Wednesday, December 31, 2008

Happy New Year!

Happy New Year! I know it will be a wonderful year. I have been saying how rotten that 2008 was, but truth be told, there were some great moments! Tommy learning to say "mama", Matthew and Brandon going to public school, the laughter and the fun we had as a family. The joyous memories that were made. Our family misses Tommy, but we have only good memories of him! I cannot think of any sad times with him. Yes, he was ill, and we had typical bad days that any family would.

I miss changing trach ties and 3 a.m. trips to the ER! All of the hard work with Tommy never seemed like work. I don't know why this year was so challenging, and I wish Tommy were still with us. I am forever changed. My outlook on life has changed. I used to be rushed and precise. Nothing matters so much anymore. We take longer with our errands, we take time to just play around every day.

Our old bedtime routine used to be breathing treatments, medications, moving equipment and fighting with the older boys to just go to bed as I was dropping on the couch at midnight for a few hours of sleep. Now, there are bedtime stories and prayers every night. No fights at bedtime. Life isn't better, is isn't worse. Just different. I miss Tommy's devilish attitude and fighter spirit. But because he is gone, I can now see what I was missing too. Its not a trade off. I wish I could have it all.

2009 will be a year of healing, of raising awareness, of learning about myself and thoughtful meditation. Of loving my husband, parenting my children, and remembering the smell of Tommy's head and the constant twinkle in his eye.

Monday, December 22, 2008

Christmas Miracle

Rob went outside to begin ripping apart the engine to get to the alternator. He had a hunch and tried to start it first. It fired up the first try and ran with no issues for about 10 or 15 minutes! He thinks it was so cold last night that the battery froze up.

In my last post, I mentioned how I can't wait to say goodbye to this rotten year. I'm so thankful that I can update with good news! Life is getting better just a little bit at a time.

I Cannot WAIT

To kiss 2008 goodbye! This has been the year of "what can go wrong will go wrong". Our latest fun is the alternator went out on our van, but luckily, we are safe at Rob's mom with the boys. We were here yesterday for a visit and when we tried to leave, we couldn't. We actually had the van running for about 10 minutes to warm up when it started to die, so thank goodness it died in her driveway and not 10 minutes down the road in the freezing cold with the boys!

So this morning, I am sitting with the boys having breakfast. Brandon, always the creative one, is having his breakfast while wearing Matthew's gloves. When he is done, he's going to watch cartoons and Matthew is going to play computer games. I'm going to take a nap with Rob on the living room floor because we've had only 3 hours of sleep.

Around noon, Rob is going to start tearing down the van so when his mom gets home, we can go pick up the part. We are waiting for it to warm up. As of now at 9:15 a.m., the temperature outside is 6 degrees with a wind chill of -10. That's COLD! I really hope that a belt slipped and we don't have to replace the entire alternator.

Time for my nap!

Thursday, December 18, 2008

Christmas Updates

I wanted to include Tommy in our Christmas celebrations. It's been so hard without him, but the closer Christmas gets, the more at peace I feel. We had talked about putting a tree on his grave, and a few days ago, Rob's aunt found the perfect tree, so we all went together and put it up for him. Here it is.

I miss him more than ever, but the happy memories that we hold in our hearts are filling our lives with joy during our very sad times. Rob's grandmother has a picture of Tommy being held by Santa on her refrigerator. Every time I see it, I am filled with love.

I hope everyone has a Merry Christmas. Rob had a job interview last week. No job yet, but the prospect of him starting after the first of the year is there. We've applied for social services help. So far we have been approved for foods stamps, so at least the boys will have good stockings this year. We hope to have Medicaid and a State check approved by the end of the month. Some income is better than NO income and by getting a check, we will be required to do community service. Looks good on the resume and we might just turn it into something full time.

I feel so very blessed by having had Tommy in my life. I have found that he was a catalyst for so many things that have happened in the past year. I know he was an Angel sent from Heaven to teach me about love, compassion and healing. How I wish I could just hold him one more time though...

Saturday, December 6, 2008


Wow, time is flying by us. Thanksgiving has come and gone and Christmas is upon us. Kentucky is beautiful and we've actually seen a dusting of snow. Tommy never did see snow... I'm sure he's enjoying watching us from Heaven.

Rob and I are still looking for jobs in this horrible economy! Luckily, we do have a warm roof over our heads and food in our bellies. Matthew and Brandon are well and doing wonderful in school. Life has been good to us the past few weeks, despite the challenges we've faced without jobs.

I am hoping everyone that reads this blog will open your hearts and send up a prayer that good jobs will come from all of the applications and resumes we've sent out!

Saturday, November 22, 2008

My Heart Family Grows

Well, the heart issues in my immediate family continue to grow. When Tommy was diagnosed with his CHD, it brought heart defects sharply into focus. Well after his birth I found out my grandmother was born with a heart defect that was repaired as adult. Then my husband developed congestive heart failure. Yesterday, I went with my sister and her daughter to the pediatric cardiologist where her daughter was diagnosed with a mild CHD. Talking with the PC, I also discovered my sister's son also has a CHD. Neither are life threatening, but this is all genetic.

They are 11 and 8 years old. Had heart defects been brought to my attention that long ago, maybe we could have been better prepared for what we faced with Tommy, although I don't think any parent would ever be prepared for the road we traveled with him.

I was a little sick to my stomach and stressed being in a PC office again. I felt empty and alone. I wanted Tommy to be there in his stroller laughing at me. I wanted to see the scowl on his face when the nurse brought out the blood pressure cuff. Oh, how he HATED that thing! I watched my niece's echo with facination. It all came flooding back to me. I peeked at her chart and saw abbreviations and knew what they meant!

When we got to the doctor's office and he began to tell my sister her daughter's diagnosis, all of my knowledge began to simmer at the surface and bubble over. I knew what he was telling her. I knew the medical terminology. I had a hunger to translate and explain what was going on. So much so, that I asked the doctor if he needed a Patient Advocate. I gave him my business card and told him to call me if there was anything I could do for his office. I think I will follow up with a detailed history of Tommy and all of my hospital "experience". I am sure all of the wonderful people that helped take care of Tommy at MUSC would send wonderful recommendations for me.

I don't know what this will lead to, but I plan to follow through with something.

Saturday, November 15, 2008

More Updates

Rob missed the boys so he came home from KS. The job was very stressful for him and he was struggling every day. I have a lot of good job leads and so does he. Monday I'm off to put in more applications. With it being so close to Christmas, surely someone will be calling me soon!

I can't tell you how good it is to have Rob with the boys. They missed him so much!

Sunday, November 9, 2008

Had a Wonderful Weekend!

I have not seen my boys for 2 months and 3 days. I was able to pick them up Friday night and we've spent the entire weekend together! They've had a great time playing with their cousins, watching movies and making s'mores in the microwave.

I've enjoyed cuddling Brandon every night. I loved watching Matthew getting chocolate all over his face last night. I have listened to Brandon say his ABCs and counting to ten! Matthew has been a big helper and both of them are just a sweet joy to be around.

I can't wait to get to a place where we can all be together and settled as a family again. Rob called about 20 times a day to check on them and ask me how they were doing.

They've both brought up Tommy to me. They miss him. Matthew is in a grief group at his school. I hope we can find a way for Brandon to be able to talk to someone (professional) too.

Thursday, November 6, 2008


What a whirlwind this has been! Rob expanded his job search nationwide and was able to secure employment in Kansas. I am home in KY and looking for work. I'm also being treated for my long battle with depression.

Our goal is to have a transition period for our boys. If I am here in KY with them, they can keep their familiar surroundings while getting to know me again after not being able to see me for two months. Then, when our income taxes come in, we can move the family to Kansas with Rob for a fresh start in a brand new place. That being said, if for some reason this job doesn't work out or Rob decides KS is not where he'd like our children raised, then there is the option of just staying in KY.

It is all very much a day to day thing. The important thing is that we are moving forward as a family, one day at a time. We are still struggling, but once Rob starts getting paychecks and I can start a job, things will start to feel less constricting.

I have an appointment this morning with my counselor, and then I am putting in job applications until my sister gets out of work and can pick me up.

I also want to thank everyone that donated to helping get us to KY. From now on, any money donated with go directly to funeral expenses and eventually a headstone for Tommy.

Sunday, October 26, 2008

Another Gift From Above

Early this morning, I was going through some old files and videos I'd made of Tommy. Imagine how happy and stunned I was to find this:

It's Tommy at 5 months old wearing a NEMO onesie! How incredible. I had forgotten he ever had it. I gave away many of his clothes a few months later after he outgrew them and never thought of them again. What a pleasure and a treat to find this after I had been sharing his memory with a new friend of mine online.

I hope you enjoy Tommy's hello from Heaven as much as I have. What a blessing.

Friday, October 24, 2008

I Had A Dream About Tommy!

