Friday, June 26, 2009

What a Dream!

Last night, I had the most realistic dream about Tommy ever. It was also the longest! I dreamed that life had gone on for Tommy and he had aged to what he should be now, which is almost 3. I dreamed he still had the trach, but was otherwise developing normally, including taking his first steps and talking! It was amazing. We laughed, played, went to events together and even snuggled up in bed for a nap together. I loved holding him in my arms again. I loved chasing after him as he ran from me, laughing, even if I was lugging a suction machine! I loved catching him and then rocking him in my arms as he looked up at me with those beautiful eyes.

Life with Tommy when he was alive was a joy every single day. No matter the hard work to keep him alive or the hassles to get the care he deserved, every moment was filled with happiness. He was a happy baby. I wish so bad that the world could have met him individually to know what a happy child he was. He never knew a moment of despair, just love.

To hold him in my dreams is such a blessing and a wonderful gift from God. To see my little boy walking is a miracle. I love you Tommy. Forever and ever.

Thursday, June 25, 2009

Family Time

It was another long, but fun and productive day for us. Our van broke down and we were able to get it out of the shop this afternoon. The catalytic converter stopped up and the van would not start. On the way home from picking it up, we stopped by the cemetery. It had been a few weeks since we'd been out there. I was not having a bad day and I was feeling rather cheerful, but the moment his grave came into sight, I had tears welling up. I sat on the ground, remembering seeing him in his tiny casket and knowing he was right there, next to me. I had to fight the urge to start digging with my hands to get to him so I could hold him again. I had myself a good cry and it was time to leave.

As we left, we passed by a place that Rob and I had read about that had a hidden geocache. We stopped and were able to find it. It was our first find. It did wonders to cheer me up and we decided to pick up the boys and take them out looking for another one.

We ended up in the woods looking for the cache, but we didn't know how to use the GPS program in our phone so we couldn't find it. After an hour of hiking in the woods with the boys (and having a great time) we decided to call it a day. Rob and I figured we could do some research and try again another day.

Matthew and Brandon asked to go the cemetery as well after finding out we had gone earlier. We took them and we sat on the ground by his grave. Brandon took off his shoes and asked if he could walk on the dirt and I let him. As we talked about Tommy, he crouched down and picked at the dirt in frustration. I knew what he was thinking. The same thing I had earlier in the day. He said he wanted to get Tommy out. I told him even if we could, it would just be his body and the thing that made Tommy alive was in Heaven. Brandon then drew a heart in the dirt and asked me how to spell "I love you", so we used our fingers to write "I love you" in the dirt and draw hearts. When it was time to leave, he ran over and kissed the marker and told Tommy he loved him.

Matthew had placed a very large shell on Tommy's grave a few weeks ago. We told him he could go ahead and take it home because we found out the HARD way that any mementos that we leave on Tommy's grave get thrown away by the groundskeepers when they mow. All of the beautiful things that meant so much to me that people had left are all gone. Makes me very sad. Until we can get him a headstone to put the flowers on, everything will just get thrown away. I don't see a headstone any time soon because we have not had a donation to his funeral expenses since Christmas. We still owe a substantial amount to the funeral home. Anyone willing to donate to that fund can donate by either using the link on this page or by contacting Barlow's Funeral Home here in Bardstown, KY directly.

Now back on topic...The boys can't wait to go geocaching again. We ended our day with ice cream cones and the boys watching the moths dancing around our porch light as the sun set. They are now soundly sleeping in their beds. They have day camp for the rest of the summer. I'm sure they will be going in tomorrow talking all about walking in the woods, the GIANT bug we found and looking for treasure. Some photos of our day. Excuse the quality, nobody seemed to want to stand still long enough for a picture.

Matthew in the woods

Looking for the cache

Up in a tree

Scared to get down from the tree!

Big Brother to the rescue!

Brandon was very happy to be back on the ground.

The female Eastern Hercules Beetle we found. Biggest beetle in America and we find one alive by accident. Yes, that is a pen beside it.

