Tuesday, September 25, 2007

365 days ago.....

My little baby was born. We knew he had heart defects and I was getting the best medical care. But nothing can stop your water from breaking. That is what happened to me on September 5th, 2006. I was admitted so Tommy and I could have constant monitoring. We tried to make it five weeks but the night of the 24th, I had a hard time sleeping and my gut knew the big day would be here when I woke up. I had no pain. I had been losing a little amniotic fluid every day but not enough to hurt the pregnancy. I was in bed all day except for 5 feet to the bathroom and a shower every other day. The morning of September 25, I woke up soaked with bloody amniotic fluid. I called the nurse and she talked to my doctors. I was told I was on high alert and to let them know if anything else happened. I wrapped a towel around myself like a diaper and laid on my side and tried to relax.

My best friend and her husband brought Brandon to see me a few hours later. When they left, she whispered "see you soon" to my belly. Ugh! Why did she have to encourage him??? When they left, I got up to use the bathroom and found my towel soaked again. My doctors held a quick conference and told me there comes a point when the decision must be made if it is safer to continue a pregnancy or deliver the baby and take care of him in the NICU. She thought I was beginning to have a ruptured placenta so I was to be induced. Silly me, I thought I had a few minutes. I barely had time to get ahold of my husband at work! He called his mom in KY. She left work, fed her cats and jumped in her car.

I was induced at 1pm and my labor started to progress around 4 or so to the point I could feel contractions really well. When I got to 4 cm, I decided to have my very first epidural. OMG! It was horrendous. My contractions were on top of each other and I was shaking all over and sweating like crazy. Every time the tech stuck my back I thought I would die. After the 4th stick we thought it was in a good spot. They administered meds and checked to see if I was numb. Nope! They gave more meds. Still nothing! So there I was with a needle in my back doing nothing, complete back labor, and going through natural childbirth by no choice of my own!

At 7 cm we went to the OR to deliver in case the placenta ruptured and they had to do and emergency C-section. Luckily we did not and when I hit 8 my body went crazy and I couldn't stop my natural urge to push. I held off just a little and when I got to 9 the doctor said "oh well, he's little, just push". So I did. Once. My best friend said Tommy shot out so fast the doctor almost dropped him! And then I head it...CRYING! I thought for sure my sickly little baby would be too weak to cry! That glorious sound filled the nursery next door and wafted all through the OR. I never saw him because he was supposed to be critical. He apgar'd at 9 and 9!

I finally saw him an hour later on his way up to the NICU. He was so big for a preemie, and yet so small compared to a full term baby. He was healthy and vivacious. I found out that the doctors had found a blood clot on the placenta so we had done the right thing. My mother in law made it an hour or so after he was born and we walked up to the NICU together a couple hours later after the team got him settled in. He spent only 5 days in the NICU and was moved to the stepdown unit because he was just so darn healthy! What a little fighter! (Now his heart is another story...) It's been an awesome year loving my little miracle. I hope everyone likes the montage in the previous post.

Monday, September 24, 2007

Happy First Birthday, Baby Tommy!

I was going to wait until midnight to post this, but I can't wait. Happy First Birthday, my beautiful baby Tommy.

Saturday, September 22, 2007

Look What I Found!

A friend of mine and I took our kids out shopping today to look for gifts for birthdays coming up. Tommy and my friend's daughter are having a joint party because her birthday is 3 days after Tommy's. She is going to be 3 this year. While we were in Big Lots, we see these big bins of shoes. We start digging around and look what I find in the bottom of the second bin. It was the only pair and they were my size!!! I'm going to wear them for the Heart Walk next weekend!

Aren't they absolutely appropriate? I love them. Oh, of all things, my AHA website managed to raise enough money to get Tommy his tee shirt. Good. We're taking it home...I'm still going to create my own. I will post it once it is finished.

Thursday, September 20, 2007

Heart Walk Blues

I am feeling so conflicted! The American Heart Association is having their annual Heart Walk here on the 29th. A friend of mine is coming into town that weekend not only for the walk but for Tommy's party. If anyone knows me personally, they will know that I cannot STAND the AHA. I have LOTS of reasons, but the number one reason is that they only donate 1 cent of every dollar raised to congenital heart defects. That is pitiful to me. I have other charities I would rather donate to. The Children's Heart Foundation donates 100% to CHD research, and Tommy's surgeon is a member.

