Thursday, January 31, 2008

Heart Defect Awareness

I've been working on trying to bring awareness about heart defects the best way I know how. That is by sitting here on my computer and not only blogging about it, but sending emails, posting on message boards, navigating myspace, and reading about other heart kids. This month has been challenging. We've had a couple little ones earn their wings. The only thing keeping my heart from breaking into a million bits is that I never got to know these kids personally. The more friends I make in the CHD community, the more of a chance I have to one day soon, be touched by the death of a little one that I know. Not a name on a support group posting, but a person that I have spoken with his or her mom. Know their birthday, where they live, sent them a Christmas card.

I am trying so hard to make a way for my voice to be heard on what I am passionate about. Babies need screening for heart defects in the same way they are screened for other defects. What I don't understand is the WHY. It's so easy to screen for! Fetal ultrasounds specifically to look at the anatomy of the heart. Then at birth, before the baby is released, a tiny probe is attached to the toe and the amount of oxygen in the blood is checked. If it's low, do an echocardiogram.

The equipment is RIGHT THERE! Tell your doctor to use it. If they refuse, ask for a new doctor. I would NOT want any doctor treating me or my newborn that would dismiss something so serious that would only take 10 minutes of their time. In the United States and in the UK, 1 in every 100 children will be born with a congenital heart defect. Many of them will be sent home to die because nobody bothered to check. It needs to be a Federal Mandate that all newborns have a heart screening before being released from the hospital. It can save YOUR child's life.

I got very lucky with Tommy. In my 5th month, AFTER I'd had my 20 week ultrasound,(where nothing was found wrong with him)I had Subchorionic Hemorrhaging. At the time, we did not know what was causing me to bleed profusely for no reason. I had an ultrasound every week for about a month. Finally, on what was about my 4th ultrasound, the doctor pulled me aside and told me the tech could not see Tommy's heart or his umbilical cord. I was being sent to our local University hospital for a level 2 ultrasound. It was with that ultrasound a week later that Tommy's heart defect was found and I was sent for a fetal echocardiogram for a diagnosis.

What if there had been no bleeding? What if he had been a healthy pregnancy? He was born "balanced" with blood oxygen levels in the high 80's, low 90's. He was pink. Even though he was a preemie, he was healthy. We would have been sent home if he would have been born on time and no one had caught his heart defect. He coded 4 weeks later in the hospital and had emergency heart surgery on the spot. At the time, my husband was still at work when the hospital called me. He would have died if he had been at home with me. Then he would have just been a statistic.

If anyone reading this is expecting or knows someone expecting, please, ask for a fetal ultrasound specifically to see the heart, and at birth, at around 36 hours old, request a check with a pulse/oximeter to measure your baby's oxygen levels. YOUR baby could be that 1 in 100. Congenital Heart Defects are the NUMBER ONE birth defect! In the first year of life, it will KILL more babies than all forms of childhood cancer combined. 51% will not see their first birthday.

Please pass this blog on to any and all who may benefit from the information. I want to save as many baby's lives as possible.

Thursday, January 24, 2008

This and That Update

What a day, or rather, what a week! My mother in law is in town this week and we've been having a ball! Right now, I am completely indebted to her for eternity. She took Matthew and Brandon off of my hands for the night. Ahhhhhh! Peace and quiet! My state taxes came back today so I was able to pitch in half for dinner. Usually she comes down and treats us all week. Rob and I feel like heels, but what can we do? So today, I felt really good handing over the money to help!

Then it was off to Walmart. I intended to buy a roasting pan, and ended up walking out with an entire new wardrobe! I've never seen so much Plus Size clothing on sale there before. I was so excited because not only did they have a huge selection of stuff I actually liked, not only did I have money with me, but it was all ON CLEARANCE! Yeah!!!!

Tommy has a nurse tomorrow, and I am going to trust her and leave Tommy alone so we can take the kids to the children's museum. She'll have my cell, but I'm sure he'll be just fine. This is a BIG step for me. I've never left him before unless he was in a hospital. It's time. It's overdue. I need to be able to function as a person, not just as Tommy's caregiver.