First, a short update. Things are still pretty much where they were last time I updated. I did some testing at a temp agency and found out that I can type 143 wpm with zero errors. That was a confidence booster. I can't wait to have all of this hassle behind us. I can no longer donate plasma. I infiltrated my veins. HUGE bruises. I couldn't move my arm for two days. Oh well. Maybe in a few more weeks, but not anytime soon.

Thank you to those who have donated to both of Tommy's memorial funds. I put the account number and mailing address to the Memorial Fund bank account. Please make checks to the Tommy Dereksen Memorial Fund with the account number in the memo line. You can also donate directly with the paypal button. They are two different accounts, it just depends on how someone chooses to donate.

I know the economy is bad all around. We are definetly feeling it and its NOT a fun place to be. I hate not having a job! I hope things turn around soon for not just us, but for the entire country.

I do want to share a dream I had last week. I dreamed that Tommy's doctors told me that there was no hope and that we should take him home for his last day of life. They took out his trach and stopped all of his medications. We took him home and held him for awhile then put him to bed. The next day he was still alive, and the next and the next! The doctors said it was a miracle. He was completely healed.

I woke up looking for him because it was one of those dreams that just felt so real. It was so comforting to hold Tommy again, to be able to kiss him and hear him laugh. I know he was reaching out to me from Heaven so that we could spend a little time together. I miss him so much. It's been two months since he left us. It doesn't get any easier. It does change from day to day, but I still feel the emptiness every single day.

Wednesday, October 15, 2008


Thank you to all of the kind people that left encouraging comments for me. Sorry to take so long to update, but we no longer have internet. Although I don't feel I owe anyone an explanation, I do not want anyone to think I am using my son's memory for personal gain. Posting asking for help was a last resort. We ARE selling off everything we own, but have not had any takers as of yet. We DID cut out all necessities, as I previously stated, we no longer have internet.

My husband and I can work, we just can't find jobs. We have applied in person, online, temp agencies, unemployement office, you name it, we've tried it. I'm even donating plasma twice a week. Anyone that has followed my blog long enough will also know that my husband, Rob, has congestive heart failure with atrial fibrillation and has to be very careful about what type of work he does. He's not "sick" enough for disability, but not well enough to do hard labor either. Just kind of stuck in the middle. Any of you heart parents will know that heart conditions limit what a person can do.

We are not trying to live off of donations. We merely wanted to be able to come up with enough money to rent a truck and pay for that gas to go halfway across the country so that we can reunite with our children and start our lives over again.

Now and always, we will do "whatever it takes" for our family. That includes begging for compassion from anyone that reads this blog. Everyone is entitled to their own opinions, I respect that, but please, don't belittle me for trying to get home to my children by any means possible.

Wednesday, October 8, 2008

Memorial Fund

A wonderful Angel who has heard of our story suggested to me that I create a Paypal button to gather donations. I never knew such a thing existed! So, I have created the button. Here it is

I cannot tell you how much I appreciate the wonderful people out there who are reaching out to Rob, our boys and me in our time of need. I never knew we could be this far down. We not only have our current expenses, but still have a $6000 funeral to pay for, plus finding an apartment and the moving in expenses once we return to Ky.

This has been such a strange few weeks. Before Tommy went into the hospital on July 17, 2008 I had a happy family, a home and a wonderful outlook on life. That month he was in the hospital was the longest he had been away from home since he was born. It was tough, but we were dealing with an infection in his trach. Once that was cleared up, it was decided to proceed with a tonsillectomy because Tommy needed the extra room in his airway. Once he was recovered from that, he began wearing a cap over his trach. That was going well until the morning his surgical site came loose and Tommy began to spit up blood. (Laughing all the while and frightening his nurses!) He was taken back into the OR and the site was cauterized. Two days later, we went back to capping his trach.

Tommy did so wonderfully! We even weaned him from his oxygen for the first time in over a year. I sent my sweet baby to the hospital sick, and there he was, sitting up in his bed proud as a peacock with NO oxygen and breathing with his nose for the first time since he was born. What a miracle. A week later, Tommy was on his way home for the first time with NO trach, no oxygen, no equipment. We were elated. It was a wonderful two days...

Then Tommy began having trouble breathing. It was Thursday night, August 14. Tommy began having a grunting/barking breathing. It was horrendous, but it was the middle of the night and the hospital seemed so far away. I gave him breathing treatments, chest percussions, and finally ran the hot shower while I rocked him on the bathroom floor. After an hour, he finally began to relax and sleep. He was still breathing fast. It was about 4 in the morning when I put him back to bed. Shortly thereafter, Rob would go in for his last day of work.

At noon, Tommy woke up. He was fine. Wonderful, playful, just a little tired. I sat him on the living room floor and began his feeding. (Tommy ate by feeding pump) A few minutes into it, Tommy began having the same difficulty breathing. I called his ENT's office and was instructed to bring him to the ER. We got there and Tommy's sats were about 53% and he was having a terrible time breathing. He was poked at least 4 times in each arm (at the same time) trying to get a good stick on his poor little veins. When you've had as many IV's as Tommy, finding a good stick becomes a game of hide and seek. Once the IV was in and oxygen going, Dr. White, Tommy's ENT came in with the trach. Yep. It went back in. Tommy took a huge breath and looked up at Dr. White with a huge "thank you" in his eyes.

For the next two days, Tommy slept. It was so unusual. He NEVER slept! He was superbaby! I told all of his doctors something was wrong. They did chest xrays, blood samples, everything was normal for Tommy. I was told he was depressed. Whatever! Tommy was falling asleep sitting up. He was NOT depressed! I knew something was wrong, but I didn't know what. The doctors didn't know either. His heart sounded fine, his last echo a month before was great, what was going on? He began needed oxygen again for a few hours at a time. This went on all weekend.

On Monday, Tommy started to perk up a bit and I chalked it up to exhaustion from trying to breathe without his trach. His ENT thought Tommy needed more practice before we took it out, so we were told we could cap again soon, but Tommy kept needing oxygen occassionally, so we had to wean him from it first. On Tuesday, Tommy was taken for a GI test and a swallow study. The GI was perfect, but the swallow study left us all stunned and depressed. The aspirations that Tommy had surgery to correct a year before were now back. With a vengence. How long had he been aspirating?? He was just getting good at eating, now we find out we have to stop. Whatever was best for Tommy, we decided.

On Wednesday August 20, 2008, Tommy woke up desatting and needed a boost in oxygen again. It was thought he had a mucous plug in his lungs, so the respiratory therapist did a dangerous deep suction. He did get back some junk and Tommy improved. Mystery solved? I wasn't so sure, but it worked. That afternoon, his speech therapist came by and gave Tommy colored sterile water. It would help him remember how to swallow but would not hurt his lungs. He coughed blue out of his trach. Aspirations. Afterwards, he had PT where he got to bounce on the exercise ball. Tommy's Favorite! He signed "jump, jump" and pointed and clapped whenever he saw the ball. It was a great workout, Tommy was doing fantastic, and didn't need oxygen. We were able to cap him again!

He did great for a couple of hours and fell asleep. He startled himself awake with some rapid breathing that scared me, so the RT and I uncapped him. Then, for the first time, I felt hospital walls closing in on me. I began to feel angry and stressed out about being there, our home away from home. I tried to sleep, but the nurse woke me up. It was 4 pm. Tommy was awakened too. We put his cap back on his trach and for the next 4 hours, we played, watched "Finding Nemo" over and over. Blew bubbles, had kisses and hugs. He was finally back to my sweet happy baby and we were going HOME in two days!

Then, at 8:30 the new RT came in to do a breathing treatment. Tommy began to be anxious and doing the barking breathing again. The RT said it was just anxiety and if it happened after he left to remove the cap. Tommy looked very uncomfortable and I recognized a dirty diaper. I layed him down and began to change him. Tommy was still having the bowel movement and had stopped mid push. His alarm went off and I shut it off. I wiped Tommy up and then he peed on the bed. Alarm again. As I went to shut it off, I noticed Tommy's heart rate was very low. I looked at Tommy and he was blue, limp and his eyes were rolled in the back of his head. I pulled off the cap and put on the ambu bag and bagged him. He took a breath and his heart rate came up.

I lifted him, shook him and got him awake again. He was fine, but I wasn't. I called the nurse and requested a new RT and for Tommy's doctor to be called. She had me sit and rock him while she changed his sheets. Tommy began to desat a little so we put him on oxygen. I tried to suction him and got back blood. I let the nurse know. A minute or two later, Tommy coughed up fresh blood. Not a lot, just about a teaspoon. He was breathing hard, sweating and just looked scared. The RT had me put him on the bed. We turned his O2 up to 100%. He desatted again. He looked at me, let out a little cry and looked at me. His eyes. He looked so tired and scared. The RT began to bag him and called for the medic.

