Searching for Fontan......pick me, pick me!!!

Did you just google Fontan?

Is it in the middle of the night? Sitting in a cold computer room at the hospital? Holding tight to your IPAD sitting at the bedside of your newborn? Trying to see the words in front of you through  your tears?

If this is the first thing you have stumbled upon in your search for information in your shell shocked state of mind do me a favor. Stop!

If you have already happened upon web page upon web page of doom and gloom, horrible statistics, scary medical jargon....enough.

Googleland can be a very scary place at this point in your journey, so tread lightly.

I remember.

I remember googling this crazy set of complex heart defects Jillian has, sitting at a computer late at night and being scared to death.

I remember googling Norwood, Glen, Fontan and wanting to throw up. I may have a time or two....or three.

Because the only sites I came across eight years ago were filled with horrible statistics, life altering scenarios, heart breaking stories. And terminology that my non-medical mind could not comprehend.

And it scared me to death.

I walked around in a fog for weeks once I found out Jillian was going to have to have the three staged surgery and life with a "normal" heart was long gone. I would stop nurses with the look of a crazy person and ask them time and time again...."will she be able to run, talk, learn?" "Will I get to take her home....ever?" "What does the future look like?" "Tell me, tell me, tell me!!"

And they would smile at me with those kind eyes and tell me "every story is different, every heart child is different..."

If you have been diagnosed in utero with HLHS/HRHS/or some other complex CHD that doctors are telling you will require many surgeries, that your childs heart can't be fixed, that maybe you should terminate.....get a second opinion, a third if you need to. Talk to experts.

If your child is diagnosed after birth, like Jillian, and you have a doctor telling you that they can't fix their heart but they can re-plumb it to give your baby a shot at life....believe them.

If you have any doctors who are not cardiothoracic surgeons or CHD experts (say for instance a NICU doctor who knows about premies but doesn't necessarily know much about CHD) try and tell you to use comfort care and not make your baby a part of your life tell them to kiss your ass (I wish I had).

But most importantly DON"T sit there on the computer reading all the bad, scary things about the Fontan. If you must get information google CHD awareness and connect with other families who have already traveled this road and get support.

I am here to tell you that there are hundreds of kids - and more and more adults - who have had the Fontan and are living very happy and active lives.

That is not to say that your journey won't be scary. That it won't be without roadbumps, sometimes some very big roadbumps and big doses of heart break.

But there is hope. Lots of hope. And some very talented surgeons and an array of doctors whose focus is to give these kids a shot at life.

And as some very wise nurses continually told me....every heart child and their path and their story is different.

So back away from the computer and make your own story.

I hope it's a good one.

Camps, Drums, Avengers....oh my

Yeah, it's me. I'm updating. Yes, I know. I am severely slacking in my updating skills. Sorry.

Happy New Year!

Christmas was good. Or should I say EXCELLENT from Jillian's point of view. She very happily received the drum set she has told us only 1, 001 times that she has been asking for since she was 2. Funny, I don't remember it that way. But whatever, she got it and she is one drumming fool. If you follow me on facebook you have seen the video of her drumming her heart away and singing a lively rendition of "Girls Just Want to Have Fun". We have a rocker in our midst.

Sometime at the end of November I think, Jillian was having dizzy spells. She would be sitting at the counter doing homework and all of a sudden put her head down and say she felt dizzy. She said she was having that at school, both on the playground and in the classroom. I assumed she was probably dehydrated because if she has it her way she will drink milk all day long and only drink water if told to. I know that dehydration is important with her Fontan anatomy because Dr. R says at every single appointment to not let  her get dehydrated. I will have to educate myself a little more on the specific reasons incase anyone asks why because I'm not entirely sure why, but I know it's important (this whole Fontan anatomy still puzzles me at times).

So I let Dr. R know about the dizzy spells. She had to do the dreaded halter monitor. Dr. R said check the color of her urine and drink more water (see, that whole dehydration thing again.).

I'm driving Jillian somewhere a few weeks back and somebody calls. I answer (on my handless headset of course) but Jillian was in the middle of telling me a story and when Jillian is in the middle of telling her very long winded stories you best not interrupt her or else. So I answered the phone call and put up my finger as in "hold on a minute Jillian, I'm answering the phone"

Somebody identified themselves. I think a doctor, maybe a nurse, definately female. I did hear something about the results of the halter monitor. But by my signaling to Jillian that she would have to pause her story when she was not ready to pause her story......the girl in the backseat went unleashed. She started talking very loudly - I think continuing her story because she was not going to be shushed. I was stopped at a light and I turned around and gave her that mom glare. OMG! By the yell she let out and the crying that followed you would have thought I turned around and threw her out of the car into oncoming traffic.