Sunday, June 21, 2009

Long Day

It was a long day for me at work today. Not only did I get there early, but we were very busy and it kept me on my feet most of the day. When I wasn't waiting on customers or doing my nightly chores, I was daydreaming about Tommy. It just doesn't feel right if I'm not thinking about him on the 20th of every month. The closer it gets to August, the more I want to put on the brakes. I do NOT want to deal with this! But, I suppose by blogging, that is exactly what I am doing. Dealing in my own way by uncorking my feelings all over the internet.

I wore my CHD awareness ribbon pin tonight. I cut a tiny red heart out and wrote Tommy's name on it and stuck it to the pin so his name would show. I wore it all night and out of about 300 customers, only 1 asked "who's Tommy?". I am so happy she asked. It let me say proudly, "He's my son. He died 10 months ago today of Congenital Heart Defects." And with that, I brought a tiny bit of awareness into another person's life.

1 in 85 children will be born with a CHD. More babies will die in their first year of CHD that all forms of childhood cancer combined. Surgical intervention to "repair" a child's heart can reach the millions in just a couple of years-or less in some cases. Heart defects do not discriminate. There is no known cause or cure. Very little research, even less awareness!


Almost 3 years ago, I gave birth to a beautiful little boy that I only got to hear cry naturally ONE time. I watched him stop breathing when he was just a day old and had to step back as a team of doctors and nurses brought him back to me. I saw him open his eyes for the first time when he was 6 days old. I never held him without him being attached to something to help him live. Oxygen, trach, feeding tube, pulse oximeter, apnea monitor...wires, wires, wires.

I watched him struggle after not one but two open heart surgeries. Neither one was able to fix his heart because my sweet baby's lungs were too sick. He was born too early and there was nothing anybody could have done differently. Heart needs the lungs, lungs need the heart and neither could sustain my baby.

One weak little cry and fear in his eyes as he took his last breaths. The constant beep, beep, beeeeeeeeeep of the monitor as it flat lined and wouldn't stop until I turned it off. I shut off that stupid machine. I told the doctors and nurses my baby's medical history as they worked on him, trying to save him. I stood right there and watched EVERYTHING! I was two feet from my baby and watched it all! I watched three different people exhaust themselves doing CPR, two different people breathe for him. Begging PLEASE, GOD PLEASE let them stabilize him so we can get this heart surgery over with. I had no doubt in my mind that Tommy would be okay after cheating death so many times in his short life.

Being born 7 weeks early with part of his heart missing.
Stopping breathing in the NICU as I watched.
Coding at 4 weeks old.
Developing serious infections in is bloodstream, fluid in one lung and the other lung collapsed, all in one day, just a week after open heart surgery.
Being told he had chronic lung disease and we could not proceed with any more heart surgeries. That there were no options.
Surviving the flu twice in a 2 month period.

Surely, my baby would not leave me??? But leave me, he did. His body could not go on after all it had been through. Some thing I have never shared...according to his autopsy, Tommy was in heart failure. Could he have been listed for a transplant? We will never know. Had he not contracted bronchopneumonia maybe the heart failure could have been caught in time and he could have been listed. Would he had made it to the top of the list and would a heart have been available? Do I ponder these questions every single day? Yep.

There's no moving on. There's no getting over it. There's no hearing "he's in a better place". Sure, I believe he's in Heaven, but that doesn't stop my arms from aching and my heart from being shattered and never fixed again. It doesn't bring back my little boy. It doesn't stop the tears that fall. The love never stops and truth be told, the hurt only gets worse as the days go on.

Tuesday, June 16, 2009

There's Going To Be Some Changes Around Here

Yesterday, Rob was finally able to get in to see his new cardiologist. I've never met anyone like him in the medical profession, and I've met a lot of medical professionals! When Rob saw his doctors at MUSC, he was told his congestive heart failure was caused by his sleep apnea. Wear a CPAP to bed, lose 20 pounds, eat a low sodium diet. End of story.