It was too late. Tommy went into lethal arrhythmia. CPR was done for 45 mintues. 6 doses of epinephrine were given as well as sodium bicarb and atroven to try to restart his heart. At 10:20 pm, the doctor called for Time of Death and I got to hold my sweet Tommy for the last time, but he was already gone. The sweet baby I was holding an hour before was gone. Part of me left with him. Rob got there as the doctors placed Tommy in my arms. He is so fortunate to not have stood in that room as I did and watch him die. Funny, we had saved Tommy so many times before that I didn't know he was dying until he was gone.

His cardiologist came from home. So did his ENT. Both fought tears and were as lost and troubled by his mysterious death as I was. I invited all of the nurses in the hospital at the time to come say goodbye. They'd been loving him since he was born. There were so many tears that night as we all said goodbye. I kept the gown he was wearing and took pictures of him and the room. I cut a lock of his hair then said my goodbyes.

We laid him to rest in the family plot in Ky.

Tuesday, October 7, 2008


I got your comment but I have no way to contact you. Please contact me at

Sunday, October 5, 2008

Oh the Stress!

Rob and I are trying to pack and put things into storage so that we can go to KY. So far, we have $150. That is about half of what we need to make the trip, and not nearly enough to cover our expenses while we are still here. The oxygen sensor went out in the van, so now we are sucking gas. That is a $50 part. I found out I may not be able to leave for KY until the first week of November, so there is another $140 in storage fees I have to come up with as well.

Rob and I have a court date that we have to attend before we can leave for good. We're trying to get it moved so I can just take a bus to KY and start work, then I can send Rob back the money and he can bring a truck, but if we have to stay and we can't get the court date moved, then we're going to be in some huge financial trouble! Pray something works out for us and I can hop on that bus and start my job asap!

Oh, and pray we can find a place that has boxes. It's been a nightmare trying to find a business that doesn't compact their boxes.

Friday, September 26, 2008


Yesterday was Tommy's birthday. September 25th, 2006 at 11:50 pm, my sweet boy came into the world with a lusty cry from tiny lungs. He weighed in at 4 pounds 3 ounces. 16 inches long. It would be many, many months before I heard that cry again. I guess you're wondering why I didn't post yesterday about his birthday. I just couldn't do it. I had posted to his carepage and a small paragraph to a private message board or two, but I could not bring myself to update here.

It rained all day yesterday. Very fitting. Tommy was facinated with rain. His favorite song was "Itsy Bitsy Spider". I remember a few months back when we got our first really good late spring-early summer soaker I opened the front door to let in the breeze. Tommy watched and watched the rain and all of a sudden, starting signing "Itsy Bitsy Spider", the part of "down came the rain and washed the spider out". He GOT it! He KNEW! He was so proud of himself. I'd forgotten that moment until right now. What a beautiful memory.

I stood on my porch and blew bubbles for Tommy. Off to Heaven they went for him to pop with his little fingers. I waited until 11:50 pm and then sang/cried "Happy Birthday" for him.

I didn't make a montage for his birthday this year. I do love to look at all of his pictures, but it would be so hard to glean just a few memories out of the literally thousands and thousands that I took in the past year. So here is a montage from his first birthday instead. Followed by pictures of his first and only birthday party.

Montage of Tommy's first year

Tommy's First Birthday Party

Tuesday, September 23, 2008

Get Me Home!

I have been praying this evening. Tearful, tearful prayers. Rob and I have been looking for work to no avail. Today, our hand was forced. Pay or get out. I have about 7 days to come up with about $700 to rent a truck and pay for gas. My sister called me today and her boss offered me a job out of the blue, all I have to do is get to KY. How is it that I cannot find work in South Carolina and I have one waiting for me back home in Kentucky?

I know God has a plan for me now that does not include living in South Carolina. I belong home in Kentucky. Near my Tommy. Rob and I started packing today, but we have no job leads and therefore no way to get home.

This is my only hope. I have a paypal account at Please, please, help me get home to my family! If there is anyone in South Carolina reading this that wants to take over payments on our trailer, please email me or leave me a comment.

I want to go home so badly. I miss my mom. I miss my 4 sisters and my brother. I miss my neices and my nephew. I miss my BOYS! I need a fresh start. I need to get back to my home. I need my family around me right now. I am grieving Tommy more than ever. His birthday is Thursday and it's going to be such a rotten day.

This IS the answer I have prayed for. I feel so ready and so free. I can almost hear the truck pulling into my driveway.... I want to go Trick or Treating with my boys. I want to spend the first Thanksgiving with my family in 8 years. I want Christmas with snow.

Send me home.

Saturday, September 20, 2008

One Month

Hard to believe one month has gone by. In 6 more minutes, it will be exactly one month since my sweet baby boy left this Earth and went to play with our Heavenly Father. My heart is so heavy and some days are harder than others. Today was a hard day emotionally, but it was more about confusion than actual sadness.

I went to the American Heart Association Heart Walk today. I expected to honor Tommy and to have a peaceful day remembering him with others that loved him. It was NOT that way! Although I didn't cry, I almost did many times. I felt so lost. Not ONE thing was said about those that have lost their battle. I was so disappointed. I don't know what is going to happen next year, but if I ever participate again, I will make it my business to have an Angel table set up. We need to remember why we are in this fight to begin with.

The time is now 10:20 pm. Exactly one month ago at this moment, my sweet Angel Tommy lost his battle with Congenital Heart Defects. He fought courageously and that needs to be remembered.

I love you, my sweet baby. I will never forget you.

Thursday, September 11, 2008

Baby Steps Forward

It's been 3 weeks and one day since my precious son was in my arms. I have tried to grieve, and the tears come only when I least expect them. They don't last long and most of the time, they just run down my face without a sound. I've been spending some time alone in the house, but I tend to just stay in my room.

I've gotten a few things packed up to send out to another family. I need to take them to the post office to weigh. I'm glad another family will benefit from his medical supplies, but I'm having a hard time figuring out what to do with things like his high chair, exersaucer, and carseat. I want them to go to another heart family who may not be able to afford them. I think it's time to call the hospital and talk to the nurses and social workers.

I had a job interview yesterday. I'm waiting for the background check to come back, but it's looking like I'll be starting next week. It's bittersweet. I worked there early in my pregnancy with Tommy and had to quit to go on bedrest, then found out a month later about his heart and knew I'd never be able to work there again, at least as long as Tommy was sick. Never did I think I'd be going back because Tommy was gone.

I got really angry today. I'm so upset that all I have left of Tommy are pictures. No baby to hold, no hair to rub, no baby kisses, no baby hugs. Just pictures. I miss him so much. I want my baby back in my arms. I'd do it all again for him. I'd sacrifice my life again and go through all of the pain and lack of sleep just to have my Sweet Tommy back.

Monday, September 8, 2008


Sunday, September 7, 2008

New Chapter

Rob and I are headed back to Charleston today. His mom has our older two boys, so Rob and I will be alone for a few weeks. What a strange time. I've always had a child by my side for the past 17 years. This is a new experience and I've got so many mixed feelings. Sure, it's going to be nice having alone time with Rob and not having to deal with fights and whining, but on the other hand, I'm going back to that empty house with all of Tommy's memories. I don't know how I'm going to deal with it all yet. Since he died, I have not had one moment alone to just let it all out. Once I'm there alone with my thoughts, I'm sure the tears will just flow and flow until I can't cry anymore.

I have not greived him. I know he's gone. I've been back to his fresh grave site and seen it with my own eyes that he is no longer here, but in the back of my mind, I can just pick up the phone and call 7C and hear him in the background flirting with the nurses. Oh, how I miss those baby kisses of his! I have TONS of video and pictures. I'm in process of burning them all to CD and eventually, I will upload them all up to not only youtube, but will have them made into a montage of his wonderful, short, miraculous life.

Please feel free to read back over the past year here on our blog, and our carepage, where I kept up with all of Tommy's medical experiences. It is a free website, but you do have to register. This just gives you the ability to access the page. You'll also get an email if I ever update it. It is and his page name is ThomasLeeDereksen (no spaces). The AHA Heart Walk is coming up in a couple of weeks. I'm participating, but I will be SOOOO emotional. It's going to fall on the one month anniversary of his death and just 5 days before his birthday.

Please keep us in your prayers as Rob and I begin this new chapter in our lives.

Tuesday, September 2, 2008

We Need Help!

Tommy's memorial fund has been set up to help us deal with funeral costs, as well as helping us with transportation costs, lost income from being here to lay Tommy to rest, etc. There have been generous donations made, and I'd like to thank each and every one of you that may have contributed.

But there is still so many expenses! We have been relying on Tommy's SSI every month to pay for our living expenses in South Carolina and until I can get back and start a job, we have NO income! We are trying to meet these expenses as well as cover the funeral and eventually purchase a headstone for Tommy. Every little bit will help us. Please, if you can, donate to Tommy's fund. Here is the information. Feel free to pass the information along with Tommy's story to anyone that you think might want to help.

