Monday, March 31, 2008

Please check out this blog and pray for this family

I've been following a family on the internet for a few months now. They are Tricia, Nate and Gwyneth. Tricia has Cystic Fibrosis and requires a double lung transplant. Nate is her husband. More like her Champion. It is his blog that I've been reading daily about their lives in the hospital. Gwyneth is their miracle baby.

One day before Tricia was due to enter the hospital to prepare for her transplant, it was discovered she was expecting the baby she had always longed for! Tricia became very ill carrying Gwyneth and required the placement of a trach. She became so unstable that Gwyneth was delivered at 24 weeks.

Nate goes back and forth between the two ladies in his life, blogging all the way. I have fallen in love with this family and their story. Tricia is re listed for transplant at the top of the list. Please pray for them that the new lungs will arrive soon, and for the family members who will be losing their loved one so that Tricia may receive the Gift of Life.

Here is Nate's blog.

Friday, March 28, 2008

Time to unload the heavy stuff

It happened again. Another baby died of heart defects. Annabelle was almost 2 months old and died of HLHS. I never met her or her family, but it's hitting especially close to home because her mom and I are both members of our local Saving Little Hearts support group. She was there at MUSC on Valentine's Day when I took valentines to the PCICU waiting area for the families. I didn't know she was there, much less any other child who was there. I did it to bring a little comfort to families who needed something to look at and hold when they couldn't be with their child. Something for the memory book to look back on.

It hit me like a ton of bricks tonight that this baby ONLY had a heart defect! I feel so selfish. I don't want to take away from the fact that a baby died today. I don't want to take away from the fact that heart defects are very serious and the NUMBER ONE KILLER of babies before their first birthday. But something inside me snapped to attention tonight. So many days, I am just status quo. I move from task to task and enjoy every moment with Tommy. Thoughts are starting to creep into my head. Bad thoughts.

Tommy had the flu a couple of weeks ago, just 2 days before he was to be admitted for his tracheal reconstructive surgery. He was in ICU for 5 days! How many kids do you know that get the flu and head to the ICU??? When the doctors would round, I could overhear them talking about how sick he really is. The logical part of me knows this, but my heart won't let itself believe. The head of pulmonology comes to his bedside and tells me to my face that there is nothing more that can be done that we aren't already doing. That's it. He is at the end of all medical reach right now.

He's well now, and home. I give him his medications diligently. I keep dust and strong smells to a minimum. I only use natural cleaners with no chemical smell. I make sure his toys are clean. I don't take him out in public very often. I wash my hands a million times a day. I have to keep him well! It began because his surgery was rescheduled for a few weeks from now. But even more than that, this is his LIFE!

I went to his room with the thoughts in the back of my head of the baby that earned her wings today. She ONLY had heart issues. Tommy coughed and coughed and coughed. He turned blue, gagged like he always does when he can't catch his breath and broke out into a sweat. All typical night time behavior for him. I had to go in and suction his trach and rub his head to help calm him back down. I looked at him and SAW how sick he really is. If I were anyone but me, I'd be in awe of how he lives each day.

I don't wish him to die! I will go back to being level headed mom tomorrow. But for tonight, I mourn with the mommy who can't hold her little girl tonight. I cry and pray that Tommy is not next. I try so hard to picture him growing up, but it makes me upset to my stomach to think that far ahead. I say two silent prayers nearly every day. In the morning, I thank God for letting him live another night and every night I beg God to let him live just one more day.

For now, he is sleeping soundly, just like any other baby. The turmoil inside his little body unseen. Please, little Tommy, grow stronger tonight. Fight to stay well. I never want my arms to ache for you.

Wednesday, March 26, 2008


Tommy has learned to sit up unassisted! We still have a way to go before he learns to do it on his own, but things are moving right along. Here's also a cute slide show of him trying his very first chocolate Easter Bunny! Sorry for being MIA on the blog. Between the older boys appointments and Tommy.....

Tommy has been sick with the flu and spent 5 days in the hospital. We had to put off his tracheal surgery for a month. Matthew and Brandon are both seeing counselors now and getting psychiatric help for their individual issues. Matthew is ADHD and Brandon has anger and impulsively issues.

Here's the videos and pictures!



Thursday, March 6, 2008

Last week, Matthew and I went to see "Lord of the Dance" live. It was a respite opportunity provided by the Willow Tree Foundation. They feel that parents of medically fragile children need time to themselves to recharge. We chose to go see the show as our respite.

In honor of the show, I've made a cute video on JibJab starring Matthew and me! I made myself a 17 year old again for the occasion.

Tuesday, March 4, 2008

Department of Social Services

Time just keeps getting away from me! We had a very stressful week. I'm so embarrassed to say that DSS came to my door last week. For the past 16 months, I've been Tommy's sole caregiver. He requires constant attention and the housework suffered. Because of the lack of attention to the house, we developed a pest problem. Then wouldn't you know it, but after I've screamed at the top of my lungs for someone to come help watch Tommy so I could clean my house....the nursing agency turned me in to DSS.

I ended up putting my family in a hotel for a week, came home and cleaned by myself for about 12 hours, throwing out anything not nailed down. My mother-in-law drove down from KY and watched the boys, including Tommy, so that I could get my house spotless. See? I had help watching Tommy and I got my house cleaned up! Morons. The only good thing to come out of this was that DSS paid to have my house professionally fumigated.

Now we are home. I figure now I have a clean slate to work with and it won't be such a chore to keep up. I was wrong. It's still just as hard, but at least I have a nurse coming in a couple of days a week now so that I can work on a deep scrubbing at least once a week. The other day is for running errands.

I'm still in shock that the one place I was finally able to get help from are the ones who stabbed me in the back. I have been told they can lose their nursing license if they don't turn me in. How about the benefit of the doubt and not kicking someone when their down? It's over now. Time to move on. I still have one more inspection in about 3 weeks and the older boys have to see "their" counselor. Other than that, I'm off the hook. I'm angry and upset that it happened this way. But like I said, clean slate. Right?

Diagram of Tommy's Heart Defects

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