As the Awareness Comes

Cuddling in bed watching Dolphin Tale.

In movie little girl comes to see the dolphin with no tail. She has no leg.

Jilly asks why she doesn't have a leg.

I explain that maybe she was born without one.

She says...like me.

How like you?

I was born with a broken heart. She was born without a leg. Kind of the same.

Kind of.

Movie continues. Dr. Clay tells kids that if Winter (the dolphin) continues swimming the way she is without a tail she will die.

Jilly contemplates this.

Mom?

Yes?

So I was born with a broken heart?

Yes.

Is it fixed?

Too much and too young to try and be honest and explain. So a yes, sort of, can suffice. Only one of us needs that anxiety and worry.

Quiet contemplation continues.

I wonder what her little mind is thinking. But afraid to ask.

Man, this is hard sometimes.

Made harder by the fact that of late there seems to be too many heart kiddos dying.

Tags

I am looking into getting a different medical ID bracelet for Jillian. She has sports band type that I got her when she started kindergarden. She picked it out. But she hates wearing it. It is itchy. And I do have to agree - the material used is a little itchy on a skinny little wrist.

She would like one of the old school bracelets. Or the one with the little pink beads. So I am looking at the different options. May go with the original kind of silver medical ID bracelet and call it a day.

But I was remembering when I ordered her the sports band and you have to type in the information you want on the band.

I was a little stumped with that one. They only give you so much room.

It's not straight forward like "asthma" or "diabetic". Those are easy to type in. EMT is going to look at that and know exactly what it is.

Fontan. Not so much. Do I put Fontan? EMT looks at that and goes "what the hell is Fontan?" Do I put "single ventricle"? Well, there so much too that it really doesn't do her reconstructed heart justice.

Maybe I can put "see instructions" and then EMT will know to look for a note. Maybe "call mom" and then I can explain things to them.

Because there is really not enough room to write:

"Dear EMT person. My child has a single ventricle heart. She has a Fontan circulation. Never heard of it? You're not alone. Basically if she is having an emergency with her heart you need to know that her superior and inferior vena cavas have been dissected and reconnected to her pulmonary artery. She has passive blood flow. So that means her blood flows through the lungs without being pumped by her heart. You know how most people have two ventricles. She doesn't. Only has one to do the work of two. Oh, and be careful there are some mix-matched arteries - they are transposed. And maybe a few rubber bands and paperclips and duct tape. Oh yeah, and she has a plastic tube left in there cause it was too dangerous to take it out - so watch out for rouge blood clots."

Yes, I am being tongue in cheek here - cause really all I want to say is she has a very special heart, please be cautious and take good care of her.

There's just not enough room to type that in.

Thankful Bounty

I am a lucky girl. Today and everyday I am grateful and thankful for so many things. My cup runneth over.

I am thankful for doctors, surgeons and hospitals.

But I am thankful we have gone from this:

To this:

From this:

To this:

From this:

To this:

And I am so very thankful for such beautiful, intelligent, thoughtful and fabulously cool kids:

And for one awesome and good looking husband

Smarty Pants

I have to say that the Matt Nathanson song you may be listening to right now as you read my blog just makes me smile. And tap my foot. And get up and dance around my kitchen.

Jilly got her report card last week. Straight A's. Even a few A+ grades.

I remember a time not too long ago that in 2nd grade you just got an S or something like that. Cookies at snack. Tetherball at recess. Are you reading at grade level? Great. Being a good neighbor? Fantastic.

Now? Higher stakes. These little 2nd graders get real grades.

And Jilly is a smarty pants. Reading at a 4th grade level. One of the top students in math. Highest fluency rate (means she can read pretty darn fast).

This is such a huge thing for me. Well, I mean obviously I am happy that she is smart and doing well in school. But it's huge because of what I thought we were facing when it came to learning for Jilly.

Those first few years we heard many, many, many times to be prepared for learning difficulties. Because she had been on bypass three times, which means a lack of blood flow to the brain, the statistics told us she would have learning issues. Because she lived the first three months of her life on oxygen and very low oxygen levels in her blood because of her failing heart statistics told us she would have learning issues and possibly cerebral palsy. Because she lived the first three years of her life with low oxygen levels statistics told us to be prepared for learning disabilities.