Thank you all so much!

Account #2006015960. Those here in SC can go to any First Federal Branch or can be mailed to: First Federal, PO Box 118068, Charleston, SC 29423-9910

Saturday, August 30, 2008

Laid to Rest

Tommy is now resting in peace. His service was simple and beautiful. I spoke, but I cannot remember what I said. Since my dad was ill, he couldn't be there so we made a video. I plan to watch it eventually to remember what I said. The minister spoke about how Jesus wept when Lazerus' family wept over his death. That He felt their pain and sorrow. It was comforting.

We had an open casket service with Nemo balloons nearby for him. He looked so big! It was so strange because he looked like an oversized 6 month old. We realized he was still a baby in so many ways, not a toddler, which he should have been. I touched him several times during the visitation, rubbed his soft hair and kissed his forehead and cheek. God gave me a small miracle at the funeral...they had everyone leave so Rob and I could say goodbye privately. I stroked his cheek to find it was soft! I was able to kiss his soft baby cheek one last time! I'm so thankful and grateful for that moment.

At the cemetary, we had just a few simple words and a prayer. Then we ALL blew bubbles for my sweet baby Tommy. We had a bubble machine going and everyone had a small bottle of bubbles. We had regular helium filled balloons besides the Nemo ones. There were 11, so Rob, our families, friends and I all stood in a circle and let them go at the same time. We watched until they were in Heaven with my baby.

After we had finished picking up everything at the funeral home, our families and friends went to the park for a picnic. I was really in no mood for a stuffy restaurant or being cooped up at someone's house. Plus, the boys needed to run and forget for a while. Then we drove the boys down to my hometown about 30 minutes away and found out that there was a festival going on, so we took them. It was a great diversion and helped us move on as a family of 4 instead of 5.

I'm sure when I get back to South Carolina, that the day to day tasks will bring on the tears. I'm kind of in that numb, denial phase right now. I know I've had closure but I still feel something deep down inside that's stuck and won't come out.

A few pictures of his flowers and balloons.

Thursday, August 28, 2008


It's almost time for us to leave for the funeral home for Tommy's visitation. It's going to be a long evening, and tomorrow is going to be an early start followed by another long day.

In the CHD community, you hear the songs and read the poems. This one is so touching and beautiful. I've decided to have this played for Tommy at his service tomorrow.

Tuesday, August 26, 2008

Funeral Services for Tommy

Tommy's services have been scheduled. Visitation will be from 4-8 pm Thursday and the service will be at 10 am Friday at the funeral home followed by him being laid to rest in Bardstown cemetary.

Barlow Funeral Home
2675 E. John Rowan Blvd
Bardstown, KY 40004


Sunday, August 24, 2008


I wrote this piece this morning for a private message board I belong to. Reading over it again, it seemed so appropriate to share with everyone who loved Tommy so much. I hope in the next couple of weeks to be able to share his passing and our continuing journey as a heart family.


It's been such a short, short time, but I've felt Tommy's presence so much that I'm starting to let myself feel peace. There are still moments where it hits me like punch to the gut, but at least now I can talk without just melting into a puddle of incoherent words. Rob and I have spent all of our time together, trying to work through our grief. I'm sure tomorrow at the memorial and again next week at the funeral it will hit me all over again. I'm just taking every second at a time. I've let the boys know that they are allowed to feel any way they want to feel. Matthew is delighted about the memorial service, but he's going to skip the funeral. He wants to go to the family viewing, but the second the minister wants to talk, he said he will need to leave. Brandon spends half of the time blurting out "Tommy's Dead" and an hour later, pointing out a toy at McDonald's and saying that it is for Tommy. I asked him where he thought Tommy was, and he said "the hospital." I told him no, Tommy is in Heaven. I showed him a napkin and told him it was like Tommy's body. Then I showed him my hand. I told him my hand was the part that made us feel Tommy. The part that made him laugh and be happy and the part we love. I put the napkin on my hand and made a puppet, moving the napkin and explained the part inside Tommy made the outside move too. Then I explained that Tommy's body was sick and it was going to stay here and I took my hand away and fluttered it away towards the sky and told him the part that we love and feel went to Heaven. I told him he didn't need his body anymore and that we were going to put it in the ground, but he would always be able to feel Tommy inside. He could even talk to Tommy if he wanted to, and the special place in the ground would be a place we could go visit and remember.

For two days now, every time I looked up at the sky and thought about Tommy or whispered that I missed him, it poured down rain. I felt like the whole world was crying with me, and that Tommy was showing his love right back to me. Late last night, I shared it with Rob. In near shock, he told me the exact thing had happened to him as well. Tommy is everywhere. It doesn't hurt to go to his room anymore, although yesterday was a rough afternoon. The medical supply company came to pick up what belonged to them. Several things stayed. His feeding pump and IV pole that it was attached to (so the feeding bag could hang), his air compressor, his nebulizer and his suction machine. What we can't use for other purposes, we will be donating. I told Rob I didn't know what hurt more, what they took, or what they left behind because now I must find a place for them. We told the boys we would be donating his crib too because its practically brand new. Matthew begged me to keep all of Tommy's clothes and toys. An idea popped into my head right then. I am going to take all of his baby clothes and all of his small blankets and have them made into quilts. There should be enough material to make small ones for each of the boys and for Rob and me.

I'm also thinking about getting a tattoo. I've never, ever considered one until now. It would be small and discreet, but a permanent reminder of my baby boy. My sister is very much into tattooing, so I know where ever she takes me, I will be in good hands. I may change my mind later on, but it's something that keeps popping up in my head.

Last night was a turning point for me. I've been so overcome with grief that I can barely function. I will be so hungry and take one bite and lose my appetite or feel like it's stuck in my throat. Yesterday I ate half a hamburger for lunch and late last night I choked down one slice of pizza. Then Rob and I had a blow up and afterwards, stayed up until 4 in the morning talking and working it out. Right before we decided it was realllly late, I realized for the past hour, we had been laughing and I had not thought about Tommy. It scared me, made me sad and happy at the same time. I felt like I could FINALLY move on just a little. I still have silent tears slip by me.

I've always told myself and anyone that asked me how I ever did what I did for Tommy the same thing. "Whatever it takes". And right now, it takes me trying to be strong. To hold the rest of my family together. To find my comfort and peace as I get through each day. Whether it be by crying, writing, or screaming my head off. Every moment is different. I've played out his death in my head over and over. I've told the story many times. It's freeing. I am comforted knowing he died in a hospital room while I watched every possible thing being done for him. There are no questions or self doubt. If Tommy was meant to live, the doctors could have saved him.

But he wasn't mine. Tommy was an angel on Earth. Every breath he took and every beat of his heart was a miracle. He has taught me so much about how to endure when I don't think I can go on. Tommy always went on, no matter the struggles. It would be an insult to his memory for me to not do the same for him.

Thursday, August 21, 2008

Services and Memorial Fund

Funeral services are pending, but will be held next week at Barlow's Funeral Home in Bardstown, KY. A memorial Service will be held Sunday at 1pm at Midland Park Ministry Center, 2427 Midland Park Rd, North Charleston, SC 29406

Two memorial funds have been set up in Tommy's name. One is at the funeral home, but I don't have any information on that yet. The other was set up here in Charleston by our Family Advocate. Here is that information.

Account #2006015960. Those here in SC can go to any First Federal Branch or can be mailed to: First Federal, PO Box 118068, Charleston, SC 29423-9910


Tommy passed away tonight. His lungs were so sick and his heart could not sustain him. See his carepage for updates and information about services.

Saturday, August 16, 2008

Not Meant To Be Right Now

Tommy went into severe respiratory distress Thursday night. Friday afternoon he started repeating the behavior and we were instructed to take him to the ER. He was admitted, put back on oxygen and sadly, retrached. Tommy is much more comfortable now. We're staying the weekend in the hospital for observation.

Monday, his ENT will look at his airway and he and Tommy's cardiology team will start making decisions on what needs to be done next. I've been saying all along I'm not surprised, but I'm so very, very frustrated. Words just can't express what the past two weeks have felt like.

Tuesday, August 12, 2008

The Big Day!

Today was the magical day that Tommy got his trach out! Here's a picture and video of the big event.


(video might take a few minutes to get put up on youtube site. If it says not available, check back in a few minutes)

Sunday, August 10, 2008

One More Day

Sometime tomorrow afternoon, my baby may be losing his trach. Dr. White will make the call when he rounds Monday. I have requested he not decannulate until I'm able to get to the hospital. I have a meeting at 9:30 that should only last a short time, then it's off to the hospital with my mother in law and older boys.

I'm scared, nervous, anxious, thrilled and sad. This is a new chapter in our lives. No more machines, no more oxygen, no more suction machine. No more supplies taking up his entire room. He went in the hospital nearly a month ago a little baby with a trach. He's coming home a little boy breathing on his own!

