Heart Run...well, we walked

So I made Jason and the girls get up nice and early on Saturday and we participated in the Heart Run. We didn't participate in the competitive portion of the race because we couldn't with the strollers, but we did do the non competitive portion of the race. It was pretty emotional for me and I caught myself tearing up during it several times. There were so many people there walking and running and it just put into perspective to me how many people live with heart disease. I walked in memory of so many precious babies and I walked in honor of so many we have met. I walked for Mia and her precious Angel Heart, I walked for Maddie who recently had a cath procedure done, I walked for Grace and Teagan and all the other heart babies out there. After the race all of the mended heart participants got a special red hat instead of the blue hat that everyone else got, when I went to get the hat the man behind the table asked me if I had a mended heart. I told him that I didn't and then I pointed to Fia and told him that she did. He was very surprised, but gave us a hat anyway. Gabi told me next year she would actually run with me, which may be fun. Every child that ran the race got a medal, so there is a picture of Gabi holding her's up.
Another reason I believe I was a little more sensitive is the realization of what my baby girl went through. Sophia has been pretty sick lately and I have been stressing myself out trying to figure out what it was. I thought it was RSV, but then learned that it probably wasn't because of her synagsis shots, then I thought it was teething, (which some of it is because she is getting three new teeth). Jason took her into the doctor on Friday because she still hadn't gotten any better and Dr. Penman told us to bring her in if she still wasn't feeling well. Well, we found out that she has a DOUBLE ear infection. I was pretty upset when I learned this. Sophia was not bothering her ears at all, she wasn't running a fever, anything. It just goes to show that my baby girl went through so much that a double ear infection doesn't bother her.

March for Babies

I have decided to do the March of Dimes Walk this year. I was going to do it last year, but decided it probably wasn't a good idea to do all that walking at eight months pregnant! This year it is May 16 and we will be doing it as a family. If you live in Anchorage and would like to join our team sign on and look for Sophia's Heart team and join us. You can make a donation if you would like, but we are not looking for donations, we just want to go out and walk and spread awareness on premature births and birth defects. I am still trying to put new pictures on, but here's a preview of the reasons I will walk this year!

Thank You Katie!

I was browsing through the blogs of Sophia's heart buddies and ran across the post from Katie (Maddie's mom). Currently there is a bill being introduced to help with CHD. I am posting the draft letter from Katie's page and encourage everyone who visit's my page to write to their Senator's and Representatives to have them support this bill. CHD is fast growing and it is something we desparately need funding in! Thanks again Katie!!

"Congenital Heart Futures Act" Introduced to Congress
For the first time in U.S. history, Congress is addressing the needs (present and future) of congenital heart kids and adults. The legislation's purpose is two-fold. First, it will "...increase research surrounding the cause, diagnosis, treatment, prevention, long-term outcomes and barriers to care for all CHD patients." Secondly, it seeks to "promote CHD awareness by creating a comprehensive public education and awareness campaign."

Increased research, awareness and funding for the 1.8 million people like Maddie fighting congenital heart disease? YES! Join us and help get this legislation passed. Please email your Senators and Congressman and ask them to become co-sponsors of this legislation. Here's how:

Go to http://www.senate.gov and http://www.house.gov to look up your representatives and their email address.

Draft your email - Here is a template to get you started.

Dear [Lawmaker name here]

I am writing as a member/supporter of the The Congenital Heart Information Network to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

[Insert 2-3 sentences saying why you care – some examples:

From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.

For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thank you in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name]
[full mailing address]
[email]

Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.

Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress. That's all there is to it! Easy and potentially life-changing for so many children and families. Thank you!!!

Nine Month Update

So we went and had a double-header appointment today. Sophia has her nine month appointment and a cardiology appointment. So for her nine month appointment she did very well! It didn't appear that she lost weight because she has been sick. I told Dr. Penman that the little voice in the back of my head told me that she had RSV and he told me that the way she sounded today, he thought the same thing. He wants me to keep and eye on her to make sure that she doesn't get any worse.

So, I hardly vent about my experiences at the pediatricians office...well, actually I don't think I have ever complained about the pediatricians office, but I do have one today. I was a little late getting to the appointment today and when I came in the room, the nurse (now I should have know better because it wasn't Leah, who knows not only Sophia super well, but she has been our nurse since Gabi was a baby) was getting ready to get a hemoglobin level from Sophia. Apparently this is something that they do at nine months. She tells me that they are going to prick her heel and draw blood. Well after spending four weeks in Seattle after her birth and a week in November, I know that Sophia's blood, as all heart babies, draws very slowly. So, I tell the nurse this. She then tells me that she won't have a problem because Sophia's capillary refill was good. Plus she only needed a little drop and it sucks it right up so it won't take that long. So she pricks Fia's foot and what happens? You guessed it, blood wasn't coming! She had to press on Fia's foot to get the blood out. Fortunately, Fia is used to it and it didn't bother her much. Besides this Fia is doing great. She is 50% in everything, height, weight and head circumference. I was a little bummed she didn't get any vaccines this month, because I was hoping she would and they would give her Tylenol for her echo that was scheduled right after this appointment.

So we visited Dr. Wellmann and she was pretty tired, so we figured she would go to sleep...that didn't work. We didn't even get her blood pressure drawn without her crying. I got her to sleep twice in the echo room, but once I laid her down she woke up and started crying again. I don't know how to thank Dr. Wellman because he is SOOOOO patient and gives us all the time we need. So I laid her on my lap and she did the echo on my lap. She did pretty well, cried a little bit, but we were able to calm her down pretty quickly. So of course I feel like I have a 500 pound elephant on my chest because I am waiting to hear when we are going to Seattle. So the last time we were there the pressure between Fia's arm/leg pressure and her heart pressure was 42, today it was 24! It was not only puzzling to me and Jason, but also to Dr. Wellman. He said he doesn't trust her or the numbers, so he is going to have us come back in two months. He was also confused as to why the number was higher with blood pressure medication then it was without any medication. She was on Captopril the last time and the only "medication" she is on now is aspirin. Fia is starting to get crawling down...she does it on 3.5 legs, but it gets her where she wants to go!

Here are some recent pictures of the girls and if you look at the one with Fia's mouth open you will notice the she has two new teeth. They aren't the top middle...they are the one's on either side of the middle!