Late night travels

Jillian received four booster shots yesterday, two in each arm. I was so proud of her. She didn't shed a tear. She told me she would be brave when I told her she was getting shots. She even said "I like shots." She kind of looked at the nurse after she gave them like..."that's all you got?"

So the rest of the day I kept an eye on her because for some reason I was worried about her getting all those shots. She had been sick the past week and I just had an unsettled feeling in my stomach for some reason.

She was lethargic, wouldn't eat, took a four hour nap and just wasn't her usual self. We got home about 9:30 after picking up Mikayla from soccer and Jilly walked into the house like an old woman - holding her left arm. When she climbed up onto my bed I noticed a welt the size of a quarter near one of the injection sites. As I was trying to look at it she started crying and carrying on about how much her arm hurt, don't touch the arm, don't move the arm, don't even look at the arm.

So I did what every irrational mother does - I called the advice nurse. She called the on-call pediatric cardiologist, Dr. Rivera. He called me and went over her symptoms - said keep an eye on it. He wasn't too worried. Then the advice nurse calls me back with a doctor listening in. Asked me some questions and as I am trying to answer them Jilly is carrying on in the background - crying about her arm, don't touch the arm, can't you see the arm is hurting, stop talking about the arm!!!! So he suggests to take her to the ER because kids shouldn't be in that much pain after a shot.

So what else is a neurotic mom to do. I tell Jilly, after hanging the phone up, that if her arm hurts that bad we have to go see a doctor tonight (it's 10:30 by now). She whimpers that I better take her to see the doctor cause this arm right here? It is about to fall off from the pain. So I wrap her up and leave for the ER. Mind you Russ is at our cabin and is now speeding back home.

So I sit in a quiet ER for a while. Jilly had fallen asleep on the way there and now perks up and declares "Let's go home momma." I say "but your arm hurts so very bad, we need to wait for the doctor". She proceeds to lift it up a little and states "it not so bad now, lets' go home and watch one cartoon."

Great, now not only is Kaiser going to have NEUROTIC and HYPOCHONDRIAC stamped all over my medical chart, they are going to add CRAZY MUNCHAUSEN BY PROXY WOMAN WHO TAKES HER KIDS TO ER IN MIDDLE OF NIGHT FOR NO APPARENT REASON.

So the nice, young, and might I add handsome for those single ladies out there, doctor comes and looks at her arm. Says yeah, she had a nice little reaction to the shot but she's fine. I smile weakly and mutter, yeah...well you should have heard her an hour ago - what with the pain and the arm is going to fall off from all the pain wailing she was doing. He just smiled sympathetically and in his head he is probably thinking and this is why ER rooms are overfilled - crazy moms who need reassurance in the middle of the night that nothing whatsoever is wrong with their precious babies.

I tried to justify my late night visit by saying something like yeah, with her heart issues and all I'm sometimes a little overcatious and all. So he looks down at her chart and starts reading of her diagnoses. Impressive. And I say yeah, 3 surgeries too. Post-Fontan circulation. And do you know what he says? Impressive. And he looks at her with this look like "I've read about cases like these in medical school but how neat to see one alive and in person" and he says again..impressive.

So Jilly and I leave. In and out in under 1 hour. Now THAT is impressive.

I have to say I feel lucky to have Kaiser at times like this. A beautiful new ER that has nice, young, handsome doctors, in and out in under 1 hour, two wonderful pediatric cardiologists one of which calls me back late at night to reassure me she is fine. And an awesome pediatrician who called in the morning, said he noticed she was seen in the ER last night, just ending his 24 hour shift in the hospital but wanted to call and check on her before he went home.

Her arm is still hurting her pretty badly today. Carrying it close to her side. Won't use it for anything and won't play anything that might cause her to use it. And sleeping off her wild night right now.

Statistics

I really don't like statistics.

1 in 3 women will have breast cancer in their lifetime

1 in 330 children/adolescents will be diagnosed with cancer

1 in 100 babies will have a heart defect

1 in 4 girls will be sexually assaulted at some point in their life

The list goes on and on.