Here he is, showing off his cap.

Friday, August 8, 2008

It's Friday!

We got Tommy's cap today. He's been wearing it sucessfully for almost 9 hours. Our plan is to hang out for the weekend and talk about the trach coming out on Monday. We'll see.

Wednesday, August 6, 2008

What a Week!

Monday: Started capping again and doing wonderfully.

Tuesday: Tolerated capping again and kept it on full time for nearly 24 hours with no issues and NO oxgyen.

Wednesday: Had bleeding from tonsilectomy site and had to go to OR for cauterization. He's fine and doing great, but no cap just yet. It's a bit of a setback, but not by much.

Monday, August 4, 2008

A New Week

Tommy is doing so much better. We saw him yesterday and took him one of his favorite things...bubbles! Check him out trying to catch them.

Today he's back to wearing his modified PMV and a nasal cannula. His nurse is hoping to wean down his oxygen today. I hope that Tommy will be able to wear his cap a little today too. I know Tommy must be delighted to have his voice back. His speech therapist told me that she has been vocalizing with him and he said "more" last week. I can't wait to hear what they work on this week. He's going to leave the hospital a little chatterbox!

Sunday, August 3, 2008

So Frustrating!

I feel like we're doing a dance with Tommy. He's not doing as well as planned with the capping trials. I don't know if it's too much too fast for him or if he just needs practice. The nurses are telling me he desats when he wears the cap. It's so frustrating! He's on oxygen, but when he has the cap, he either has to wear a nasal cannula or just use room air. I just don't know what's going on because I can't be there with him this time. I'm so frustrated with the whole process right now.

Friday, August 1, 2008

More Surprises!

Tommy's ENT (Dr. White) downsized Tommy's trach this morning. Tommy did well, so he also put a cap on Tommy's trach so that Tommy ONLY breathes out of his mouth and nose. He did so well, he was on room air and NO oxygen!

Imagine my surprise when I heard the nurse tell me that Dr. White plans to take the trach out for good Monday or Tuesday! I'm so excited, scared, giddy, HAPPY!

I will be able to move Tommy from room to room without being tied down to 10 feet of corrugated tubing. He can snuggle and take a nap with me if we feel like it. He can go outside. We can go when we want instead of planning trips around how many oxygen tanks we need. He can learn to crawl and be a typical toddler. The dreams are endless now.

We have spent the past 2 years dealing with changing trach ties every morning. Making sure he had enough oxygen, making sure he didn't get a plug in his trach, and listening to machines blowing oxygen and humidity through his trach. Our electric bill should go down now! No more being tethered down to 10 feet of that tubing 24 hours a day.

Our lives have revolved around Tommy, his trach and his machines since he came home at 3 months old. To think he will be able to move freely without a machine attached to him is bringing tears to my eyes. We are so blessed by God and for His wisdom that He bestowed on Tommy's doctors from day one. They let my baby boy live when everything was against him. Now he is thriving and getting his trach out is going to be one of the happiest days I've ever spent with him.

Thursday, July 31, 2008


Tommy was originally scheduled to get his tonsils out on the 25th of July, but when he got sick and had the outbreak of pseudomonas, I assumed it was no longer in the cards. Imagine my surprise when Monday night, I get a phone call from ENT asking for consent! Tuesday around 1:30, Tommy went into the OR and had his tonsils and adenoids taken out. Since then he's been in some pain and has spiked a couple of fevers. He's on Zosyn again and he's had blood cultures taken so we will see what is going on in a few days.

He was quite combative for the first 24 hours afterwards and required Morphine for his pain. It made his poor nose itch like crazy and he needed benadryl. Then he decided pulling out his IV was a good idea. Last night it had to be put back in because the Zosyn is an IV medication.

Today he is in a much better mood and feels more like himself. The anesthesia always does a number on him for the first couple of days. It's nice knowing he's past that and can start healing.

Wednesday, July 23, 2008


Tommy is in the hospital being treated for pseudomonas. It is a bacteria common in trached children (in the trachea). Treatment is IV for 7 days, so Tommy is hanging out flirting with all of the nurses, watching cartoons and having a grand old time. Other than the IV in his arm, you'd never know there was anything going on with the child. He's getting speech daily and PT an OT several times a week as well. We went to visit him last night and he pointed to a giant orange ball in his room and excitedly signed "jump, jump"! I'm guessing he likes jumping on the ball. Don't know how long they will keep him. It's all kind of an up in the air mess right now.

Tuesday, July 8, 2008

Bubbles, Buckets and Being Silly!

A few new videos of Tommy. He's just loving his PMV and all the noises he can make now.

First, trying to say "bub, bub, bub" while Brandon blows bubbles for him.

Next, more bubbles, lots of vocalizing and silly behavior.

Finally, Tommy has discovered that he can make BIG noises with a bucket!

Friday, July 4, 2008

One Year Ago

Do you remember last 4th of July? What were you doing? I was camped out in a hospital room on 7C of Children's Hospital, Medical University of South Carolina. It was a miracle I was even there.

Two weeks prior, Tommy had come to the hospital for a routine heart cath in preparation for his Glenn reconstructive surgery. It did not happen that way. Instead, we would learn that day that he was no longer a candidate for the surgery due to chronic lung disease. We were so devastated! Here was my tiny little guy getting more and more blue as each day went on before the heart cath. His sats were very low when we were admitted that day, between 44-and about 66%. (normal O2 sats in a healthy person are 100%) Tommy was getting very sick, his shunt was no longer big enough for him and he could not have the Glenn. I was told he would be weaned down to 35% O2 and be sent home to wait it out on oxygen. I asked the doctor that day how long my baby had to live with his current shunt. One month. A death sentence.

Tommy was admitted to the Pediatric Cardiac Intensive Care Unit (PCICU) at that time. He was originally going to be admitted to "the floor" (7C step down unit) but because he had to be sedated and paralyzed for the cath, he needed ICU care until he came out of the sedation. This isn't typical of a heart cath, but Tommy's heart is so unique, it made getting his pressures very difficult. He was on about 40% O2 with sats in the low 70's, mid to high 60's. When he was weaned to 35%, he desatted. My heart was breaking. Rob and I actually discussed funeral plans! Tommy was only 9 months old and I was preparing myself for the worst. I told the Fellow that was on call in the PCICU that night that I was just not comfortable with the idea of sending him home for me to watch him go into cardiac arrest and die. I asked her if we could do another shunt. She gently told me with his numbers, he may not live through the surgery.

4 days passed. They were so long and depressing. Tommy was moved to a private room in the PCICU. I spent my days and nights catching naps on a chair beside him when he slept and talking to him and spending every precious moment I could when he was awake. I took so many pictures. The Fellow had passed on to me that Dr. Bradley (Tommy's surgeon) was considering Tommy's case very carefully. Every day he would pass us during rounds and give me a gentle smile. A reminder he was thinking about us, but had not come to a decision. I cannot imagine the weight on his shoulders. Every day, he must make a decision to save a child's life. This time, it just happened to be mine.

Finally, the day came when he stopped in our room. He said he would attempt to do the Glenn. It was not without risk. If his lungs could not tolerate the pressure, Tommy would go back into surgery to have it taken down. Then we would be back to square one. We discussed the possibility of upsizing his shunt if his pressures were not good once Dr. Bradley had begun the procedure. Tommy was scheduled for first case the next morning. I took a short nap until about 3 in the morning, then returned to his room to help with preparations to take him to the OR at 6. My favorite memory during that time was that Tommy was given Versed to calm him so that his nurse could start an IV. Tommy got the giggles. Even as the nurse was sticking him, he laughed his little head off. It was nice to see him like this, knowing in a few short hours, his life would be in jeopardy as Dr. Bradley made that first incision.

Tommy ended up having his shunt revised to a slightly larger size. During the surgery, I was given a pager and got text alerts on the hour about how surgery was going. Originally, the information given to the nurse handling the texts was told Tommy was having the Glenn. We didn't know until surgery was over that he didn't. Dr. Bradley told us he started the Glenn and announced as such, but as he did the surgery, things didn't look good, so he went with the shunt instead.

Tommy spent about 4 days in PCICU after the surgery and moved to 7C. I watched the fireworks from his window that night thinking Independence had a whole new meaning for Tommy. He was free from the death sentence that had hung over our heads for those several horrible days. He went home a couple of days later on 30% oxygen that was later bumped to 35% which he is still on today.

One year later, Tommy saw his cardiologist yesterday. Once again, we discussed Tommy having a heart cath and the possibility of surgery. There are no answers yet. It might be a couple of weeks until I hear anything. Tommy is doing very well. Today will be the first time he ever sees fireworks. What a bittersweet moment it will be! Every day of Tommy's life is a fight, but he makes it look so effortless. He is my miracle.

