We’re Home!

Mary Clare’s catheterization went exceptionally well yesterday! So well, in fact, that by the time we were leaving for lunch around 1, they paged us from the lab to tell us she was in recovery!

They didn’t have to balloon her aorta or shunt, so it only took about 3 hours total! The echos usually overestimate measurements, so the catheter, which is a much more accurate reading, saw that the narrowing of her shunt is simply from her growth, and nothing significant at this point. The aorta looks fine now and they will continue to watch it. It may be that she will have to balloon it in the future, but now it isn’t necessary at all. They also told us that they “put in a surgical request” for her next surgery, the Glenn. It will be sometime within the next four weeks. We’ll find out next week.

When we went into recovery, she was sleeping. She was extubated, had an IV and a small O2 mask, and only her leads stuck to her chest (reading stats) That’s all! What a difference. I don’t know what we were expecting, but she looked great.

They discovered that blood flow to her lungs is a bit off, in layman’s terms. This is somewhat common in Hypoplastic babies, after the Noorwood. During her next surgery, Dr. Bradley will “patch” her pulmonary arteries to balance blood flow to her lungs. Currently, her right lung receives more blood, than her left. Nothing to worry about, they said. (Easier said than done!)

She also weighs about 12 lbs 10 oz, which is only about a 2 oz wieght gain in two weeks. This may be a result from her heart working a bit harder, as her shunt is getting tighter for her growing heart. She also expends more calories as she is breathing a bit harder from lower O2 levels. Again, all of this will be resolved after her second surgery.

Yesterday afternoon, she was a bit swollen and had bright red cheeks for several hours. She also had a newborn night last night (up every 2-3 hours eating) I guess she was catching up from yesterday! This morning, she is back to her usual self, smiling, laughing and cooing. She isn’t on any new meds, and only has a bandage aound her thigh. I’ll be able to remove it today. We just have to watch the hemotoma at her thigh!

On to better things…Like Halloween! Happy Halloween!

Catheterization update 12 p.m.

We have heard from the cath lab twice already but things seem to be going rather slowly. The last update was at 11:30, and they had gotten the lines ready and were about to begin to insert the catheter. They said she is doing well so far, so we’ll just keep waiting. I’m sure we’ll know soon if they will need to balloon her shunt and/or aorta. We’ll keep you posted.

Catheterization Day- 10:25 a.m.

After handing over Mary Clare to the anesthesiologist we are just now settling into the PC-ICU waiting room. She did exceptionally well, especially considering she hasn’t eaten now for almost 12 hours. She was smiling and cooing at everyone and was in such a great mood, which made it all the more difficult to send her back with them. All of the nurses were coming over to see her and kept telling us how beautiful she was, how healthy she looks and laughed at how much blonde hair she has! We just received a page from the Cath lab. She is now asleep and they are doing an echo before beginning the actual catheterization.

They explained that they will “gas” her first to get her drowsy, then place an IV. She has to be put under general anesthia because of the “repair” work that may be done, but hopefully they will be able to extubate her before we see her again. (remove the breathing tube) Once she is stable with the anesthesia, they will place a catheter in her femoral at her thigh. A typical catheterization usually takes around 3 hours, but if they “balloon” her shunt and/or aorta, it will take several more hours. Once they are in her heart, they will be able to determine exactly what needs to be done. They will page us with her progress as the day continues. I’ll keep you updated. Please pray that all goes well with our baby girl.

Happy Halloween 2007!

The Princess and the Pea…

McCanless and Mary Clare were both sick this weekend and we missed out on so many Halloween events that were going on. So for fun, we got out Hallotween costumes a bit early and had our own party. I dressed the girls, popped popcorn and we all watched Halloween movies in costume, of course!

A pumpkin fit for a princess…

Mel isn’t thrilled to live in a house that boasts a princess castle jack-o-lantern on it’s porch, but I think he is coming around. (McCanless was really able to help out this year, so our castle is about two towers short, but we still think it is the most beautiful pumpkin in the neighborhood!)