However, his new doctor is telling us that for JUST apnea to cause his heart failure is nearly unheard of. Very rare. He is starting Rob's care over again. He got an echo yesterday and has ordered a CPAP trial for Rob. He also told Rob that he needs to lose 75 lbs or he will be dead before he's 50. We've never heard that before! When I told the doctor we were applying for disability, he urged us to do so. Not for a check, but for medical coverage!

As of July 1, we are no longer able to get Medicaid and my job does not offer private insurance. The kids will be covered under the K-CHIP plan, but as adults, Rob and I don't qualify for any type of coverage.

It is imperative that Rob lose weight. He's been on a low sodium diet for over a year, and in my opinion, didn't eat that much to begin with. I don't know what it is going to take for him to start dropping the weight, but we've got to do something! I know it will help if he and I start walking again. Even to the mailbox and back. For those that have not seen our driveway, walking to the mailbox IS a workout! We're also cutting all soda out of our lives. I secretly think this is the culprit, and it was NOT a fun time when I told Rob I thought soda was an issue. But, he gave them up right then and there. He doesn't LIKE the changes, but he's doing them anyway.

I plan to be right there with him. Every step to the mailbox and salad for dinner. If it's good enough for him, then it's good enough for me. I could stand to lose a few (okay, way more than a few) pounds myself, and I really don't think it's fair Rob suffer alone. We can do this. It will be hard, but I'd rather go through this than be a widow in 15 years. I might be blogging my frustrations more often because I know this is going to be a struggle for both of us. But the end result will mean both of us are healthier and we will both live longer. We want to grow old together and watch our kids grow up and have kids of their own. Life doesn't need to be cut short over something we can do.

His heart will always be failing, but if he takes care of himself, he can extend his life. He needs to find a balance between taking it easy and still burning calories. He returns to the doctor in two weeks. I'm hoping to have lost 10 pounds each by that time.

Day 1.

Thursday, June 11, 2009

Here comes the rain

It's clouding up outside and looking a little ominous. Good thing we had our fun outside last night! When we lived in Charleston, we had a patio set but hardly used it because it was either too hot or I just couldn't get outside with Tommy. We ended up somehow leaving the table in Charleston, but the chairs and umbrella made it here.

We've been looking for another table because the umbrella needs something to hold it upright. Last night, I asked Rob if he could just use a small table we have and cut a hole, then maybe we would get one of those umbrella stands to fill with water. Not so! My genius of a hubby came up with an awesome idea! We had some leftover PVC pipe laying around, so he cut one end off at an angle, pounded it two feet into the ground, then inserted the umbrella. Worked like a CHARM!!!

Last night, the kids and I pulled our chairs up under the umbrella while hubby hung clear lights on it. He's great about finding a deal and had picked up the lights at Goodwill a couple months ago for a dollar or two, brand new, still in the box. The kids brought out the radio, and at dusk, we lit up the lights, listened to the music and the kids caught fireflies (thanks to the nets Brandon got for his birthday!). And since it's me, I took pictures of it all!

Click on the picture and look closely. There's a lightening bug in there!

The boys enjoying being outside.

I think it looks great! Rob did a great job!

Sunday, June 7, 2009

Brandon's Birthday

Sorry I haven't blogged for a while. School just got out and we are all adjusting to the new schedule. Thursday was Brandon's birthday. Since last year, and to be honest, the past couple of years have not been the best birthdays for Matthew or Brandon, I decided this year to make them extra special.

Brandon's favorite place in the whole world is McDonald's. So we made a homemade cake, grandma brought the balloons and off to McDonald's we went to celebrate my little guy turning 6. The manager saw the balloons and brought him a brownie sundae and had the entire crew sing him "Happy Birthday". How awesome was that???

We had a great time and it was the perfect party. Enjoy the pictures!

Could you ask for sweeter kids?

Making his wish

He wanted a Spiderman cake and he was thrilled with what we came up with.

Enjoying his brownie sundae.

Presents and balloons from Grandma!

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries