emergency room.  To be honest, we have only been to the emergency room one time before and that is when my youngest, Paul, feel and got a huge cut on his forehead...needing 4 stitches.  I just don't like the emergency room and prefer to wait and call the doctor or go in to see her. 

So...for me to take Hope it had to be very concerning...and it was.  She has had a runny nose for a couple days and her voice started getting hoarse.  On Friday she woke from her nap and was just plain cranky.  She was crying and it seemed like she was in a lot of pain.  I checked her temperature...normal.  I listened to her lungs...normal.  I checked her pulse ox...normal (82).  I gave her some tylenol and tried to give her a bottle of Pedisure.  She just wasn't having it or anything else.  I walked my house for about an hour hoping it would calm her down.  Her cry was really hoarse and it scared me.  I thought she might have strep throat.  By this time it was after 5pm and the doctor's office was closed.  So I waited until Jerry got home from work and off Hope and I went to our first ER visit.

Now...our local hospital is affiliated with The Cleveland Clinic, so I was happy and knew they would take good care of us.  We got through check-in (I'm sure that's not what it is really called) and back to a room in a few minutes.  The doctor came in immediately and checked Hope over.  By this time she had eaten 6 Ritz crackers, 1/2 a bottle, and an entire popsicle (they give those out at the hospital).  She was happy, smiling, and back to her 'normal' self...of course!  Her pulse ox was 83 and no temperature.  We went through her symptoms and he checked her ears and her throat.  He called her cardiologist to discuss everything and we were released less than 2 hours after we arrived with a diagnosis...COLD!  No croup, no strep, no heart issues, just a cold.  I am so happy and relieved and kind of feel silly for taking her, but I am glad I did.  I am glad we met the nurses and doctors that were there so they know Hope and hopefully we won't have to see them again through the ER.

Now for the cool abstract that I found:

Congenit Heart Dis. 2010 Sep;5(5):476-481.
Successful Pregnancies in Two Women with Hypoplastic Left Heart Syndrome.

Opotowsky AR, Shellenberger D, Dharan V, Paré E, Norwood WI, Webb GD, Donner R.

Department of Cardiology, Children's Hospital Boston, 300 Longwood Avenue, Bader 209, Boston, MA 02115, USA.


Objective.   Hypoplastic left heart syndrome (HLHS) is a relatively common complex congenital heart defect. Prior to development of staged reconstruction (i.e., Norwood procedure), HLHS was almost universally fatal within months of birth. Early survivors of the Norwood procedure are now reaching reproductive age. We report successful pregnancies in two such women. Patients.  The first patient was a 20-year-old woman transferred from a community hospital at 33 3/7 weeks gestation because of preterm labor, suspected preeclampsia, and mild chronic hypoxemia. She had normal systemic ventricular shortening without significant valvar regurgitation but severe neoaortic dilatation. A fetal ultrasound demonstrated intrauterine growth restriction. An urgent Cesarean section was performed at 33 6/7 weeks gestation, given breech position and intractable preterm labor. The second patient, a 23-year-old woman followed at this institution through pregnancy, presented with preterm labor at 36 weeks gestation. Her systemic ventricular shortening was normal, with mild tricuspid regurgitation but without neoaortic dilation or regurgitation. She developed active labor at 36 3/6 weeks, and had a spontaneous vaginal delivery of a small for gestational age infant. Both women tolerated labor and childbirth without complication. Neither infant had evidence of structural heart disease on fetal echocardiography or physical examination. Conclusions.  These cases, the first reported successful pregnancies in mothers with HLHS, highlight the challenges of pregnancy among women with complex congenital heart disease in general and raise several considerations specific to HLHS.

PMID: 21087437 [PubMed - as supplied by publisher]

This is the best article a mom with a HLHS baby girl could ever read.  This is with the medical technology of today...imagine when Hope is 20 and the advancements they will have made!  The tears flowed so much when I read this article.  Even if Hope doesn't want to have children of her own...there is still the possibility and I never knew it was even a possibility before...actually we were told it is/was not possible.  

Monday, November 15, 2010

Let's Help

Everyone who has read my blog knows that I am huge fan of The Children's Heart Foundation.  They use all of the donations to benefit research for congenital heart defects. this time of giving...sponsor Mike in his quest for the 50k race to benefit The Children's Heart Foundation.  You can read Mike's story on his blog.  He is amazing and spends much of his 'spare' time trying to raise awareness and money for congenital heart defects.

It is getting to Thanksgiving and Christmas and this is the season for giving.  Please take the time to donate and support Mike in his quest!

Tuesday, November 9, 2010

Synagis and Updates

She is totally cool!
Hope got her first synagis shot of the season today.  I love that our insurance allows a home health nurse to come and give it to her at our house.  It is so much better than having to go to the doctor's office to get the shot like so many other families.  Hope has gained 2 ounces since the last time she was weighed.  She is still under her 16 pound weight of before, but we'll take the 2 ounces.  I have hope that she will get back some of the weight she lost and gain more.  I have received a lot of great ideas and I thank everyone who gave me the ideas.  I am trying most of the ideas I received and she seems to be happy eating.  She will eat just about anything and it makes things so much easier.  She doesn't eat a lot of anything, but at least she tries it.
You think this might be the cause of the weight loss?  I know Rex sure hasn't lost any weight!
Now to catch up with some friends:
Logan is still in Boston and is on the roller coaster we have all seen happen way too often.  His mom is not updating her blog, but I am following along on facebook.  Please continue to keep all of them in your thoughts and prayers.

Please keep Mia and her family in your prayers.  She had to go to the hospital with an infection.  Hopefully it will be a really short stay.

Also, say a few prayers for Bowen.  He has another infection which looks like it could keep him in the hospital longer.  His parents would love for him to get home soon and I know he would love it as well.

I know I am missing some of my heart friends, so please just say a prayer for all of the babies, children, and their parents and families.

Tuesday, November 2, 2010

OK...Need High Calorie Food Ideas...REALLY BADLY

Hope has managed to lose weight this month.  Almost 1/2 a pound.  She is back in the 15 pound range when she had hit 16 pounds already.  I was totally amazed and very sad this morning when her home health nurse came.  I really need some ideas.  I am doing everything I can think of to get extra calories in her.  I make oatmeal with milk instead of water.  I put butter on just about everything.  She is drinking Pediasure, although not as much as she was formula. 

I am so afraid they are going to want to put an NG back in to get her to gain and I am totally opposed to that idea.  She eats really well and loves food and I think that would be a step backwards.


Monday, November 1, 2010


Last year this was the first 'holiday' Hope was home to celebrate.  She was home to celebrate every single holiday...including each month (other than her 1st month) birthday at home with us.  Here are some great pictures from Halloween this year.
You notice she loves her candy...especially lollipops.  I can't keep them away from her.

All the trick or treaters.  Amanda the Princess, Jerry as Iron Man, Dominic as Gangster Grandma, Hope as a Butterfly, and
Paul as a Frog. 
They only lasted about 45 minutes because it was really cold and I think they were getting bored.  I am happy about that...less candy means less time mommy has to more candy today.