Gracie

I just found this blog Gracie's Blog.

Gracie has HLHS, had a heart transplant, the heart failed and she is now on ECMO. She needs a second heart, but she's too sick and can't be on ECMO long term. Please stop by her blog and read her story, and please pray that she pulls through this horrendous ordeal.

J.O.B.

I have a JOB! My sister's boss has been working pretty much non stop since the girl that worked nights there quit and moved away. I told them (my sister and her boss) I couldn't work that shift because it would mean getting the kids out of bed to come pick me up and not get home until midnight. I don't drive or it wouldn't have been an issue, but because Rob would have to drive me, we can't leave the kids home alone.

We talked it over and we agreed that I could work nights on Friday and Saturday because the kids won't be getting up for school. I can work anytime during the day shift and if they want me to work afternoons, I would be leaving at 7pm. That's plenty of time to get the boys to bed at a decent hour for school.

Right now, it's looking like part time. I've also let them know I've applied to college for the fall so we can work around that schedule as well. I start my training this morning, so I will update later.

Tomorrow marks 6 months

Isn't he beautiful? Tomorrow marks 6 months since he's been gone. I've been having weird deja vu around the house lately. The feeling that "oh, I've got to check on Tommy!" only to realize he's not here. Our new trailer is set up almost identical to the one we had in SC. I have caught myself walking passed what would have been his room and getting the feeling I'm not here, but there. I'm startled to see a loveseat and boxes instead of his crib. Then I remember he's gone. I guess its all part of the grieving process. My mind could not deal with all of it at once so I as I am mentally capable, my mind gives me a small piece to handle.

I went with Rob to the doctor today. He's fine, just a check up. I worry about him with his heart problems too. All is well and I think we've found a great new team to handle his issues. But sitting in the exam room reminded me of the many, many times I've sat in one similar. Cardiology, ENT, Pulmonolgy, Pediatrician, Nurse visits for shots. The room felt so empty without that huge stroller and Tommy's gear. Rob found out he needed a booster shot and blood drawn. He's not a fan of needles and he grumbled about it to me. It set me to tears. All I could remember was how many times I watched Tommy get stuck. His poor little veins blowing out and the nurse starting over. My poor baby! (Rob sucked it up and took it like a man, by the way)

I asked Rob if all of the pain we put Tommy through so that he may live another day was worth it. We agreed that it was. We miss him so much and wish he'd been with us longer. We wish he were still here with us. How beautiful it would have been to see Tommy be able to run across the field with his brothers. To have finally made it free from the trach and had the heart surgeries to get him to adulthood. Some days it's just too much to deal with. I put it out of my mind and go about my day.

Then there are days like today, where I let the tears flow and my fingers fly across the keys, letting it all out. I want to say that my life is full of love and happiness because it really is. I'm just not the same person I was 6 months ago. I have a life full of love and happiness because life is too short to NOT reach out there and grab it with both hands and never let go. Tommy's life and death have changed me on so many different levels. I never knew I could be so strong.

I made it a point to visit him today at the cemetery. I found his lighthouse that had been buried under the snow and ice. I straighted everything up and let the wind fill the cemetery with bubbles. I know he would have loved that! I kissed his marker with my finger tips and told him how much I loved him and missed him. I didn't stay long. I hardly do. I still can't believe his grave looks as fresh today as it did the day we buried him. I wonder how I will feel when spring comes and grass begins to grow?

Sitting here today, 6 months later, my life has something I've never experienced before. I have peace. Calm. When I feel the wind on my face, it is a kiss from Heaven. When I sleep at night and dream of my sweet baby boy, I know when I wake up that it was a gift from God to see my son again. He feels alive and real in my arms when I am sleeping. I will weep often for my son, but I will do so with the peace in my heart that he lived his life knowing every single day that I loved him. I have no regrets. None. I grieve for my own selfish reasons. I want to smell his hair. I want to hear that laugh. I want a kiss and baby hugs. I want to see him run across that field to me. Someday.

The CHD Awareness Quilt Project

I heard of the CHD Awareness Quilt Project when Tommy was still very small. I knew that it took a very long time for each square to be made and I was afraid that if I chose something then, that it would not be a good representation of Tommy in the future. I wanted to wait to see what his interests would be. I put the quilt to the back of my mind.

Recently, during CHD Week, I was given an invite on Facebook to join the CHD Awareness Quilt Project group. It got me thinking about what kind of quilt block I would love to represent Tommy, so I submitted our information. Tommy's name has been officially added to the list for his quilt block to be made. Their website is The CDH Awareness Quilt Project. His name is on the Honor Roll S-Z, listed by first name. If someone wants to volunteer to make Tommy's quilt square, there is a link on the site about who to contact. They will be able to give you all of the information about what it should look like.

To check up on the status of Tommy's quilt block, go here and click on the link K-Z. The names are in alphabetical order by first name as well. I don't know if I will ever get the chance to see Tommy's quilt in person. I hope someday to travel to one of their shows once its done and have my picture taken with it.

