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.

Diagram of Tommy's Heart Defects

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