Just a quick update on scheduled catherization…

I just spoke to Frances, the nurse practitioner on 7C at MUSC. As it goes having a 3-year-old in preschool and with the onset of cooler weather, both of my girls are very congested. Mel took them to our pediatrician yesterday and both were sent home with instructions to have plenty of fluids, and McCanless given the old trusty Phenergan with Codine. (too bad it doesn’t make her drop like it does most kids…it does the opposite, imagine that-McCanless hyper)

Mel failed to mention to the dr. that McCanless has been running a fever and Mary Clare has had a runny nose for a few days, which miracously didn’t show at the dr. apt, of course. McCanless woke up in a puddle of sweat with 102.6 temp and Mary Clare sounds like a scuba diver as she breathes. Life with children….

My main concern is Mary Clare’s scheduled catherization on Tuesday morning. If she is too congested, they will have to postpone. After speaking to Frances this afternoon, we were encouraged to give her lots of fluids, and play the waiting game. Hopefully, she won’t get McCanless’ fever and this “funk” will clear up a bit by Tuesday. After the initial shock of having to get the catherization much sooner that anticipated, we are now mentally prepared and ready to get it behind us, so again, this is another mental blow.

She has gotten though open heart sugery like a champ, surely this cold won’t stop her! We’ll keep you posted!

The princess and the uhhh…vegetable?

Okay, Mary Clare isn’t going to be a bunny for Halloween. This is just a picture of her in a coat that I found in our attic boutique…aka McCanless’ hand-me-downs. McCanless was born in January, and I didn’t take her out of the house until Spring, so, unfortunately, she was unable to wear so many of her newborn winter clothes. (She was probably too big for them anyway) Fortunately, however, Mary Clare is still tiny, so she fits into them nicely! This is an adorable coat we recently discovered!

Also, if you ask McCanless what she and her sister are going to be for Halloween,she will usually say she is going to be a: Princess Fairy, Cheerleader Princess, Dancer Angel Princess , Fairy Princess Cheerleader, etc.. etc.. you get the idea, and her sister is going to be a string bean or a vegetable. She never remembers.

BUT, like I have done the past couple of years, the costume McCanless chose several weeks ago, a glittery, fluffy, obnioxously pink princess dress and gold glitter shoes are tucked away, nicely hidden in Mommy’s closet. I knew if she had it before Halloween, it would look like all of her other costume dresses, torn and tattered from daily wear. She has completely forgotten about it. I can’t wait to see her face when I show it to show it to her tomorrow when I get it out for the THA Halloween carnival! She is going to be so excited, I’m sure! I also have a “real” tiarra, and matching jewels! She going to be a princess and Mary Clare a pea. My very own Princess and the Pea!

The root of all ADHD…

Mary Clare got a new toy for her 4 month birthday!! McCanless had an exersaucer and it was bad enough, but now they have jumping exersaucers, and 30 from which to choose. You should have seen us in Wal-Mart trying to decide which one to buy! (McCanless definitely had her own agenda….she LOVED the pink one with dancing animals that was more like a walker.) I don’t want to risk Mary Clare’s physical health by allowing McCanless to cart her around the house in a walker just yet. I have almost had to ban McCanless from getting near Mary Clare in her swing. I think she tries to push her into orbit at warp speed.

With this new and improved Exersaucer, the babies not only get to swivel around and play with 500 flashing, sounding toys with lights and nursery tunes, they can now jump at the same time. She loves it! (Just as McCanless loved her exersaucer) Although we have it set on the smallest setting for the smallest baby, we still had to place a cushion under her so she could reach the “floor” to be able to bounce.

4-month-old McCanless and her Exersaucer in May 2004…

Reality hit

Yesterday, I received a call from Dr. Forbes, Mary Clare’s cardiologist at MUSC. Her catherization has been scheduled for October 30, which is next Tuesday, one week away. I knew it was coming, but it just seems so soon. Apparently, he is pretty certain that her aorta will need to be “ballooned” and the sooner, the better. We will also have a better idea of how her heart is doing and will be able to schedule the 2nd surgery, the Glenn.