So back to the Heart Walk. I decided to participate in the walk because it is the ONLY thing we have locally to recognise our kids with heart defects. I'd love to start a local group just for heart kids, but I just don't have the strength or time right now. The walk for the kids is only a half mile and we are at the tail end of the "official" walk. Yep, use our kids for the billboards and posters then leave them out in the cold....

I logged onto the AHA website and registered Tommy and me to walk. It's "requested" that we raise a minimum of $50 so Tommy can have a "free" teeshirt that says "Heart Survivor". I figure the kid at least deserves a tee shirt after all he's been through! Great, so now I have to get donations for a charity that I can't stand to be associated with! I send out an email to my family and friends asking for their help. I called them in advance to explain why I was doing what I was doing and asked them to pass it on to whomever they thought would help. The website automatically sets our donation goal to $150 dollars. I figure if I can get 10 people to send in $5 dollars each, then at least Tommy will get the tee shirt. (He should get it just for being alive in my opinion...)

So now it's been 3 days and NOBODY has donated anything! I'm so conflicted! Am I secretly pleased that the AHA cannot use my child for bait for donations for something that will never benefit him? Or am I mad that he won't be getting that stinkin' tee shirt that he EARNED by surviving two open heart surgeries???

I was going to post the link to our page, but in all honesty, I'd rather design him my own tee shirt to show off at the walk. Greedy b@stards shouldn't be making me use my child for bait and switch! Give your money to the Children's Heart Foundation instead. I will add their link in the left column.

Sunday, September 16, 2007

Patty Cake!

Wow! I was in the middle of my last post when I see Tommy doing something we've been trying to teach him for weeks now. He can finally clap his hands! Awesome! Here he is!

Working Hard

We (the therapists and I) have been working so hard with Tommy to build up his abdominal muscles. Every day, I unhook his monitor and feeding pump. I then take off his oxygen tubing so I can take his wet clothes off of him. (Lasix makes him pee a lot) I then sit him up so I can pull the onesie over his head. Well, this morning he decided to work those muscles! Here he is, awake for about 10 minutes and not cleaned up for the day yet. He's so proud of himself!

Saturday, September 15, 2007

Meet Godzilla

We had such a great day today with homeschool. We went outside for science to learn how to observe. They did a great job because they found our new pet! She is a baby Anole lizard. They are very common around here. Matthew literally stalked this lizard for about ten minutes. He crawled on his belly after it while Brandon kept chasing it back to Matthew. Yay teamwork! So without further ado....Godzilla!

Here she is right after we caught her

That is a regular sized Crayola crayon! She's tiny

Her new home!

Wednesday, September 12, 2007

Grape Juice and the Thirsty Four Year Old

It never ceases to amaze me the things my kids will do. Brandon is such a character about everything. I try so hard to give him lots of positive attention, but when he scratches his butt with the baby's sensory brush, I feel pretty close to losing my mind. Thank Goodness for Clorox Anywhere spray! There are times I catch Brandon trying to be helpful. I say trying, because really, he's trying my nerves! For instance today, when he decided he was going to wash the dishes or take a bath with his clothes on. I was able to talk him out of the bath. Not so lucky with the dishes...He likes to wait until I am otherwise occupied, say like on the phone or changing a diaper to engage in heinous activities!

Here's the last straw today. He sneaked into the freezer, stole a can of frozen grape juice and took it to my room to hide. He then opened it and proceeded to drink the concentrated grape juice before Matthew caught him red, er, purple handed. Here's the evidence...

Pleeeeeaaaaase make them go to sleeeeeeeep!!!

Here it is, 1:30 in the morning and Matthew and Brandon are still going at it. Matthew wants to go to sleep, but that little snot, Brandon, has decided he's not sleeping today. He is driving us all crazy! It kinda has a snowball affect. If he doesn't sleep, then I have to stay up until he does go to sleep or he gets up and wanders the house getting into everything you can imagine, and none of it good.

I end up staying up late and have a hard time getting up in the morning. This doesn't seem to affect Brandon. He's up at the crack of dawn, even if he's only had 3 hours of sleep and he's ready to do it all over again. I end up passed out from exhaustion from the night before and Brandon gets into everything anyway. I sound like such a neglectful parent, but I have to sleep! I'm not talking all day, and not even a full 8 hours. If I am tired, I can't take care of any of them!