I can't read a magazine, any magazine, anymore without these statistics jumping out at me from almost every page.

My neurotic, hypochondriac self can't take the horrifying statistics anymore.

I have met one statistic. Will I meet anymore? Isn't one enough?

This crazy fear of death, of illness, is tiring.

It's hard to live every day with optimism when the statistics tell me that me or someone near me is going to drop dead or be assaulted or contract some hideous disease at any minute.

There is a book I am reading called "Well Enough Alone" about a woman who is a hypochondriac. It is funny and if you are a "worried well" person like me it is very humorous and refreshing to read about somebody who has the same irrational worries as myself.

I often wonder about the irony in somebody like me experiencing life with a child with a real health problem. Certainly puts things in perspective for me....most of the time....until that knee pain/hip pain/back pain/indigestion comes back.

Breathe in, breathe out

I lie with Jilly at night as she falls asleep. I have done this with all of my girls. It's peaceful. It's bonding.

Tonight she falls asleep with no shirt on. I lay my hand on her chest. The glow from her fishy tank light falls over her sleeping body. I watch her chest rise and fall. I watch the twitch in her body that tells me she is in a deep sleep. Her body regenerating.

My hand lies on top of her scars. I can see that the incisions by many scalpels have left not-so-pretty scars all over her chest. The main incision that allowed the surgeon inside her chest. The circles lining each side of the incision, like holes for a shoe lace. The three puckered holes that look like extra belly buttons where her chest tubes were. The fifth belly button on her side where another chest tube resided. The smiley face scar on her other side from a plication procedure. There was certainly no thought to asthetics when any of these wounds were sutured. The only thought being life, I'm sure.

And I wonder. What is going on in that little body of hers as we lie here, quiet, uninterrupted. Is her heart pumping like it should? Is her liver being adversily affected by her new circulation? Are there new collateral veins growing quietly, steadily? Is anything narrowing, slowly?

I wonder when she will be able to tell me if something feels funny. Will she notice if her heart skips a beat, flutters, quivers? Will she know to tell me? Will I overreact?

She notices the scars. Just today she pointed at them and said the doctor did this to her. I asked her why and she said to work on her heart. She told me her heart is a not so good heart. But that Dora, Diego, Isa, Benny and all Dora's friends have good hearts. I asked her if she has a good heart and she told me that her heart is dancing and that is pretty good.

I look out at her bedroom. The Dora's laying on the floor, the books, the toys. I look over at her little shoes lined up on her shelf. Many shoes. A girl taking after her mother with the shoe obsession. Realizing a moment has come and gone that I was not sure sometime ago would ever come. A little girl with a not so good heart, laying on her big girl bed, surrounded by toys, surrounded by love, with not a care in the world. Right now.

I look at the fairies hovering over her bed, hanging by fishing line. Do they know what comes next? The dark corners of her room overwhelm me. The lurking unknown that is out there. This feeling that I am sometimes waiting for the next shoe to drop, the next call with bad news, the next hospital stay. How long do I have with this girl with the not so good heart?

I curl back into Jilly. Hand still resting on her chest. I breath in her smell..that of a little girl who played very hard today and didn't get the bath she needed. I kiss her cheek. I whisper in her ear that I love her to the moon and back. She stirs, eyes still closed and states in a small whisper "me too mommy"

I leave her side reluctantly knowing I need to go on about the mundane things that go on in life. I stand at the doorway for a minute looking back in on my sleeping child. A child with a not so good heart that I have for now.

That's all I can ask for.

Same conversation, different day..

"She looks good"

"Yes, she does."

"How's she doing?"

"Very well, thanks for asking"

"It's so great that she is done with her surgeries."

"As far as we know"

"Well, she's fixed and all what else do they need to do."

"She's not fixed."

"Really?"

"Really."

"I thought...."

"Yeah, well....how could you know."

"What happens next?"

"Not sure. Just wait and see how her heart holds up."

"She just looks so healthy."

"I know."

"I'm sorry."

"I know. Me too."