The  lady on the phone asked if this was a good time. I laughed.

I guess I should have said that I would call her back. But I was being as stubborn as my 8 year old. So I pulled into a parking lot and got out of the car so I could hear her. She went on and on about something regarding skipped beats that is normal with Jillian but there was something about a little more than skipped beats or extra beats - I got flustered. It was cold. And then that word "dehydrated" and "blood test".

So all of this to say they are not too concerned about her dizzy spells (which she is no longer complaining about) and she needs to drink more water.

And learn to pause her stories.

Along with all of this strong-willed, story telling, increasingly independant little being.....Jillian wants to go to Camp Taylor.

For those of you who don't know, Camp Taylor is a camp for children with CHD. A place for them to meet other kids like them. Check it out at www.kidsheartcamp.org. I think I mentioned Camp Taylor in her presence last year because I have been wanting to go to the Family Camp since she was born but have never been able to make it work and she has asked about it periodically since.

So we check out the website and she is jumping up and down next to me - checking out all the pictures of kids her age - swimming, crafting, singing, smiling. And she wants to go. Like NOW! Like don't interrupt her story or else!

She has a great argument. She hasn't every really met anyone else like her. She hasn't seen another kid with a chest scar. She is like the bearded lady at school. The girl with the cool zipper. But mom! Nobody else has a zipper like me. I want to go!! I love to swim, I love to craft, I love to sing and dance and play with other kids and like OH! MY! GOSH!! I. HAVE. TO. GO!!!

I told her it's for four whole days. That would be three whole nights. You know? Those nights where you yell to me on a nightly basis can you come to my room. Your scared. You have to go to the bathroom. Is it time yet to get in my bed and cuddle. Those nights? I asked her about that and she was like "Mom, I'll sleep where they tell me and if you are not there I'll stay in my bed, duh!"

Who am I to say no. Although after she left the room I had the registration page up and Russ said "are you serious about this?" Well, I think so. Like I should consider it. But hmmmm, it is four days away from us. He chuckled and said "I mean  you, are YOU ok with this because it will be four days of you away from her."

Ok, he does have a point.

So any heart moms  have any experience with sending the precious cargo away to Camp Taylor (or any other similar camp in another state) at the tender age of 8 (she will be 9 by the time camp comes).

Alot

Haven't updated in some time.

Things are good. Jillian had her 6 month cardio check up in October and all is well. She was dissappointed that she wasn't getting an echo. Dr. R has decided to only do an echo every other visit, so once per year. The other visit will just be an EKG and general check up. She is doing well so no complaints from me.

Halloween was fun. Jillian was Darth Vadar and stayed in costume all month. She LOVES Star Wars. Guess what she picked for her ornament this year? Yup, you guessed it. Darth. And her Christmas wish list? Mostly action figures and Sock em boxing gloves. No time for that girlie stuff here.

School is good. Third grade is more of a challenge for both her and I. I mean really? Checking her homework every night? But she's doing well and loves her teacher.

I got a new book. It's called Heart Warriors by Amanda Rose Adams. It is about a family facing Congenital Heart Disease. Sounded interesting. Thought it would be an easy, enjoyable read. Not. Don't know what I was thinking.

The first time I started reading it was in the waiting room at Sac State while Jillian was at speech therapy. There is a forward from a Cardiac Surgeon. Half way into his writing I got that old, familiar knot in the stomach. Kind of sucker punched me because I was so not expecting to have such a reaction. Then the tears started welling up in my eyes. I kept reading. First pages of Amanda's story and I was holding down a sob. Tears falling down my face. That awful feeling in my stomach.

I had to stop reading.

It was especially hard to read about her description of the Norwood, Glen and Fontan. She explains them in easy terminology for anyone to almost understand and with a little sarcasm thrown in, which I love. But it just hurts all over again to actually read it. To know that Jillian had those same things done to her.

I so did not expect to have such a strong reaction to this book. But I have kept reading it. And it is good. I love the way she is telling her story. She reacts to many things much the same way I did. She uses a lot of the language I probably would if I ever wrote a book.

And the story is so damned familiar. I feel like I am walking right beside her in the hospital hallways. Sitting in the same waiting rooms. Sleeping on the same uncomfortable chairs. Same worries, anxieties, fears.

But every time I take the book out I know I will be crying the whole time I am reading.

I mentioned speech. Yes, Jillian is finally getting services through Sac State. And the therapist who is working with her has validated all of my concerns. And the one that really gets me mad is that she is having to work with her on the way she moves her jaw for certain sounds. Jillian does this because she was compensating earlier on for sounds she couldn't make or because people couldn't understand her. But remember that I was told she didn't qualify for services? I tried to get her early intervention and couldn't. But she's getting it now.