Those first three years I had plenty of doctors and nurses try to prepare me for a lifetime of difficulties.

Can I just thumb my nose at all of those statistics? Yes, I think I can. Because this here girl is one smart cookie.

The medical community and statistics also tried to prepare me that we would also face a child with ADD or ADHD - some correlation to do with bypass surgery and low oxygen levels. Happy to say that is not an issue. And from experience I know what a 7 year old with ADHD looks like and it isn't Jilly.

It is just one less worry to check off of my worry list.

I just love that this girl loves to learn. She is like a sponge and just soaks everything up.

And of course it warms my heart that she shares a love of reading with me. Gets the same goofy grin when we walk into a library. Gets so excited when she finds a new book that she didn't see the last time we were there. Checks out like way too many books and then lays on the couch for a solid three hours just lost in her book.

Love me some smarty pants.

Something the Lord Made

I know most of you heart moms out there have seen this movie....if you haven't, you should.

But so should all of you others out there whether or not you have been personally affected by Congenital Heart Disease. This movie is just awesome.

I have watched it many times. It is recorded on our DVR. Last night I was in bed, sick. Nothing good on tv (damn you, Glee). So I watched it again. And cried as I always do when they are operating on the blue baby.

I am so thankful for Dr. Blaylock, Dr. Tausig and Vivien Thomas. That they had the courage to forge ahead on operating on blue babies when everyone else thought they were crazy. It is a direct result of their research, expirements and passion to help that my Jillian is alive today. Actually, one set of her multiple defects is called Tausig-Bing Anamoly - named after Dr. Tausig.

Even though time has passed there are days that I am just overcome with the amazement of medical technology and what it has given me.

And little Ms. Jillian is probably one of the sweetest little girls I think I have the pleasure of knowing.

I was telling her about a little boy whose mom I know who just had his first open-heart surgery. He's a little bit younger than her. When I told her that he had his surgery and was home now she said "We should go visit him so I can meet him. He has a zipper like me now. It's nice to meet somebody else with a zipper. He might not feel so alone."

That kid is awesome.

Another word for Poop

To start off I would like to give you a recent funny:

Me: Jillian, that blister on your toe looks much better.
J: yes, it does - but don't touch it.
Me: ok let me just pull that dead skin off
J: NO! Don't touch my blister or you'll make it defecate!
Me: I'll make it what?
J: You'll make it defecate - that's what you said would happen if I picked at it so leave it alone or you'll make it defecate!
Me: laughing hysterically.....
J: What's so funny - you said so.
Me: I said it would "infect" it - like it would get an infection. Defecate is another word for pooping
J: laughs hysterically.....

So things are well with Jillian. I did not update after her appointment. My apologies. She did not get an echo - she just had an EKG and all her vitals. Oxygen level is good. Dr. R says everything looks good. Does detect a murmur in both groin arteries now. He said there is no intervention that can be done to open those arteries up at this point, she's too young. But he said exercising her legs to the point of pain will help open them up and increase blood flow to her legs. Yeah. Right. Just go ahead and try that with a 7 year old. But she's staying active so that helps.

He didn't break up with me though. He said he'll see us again in 6 months. So I'm thinking he either

1. forgot that he was considering only seeing her once per year
2. figured that she was so darn cute he couldn't go for a whole year without seeing her
3. he heard that I'm a freak and would pass out in his office if he told me I had to go a whole year without seeing him.

**I'm going with option #2**

School is going well. She brought a progress report home and has all A grades. She is reading like an addict. We check out about 18 books at the library - big chapter books. And she finishes them in about 1 or 2 days. She LOVES to read. And she is now into legos. The older girls didn't do the lego thing so it's new to me. And she wants new kits every day. Those things are expensive. So she is saving up some money to buy more. She spent the whole day on Saturday at the table putting together these intricate lego kits. Amazing.

Karate is good. Her instructor is so good with her. They do know about her heart condition so I think that makes the instructor take a softer stance with her. I almost fall apart whenever he works one on one with her because he gets on eye level with her and just is very tender with her but makes her work hard. If you ever want to get your kids into karate Kovar's is awesome and specificaly the one on Waterman in Elk Grove!!