And the pictures

Here are our vacation pictures in no particular order:

Russ, Jilly and I at a bonfire on the beach

Mikayla and mom

family at bonfireJilly and daddy roasting a weanie
Ary, Jilly and Aunt Jan
family at the beach Russ working hard to get fire going
Haley and cousins and dogs
great grandma Lucy and Haley
cousins saying goodbyehere's the beach
Jilly and mommy watching the waves
stopping at the giant redwoods mom and Jilly waking up to the ocean
Jilly taking a morning stroll
And internet blogosphere......meet David, or uncle Doo as he is affectionately called. Say hello if you have a minute - he is now famous (there is a joke in this somewhere but out of respect for one of my lovely daughters we'll keep it on the down low)

David and his dogs

Pictures to follow...

We are home from a wonderful vacation on the Oregon coast. Russ' mom, his twin brothers and their wives and kids live in Brookings, Oregon - just over the California border. It is a beautiful, small coastal town. The weather is much like San Francisco - and we all know how much I hate..oops..I mean love that weather. But the weather was great while we were there. The kids played in the ocean. We rented an RV and camped at the ocean. I love falling asleep to the sound of crashing waves.

Jilly had an awesome time playing in the sand and the ocean. Only one small misshap and if you could hear her tell it it goes something like this...."I was playing in the ocean, the ocean grabbed me and pulled me under and I got sand in my nose and my mouth and I cried for a long time and my mommy grabbed me right up and gave me a cold shower. The end." So yes, the surf knocked her feet right out from under her. Luckily I was standing by her and was able to reach down and grab her before the surf took my baby out to sea. She says she doesn't like the ocean no more. Haley was also abused by the ocean. She went too far out and a big wave crashed down on her head and pulled her under. Her cousin and I just stood there waiting for what seemed like several minutes looking around for her. I was contemplating going in but wait...I had my good jeans on....no just kidding I would have......called for help.

All in all we had a great time. Nice to spend time with family that we don't get to see very often. And we kidnapped Great Grandma Lucy from Sacramento and made her come with us.

Russ promises me he will download the pictures for me later today. If something ever happens to him, like he cuts his fingers off or pokes his eyes out or becomes senile...I'm in big trouble. So I will post many pictures from our trip and one of Russ' brother David who wants to become famous by being on my blog.

Soon....

How are you? Hope you're well. Will update on Friday. On vacation. Enjoying family time, ocean breezes, sand in my toes. See you then.

Enjoying

Been gone awhile. Had a great time shopping in San Fran with the girls and Grandma Lori and a stow away named Jake:) Here are some pictures from our day.

The girls and their cousin Jake at the pier

Mikayla and Ari posing in Juicy Coutoure

The girls in the limo on the way to San Fran

Haley and Mom in the limo

Then on Thursday we left for our cabin. Haley went camping with a friend so it we were less one kid. We had a very nice time and Jilly loves being up there and playing in the river and hanging out at the cabin.

Jilly playing at the river

At the cabin - me hiding my face - and the view

The girls playing in the cabin

The older girls enjoying a swim

The days have been lazy. I realized only 3 more weeks until I go back to work. Every summer the time flies by and I only do a fraction of the things I intended to do. So I need to get through some things these next three weeks. So we'll be on the go - inside stuff for sure with the forcast calling for 106 temps for the next week at least. Yeah!

Good check up

Jillian had her 6 month cardio check up today. Echo, ekg. Everything checks out good. Oxygen a little low at 94 but nothing to be concerned about. Dr. H thinks it could be due to the horrible air quality in California lately. Won't see her again for another 6 months.

I on the other hand got to wear a holter monitor yesterday and today. Having those pesky heart palpitations. So far blood work has come back normal. Won't know results from monitor for 3-5 days. I'm thinking less caffiene is in order for me.

Last week was busy. Had relatives down from Oregon (Hi Aunt Jan!). Jilly finally got to meet some of her dad's side of the family that she hasn't met before. And we ended up with an extra kid. Uncle David's and Aunt Jan's daughter Ari is hanging out with Mikayla for two weeks. Have I mentioned how much I like teenagers. They are so self-sufficient.

Going shopping in San Fran tomorrow with Grandma Lori. Should be fun and I'll post some pictures.