Tuesday, July 1, 2008

Tommy Said His First Word!!!

Yes, I cried! He signs "mama" at the end.

Monday, June 30, 2008

CHD Book, take 2

Vanessa has entered the CHD Book in a contest. Please go check it out and VOTE! To vote, please click on the little "people" icon ("view on slideshare") at the bottom of the video and view it on the site. You can vote there.

Sunday, June 29, 2008


New Tommy. We love hearing his voice and he such a happy little guy all of the time. I love playing with him.

Friday, June 27, 2008

No More Homeschooling

We've come to the end of our school year. It's very sad because we've decided to send the boys back to traditional school next year. It's been a very tough year and we've not been able to keep up as well as we'd like. It's been very hard on all of us.

Matthew needs help with his handwriting. Brandon needs speech therapy and I've worn myself thin. We've tried so hard to make it work. I will miss having my family around me all day long. It will just be Tommy and me. I'm not sure what I'm going to do with myself yet. I am going to be sending off Matthew's paperwork for the end of the year this weekend. Then that will close this chapter in our lives.

I'm so SAD about it! I wanted to be "that" mom. The one that was hands on, homeschooling, completely involved with every aspect of their child's life. Watching plants grow together, creating stuff, learning together. Meshing our medical lives with our educational lives did not work as seamlessly as I had hoped. As a matter of fact, as Tommy has gotten older, he is MORE work and takes up even MORE of my time! Never did I think in a million years that he'd need this much constant attention. At this age, my other boys were content to sit in a playpen and play quietly. Not Tommy. Therapy, tube feedings, meds, doctors appointments, feeding therapy, exercise, 24/7 supervision not only for the trach but now the PMV.

I'm just tired. It's time for the next chapter in our lives. I hope we're making the right decision.

Monday, June 23, 2008

Tommy's Trach Popped Out!!!!

Holy Cow! I'm so excited right now, I could just scream! A few minutes ago, I needed a bathroom break, so like always, I called Matthew to the living room to keep a visual on Tommy. Tommy had on his PMV and was sitting in his exersaucer. On my way back down the hall, Matthew yells that Tommy got his PMV off by himself. Sure enough, I come into the room and there he is holding it in his hand examining it.

I walked over to him and he's smiling at me and shows it to me. Silly boy. So I go over to take it from him and start to put it back on him. Except I notice instead that his trach is sitting on his chest. It appeared to be in because his shirt collar hid it. Still Tommy is smiling at me. I did a quick nailbed check...still pink.

I slowly lift him out of the exersaucer and lay him on the ground. Still happy! I tell Matthew calmly that Tommy's trach is out and I need a new trach. Luckily, some arrived in the mail today and were a foot away. We didn't have time to find his neck roll, so I just gently lifted his shoulders with one hand and put in the trach with the other. Now he's mad!

I purposely went slow because I wanted to see what a nose breather looks like....and I must say, he's beautiful. So the trach is back in and I have all the confidence in the world that as soon as we get his tonsils out that he will be decanned (medical term for "trach out") very soon after. That date is July 25th. Tommy's trach was out total about 5 minutes and he did great!!!

Tuesday, June 17, 2008

Tommy Eating!

Tommy's speech therapist and I have been working on him taking a spoon. Here he is eating tastes of yogurt with blue food coloring so we can check for residuals in his trach. We've been suctioning him afterwards and he isn't having any residuals at all! Horray! Enjoy watching him eat!

Sunday, June 15, 2008

Tommy's Voice

My beautiful baby and his beautiful voice.

Saturday, June 14, 2008

All the latest on Tommy

Forgive me for being such a bad blogger! Life has had its ups and downs and I never seem to have a quiet second to post my thoughts anymore. Lots of news right now. We have full time nursing now! Hooray! Tommy's nurse, Kari, comes in 4 days a week from about 3-9pm. I'm so thankful to have her. It's been such a relief not to have to worry about changing him when I am in the middle of cleaning or trying to cook dinner. Plus I'm getting to spend a little bit more time with Matthew and Brandon. We're just now getting into the swing of things, and I'm hoping next week to be able to get more done around the house and to start having a little quiet time too.

Tommy had his follow up bronchoscopy after his tracheal reconstructive surgery. It is officially a success! He still needs his tonsils out, but other than that, he has the perfect airway. Of course, this is Tommy and nothing is easy. He's on 80% oxygen to maintain his sats. He's normally only on 35%. We feel the time has come to intervene with heart surgery in the near future. I think in the morning, we are going to start weaning him back down if he can tolerate it. I really hope we can go home tomorrow night and make plans for all of this instead of being thrown into chaos.

Today is going to be a fun day. In a couple of hours, Rob is bringing Matthew and Brandon to the hospital to stay the day with us. I plan to take them to the Children's Atrim so they can play and I can relax. The volunteers are holding a breakfast for the families as well, so this is going to feel like a party to them! I'm actually very excited about all of it. Just wish Tommy were stable and could come with us to the Atrium. Maybe next time...because knowing Tommy, there will always be a next time.

Wednesday, June 4, 2008

Brandon Is 5 Today!

My little monster actually made it to his next birthday alive! Seriously, he is another miracle baby. Everyone knows about my pregnancy and birth with Tommy, but Brandon was a difficult pregnancy as well. He was a planned baby and I got pregnant quickly (one month!). Matthew was in pre-K and I walked him to school every day. Then I'd go pick him up. My OB office was about a mile from my house as well, so I walked there too. I would take Matthew with me for most of the appointments and he'd listen to the baby's heartbeat with me. It was a very special time for us.

I started spotting about 8 weeks into the pregnancy and had to start taking it easy. I could no longer walk Matthew to school and had to pull him out. I was so tired and in pain that I could not do it any more. I looked so sick that a police officer actually pulled up beside me and asked if he could take me to the hospital one day right before I decided enough was enough!

At 20 weeks, we had gone grocery shopping. I was being careful, not lifting or straining. I squatted down to put something in the crisper in the fridge and hear "POP". I thought I wet myself but found out quickly I was bleeding full force. I lay down and put my feet up, but I didn't stop. We went to the emergency room and they were actually going to make me wait. I told the lady I could FEEL myself bleeding and I wasn't waiting! Since I was the "magical" 20 weeks I got to go to labor and delivery. Had I been less than that, I would have been sent to the ER to just miscarry.

Once I got to L/D, my doctor came and ordered an ultrasound. Baby was fine, but I had a very low placenta. (Placenta previa) His placenta was covering my cervix. Every move I made would squeeze the placenta like a sponge and I'd bleed. It was very dangerous for me to even be on my feet because the pressure from the baby made the condition worse. I was put on complete total bedrest. I was allowed up to go to the bathroom and shower for 15 minutes a day. That was IT. I used to cook dinner sitting down. We had a couch bed so that was permanently pulled out. Matthew and I would cuddle and watch tv all day. On my way to the bathroom I'd pop something in the microwave and on the way back, I'd grab it. That was how we did lunch every day.

Around 28 weeks, Rob and I ventured out for dinner out. I had to stand in line at Walmart to cash a check. It was only about 5 minutes, but my back hurt so bad. I'd been to the doctor that day and found out I was gestational diabetic and had been checked for a kidney infection. My labs had gone out that day and we were waiting to hear back. I'd been achy, and we were suspicious. By the time we got to the restaurant, I thought I was really in the need of the restroom. Come to find out, I couldn't go. I just HURT. I told Rob I was sick and we needed to leave right away. They gave us our drinks to take with us and we took credit for the meal instead of waiting for a refund. We were about 30 minutes from the hospital, but once we got in the truck and I told Rob the last time I hurt that bad I was in labor. We made it to the hospital in less than 10 minutes.

I was in labor at 28 weeks! I was put on magnesium sulfate and it made me very sick. I was on an IV of fluids and in so much fear and pain. I was contracting every 2 minutes at that point. My labor finally stopped. I spent two days in the hospital. I couldn't get out of bed because the medication made my legs like jello. I went home on terebutaline/Brethene. It is an asthma medication that relaxes all the muscles in your body, especially the uterus so it doesn't contract. I had to take it exactly every 6 hours. So my routine was to wake at 6, take my blood sugar before I sat up, go potty, take my meds, eat breakfast at exactly 7, take my blood sugar an hour later..I had to eat exactly every 4 hours, taking my blood sugar an hour after every meal and my meds every 6. It was non stop. My last dose was at midnight and I was always starving but I couldn't eat off schedule. Of course, I had to wake up at 3 am to go potty as well. Oh and I was on complete bedrest again.