Many things to be thankful for.

Jillian was asked at Thanksgiving what she is thankful for. Without even hesitating she said.."I am thankful for the surgeons who operated on my heart".

And so am I Jilly Bean.

Old entry

I haven't updated in a bit but I was organizing some things on the blog and found this old entry dated July 22, 2008. Kind of sums up my evenings as of late:

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.

Check Ups and Studies

Summertime

Just lounging around. Not doing much of anything. But as time winds down and I go back to work soon it is time for the check ups, dentist appts, molar removal, etc etc.

Jillian had her well check last with her wonderful pediatrician. Love him! He hasn't seen her in two years, since her last well check, well because.....she's been.....HEALTHY. As much as we love him there has been no need to see him.

So...she's tall. Growing well. No complaints. Still dealing with leg pain, but that is more of a cardiac issue.

At the end of the appointment he gushed. Yes, he gushed. He told me when he saw that Jillian was on his calendar the other day he was so excited and couldn't wait to see her. He talked about where she was, where she's been and it just makes him so happy to see how well she is doing. He ended with she is a story that makes a doctor happy. Love that guy.

On Tuesday we took her back to UCSF. Nothing surgical. No interventions.

She went to have a follow up evaluation by a neurologist and a developmental psychologist. She has been a part of a cardiac MRI study since she was diagnosed with severe congenital heart disease as an infant.

You can read about the study here:

http://www.ucsfbenioffchildrens.org/newsletters/news_for_physicians/summer_2008/congenital-heart-disease/index.html

Basically they are researching the link between more severe heart defects with brain injury. What they have found is that through MRIs these babies brains look more like premature babies and that the thought is they risk more problems with brain development thus the "brain injury". The thought was there was risk of brain injury during surgery but they're finding that with the more serious heart defects the brain injury may already be there.

We agreed to be in this study after the doctor who runs the study came by after Jillian was admitted to UCSF. It's funny - at the time I was rather angry - and I called the nurses and staff associated with the study vultures. They were looking for certain defects so not every child was asked to be a part of the study. It seemed I only saw these "study" people when - what I referred to as fresh meat - had been admitted. At first I told Russ I wanted them to stay away...like I said, I was angry. But then I figured as long as it didn't hurt her and cause her any more suffering or pain and might help babies like her in the future, why not.

So she had the MRIs before and after her surgeries. Then she was asked to come back when I think she was almost two for a battery of developmental tests. Over the years we have had some questionarries.

Then about two weeks ago UCSF called and wondered if we might bring her in to do those developmental/psychological and neuro tests. Why not?

I explained to her beforehand where we were going and why. I told her that she was helping the doctors to learn more about children like her and how to better help them. She thought that was cool. But then she had more questions about what exactly they were going to ask her. I tried to explain as best I could. So she stressed a little because she wanted to make sure they knew she was smart. She even said she hoped they asked her why the stars are on the flag because she would so nail that question.

But she was a rockstar as usual. Did just fine. They don't tell us anything but I know that developmentally she is doing great.

We visited the 7th floor which is where the cardiac ICU is and saw a few nurses who are always happy to see her.

But as we waited for her during her testing I had some mixed emotions. Going to San Francisco is not a pleasure trip anymore. It's not something we will wake up and go "hey, lets go visit San Fran". Bad memories. And definately pulling into the UCSF parking garage, walking through the doors, waiting for the elevator, walking through the halls....brings so many emotions back to the surface. We waited in the waiting room on the 6th floor, which is mostly the children's oncology floor and where the playroom is. I walked down the hall to use the restroom and had a smile on my face because of something Russ said as I left the waiting room. I was passing the playroom and looked in and saw a little girl sitting at a table coloring. She was hooked up to an IV and was obviously sick. I stopped automatically at the window and just stared at her. The smile left my face. I felt guilty that I had been walking happily by with a smile. I looked over and saw the weary, tired, overwhelmed parents bravely smiling at their kids.

Being in that hospital brings such a mix of emotions. The familiarity. It almost feels like a homecoming when we go. The fear. The smells. The blank faces. The beeps of the machines. The overwhelming despair and sadness that I felt there. But also the hope and happiness of having Jillian to bring home. The tears, the laughter, the depression, the solitude.

It's all there, waiting for me every time we return.

And what a relief it is when we leave, after a short 3 hours, our Jilly intact...smiling, laughing and absolutely sure that she nailed those questions that lady asked.

Birthday

Today Jillian turned 8. 

Every birthday is a milestone. 365 more days. 1 more year.

8 years old. Hard to believe.

Her being in my life has been one of the greatest pleasures and joys I have no words for. All the lows and all the highs. All of the hurt, heartache and unknowns. All of the anxiety, worry and fear.

