Lip Gloss and Pampers

Parker's second open heart surgery...

2008-06-15T10:04:00.004-05:00

I was not sure exactly what to post here about how I feel about Parker's surgery in two weeks. When I found out a year ago that surgery was an option I was FURIOUS. I was angry at God that he was sick, I was angry at myself because I thought I had done something while I was pregnant to give Parker his heart defect. I have since learned that God didn't give Parker a broken heart and I didn't do anything wrong either - we live in imperfect bodies. All of our bodies have problems - we all get sick. This is no one's fault. It just happened. God is here for us to give us strength and peace when we have run out but He did not DO this to us.

To my own amazement, I am slowly becoming grateful for Parker's surgery. Once again, his life will be saved. If this surgery was not an option, he would be months or years away from heart failure. Once again, science and modern medicine will save his life. Once again these two men Dr Mavroudis and Dr Backer will reach their hands into his chest and repair the damage that has been done and make his heart work better. Once again we have heard "this is fixable".

Do you know what the alternative is? I have met women in the last two years who have heard "there is nothing left to try" or "his body is too weak to try anything else". I have sat in a waiting room preparing to hear those words and then the doctor came in smiling and said "this is fixable". I have tried to capture the way I felt that day - how oddly happy I was to hear that Parker had TGA. Because the alternative was so bad.

I am sad, really sad about what he is about to go through. Sometimes my instinct is just to drive past the hospital next Tuesday so that no one can hurt him. I am sad because I know he is going to be in pain and I know he is going to be scared. I am so anxious about how to comfort him and make sure this as easy as possible for him. When I close my eyes at night the last thing that I see before I fall asleep is his little lips squished together with tape holding the ventilator in place. I am sad about all of these things - but I will take him to the hospital next Tuesday. I will help hold him down while they draw blood. I will tell him that everything will feel better in a few days even though I know he doesn't understand that. I will do all of it because this operation will save his heart again. And even though I am so sad and wish I could change places with him next week - I will always be grateful that this surgery is an option - I will embrace it and we will all be blessed by it.

Another confession...

2008-06-03T21:34:00.002-05:00

Tonight I was looking at our TV guide and I saw a movie called Echo

and I thought

why would they make movie about an echo (like echocardiogram)? Is it the story of the first echo? Weird...

Hearts are my life....

Da Dangit...

2008-06-02T19:13:00.003-05:00

Confession: Tonight after I put Parker to bed I came out into the living room to pick up. Once I was done I sat down to watch TV and check my email. I realized Noggin was still on and I started to change it when one of my favorite songs came on....so I left it on until the end....tapping my foot and everything....

Even more...I watched the MTV movie awards last night and I did not know ONE song that was performed!!!!

I am pretty sure this wasn't supposed to happen until I was at least twenty seven.

My friend Melissa's girl

2008-06-01T18:01:00.002-05:00

I usually don't post about friends from my support group's children, but Melissa has just been so wonderful to me and we have been praying for each others kids for over a year. Melissa's daughter's name is Josie. Josie is 2 and was born with HLHS. She has just sailed through her three open heart surgeries and should be "set" as far as her heart goes for a long time! I found out this evening that she had a stroke while waiting to see a doctor this week. I am not sure what all this means as I have literally just learned about this a few minutes ago. I am going to post Melissa's carepage entry:

Please pray for Josie. Josie had not been feeling well this week so we made a doctor appointment for her Saturday morning. While waiting to go back to the exam room, Josie was sitting in a chair at a table and all of a sudden she slumped out of the chair and we could tell she wasn't right. She was rigid and her right side had gone limp. We yelled for help, went to one hospital wherre they took blood and ran a few tests and then ended up at our hospital, Hope Children's. After a MRI we found out that Josie had a small stroke. There are 2 kinds of strokes that occur - the first involved bleeding on the brain which is more serious - and the second, that not does not involve bleeding and was due to a small clot. Thankfully, Josie's stroke did not involve bleeding, but as of right now she can not walk, talk, or even sit up on her own. She is starting to show more movement on her right side, but she is scared, confused and I just want my baby back. I feel like someone has robbed me of my baby I want her back. I want to wake up from this awful nightmare. Right now the doctors are just monitoring her care - it's amazing that her heart function is doing good, they have no real concerns as of right now. The computers at the hospital just plain suck so I don't know when I will be able to update again. Josie can use all your prayers and positive thoughts right now. Andy and I can too. I am having a real difficult time dealing with this. I have sat through 3 of her open heart surgeries yet the past 24 hours have almost been just as difficult and painful. We will update when we have a chance.