It turns out a bladder infection was caused by the bedrest. I was allowed up for one hour a day to rock in a rocking chair to keep the blood flow to my bladder. The infection had brought on the labor. I stuck to my strict routine until 34 weeks when my doctor took me off of the meds. A week later, some friends came over to set up the crib for us. It didn't happen! We got hit with a huge storm that knocked out the power and we ended up at a Chinese restaurant for hours instead. We laughed and joked and someone joked I'd have the baby that night. Ha Ha. We got home after the power came back on around midnight. I was so wound up! I felt like I had drank enough caffeine to keep me awake for a month, but had drank water at dinner. I couldn't go to bed. I told Rob I'd sleep on the couch. I finally fell asleep around 3. Something startled me awake once but I couldn't figure out what. Around 5, I was woke up by a loud "POP". I sat up to see myself covered in pink. I was 35 weeks.

I woke up Rob and told him it was TIME. He thought he'd overslept for work! I flipped on the lights to show him my soaked pjs and I thought he'd have a heart attack! My water had broke with Matthew at 35 weeks as well, but it was just a little trickle. This was more of a flood. He then asked the dumbest question EVER. "Matthew is asleep. What do I do with him?" He completely forgot all of our plans! I was not in labor yet, so I called the sitter and told her Rob would have Matthew to her as soon as he dropped me off. My next step was to eat a sandwich. NO way was I going through the day with no food, lol! Then I called the doctor and was told to head out to the hospital. We got there around 6 am. I had my first contraction in the truck on the way.

The doctor saw me soon after. His last check was around 8:30 a.m. when I was given a combination of pitocin and pain meds. He said he'd see me around noon to check on me. I was at "4". The poor man never made it to the elevator. I went from 4 to 10 in 30 minutes. 4 hours after my water broke and 3 hours after coming to the hospital, Brandon Luke made his way into the world after 3 pushes. He weighed 7 lbs, 11 oz. Not bad for a "preemie" born 5 weeks early. His only issue was a little jaundice. No NICU and home with me 3 days later.

So there you have it. Tommy isn't my only miracle baby. Oh, and we did finally get our dinner out!

Today, we are taking him to Toys R Us. He's a member of their Birthday Club, so when we go in, he will get a balloon and special treatment. We'll let him pick out a small toy. On Saturday, I will go to the grocery and pick him up a cake and goodies. We are having another family stop by but no real party. We got him a minature shopping cart and groceries and a couple of Transformers. Wow. I can't believe it's his birthday! I can't believe he's 5!!!! Where has the time gone?

Saturday, May 31, 2008

Brandon and Tommy

They're always so beautiful when they're sleeping. Even more so when they're cuddled up together! Brandon loves to cuddle up beside Tommy on the floor and both of them will fall asleep beside each other. Thought I'd catch them in the act yesterday and show you how precious and peaceful they looked.

Thursday, May 29, 2008

Revolution Money Exchange site

I found about this last week and thought, hey, why not. It's called Revolution Money Exchange. It's a legitimate thing! It works like paypal, but without the fees. You can even link it up to your bank account and transfer money for free. I've searched high and low on the web for something negative and I can't find a thing. It is an actual bank. You can click the button to sign up. I wouldn't put this on here if I hadn't signed up myself. I love paypal and all, but I'm so tired of the fees! Now my family and I can send money to each other without worrying about going to Western Union or paying paypal's fees. This would be great to have your college student sign up for or newlywed kids to be able to send them money for emergencies. Since it links up with your bank account (like paypal does),you can transfer money from your account on their site, or if someone sends you money, transfer it to your bank account for free as well. Its free to sign up, so why not?

Yeah, I know, I sound like a commercial. But every now and then, we fall onto hard times and my MIL will send us a little through paypal. Sometimes she'll send us a little for birthdays too. I end up paying a fee to paypal. Say she sends me $20, I end up with $18. I like this idea MUCH, much better!

Refer A Friend using Revolution Money Exchange

Sunday, May 25, 2008

The Congenital Heart Defect Awareness Book

This book was made by Vanessa Sapp of CHD H.E.A.R.T. I hope to someday be able to purchase it. Tommy's picture is on page 47 (3rd row, first picture), his name and diagnosis are in the back (alphabetical order) as well as a definition of his heart defect. She has done a WONDERFUL job putting this book together. A word of caution, there are photos in the book of children following heart surgery. Even though these are hard pictures to see, they are a part of our reality.

View this photo book created at One True Media
Congenital Heart Defect Awareness

Wednesday, May 21, 2008

A Fairy Is Born!

The boys and I had a great time today making Tommy laugh. I skipped housecleaning to help Tommy find his voice today. It was worth it.

"...because you see when a new baby laughs for the first time a new fairy is born, and as there are always new babies there are always new fairies. They live in nests on the tops of trees; and the mauve ones are boys and the white ones are girls, and the blue ones are just little sillies who are not sure what they are..."--James Matthew Barrie (Peter Pan, Chapter 17)

Yesterday was, um, interesting. Where do I begin? First a little good news. Tommy tolerated his PMV (that is what lets him make noise) for two hours yesterday. Go Tommy! Then life thumbed it's nose at me. I was casually flitting around the internet and decided to check the weather. It was looking rather cloudy outside. Uh, Tornado???? It was 45 minutes away, so we packed up laptops and medical supplies, grabbed the kids and went to a friend's house about 20 minutes away, but also well south of the storm. Here's where life starts to stink.

We lost Tommy's PMV. It took us about 2 hours after getting home to find it.

When we got home after the storm was over, we came home to no power. It was about 45 minutes later that it came on.

My laptop's dvd rom has decided to quit working. My computer can't even find it.

Both our personal vehicle and Rob's work truck are sitting on empty, we're flat broke and the kids have a doctor's appointment tomorrow. Joy.

Rob's medical bills are starting to pile up. We are going to owe thousands. I keep looking online at the statements and the insurance is not covering anything! How can we pay them if we can't afford a few dollars for gas? I swear, I'm going to post a link to my paypal account for donations! GRRR!

Everyone keeps warning me to take care of myself because I do so much for my family. I am Tommy's sole caregiver. We are qualified for nursing, but there doesn't seem to be any nurses available. SOOO frustrating! My house is reverting to it's old messy ways again and I'm fighting tooth and nail to stay ahead of it. I feel myself starting to unravel. Rob had a stomach ache last night and I actually yelled at him because he asked me to get him a drink of water. I need a break. A long weekend with NO kids, NO responsibility.

I hate bad days.

Sunday, May 18, 2008

The Sound of An Angel!

What a beautiful day!

Saturday, May 17, 2008

Tommy Has a Voice!

Tommy is wearing a Passy-Muir valve. It allows air into the trach, then it closes and he has to breathe out through his mouth and nose. This moves the vocal cords causing sound. I have not heard Tommy's voice since he was born. He was a quiet little preemie and then intubated for heart surgery. He needed the trach to come off the ventilator and other than his birth, I've not heard his sweet voice until today.

Wednesday, May 14, 2008

A Night Out!

Tonight we had dinner with the Lovely, Wonderful ladies of the Summerville Presbyterian Church prayer group. They've been watching over my family and praying for us for about a year now. They've given us gifts for Christmas and bought the boys Easter baskets. Up until tonight, I had only met a couple of the members and only really know one of them and I met her online! We had delicious food and a nice visit. It was nice for all of us because we got to meet our Angels in person and they got to see a physical face (faces) that they've been praying for.

The boys were very good. I really thought someone had switched my children. Matthew was so well-behaved and acted so grown up! Brandon loved playing with my friend's girls, who are close to his age. At the end of the night, the 4 kids got to take home the balloons that were the centerpiece.

I really enjoyed having a night off! Tommy got lots of attention and I got to talk to adults! Rob even enjoyed himself! I'm so glad we got to go!

Monday, May 12, 2008

My Mother's Day

The day started out a little slow, but little things kept creeping in and I actually ended up having a very nice Mother's Day. I didn't have the typical breakfast in bed. There was no brunch or dinner out. These just can't happen in our home. Tommy still needs his routine care when he wakes up. Rob can't dine in a restaurant because of his sodium restrictions. It's a little give and a little take. I'll give up a typical Mother's Day if I can have them all in good health.

We did have a few rough patches, but it wouldn't be our house if there wasn't a little chaos going on. I got particularly angry at Big Lots. I went in to buy a trash can. I found what I wanted on a top shelf in the back of the store. Interestingly enough, all of their trashcans were up on this shelf. The cashier told me that they were short handed, but there were some other cans on the floor in a different area. Those ended up being too big. AHA! I spied an employee. I told her what I needed and she said okay, she'd be right back. 10 minutes later, I'm still standing there. (and very angry, by the way!) I went to the front of the store and there she stands. Not doing a darn thing! I told the cashier what happened and the other employee says "Oh, I forgot!" I told them I was taking my business elsewhere.

There was a happy side to my day as well. First I got my hair cut! See!

I also bought myself a pair of shoes I've been longing for and waiting to go on clearance. Today was that day and lucky me they had ONE pair in my size!

And finally, a little something from the kids. A hand made picture from Matthew and a short and sweet email from Alex.