Speech is still an issue. From what I hear from her she is going to speech at her school. She is still on the waiting list at Sac State (they left me a message yesterday saying maybe they could get to her 2nd semester). And yet again I had somebody ask me the other day if she was from Russia. So yes, I bristle when somebody tries to convince me that she doesn't have a speech issue.

And can I say tall? Yes. I can. Poor baby had to go to school today in dirty jeans. Did I just admit that. Ok, they were not dirty she just had worn them earlier in the week. The reason? I did not anticipate the huge growth spurt she has had the past couple of months. And the closetfull of pants/jeans she has in her closet? None, I mean NONE, of them fit. They are all about 4 inches too short!

Hey honey? We are going shopping today.

She is doing absolutely fantabulous and everyday I am so thankful for that little girl.

Fierce

It's that time again.

Tomorrow is Jilly's 6 month cardiology appointment. This is the "Dr. took pity on me" appointment when Dr. R. tried to break up with me 6 months ago and to my horror tried to suggest that we only see each other once a year. The man was obviously smoking something that day.

I have to say that after 7 years with this little miracle of a daughter I think I am finally hitting my stride as the the mom of said miracle daughter. I am afraid to voice that out loud for fear of jinxing myself the night before her appointment but I guess I'm feeling less superstitious. I'm hitting my stride, I realized, because I'm not as anxious as I have been before these appointments. I'm not doing my usual perseverating on all the what-ifs. To be honest I almost forgot that the appointment was tomorrow. I know, I know....who am I and what happened to Dina, super-uber anxious momma?

Don't know. Don't care to over-analyze it. Just accepting if for what it is right now.

But I do have to say that the calm that I feel in regards to Jillian right now is something that I have felt at times over the past 7 years at various times. The calm I must feel to take action, to not curl in a ball and give in to the fear, to march onward into the great unknown.

It's the calm I feel when I know that I have to be the adult in this relationship.

Is calm the right word? Maybe a resolve that this is my lot in life, a fear that requires bravery, momma bear is in the house and feeling fierce?

I was thinking of this the other night at my book club. The ladies and I were talking about how some people fear the hospital to the point of fainting. How some families will avoid the hospital like the plague. I was telling the story of how when Haley was about 5 she fell on a glass jar and cut her palm wide open. When I was at the hospital with her and they removed the bandage to clean the wound and stitch it the doctor took one look at me and said "m'am, you may want to put your head between your knees." I did as I was told because I knew if I tried to stay upright one more minute I was going to pass out.

When the older girls were younger I used to fret about everything when it came to them. I never felt overly confident in my abilities to advocate for them, to make sure they were receiving whatever care it was that I felt they needed - from a fever to stitches.

Then Jilly came along. And I was telling the ladies in my book club that even if you are that person that faints at the site of a hospital corridor - when you are faced with a life and death situation with your child all of that falls away. I think your mind checks out at that time and a survival mode kicks in. At least that is what I think.

I know that I went from an insecure mom who almost fainted at a little cut on my child's hand to a fierce and protective mother. A mother who saw her daughter's heart beating inside her chest because her little chest was left open for seven days after her first surgery and didn't blink an eye. A mother who watched her 1 month old baby go through severe drug withdrawal and couldn't hold her baby to comfort her but confidently held her hand and yelled at doctors and barked orders at nurses, as if I even knew what I was talking about. There was no passing out going on then.

Where did that woman come from? I'm not sure but I know as I was laying down next to her tonight, as I do every night, watching her fall into a sound sleep.....there was that calm resolve. The resolve that tomorrow I will stand next to her and hold her hand as I always do during her echo. The resolve that I will help pull off all of the super sticky EKG wires with her help. The resolve I feel when watching the pulseoximeter machine measure her oxygen levels (and making a silent wish that they are in the mid 90s). And the resolve I feel when her doctor comes in to tell me what he saw in the echo, the EKG and other readings. That resolve I feel that I must remain calm for my Jilly so that she learns to become that super-confident, strong advocate for herself, navigating through this CHD maze that will be her fight to fight as she gets older. Set those wheels in motion, be a good model for her while inside of course I beat down all the what-ifs and worries that try and escape.

I'm not passing out.

Although if Dr. R tries to break up with me again tomorrow I just might.