Josie's carepage is JosieBall

I do not know anything about strokes or how serious they are or if it causes permant damage...but I'm sure they are all so scared. Please say some prayers for them tonight.

Update?

2008-05-30T22:39:00.004-05:00

Wow - I know it has been a long time since I have last posted! We have had our hands full here! Parker has been sick for almost 3 weeks! He had some weird virus and had a fever for 6 days - then the whole thing has turned into a sinus infection. PLUS the poor guy has four molars coming in and possibly his canine teeth (is that the technical name?). At any rate - I have been sitting around here watching my hair turn grey worrying about this boy! Seriously - 6 grey hairs now....

We are about 12 days away from his next echo and I have to say that our whole future seems to be hanging in the balance of this decision! I am just praying that it is not time for surgery. I do not feel up to it. I don't know how to do it. I don't know how to get in the car and drive him to the hospital and hand him back over. My instinct is to run away with him so that no one can hurt him. I guess Mother's Intuition is flawed after all...I am really praying that whatever the echo shows, the decision to have surgery or postpone it will be very obvious and not something Jon and I have to come home and decide on our own.

On a lighter note, I am loving my job! It is FANTASTIC to be working around so many dramatic people again! I have met some wonderful girls and am just having a blast! I have not enjoyed going to work this much in a LONG time and it is such a blessing! Parker has the hang of it too which makes it even better. He really likes his teachers and I think is nice to the kids.

He is such a handful these days! He has mastered the art of temper tantrums. He collapses to the floor dropping to his knees then fallings the rest of the way down in a "WHY WHY WHY IS THIS HAPPENING?" sort of tormented motion. He flips to his back and kicks his feet turning his body in a circle. God forbid he hit his head on something during this maneuver or the whole thing escalates. It is just hysterical to watch. Well, sometimes it's funny. It is not funny when he does this on the elevator or on an airplane. That is not funny. It is also not funny at 5 in the morning - he has taken to waking up with the sun. I do not have it in me to be understanding or sympathetic to anything that early in the morning. If he wakes up that early expecting Mrs. Cleaver he is SOL! You would think he would just opt to play quietly in his room until 7 but no, he would rather deal with me and I guess that is sweet. He is talking a lot! He is capable of following directions like "give this Dad" or "go find your shoes" but I am learning capable is not always willing and it is the getting him to be willing part that I need to work on. Anyway, we are all doing just fine here! I do love this site and I miss writing - it is a great outlet. I just have not had time for outlets!!! I will do better! Thanks for still checking!

Does this make me look like that rat in Ratatouille?

2008-05-14T21:23:00.001-05:00

I think I need some sleep....

Dang

2008-05-06T21:30:00.003-05:00

So this evening I was wasting time on facebook, looking up people I work with now. I left a message on my co-teachers facebook bad mouthing one of the kids in our class. Jon said "you better be careful - I hope their parents don't read what you said". I said, way to quickly, "They are parents...what would they be doing on facebook?!" To which Jon replied "You are a parent...and you are on facebook"

riiiiiiight

Bad Mommy of the Year goes to....

2008-05-03T09:04:00.005-05:00

Just in time for Mother's Day! I found these pictures in an article called "Bad Mommy Moments" and was laughing pretty hard! Enjoy!!

I just like 'em

2008-04-28T20:43:00.002-05:00

I can not think of a situation in which Double Stuff Oreos would not make me feel better. Bad day? Oreos in my Pjs on the couch. Good day? Oreos and champaign! I am pretty sure that I am going to turn into an Oreo. At the end of every day, no matter what has happened, I would like Oreos.

Parker Daycare update #2

2008-04-26T21:07:00.004-05:00

Well...week one ended pretty well for Parker! By Friday he had attached himself to one of his teachers - Miss Mary and as long as she is within 10 feet of him, he is a pretty happy camper! It is just so much change for a little person who's life has been structured to the hour for 15 months! He has never missed a nap! His sleep is just totally thrown at daycare and it is backing up at night here too. We are just exhausted. We have never liked to he leave him to cry on his own, but he has been getting up all hours of the night and for LONG periods of time! Even that I can handle - but he is waking up before 5 in the morning for the whole day! Those who know me know...I am not capable of being friendly, functional or much less motherly at 5:00 am. Rough week! But we have made it!
So that is the quick update on Parker. I, on the other hand, am LOVING it! It does not feel like babysitting at all which is just such a change. I am a two year old teacher and we have lessons and curriculum, and they are all just so sweet and funny. My co-teacher is awesome and I am so excited to get to know her better.
I think that this will work out. I am hoping that by this next Friday Parker will be back to his old self (specifically sleeping until after 7:30 would be GREAT).
We have been really trying to love him up in our home time. We have made an effort to keep the computer and tv off when he is up and be focusing more on him. Here are some pictures of our first zoo trip! He had a BLAST!