I know that the catherization is necessary and I know that it is really nothing compared to what she has already been through, and unfortunately, still to come. Still, it is all the more difficult as we have had such a wonderfully smooth “almost” 3 months home with her. She will be 4-months-old on October 27.

We will have to be at the hospital at 7 a.m. on Tuesday morning and must be prepared to stay overnight. She can’t have anything to eat after midnight. I’m not sure how I’m going to do that. She has done well on her feeding schedule, but still wakes at least once to eat, which is why I’m up writing at this crazy hour. (And she has quite a temper when she isn’t fed ASAP!) I was hoping to have a few more weeks to work on that. Nothing like a crash course!

She will go under general anesthesia for the procedure, which Dr. Bandisode at MUSC will be performing. As always, we’ll be right there in the PC-ICU waiting room with access to a computer, so we’ll be keeping the blog updated with results. (it does wonders when trying to keep busy)

I signed up to help with McCanless’ Halloween party at her preschool on Oct 30, the same day as Mary Clare’s catherization. That’s hard too. I know in comparison, it seems silly to worry about missing a school party vs. being at your baby girl’s heart catherization. But, when you realize how important these parties are in the mind of a three-year-old and how she has been so excited about it, it breaks my heart. The thought of having to leave her again, even for a couple of days, just kills me. She understands that Mary Clare is a little sick and her heart is “broken,” but she doesn’t understand why that takes us away from her. I know one day she will understand, but right now I know it is hard for her.

OKAY, on to good news…we’ll be one more heart procedure down by Halloween and closer to a healthier Mary Clare! We’ll quite possibly have her second surgery well before Christmas and will be home post- Glenn ready and waiting for Santa!! What a year it will have been, and what better way to celebrate Christmas? We are truly blessed and so thankful for such a wonderful year!

2007 State Fair

Her Favorite!! I was a nervous wreck…she was kicking and twisting and throwing her head back. She even let go a few times! My little dare devil was not afraid at all!

She and Daddy hit every fun house at least three times!

She was so excited the entire time, and skipped EVERYWHERE we walked!

Do you think we had enough to eat!?

Another favorite of McCanless’ (Have you seen how tall these things are?) After all that food, this was not a good idea…(well, for Mommy it wasn’t)

Time to go it alone! Fortunately, she is very tall and able to go on many of the rides alone. She wants to do everything “all by myself” these days. Not so fortunate for Mommy, who was having a bit of difficulty breathing as I watched my baby walk up those stairs alone. (or run rather)

GAME TIME!

Okay, so we’ll never see her winning the Darlington 500, but she did give it a try. She has never been a child who LOVED the little motorized cars much, just an occasional slow drive in her Princess car. She couldn’t quite figure out the steering, and she gave herself a bit of whip lash, so before the buzzer marked the end of time, dodging the mini cars, she quickly slipped by the Fair Ride Attendant, jumped the rail and abandoned her own bumper car.

…and as if whip lash wasn’t enough, she now has a walnut size bruise on her chin. Obviously, Daddy’s wreckless driving and need to attack every kid on the bumber cars resulted in numerous “chin knocks” for McCanless. She may have been a bit too short for these bumber cars.

…a little more sugar, anyone?

Her very first real roller coaster.

By this point most of the good parents had left and probably tucked their kids into bed. Our little night owl was going strong. (the sugar probably had something to do with it) The good thing about it was she was able to walk up to any ride and jump right on with very little or no waiting at all. We also had the pay-one-price bands, so she rode everything at least a dozen times.

So, the sugar really started to kick in around 9:30 pm…

This was on top of the ferris wheel. I literally had to HOLD HER DOWN!

In all of the excitement, we forgot to go see the animals before it was too late! McCanless was a little upset with us for not taking her to go see them. She didn’t want to leave at all!

Mel and I had a nice, quiet ride home.