Some Pics

We leave our reguraly scheduled programming of anxiousness, worry and fret to bring you happy.....

Jilly finally mastering the balance beam...all by herself!

And then a few pics from Vegas:

The girls walking the strip and seeing how many "girlie" cards they could get.

Mikayla and mom at New York, New York casino - just before she went and rode the roller coaster - it was cold in Vegas!

Stress

As I mentioned in my last post Jillian has a cavity.

Add to my list hurdles jumped in our new dealing with a child with a heart defect world.

It would seem like a small hurdle. Have a cavity. Get it filled.

Not so with a kid with a heart defect. Her cardiologist also wants her on a heart monitor and pulse ox monitor during the procedure. Our dentist doesn't have those things.

They gave us a referral to another dentist who has those things in his office. He wants to do a consult with us first before he agrees to do the procedure. Kind of like he gets a choice. I totally understand. I wouldn't want someone to work on her who didn't feel comfortable.

But what about Jilly? She needs a cavity filled. Having a cavity as a cardiac kid isn't good. Risk of infection going to her heart and so on and so forth. She doesn't get a choice.

I couldn't go to sleep last night. I started worrying. I am looking for referrals from other local heart mom's. But I started worrying about going to some other dentist. Who maybe hasn't worked on a heart kid before. Wonder if something happens. Is the nitrious oxide safe? Will she be ok? 

I get tired sometimes of having to take all this on. The worry. The advocacy. The fact finding. Am I asking the right questions? What are the right questions? Who do I turn to? Who do I trust? Who, besides me, is making sure we are doing the right things?

I sit and wait. Wait to find out if this dentist wants to take on my baby with the broken heart. Wait to find out if there are any dentists around who have filled a cavity on a kid with a Fontan circulation. Can't ask her cardiologist now because she's out of the office until March 2nd.

So what about Jilly? What about what she needs? She doesn't have the luxury of opting out of dealing with her CHD. She doesn't have a choice.

Wouldn't that be nice if she did?

UPDATE - so I talked with our dentist's office and got more information - she apparantely can have the numbing medicine (not called Novicaine anymore) even thought it has ephiniphrine in it - see, I didn't know that - and it's usual practice with dentist's to give that in addition to the nitrious oxide as a calming effect - didn't know that either - and the cardiologist wants her monitored because of the epinephrine. But I didn't know what to ask - so once I muddled through what it was I was trying to figure out we got to the root of what I needed to know. So I am more informed but still feeling stressed. She has an appointment with the dentist they referred me to on March 6th. Hopefully it will all work out and I stressed unneccesarily - which is pretty common around here.

On a Jet Plane

Leaving for the airport in a few minutes. Mikayla and I are taking off to Vegas for the weekend for a soccer tournament. Weather is supposed to be cold and rainy (how is it kathy?) and I don't gamble. So maybe I can just stay in the hotel room and relax.

Jilly had a dentist appointment and she has a cavity. Not good. Her cardiologist wants her hooked up to a heart monitor and pulse ox as she can only have nitrous oxide- her dentist isn't equipped to do that - so we will have to look around for someone who can. 

Will update with some pics when we get back. 

Nutrition

I'm starting this post off with some pictures of Russ sharing his brownie batter with the masses. Well, he wasn't really sharing it with the dogs. That would be bad for them.

But all of us in this family know who likes chocolate the best. Yes, it would be Jilly. She loves brownies, M&Ms and most things with chocolate. I've checked with her cardiologist and she's not worried about her eating chocolate. She said she would have to eat tons of it to have a negative effect on her heart (think caffiene). But I started thinking about her eating habits as it relates to her bad heart.

When she was younger she gained weight very slowly. She was never at risk of having a gtube or anything like that - we just needed to make sure she showed a steady gain. Her weight stuck at certain times - couldn't get it to go up and even lost a pound or two. And that's kind of where she's at now. She is not gaining much, but she's not loosing. She's been at the same weight for a long time. But she's growing. Her doctor's aren't concerned.

But her pediatrician would give us tips on how to fatten up her food. One of the suggestions was to butter up all of her food. And now she loves butter. Russ and I took out to breakfast a few Sundays ago. She wanted pancakes and eggs. When her breakfast came she picked up the little container of butter and asked what it was. When we told her she proceeded to pick up her spoon and eat a big spoonful of it and got mad when we tried to explain that it goes on her food. So she picked up her scrambled eggs, chunk by chunk of egg, and dipped the egg into her butter and ate it. Then licked the little container clean.

As she gets older though, I am sure we need to make sure she eats healthier. Eating spoonfuls of butter, I'm sure, can't be good for her heart. Her doctor tells me not to worry about that at the moment. Just let her eat what she wants, within reason, and make sure she is getting balanced meals, which she does.

I just want to make sure as she gets older she is able to make good choices about food and understand the reasons why she needs to eat healthy. 

Because who doesn't like a chunk of egg dripping with butter.

Checking In

Long time, no post.

Just don't have much I feel like writing about. But things are good. Jilly is good. A bruised mess. But good. Being on a blood thinner that poor thing bruises like a banana. Her gross motor skills are getting better. She's hopping around on one leg like a flamingo. Cracks me up. 

Had a very nice visit with my "new" aunt. Went to a superbowl party today with some good friends. Russ has been a Steelers fan since he was a kid - so he was extremely happy today. And the weather is beautiful.  

Will post more this week. Been in a funk and staying away from the computer. But I'll be back.