Daycare Drama

2008-04-17T20:32:00.004-05:00

Well...Parker started daycare last week. He went for 4 hours on Wednesday, 4 hours on Thursday and 1 hour on Friday. He did GREAT on Wednesday and Thursday. His teachers said they had never laughed so hard and that he was just so cute. Friday - he understood that this was the new deal and he did not like it one bit! He cried for an hour and I went and picked him up. He has acted weird ever since. He cries all day, clings to me...like claws up my body to get into my arms, and does not want to be alone. There are not words to describe how guilty I felt! Our house has been one big tear fest!
THEN - the vomiting started....then the nasty diapers, then the kind of crying that means he's in pain. I am sorry to say that after his few short hours in daycare - he has contracted HAND FOOT AND MOUTH DISEASE!!!! He has "lacerations" (that is the doctor's word not mine) in the back of his throat. He has been sick since that Friday. That explains why he has been so sad and clingy. I just feel so bad for him. Needless to say, he has spent the week at home and Jon and I have juggled around my work schedule and his school schedule so that one of us was home with him all week. The doctor told me this morning that he would be feeling better by Monday.
We are all pretty tired. It was a really emotional week as he has never really been sick (aside from the heart surgery that is). I am really really hoping that once he feels better he will get into his classroom at daycare. His teachers are AWESOME and really want him to adjust quickly. Still - it's hard on us because we have always been together. I hope by next Friday we are in a great little routine and we are all comfortable!

Startin' Somethin' New!

2008-04-13T10:22:00.004-05:00

Well, after a LONG year, I finally quit my job! It was way past time to leave when I walked out and Friday and have not been back since. I spent the whole weekend agonizing over what to do now. There was a job available at my old daycare center and a place open for Parker. His teachers are three of my friends and they are all just so great. Needless to say - I took the job!!
I cried and cried the night before I left him the first time. I have never done anything so difficult in my life and I don't know how so many women do it!! Geez...but it was all for nothing. He walked right in and had a GREAT day! I could not believe it! He only stayed for a few hours Wednesday, Thursday and Friday. Tomorrow is our first full day. I have been working 52 hours a week for Paul and Heather and will be working 40 now. I can not imagine that kind of extra time! I am just so excited.
I will have to update later this week to let everyone know how he held up!!
Here we go!!

Amazing story!!

2008-04-03T09:02:00.003-06:00

Hypoplastic Left Heart Syndrome is the most complex heart defect (generally). There is still a worrisome mortality rate with these kids. Children who have this defect have 3 open heart surgeries early in life and over the course of the surgeries, doctors literally shut down an entire ventricle so the heart is functioning with 3 chambers instead of 4. Because every heart and every body is different, each child responds differently to this transition. It is a really scary defect. They have only just recently began really doing these surgeries well. 20 and 30 years ago, almost all of these kids died. This is a video though of a 30 year old man born with HLHS!!! He is the oldest survivor with the defect! It is just amazing!
I wanted to share it with you because it makes me so happy! This is a LONG video clip and this story begins 19 minutes and 42 seconds into it, so when you start it, move it ahead so you don't have to watch the whole thing! (I haven't watched any of the other clips - so don't hold me responsible!! :-) )

http://www.wedu.org/Content/VideoPop/SH_March_2008.aspx

Coping

2008-03-27T20:57:00.003-06:00

I am pretty sure that everyone who would be reading this has read either an email or our carepage on what went on today. Needless to say, we are bumming a little....
A few people have asked us "how are you coping"? I'm not trying to make light of a serious situation, but this is how we are dealing:

Emily "Where are you going?"
Jon "McDonald's"
Emily "It's 10:00, why are you going to McDonalds?"
Jon "For some french fries"
Emily "Jon, you shouldn't eat like that when you are upset. It's a bad habit"
Jon "What? I can't understand you because you have too much chocolate in your mouth. Tell me when you're done eating that Reeces Easter Egg"

Hey...at least it's not alcohol right?