So, after a nice dinner of pineapple chicken and a nice heart to heart talk with Rob before lights out, my Mother's Day was very nice. I talked to Alex on the phone. I talked to my mom and to my mother in law. Now that the day is officially over, I did have some nice memories made today. Matthew making the picture and Alex sending the email made all the difference in the world. I am so blessed to the the mommy of just wonderful boys. *Warm fuzzies!*

Sunday, May 11, 2008

Happy Mother's Day!

I've seen this several times today. It is by Lori Borgman.

Happy Mother's Day to all of the special needs mommies out there!

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Saturday, May 10, 2008

Just A Little Vent

Why? Why? Why? OH WHY??? Every time there is a windfall to I end up with nothing? Our stimulus check came yesterday. Rob has been out of work for two weeks, so there is no income. We still have the same old bills to pay, so thank goodness for the stimulus check. It came at the perfect time.

Here's the problem. I spent the majority of it just playing catch up with the bills. So why is Rob out spending it like a fiend on JUNK??? My only request is a haircut. I even have a coupon that will make it less than $5.00 and I can't bring myself to go do it because I just know if I spend that it's going to cut into one of his projects.

You would think after 10 years together that this issue would have finally resolved itself. Nope. I'm still the grown up in the relationship, stressing out about paying important things like the mortgage and the electric bill. He wants to drive to KY to bring his junk Fire bird sitting in his grandfather's barn down here to fix. We don't even need the second car. He just WANTS it, despite the fact it's going to probably put us even farther into debt. I just want to run away.

Now I get the job of making sure everything gets paid, corners get cut even further than they are now, and do without my measly $5.00 haircut. I know life is too short to argue over money, especially now with his health in question.

I know all of this comes down to ME. It's MY problem that I don't have the guts to go spend money to get my hair cut. I guess being the oldest of 6, I learned to do without and I feel guilty for taking for me. I wish the conflict inside me would go away! Either I suck it up and quit crying about it, or I suck it up and do something about it. Neither way is appealing. I hate feeling like this!

Wednesday, May 7, 2008

A Beautiful, Lazy Day!

Rob went for his sleep evaluation yesterday. He didn't spend the night yet, that will be next week. I really like his doctor and I think she is very intuitive and we're on the right track. She was very concerned with how apnea may be affecting Rob's heart.

Today was a gorgeous day outside here in Charleston! I put up some bird feeders and cleaned up my yard. I moved my patio table and chairs to a nice shady spot instead of them sitting on the concrete slab. I much prefer the shade! I raked up a few pine needles and it look 100% better! To be fair, Matthew did bag them for me.

Matthew is very upset today. Rob is supposed to be resting, so that is what I am letting him do. He's been sleeping most of the day away sitting on our love seat. Matthew wants to go fishing! I keep telling him how hot it is outside and that Dad needs as much rest as he can get. These reasons don't matter to a 9 year old. I know I should not discount Matthew's feelings, but I have to look at the big picture here! If Rob is sleeping, it is because his body needs it!

Brandon has been an angel today. Hard to say that about "Mr.-Hide-Raw-Steaks-In-Mommy's-Bed" but yes, he's been great. It's one of those hot, lazy Charleston days around here. He and Tommy are laying in the middle of the floor and alternate between napping and playing. Tommy has learned if he pulls Brandon's hair, Brandon makes a loud noise! Tommy finds this hilarious and pulls even more. Brandon hasn't figured out to just move yet, so there is much caterwauling going on in my home today! I'd much rather hear that than the usual fighting and screaming that is typical most days around here!

Sunday, May 4, 2008

Scared to Lose Him

Rob got home yesterday from the hospital and is feeling great. Today he took Matthew and Brandon to a friends house for a cookout. Tommy and I opted to sit this one out. I've been in a hospital for over a week now and sitting in my silent living room while Tommy naps is Heaven right now.

While I have the time and there is nobody home, I decided to look up information on Congestive Heart Failure. I have read everything from diet and exercise can reverse the affects and the heart will restore itself all the way to 50% of people diagnosed die within five years and many within the first year. That was hard to swallow.

When Rob and I got married, I just wanted us to grow old together. To raise our family and have our dreams come true. I deal with enough stress every single day wondering how much time I have left with Tommy and now my head hurts just thinking I could lose Rob. I can't. I just can't lose him! He's only 34 years old. We have our entire lives ahead of us!

I have been sleeping so much this week and I can't seem to feel rested. I wake up exhausted and with a headache. Of course I'm not telling Rob how I feel. I have to be strong for him. I have to be strong for my boys. Matthew is old enough to understand what is going on. I've tried to explain that even though Daddy will have this forever, as long as he takes his pills and stays on his diet then things will be okay. I think I'm trying to convince myself too.

My mother in law is having a hard time, I think. She still INSISTS that Rob talk to his doctor about being put on ADHD meds. No matter how I try to explain it to her, she won't listen to me. Those meds can KILL him. He attempted to get a new prescription for himself a few months ago. The doctor told him he needed a reevaluation first since it had been 2 years since he'd taken them. At the time we were angry and put out. Now we know that statement saved Robs life.

I will spend the rest of my life saving his life. The food he eats, making sure he takes his medications, walking with him. Making his doctor's appointments for him. I said when Tommy was diagnosed with his heart defects I would do "Whatever It Takes". That doesn't change now. I will do it for Rob too.

Thursday, May 1, 2008

Wonderful Day!

Rob was able to be shocked back into natural sinus rhythm today! So far, so good. Now we start with the medications, the blood thinners, the diet, and exercise. Don't know how much longer he's going to be in the hospital, but this is a fantastic start.

Daily Update on Rob

No major changes today. Rob had an ultrasound of his legs to look for blood clots. So far, they are holding off on the heart cath. Tomorrow (Thursday) he is having a TEE~trans esophageal echocardiogram. He will have a catheter with a camera passed down his throat to look at his heart. They will see whether or not he has any blood clots and then there is the possibility they will shock his heart back to natural rhythm.

The boys and my mother in law came to the hospital today and stayed for several hours. It was a really good day. Since the hospital he is in ONLY treats adult cardiac patients, there is a lot of room oxygen. I just hooked Rob up to one and Tommy up to the other!

Wednesday, April 30, 2008

The Love of My Life

Last night, around 3 in the morning, Rob and I came to MUSC's emergency room because he was having some chest discomfort and shortness of breath. We both honestly thought it was his blood pressure, or maybe anxiety. Little did we know what was in store for us.

Rob was admitted with congestive heart failure and atrial fibrillation. I have never been so worried in all of my life. You worry about your kids all the time. You kiss their boo-boos and hate to see them go through anything. They always seem so small. But to see your spouse go through something so serious is just heartbreaking. Tonight he is in the hospital. We will be here for several days for testing and observation. Tonight is his first night on CPAP for what we believe will become a definitive diagnosis of obstructive sleep apnea. We think years of undiagnosed apnea is the cause of the heart failure along with high blood pressure.

He was very claustrophobic when the respiratory therapist put the CPAP mask on him, but with a lot of encouragement, he is finally falling asleep wearing the mask with no problems. I hope he has the best night sleep ever! Once he has been released from the hospital, he will have a sleep study done to officially diagnose the apnea and he will begin wearing the mask every night.

I'm having such a hard time putting into words exactly how I'm feeling. I am so used to being an advocate for him and the boys. I jump right in with encouragement and I'm not afraid to speak up for him when he can't. It's one thing to finish a sentence for him when he can't remember a particular phrase or word because of his ADHD. It's an entirely different beast to tell the nurses what symptoms he is having because he is too upset to put it into words.

Rob is the father of my children, my best friend. The love of my life. He's stubborn, and moody. He's loving, and full of affection for me and our children. He compliments me in every way. I'm not afraid to fight or argue with him because I know he isn't afraid to step up and work it out. He works so hard for our family. I cannot imagine what I would do without him.

He is the best father in the entire world. From doing the little things like laying on the floor with Tommy after work for a few minutes or playing video games with the boys, to the really important stuff like taking on the responsibility of another man's child or comforting me when we thought we'd lose Tommy. He doesn't back down. He does things in his own way and sometimes I disagree, but I have to remind myself that he is not me and our children need different things from each of us. He gives our kids that Big Kid to rough house with and burp with. He gives them that firm hand when they cross the line and remind them to respect their mother.

He is sunshine, he is air, he is the blood in my veins. My love. I wanted to dedicate a song to him to let him know just what he means to me. I chose LeAnn Rimes' song "I Need You". Tonight, I played the song for him while I held his hand and cried. He is so brave. He's kept his sense of humor. I know in a few weeks when he's back to work and back to wrestling with the boys that he's going to look at me with "that" smile and I will burst into tears of happiness and thank God above for rescuing me from living alone.

Diagram of Tommy's Heart Defects

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