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.

Friday the 13th

So today is Friday the 13th. You know, ever since the class bully got chicken pox on that day way back when I was in the 3rd grade, I have never had an unlucky Friday the 13th. I'm hoping for a bit of fun today!

My day started as usual. Oversleeping, haha! I was up until 2 in the morning updating my resume and applying for jobs. I got a little carried away and stayed up much later than I'd planned. The boys missed the bus by about 10 minutes, but it wasn't a big deal since we live just a few miles from the school. We dropped them off with plenty of time for breakfast before the first bell.

Rob is heading to the doctor this morning. Nothing wrong, just a routine check up of his heart. Once that is done, I'm hoping we can get a couple of errands taken care of before the boys get home from school. They both had such a great time doing their Valentines last night after homework. Brandon's class is having a party, so I sent in cookies with him. Matthew's class may or may not have a party. The teacher sent home a classroom list YESTERDAY but with no instructions about sending treats. I'm sure no matter what goes on today, both boys will have a great time.

Hmmm. Maybe I can get them some goodies while I am out today and surprise them with their own Valentine's party tomorrow. I can pick up some red food coloring and make them red pancakes for breakfast. Better just get a box of coloring...we always have green pancakes on St. Patrick's day and it's just right around the corner. I will make them Valentines tonight after they are asleep and leave them each a little treat for when they wake up. They'll be so surprised!

I already gave Rob his Valentine. I got him a much needed new razor and his favorite Axe body spray. He was so happy! We've been getting him the generic plastic razors, but he needs to use the entire bag of them in one setting because his beard comes in so thick. Then he ends up nicking himself. NOT a good plan while taking Coumadin! So I invested the $7.00 for sharper, sturdier blades.

Lastly, please, please remember that this is CHD week and tomorrow is World Congenital Heart Defect Awareness Day. Please wear Red AND Blue...or purple to show your support. I know red is the "heart" color, but the symbol for heart defects is red and blue to represent the red and blue blood that mix in a heart baby's body.

Comments

Hey people! This is MY blog about MY life! This is the internet, if you don't like then don't read it. I'm sorry so many people feel like all of this is my fault for not taking a job at McDonald's. News Flash....they're not hiring either! You don't know me, only what I write. I also see you've both left the comments anonymously. Are you afraid you'll hurt my feelings if I knew who you were? Honestly, I don't care. I'll just turn off the comments and keep blogging about my life. Don't read my page if you don't like me.

The world is full of different people. Not all of us fit into your cookie cutter ideals. I have every right to brag that my husband bought me that lamp. I have every right to be impressed and happy that he cares about me. It wasn't a luxury item, it was needed. I needed a lamp beside my bed because I have a hard time seeing when the light is dim. He bought it at the flea market for goodness sakes, not that any of you bothered to think of that.

This blog is my outlet. I may whine, cry, bitch, brag, whatever I please. That is what it is for! It is only a small portion of my life. What do you want to hear about? That I put in job applications every day and never hear back? Or the one job interview I had lately had 150 other candidates for the same position? How about the factory I was about to apply to laid off 200 employees, now all looking for one job just like I am.

My kids are fed, we have a roof over our heads that I am very grateful for, and my family had some sort of happiness that we deserve. I don't need any ones approval for that. Not some person on the internet looking down on me that doesn't even have the guts to post their name. And so what if I did know who you are. Unless this was posted by a member of my family, YOU DON'T MATTER. So come on, fire away, lets here what a terrible person I am for being human. I don't give a shit what you think about me. I will keep blogging about my life just the way it is. Good, bad, happy, sad, pissed off, depressed or just want to get my thoughts out of my head.

Valentine's Day

In the past, Rob was never the type to make a big deal out of girly holidays. You know, birthdays, Mother's Day, and the big one...Valentine's Day. I tried to be the strong silent type and suck it up. Usually I cried myself to sleep after he fell asleep so he wouldn't know how disappointed I was. I tried hints, I flat out told him what I wanted, it was just that it wasn't important to him, and as the years went by for us, we grew further and further apart until our own personal wants were being fulfilled before we were considering each other.