Good Friday

2008-03-21T08:53:00.004-06:00

I have been reflecting for the last few days on Christianity in our culture today and have come to realize that according to our values that our actions demonstrate there is becoming less and less room for Jesus. I have been reading a book on this very subject and the author suggests that to be successful in our world you have to live and die by three philosophies:

1) What is in it for me?
2) If it feels good, tastes good, looks good, I'm doing it.
3) What is the least I can do?

Jesus on the other hand says the COMPLETE OPPOSITE. He asks "what's in it for YOU?" He says "I will offer my suffering and sacrifice up to my Father and He will wash over me and make me whole". He asks "What is the MOST I can do for you?".

Perhaps at no other time in history have the philosophies of man and the philosophies of Christ been in such conflict with each other. The author of this book has traveled all over the world and said the differnce between us and Christians 2000 years ago and us is that their faith WAS their lifestyle. Their lifestyle was not in conflict with their faith.

Today is good friday - the day Jesus died for us. How far have we come that we are now living lives that are indifferent to what Jesus did most of the time? When you really stop and process the moment - the pain, the emotion for him and his friends and family and also the creation changing event that was about to happen - salvation - how can we not strive to make our faith our life? What Jesus did for us IS life changing. How can our response be indifference?!

I found this poem today and really feel like it expresses the indifference that is so easy to fall into and also - so heartbreaking to Christ who just wants us so badly.

Indifference
By G. A. Studdert-Kennedy

When Jesus came to Golgatha,
They hanged Him on a tree,
They drove great nails through hands and feet,
And made a Calvary.
They crowned Him with a crown of thorns,
Red were His wounds and deep,
For those were crude and cruel days,
And human flesh was cheap.

When Jesus came to Birmingham
They simply passed Him by,
They never hurt a hair of Him,
They only let Him die;
For men have grown more tender,
And they would not give Him pain,
They only just passed down the street,
And left Him in the rain.

Still Jesus cried, 'Forgive them,
For they know not what they do!
And still it rained the winter rain
That drenched Him through and through;
The crowd went home and left the streets
Without a soul to see,
And Jesus crouched against a wall
And cried for Calvary.

I hope everyone has a happy Easter and really has a chance to meditate, celebrate and remember how MUCH God loves us and what an OVERWHELMING gift He gave to us.

Super Nanny!!

2008-03-14T17:35:00.002-06:00

See? I'm still here :-)

Here are some funny pictures of Thad, Stephan and I at work one afternoon. We were goofing off with my computer....

I am not missing!!!

2008-03-11T08:16:00.002-06:00

Well, I have not in fact disappeared from the face of the earth. What I have experienced in the last two weeks, ok three weeks since my last post has been so much more traumatic than disappearing...you wouldn't believe me if I told you! Oh we saw it coming sure. Books told me this day would come. My mother told me "don't encourage it". Strangers on the street warned me "your life will never be the same". I thought I knew. I didn't know.
"Walk to Dad Parker Jay" I demanded delightfully. "You are the best little boy in the world! What a good walker you are!" I cheered. I called grandparents, aunts, uncles, friends, forming rows of cheerleaders for the boy against everyone's advice. I brought it on myself.
Parker is walking! Actually, I think the correct thing to say is that Parker is falling. He takes one step forward and 15 steps quickly in some direction to try to balance himself. It is hysterical and precious and boy am I tired!

Anyway - my fan sought me out this morning and I remembered that I hadn't posted in FOREVER! My apologies to those who spend time checking :-/ I WILL do better :-)

We left Parker in Dallas with his grandparents after our weekend trip! I have never been away from him before and while I am happy he is having fun, I have to say that I, well we, are something of a mess without him. We are just happier when he is with us! That said, while we are sitting here in the 40's that is Spring in Chicago, he is playing outside in 70 degree sunshine! So we wish him a happy vacation! We pick him up tomorrow night!!!

Parker's Birthday Letter

2008-02-20T15:21:00.007-06:00

This is Parker's birthday letter that is going in his baby book. My plan is to write one every year. I can't believe he turned 1!!

Dear Parker Jay,

On the one year anniversary of the day you changed my life, the day you changed all of our lives, I want to tell you yet again just how much I love you. You are the best thing I have ever done. You define me and give my life meaning. You, with your cure-all belly laugh and your smile that is so wide I could drown in it, you, have given more to me than I could ever give to you. You have made me a mother. You have taught me to live in the moment – let go of the past, embrace the future but soak up every ounce of the now. You have taught me it is more than ok for things to be imperfect. You have taught me that it is better when I do not have control. I am a stronger, nicer, and happier because you are mine.