I Just Changed My Life

I applied to college today and filled out my FAFSA forms for financial aid. All there is left to do is get my transcripts and residency forms. My major is going to be Human Services. I am going to be a Patient Care Advocate so that I can do for others what I did for Tommy. I don't want other families to have to fight the system alone. I want to be a voice for those who cannot speak. It's going to be hard, but I've been working on it all morning and my confidence keeps building. I can't wait to fight for others in need.

What a Great Surprise!

Our things are still in storage in Charleston. Until we can get our tax returns, we can't drive down to get them. We've been getting by without our furniture, but to be honest, sitting on a lawnchair in my empty living room has been a little discouraging. I had not mentioned to anyone except Rob about how I wished we had a couch so when people come over they don't have to sit on the hard kitchen chairs. We figured it's been this long, a couple more months won't hurt us.

So imagine my surprise when my sister called me yesterday. A family in her apartment building had moved out and abandoned their living room furniture. The landlord was going to toss it out unless we wanted to come get it. Wow! So last night we drove to her place and looked at the furniture. It's great! They gave us not only a couch, but a loveseat, a chair with an ottoman and a wooden entertainment center.

Once we get our things from Charleston, we will keep what we can use, combining both sets and whatever we can't use, we will pass on to anyone that can use it. I feel so fortunate to wake up this morning and be able to blog from my comfy couch while the kids play video games next to me.

Now I'm off to get everyone ready for a family gathering. Yesterday marked Rob's grandparent's wedding anniversary and most of the family is coming into town today to have lunch with them. I believe this year marks 55 years for them.

Happy Valentines Day and more importantly, HAPPY CHD AWARENESS DAY!!!

I have posted a picture of Tommy that shows his scars, his personality (growling at a bubble that he wants to catch and pop), his life in the hospital on the cardiac step down unit, the machines that kept him alive and monitored his heart, and his heart monitor in the background. Click on the picture to enlarge it. Look at the scars. Look at the IV in his hand. Look at the heart monitor showing his oxygen saturation levels at 71!! For those new to our story, 71% is amazing for Tommy. He typically hovered in the mid to low 60s. To put into perspective...a healthy heart has 100% sats. Tommy's heart never sustained those kinds of sats without being given 100% oxygen through his trach collar. Just look at him. So full of fight and determination, but just two weeks later, I would watch him die right in front of me. Heart defects KILL!!!! Something more must be done!

I am so thankful for the research and awareness done in the past. Kids that used to die at birth are now living longer and longer. But it's not enough. My son is and angel. No more pictures. No more singing and signing "Itsy Bitsy Spider". No more throwing toys across the room. No more hugs, kisses and snuggles. More needs to be done! Lets educate ourselves and others. Pass this on to everyone you know!

Children's Heart Foundation

Some information from The Children's Heart Foundation:

What Is a Congenital Heart Defect (CHD)?
A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels.

There are many types of congenital heart defects, ranging from those that pose relatively small threat to the health of the child to those that require immediate surgery. Many types of CHDs and the surgical procedures your physician may recommend to correct the condition can be found in the Children’s Heart Foundation’s parent resource book It’s My Heart – Chapter 2.

Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram. After birth, congenital heart disease is often first detected when the doctor hears an abnormal heart sound or heart murmur when listening to the heart. Depending on the type of murmur, he or she may order further testing such as – Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing. More information about the diagnostic tests that may be used to identify a heart problem or check the status of a previous surgical procedure can be found in It’s My Heart – Chapter 4.

The warning signs of Congenital Heart Disease in infants and children may include a heart murmur or abnormal heart sound, cyanosis (a bluish tint to the skin, fingernails and/or lips), fast breathing, poor feeding, poor weight gain, an inability to exercise and excessive sweating.

Incidence, Morbidity & Mortality

Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the #1 cause of birth defect related deaths.
Congenital heart defects are the leading cause of all infant deaths in the United States.
Each year approximately 40,000 babies are born in the United States with a congenital heart defect. thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

CHF

The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
The Children’s Heart Foundation has directed $3 million to 34 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
CHF has established five Chapters and has volunteers in many US states.

Lifelong Disease

Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
There are an estimated 2,000,000 CHD survivors in the United States.
For the first time, more than 50% of the CHD survivors are adults.
10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

91,000 life years are lost each year in this country due to congenital heart defects.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

CHD Research
CHD research is drastically under funded in both the public and private sectors relative to the number of lives the disease affects. In the private sector, only 1% of every dollar received at the major private funder of cardiovascular research goes to any Pediatric cardiac research. Likewise in 2007, the National Institutes of Health's NHLBI (National Heart, Lung and Blood Institute) allocated less than 3% of every dollar invested in research to any Pediatric cardiovascular research.

CHD Research Goal
CHF advocates increasing both public and private funding of CHD research proportionate to the prevalence and impact of CHD

CHD Research Issues:

Focus on diagnosis, treatments, and prevention
Target for maximum impact on changing CHD patient population
Focus beyond survival to long-term outcomes
Prospective Studies
Large scale, multi-center research
Evidence-based medicine
CHD Research Strategies

Lobby on federal level
Increase patient and family research participation
Raise national awareness of cost/impact of CHD research

Current Research:
Click here for a link to a list of current reseach.