And now for the "Mixed Blessing News Of The Day". Tommy's heart cath has been scheduled for February 6th at 6 o'clock in the morning. He will be first case. I'm apprehensive, but this HAS to be done. We need to move on with these surgeries and work towards getting out the trach. We have lives to lead and we are ready to do it.

Thursday, January 17, 2008

Feeding Trials

I've been doing feeding trials with Tommy for two days now. I am giving him colored water to teach him to swallow. (Okay, it's a koolaid pack dumped in a glass of water with no sugar) He acts like I asked him to eat worms or something! Really, its just because he has no idea that food is supposed to belong in his mouth. Imagine waking up tomorrow and the doctor told you to start practicing eating with your ear. Same concept. He's been fed through a tube since birth, so why should he want food now?

Saying all of that, things are going very well! Once the food is in his mouth, he swallows with no problems at all! He has not once aspirated. I am so happy! Now to get him to LIKE it!

Tuesday, January 15, 2008

I Think It's Time To Sleep, Finally.

Tommy's swallow study was today. I am in awe of how great our Heavenly Father is, and what he has done for me today. He gave me such a beautiful gift. Today, 15 months after he was born, I watched Tommy swallow effectively for the first time. Yes, he swallowed. Without any significant aspirating.

My body is so tired, so keyed up. I am ready to fall asleep, but Matthew and Brandon are still awake and I have to wash a load of clothes for Rob. I feel like I have been emotionally wrung out. I haven't slept in a month because of all the stress worrying about Tommy.

We're not out of the woods yet, but I can see the way out.

Friday, January 11, 2008

Can't Sleep...What's New....

I can't seem to ever be able to fall asleep at night. I get all keyed up after the sun goes down. I've been up since 9 o'clock this morning, and now here it is, 18 hours later and I'm still going. I'm stressed about Tommy's upcoming heart to be announced when I get one...and more so, I'm trying so hard not to freak out about his swallow study on Monday. For the longest time, it didn't feel like it would ever get here, and now, here it is, just one short weekend away. Our fate lies in the results of a little barium and an xray.

The last two swallow studies, I gave in and gave him something like jello a week or so before, but this time, I'm scared to death! My gut says he's going to aspirate and there's nothing I can do to stop it. My head says to keep it together and just wait and see. My heart is completely breaking.

I am such an emotional train wreck right now. At night, I dream he is walking and talking, then during the day, I hear a song and a though pops into my head that it would sound pretty at his funeral. WHAT THE H*LL AM I THINKING????? He's alive, he's right there, sleeping in his crib. I can see him rubbing his little nose in his sleep. I was asked once why I could not accept the miracles that God has given me. I guess my subconscious is scared to lose him if we can't stop the aspirating.

It feels good to get it all out. To read it and know I'm not crazy or pathetic. I'm just a mommy trying to do what is best for her child and sometimes our hands are just tied. God didn't do this to me. It's nobody's fault. Tommy is loved and he knows it. I have to keep remembering to love him no matter what and to let what will be, will be.

Wednesday, January 9, 2008

It's That Time Of Year!

February 7-14 is Congenital Heart Defect Awareness Week with the 14th being CHD Awareness Day. Please go to and order your FREE stickers and brochures. Pass them out to everyone you know and help us raise awareness for CHD!

Tommy would not be alive without research, grants, and skilled hands being trained at top hospitals. Here is some information about CHD from the Children's Heart Foundation.

Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.

Congenital heart defects are the #1 cause of birth defect related deaths.

This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

91,000 life years are lost each year in this country due to congenital heart defects.

The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.

Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

The Children's Heart Foundation is the only organization strictly created to fund congenital heart defect research.

In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

The Children's Heart Foundation has directed almost $2 million to 24 different congenital heart defect research projects.

More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Sunday, January 6, 2008

All day to myself!