I am not the only one. You are surrounded, SURROUNDED by people who would literally walk on fire to be with you. Your father, for example, has booted me from my position as his best friend. You two are inseparable. He loves you and you have him wrapped around your little finger so tight that he has actually lost all hope of recovering. Your Nana and P-Daddy and Grandma and Grandpa dropped everything they were doing when you were born to be with you. They cry when you cry and are happy when you are happy. They make idiots of themselves making silly faces and noises to make you laugh. You have infused your spirit into their lives and taken over their hearts. You have aunts and uncles, great grandparents, cousins, friends, great aunts and uncles, second cousins who eagerly wait for holidays and special visits, who LOVE to see your sweet face and who brag about you to anyone who will listen. You even “get” people you have never met! You start these precious conversations with total strangers waving and smiling at them relentlessly until they give in and laugh. You have caved even the grumpy medical school professors who look physically to rigid to smile. You are so loved Parker Jay. I hope you always always feel it in the core of who you are. You are perfect to so many people.

I love how you cross your feet when you are eating. I love that you are scared of Tickle Me Elmo and come to find me when someone turns it on. I love that stop by my lap every once in awhile when you are playing to lay your head down. I love that you know what is yours and what isn't, but want it all anyway. I love the way your breath smells in the morning adn the way your hair always sticks out everywhere. I love the way you laugh and I love the way you throw temper tantrums. I love the way you love life.
You are so passionate and so strong. I know right now you are passionate about holding onto the keys when we need them to open the door, or holding the lap top by yourself, but I just know that one day your passion will mature and you will change the world. I just know it.

I have waited my whole life for you. You gave birth to me as much as I gave birth to you. Thank you, thank you for doing such an good job raising me. I will spend the rest of my life trying to return the favor.

I love you with all of my heart.

Love,
Mom

a glimpse into our crazy life...

2008-02-16T15:20:00.002-06:00

In the words of my favorite character on TV, Golden Girls' Sophia Patrillo "Picture it"...it was 2:30 am this morning....our apartment. We were all sound asleep until Parker woke up crying, wanting "milk milk milk". It is unfortunate for him that he has two nut cases for parents.

Because we were so soundly sleeping, we were also deep in our own dreams. Jon was dreaming that Parker's cd that plays all night in his room had been replaced by a cd featuring the sound of a crying baby. He dreamt that Parker had woken up, but every time he fell back asleep, the cd of the crying baby woke him up again.
I was busy dreaming that I had lost the ability to tell time.

So poor Parker wakes up and instead of being the caring and attentive parents we usually are in the middle of the night, rushing to meet his needs as quickly and efficiently as possible so we can all go back to bed, we carried on this conversation:

Parker: "WAAAAAH WAAAAAH"
Emily: "I dont know what to do! Is it morning? Am I supposed to go get him?"
Jon: "Its just a tape, go back to sleep. I can't take it out now"
Parker: "WAAAAAAAAAAAAH WAAAAAAAAAAAAAAH WAAAAAAAAAAAAAAAAH"
Emily: "I don't know if it is time to go get him. Is he hungry?"
Jon: "I can't turn it off!!!"

Poor poor Parker Jay....after a minute or two we figured out that he was awake and he, I am happy to say, got his milk and went right back to sleep. It wasn't until late this afternoon that Jon and I put together the pieces of what happened!

I LOVE JON HEBDA!!

2008-02-15T09:25:00.000-06:00

I love Valentine's Day!

Photo and video editing at www.OneTrueMedia.com

WALK ON BUDDY!!!!!

2008-02-08T21:50:00.000-06:00

PARKER IS WALKING!!!

I was sitting on the couch at Thad's house, feeding Stephan in my lap. Parker was holding onto the coffee table in front of me saying "ma ma ma" which is actually "milk milk milk" not "mama mama mama". Anyway, all of a sudden, a little bald head darts across the living room! I realize Parker has let go of the table and taken off for behind the couch.

"YOU'RE WALKING!!!!!" I screamed - completely scaring him. He crashed, slamming his face into the door frame of the back door leaving him with a HUGE goose egg on his forehead and a swollen knot on his nose! He screamed bloody murder for like 30 minutes! I thought he broke his nose. Even still - I kept saying "I'm so proud of you!" "You did it!!".