All of that is overshadowed by her. Her personality, her charm, her humor, her stubborness, her sassiness.

All that she is and will be. 

I have a little area upstairs between my room and hers. In this area I have photos that are all special to me and have some meaning to them. 

One of the most special ones is this one:

This photo was taken on probably one of the lowest days while Jillian was in the hospital. As if you can't tell she is probably the sickest here. Her heart was failing. We were in a holding pattern. There was not much that could be done. We were waiting for her to be old enough to perform the second surgery. She was very, very sick. And I was very, very heartbroken. This photo was also taken right after she came back to UCSF from another hospital where I was told to walk away from her. That her life wouldn't amount to much.

This photo is a visual reminder to me of where we have been. That when we were at our darkest there was hope. That after all she went through, after all the tears, worry, frustrations, despair....she came out on the other side.

We were living minute to minute in those early days. I measured her life at that time by each minute she lived. If we made it through another hour that was a victory.

As she became healthier and came home I measured her life day to day. Each day I woke up to her beautiful self was a fabulous day.

To this day my mantra for my girls is each day you wake up is a glorious day. I believe this. I live this.

On days when Jillian is a little more challenging than usual and I find myself being impatient this picture will catch my eye and remind me of how very lucky I am.

After 8 years I finally feel that I am measuring Jillian's life by years.

8 fantabulous years of this crazy little girl who adds sparkle to our lives every single day of every single year we have been honored by this miracle.

And her life is fabulous and has amounted to extraordinary and priceless amounts of awesome.

Sigh...

You know.....I wondered for some time now...just idle curiosity....what Jilly has gone through and how it has affected her. The good news is she doesn't remember any of her surgeries. What she does remember from her last surgery is the play room and the wagon rides.

More awareness comes as she grows older. Subtle questions about her surgeries, her scar, her heart. She's seen pictures and amazingly she doesn't even bat an eye at some of the ones right after her surgeries.

There are times I worry about her adjustments with kids at school. She recently told me how some kids will tell her not to do certain things because "you know Jillian, your heart!". I try to explain to her that she can do whatever she wants and that kids are just being careful with her - although I grapple with the fact that I like that kids watch out for her with not wanting her to think she can't do things.

But I guess I do have to be catious with what I say now about upcoming appointments. Several weeks ago I told her that her usual appointment with Dr. R was coming up. She said which Dr. is Dr. R - I reminded her that he was her heart doctor and that's the appointment that she gets to watch a movie while they look at her heart. She later told me that she had told somebody about her upcoming surgery. I asked her why she thought she was having a surgery and she just shrugged her shoulders. I asked her what she thought about a surgery and she said she was scared. So I asked her why she didn't say something to me and she said she just figured that was what she had to do for her heart. But that made me really sad to think she was dealing with some feelings on her own thinking she was going to have a surgery.

Which leads me back to wondering what kind of pain she went through. I have always just felt a tremendous amount of sadness thinking about the three surgeries, drug withdrawal, how she felt, was she in pain. Of course, at the time, the doctors tell you she is comfortable - they are managing the pain, she won't remember, it doesn't hurt that bad...blah, blah, blah. My question was always, "how do you know, have you had open heart surgery?" Of course they had not so they didn't really know.

When Russ was with his brother after his open heart surgery last month he said that his brother told him that the pain he felt after surgery was the most excrutiating pain he had ever felt. Pain that works its way through some good pain medicine. At least he can verbalize what he is feeling, yell for more medicine. When these kids are so small having these surgeries, or even when they are 5, 10, 15,....just seems so unfair to have to go through that kind of pain. So I look at the outcomes of that pain and I feel some sort of solice.

In my educated head I know that there is pain. Duh. Of course there is pain. But to hear somebody who has just gone through it say how painful it is....indescribable.

So I heard this song. By Jason Mraz. And it reminded me of my oldest daughter for various reasons. I had a certain perception of what the song was about only knowing some of the lyrics. I watched the video and it made me cry. Because of these lyrics:

When I look into your eyes

It's like watching the night sky

Or a beautiful sunrise

There's so much they hold

And just like them old stars

I see that you've come so far

To be right where you are

How old is your soul?

Because it then held meaning for me with Jillian. I have always thought, when you look into her eyes, there is an old soul in there. She says things sometimes that hold a certain wisdom to them that only comes with life experiences. And even though she has little recollection in her consciousness of where she's been I feel like, somewhere deep in there - in a subconsciousness, there's an awareness and a maturity because of where she's been and what she has experienced.

So watch....I'm sure the words can be attached to many life experiences. (make sure to turn off the playlist first to hear the video)