When I get up late, my entire day is thrown out of whack. Tommy gets trach care done later, which means he gets fed later. It screws up his medicine schedule and sometimes I don't get in all three doses he needs because I don't want to give them too close together just to get them in. For instance, tonight, I have to give him a dose of three of his medicines at 2 in the morning just to get him back on track.

Great....now they are in their room chasing a water bug. I totally hate child abuse, but I am borderline ready to go duct tape them down to their beds!!! It's time for "Mean Mommy" to make an appearance. Otherwise, it's going to be an all nighter for me.

Sunday, September 9, 2007

Soy Milk Is YUMMY!!!

I'm still trying to stay healthy. Between cutting back on carbs and taking my meds, I have lost about 9 pounds total this month. I have tried to switch everything over to sugar free. I recently bought myself a treat. It was a box of sugar free pudding. I figured if I made it with reconstituted powdered milk, I would have myself a nice guilt free snack. The next day, my blood sugars were high. I couldn't figure it out. Turns out milk is milk. Even if you take out all the fat, you still have carbs. Phooey!

So I talk to my mom about it and she suggests soy milk. My first thought is "eww, gross", but about a week later, I am flipping through a magazine and there is a coupon for a dollar off a bottle of soy milk. I figure what the heck, lets give it a shot. With my coupon, the milk ends up being less than $2.00 for a half gallon. That's cheaper than the "real" stuff! I go with the vanilla flavor. I am still too chicken to waste my money on the plain. Tonight, I get home and put it in the fridge to get it nice and cold after our trip to the grocery.

I finally got the courage to just give it a try. It smells vaguely like baby formula. Once I got that visual out of my head, I took the plunge. I am pleased to say that I like it! It doesn't have the richness of milk. It's more of a watery texture, but very good flavor. I have to say I get the impression of a watered down vanilla instant breakfast type mix. Not bad for something good for me. Now I can have a little cereal every now and then. I can also make my pudding guilt free for real now! Regular milk has 12 grams of carbs for 8 ounces. Soy, even with the vanilla flavoring is only 5 grams for 8 ounces.

Saturday, September 8, 2007

What Am I Going To Do With Myself?

Holy cow! Since we got back from Tommy's bronch, He doesn't have ANY doctor's appointments! Our next one isn't until September 29 when he has his one year well baby check. I am so excited to not have to run, run, run this month. Since Tommy was born, the longest I have been away from the hospital is only 10 days. Now I get to take an entire month off.

I am happy that now Rob can work all month instead of taking a day off every week (which means we lose money). We really need this break. We still have therapy several days a week, but I don't have to go anywhere. I still have to get Tommy out of bed every day, so I am not doing any extra except changing out of my pajamas.

Tommy is doing beautifully. He got another tooth and I didn't even know he was teething! He's been in such a fantastic mood. I think since he started the antibiotics for whatever was in his trachea really made him feel better. He is being lazy with his therapists, though, so I have been keeping an eye on his coloring and demeanor. I've determined he is just a night owl! I can get him up at 8 and he still wants to sleep all morning and play all night. The therapists can't change their times, so this is the best we can do. Hopefully I can get him to change his ways and stay awake when they are trying to work with him!

So now we are doing the birthday countdown dance...It's almost here! What a year we have had!

Wednesday, September 5, 2007

Catching Up For The Week

Well, we've had quite the week! Tommy had a routine bronchoscopy done by his ENT Friday morning. It went very well. I have all the medical mumbo jumbo on my carepage if anyone cares for technical details. It all comes down to his airway has grown. That's a mixed blessing, because it means yes, he has more of an airway, but it also leaves him wide open to aspirate more. Ho-hum...His doctor is sure it can be handled eventually and we have a 95% chance of getting his trach out once an for all. I've come to learn this past year to NEVER expect anything from Tommy! Good or bad!

So that leads up to Labor day weekend. We were lazy pretty much the entire weekend. Rob took Matthew fishing on Monday, but they ended up home after just a few hours because nothing was biting. At least they went and made a memory together.

Today was our first day of homeschooling for this school year. I think it went very well. Brandon learned what the letter "A" looked and sounded like, so that is a great thing. I think we will do a letter a week. Matthew wanted to be in Kindergarten instead of fourth grade today! He eventually settled down and had a really good day as well. Now I am trying to get them to go to sleep. It's a little after midnight and the little monsters just won't drop! I guess I will just have to keep getting them up at 8 in the morning and pray they start sleeping at night!

Diagram of Tommy's Heart Defects

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