Then Tommy died. Even though we have other children, and they are important to us, Tommy consumed us. He was our world and everything in our lives revolved around his beaming presence. Life with Tommy was chaos. Everything we did had to fit with his needs. Whether it was going to the store to buy groceries or just taking a nap. Everything had to be coordinated and supervised. Forget holidays. We were lucky to remember our names after a hard day with Tommy. The first half of the year was hard enough by itself. Surgery and bronchs for his esophagus to try to correct his swallow. Illness that landed him in the ICU. More surgery, this time on his trachea to open his airway. More bronchs. Tommy was hospitalized for something once a month.

Then came the second half of the year and we were slammed with Rob losing his job and the death of our beloved Tommy. Our marriage suffered. We stopped living as husband and wife just to deal with Tommy's needs. I had not slept in our bed for over a year because I had to sleep next to Tommy in case he stopped breathing or needed suctioning at night. His room was too far from ours, so I slept on the couch outside his door. When he died, our marriage had nothing left to hold it together. I truly felt I lost Tommy and my husband on the same day. Rob was suffering as much as I was, but he could not turn to me in his grief. So we both grieved alone. It was the most heart wrenching time I have ever been through in my life.

We did briefly separate. We even looked into a divorce, but in the end, we found our way back to each other. We started grieving and healing together. We put the broken pieces back together. Life became different for us. So very different. Life didn't feel like it was hopeless anymore. We had lost everything and yet, we found each other again. We shared the heart walk together last week. We hold hands every day now. We've decided that life is too fragile and precious. We don't take anything for granted anymore. Every second of our lives together and with our boys is a gift. Rob has asked me to be his wife again. We never officially separated or signed any papers, but his asking was an affirmation that we still want to spend the rest of our lives together. I said yes.

Two days ago, we got into an argument. I had been looking for a small touch lamp for our bedroom for weeks and could not find one that I liked. I finally spotted it at a flea market and was prepared to buy it. As we walked around the building, I asked him to stop and look at something with me and he told me no, he didn't feel like it. For whatever reason, I got my feelings hurt and told him to forget the lamp and that I was going to wait outside. I started feeling that maybe it was too good to be true, that our marriage was in trouble again. I was scared and angry. We had a flat on the way home and working to get that fixed added to my already stressed out mood.

The ice storms had knocked out power here for 10 days and we had been on our way home for the first time since. We stopped at his grandparent's house to pick up our things. Rob went ahead to our house to turn on our main breakers so our heat would come on. We went out to get something to eat with his mom, and then we were headed home. By then, I felt better, but still had that lingering doubt about his love for me. Until I walked into our bedroom. It only took 11 years, but I finally got a Valentine! Yep. He's a keeper.

We had a wonderful time

At the heart walk yesterday! I can't tell you how touched I was by the entire atmosphere. I wish I could participate more than once a year. It was great seeing kids who were survivors and still fighting. Tommy was recognized as an angel not only in the video that played the entire time, but we were given time to do a special walk for him as his name and diagnosis was read as well as when he died. As we left, we released a balloon in his honor.

We wore tee shirts that God's Special Little Hearts graciously provided for us. I knew what we had picked out for wording on the back, but I was not prepared for how great they looked. I was brought to tears. Here are a few pictures from the day.

Rob and me


The back of the shirt says "In Memory of Tommy 9/25/06-8/20/08"


Our family about to release the balloon.


There it goes to Heaven for Tommy!

CHD Week!

Welcome to CHD Awareness Week! Congenital heart defects are the number one birth defect. They take the lives of more babies in the first year of life than all forms of childhood cancer combined. One in about 85 babies will be born with a heart defect. I made this last year for CHD awareness. It means so much more to me now than ever. Click on the thumbnail to play.


Why We Are Raising Awareness