I have had the most wonderful day all to myself. Rob took the older boys with him to a friend's house. I have had the past 8 hours to do nothing but watch girly movies on cable and hang out with Tommy. I did manage to make myself do one load of laundry but I have not put anything away. Rob is on his way home now and bringing me some food. Oh, speaking of Rob... they're home! It's been such a perfect day. I'm so glad they're home.

Friday, January 4, 2008

Dozing off During Homeschooling

Boy, getting back into the swing of things around here is proving to be a challenge! Since the first of November, things have been askew. Tommy has had 3 hospitalizations and every time, the boys have to stay with a sitter so Rob can work and I can stay with Tommy in the hospital. Homeschooling has been hit and miss. Now that the holidays are over, I've been easing Matthew back into his lessons. Yesterday and today, I've had him doing one set of multiplication tables and working on a story. He got these great books for Christmas that have lines at the bottom and space for a picture at the top. The story is coming along so far.

The biggest obstacle is that I am flat out exhausted! I'm up and down with Tommy all night. Once I've spent the time getting Tommy ready for bed each night, from beginning to end, it's usually an hour. That means I'm done around 11:30-12:00. Then I have to contend with Matthew and Brandon fighting and not wanting to go to sleep. I can't go to sleep before them because they get up and get into everything. That means I don't hear quiet until about 2:00! I usually unwind and fall asleep between 3and 4, only to have Tommy wake up around 6 for suctioning, and then Rob getting ready for work at 7. Then I'm up again at 10 to start all over again.

I'm hoping that I can catch a catnap while Matthew writes his story. Tommy is almost asleep and Brandon is watching Shrek the Third in his room. Hopefully the phone doesn't ring like it always does when I doze off! (or my instant messenger ding, or UPS bringing me a package) I have a sneaking suspicion that Matthew will run off to watch Shrek as soon as he hears me start to snore. That means more work for both of us. I can't help it. I even had a Coke and I can't keep my eyes open. Time for that nap!

Tuesday, January 1, 2008

Our New Year's Eve

Happy New Year! It was so nice to spend New Year's day home with my family instead of a lonely hospital room. I guess I would have been fine. I would have watched the ball drop on tv there just like I did here. We had so much fun last night. Rob got out of work around 5 and went and picked up the boys from the sitter. Then he swung by the hospital and sprung us outta there! We had to stop and take Brandon to go potty at a nearby McDonalds so he wouldn't flood our van, then we were off to find some dinner. After a quick pass through the drive thru, we went to a huge holiday lights display here that the boys have been wanting to go through all season. We go every year. It was nice to see a few new displays.

After we drove through the lights, we headed to the first of 3 local Walmarts. Our router that we use for our phone gave out on us the night before. We needed a specific type of router that we could have picked up at any Best Buy, but they were closed for New Year's Eve. We eventually found what we were looking for, and it was about $30 cheaper than I expected. We also picked up lots of goodies and soft drinks. I even sprung for two bottles of sparkling cider. The kids were so impressed with the pretty bottle and the bubbles in their juice!

I spent about 10 minutes on the phone with our internet service provider setting up the new IP address and cloning it to our modem. Then it was all about tweaking the software. After an hour (and toasting the new year) we were online! A quick check of the phone line proved to be disappointing. A prompt told us that there was something wrong with our service. It took a while to find a phone number for Vonage. What a pain in the neck! The first person I talked to kept going through a trouble shooting menu and basically undid everything I had set up with our ISP. I was flaming mad. For some reason, my cell died and she was gone. She didn't even try to call me back!

I called and got a new person and when I explained what was going on, he was just appalled! He said all that needed to be done was to register our new router! There was nothing wrong with it and all of the stuff the crazy woman I got the first time was doing nothing but making a bigger mess! He had our internet fixed and our phone lines humming in less than 10 minutes! Now I have a brand new wireless connection for my computer and my phone line! No more cables snaking across the floor, no more stressing out because we've been booted offline again. Hooray!!!!

I never thought I would spend New Year's Eve in Walmart looking for a router, and then the next several hours being tortured to set it up! All's well that ends well. Happy New Year, everyone!

Diagram of Tommy's Heart Defects

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