What a great moment! Aside from the crash landing, it was perfect technique if I may say so myself!

Congenital Heart Defect Awareness Week

2008-02-07T09:49:00.000-06:00

Today is the first day of Congenital Heart Defect Awareness Week! I have posed several posts on statistics, history of pediatric cardiology, and our own experiences with Congenital Heart Defects. This cause is really important to my heart. I wanted to share some news from our Mended Little Heart coordinator, Jaime. This is her email:

Mended Little Hearts has been working with the American Heart Association so that they understand how the CHD Community feels about the lack of awareness. Today, they put a ticker the top of the their national website (www.americanheart. org) about CHD Awareness Week. It links to info about CHD, and that page has a link to Mended Little Hearts. Not only that, but they sent a press release to all of their affiliates about CHD Week and about MHI and MLH. It is fabulous!!! This is huge compared to what we had in the past--very huge.

Obviously some huge steps :-) I have not heard word about the tv campaign adds but will definitely let everyone know if that works out!!! Right now, AHA only donates 1 cent of every dollar to CHD!!! Things could be SO much better with a little awareness. I don't need to spit off more statistics for why this is true. I do want to post a poem written by a mother, Stephanie who has a daughter who has gone through 3 open heart surgeries and is still hoping for a complete repair.

While I feel sooooo blessed that Parker's heart is completely repaired, it still makes me sad that there are so many families living day to day with fear! I think this poem by Stephanie expresses what life is like for these families.

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.

Parker sat through Church!!!!!!

2008-02-03T20:36:00.000-06:00

IT's A MIRACLE!!!!! I have spent Sunday after Sunday in the church cry room with this boy! We have not gotten so far as the First Reading before we headed off! He squirms, cries, throws things, pulls random people's hair, and causes general chaos and destruction for an hour. Sure, I could leave him in the nursery, but you know I am neurotic and would never leave him with a stranger!
Anyway, today, just seven short days after turning one (my how the wheels of maturation are turning now!!) he DID IT!! We let him have some space and gave him his own seat in the pew! He played quietly with his toys in his lap during the reading, ate a snack during the homily, stood quietly in between us on the kneelers during Communion, and smiled at everyone who walked by! It was AMAZING! I am so excited! Jon and I had decided to really make an effort this Lent to refocus, re center, and reconnect to God and our Spiritual lives together. It was such a blessing to be able to participate in Church this morning. I feel like I am starting out this season on the right foot!! THANK YOU PARKER!!!!!

And now for a novel...

2008-01-30T11:02:00.000-06:00

Well, my baby is a toddler! He is 1 years old! WOOHOOO! I can not believe it has been a year already! So much has changed this year. I guess that is the way it is with babies. As soon as we had him figured out he would move onto a new phase. I have heard that this slows down a bit now and we can finally settle down and enjoy the world of toddlers. Ok maybe "enjoy" is the wrong word. We can survive the world of toddlers :-)
Last night as I was going to bed I was remembering the same night a year ago. Jon came back to my hospital room after being with Parker at the Children's Hospital for a few hours. He came into the room, I was sleeping, but he kissed my head and told me he had never been so proud of me in all the years he had known me. He slept on the couch and we talked over the whole day. It was an amazing amazing day.

We had gone to bed on the 28th after watching two movies. We had stayed up late and had a little party because my parents were coming to Chicago the next day and we knew that the next morning was our last day to sleep in for a long time. We turned off the tv around 1:30. I woke up around 3, 3:30, 4:00 and could not figure out why I was waking up. Around 4:15 it dawned on me that I was having contractions that were waking me up! I told Jon and he told me to go back to sleep and they would go away. He was not being insensitive. I had woken him up every morning for the last two weeks saying the same thing to him! Around 6 that morning they were actually painful and I woke him up again and he told me to take a shower and see how they were. I did, and could not stand up strait in the shower! I messed around online for a bit ate breakfast. Around 9 Jon was convinced that it was show time and we headed the hospital. We checked in and they told me that I had labored to 4 centimeters! We were SO excited!
Labor was awesome for me! Once we got up to our room they told me if I wanted an epidural that I needed to get on the list knowing there would be a wait. I told them that I was fine, but I would make sure to get on the list when things got intense. About 15 minutes later, Jon was in the bathroom and I nearly stopped breathing from the pain. "This could get very bad!" I thought and called for the epidural man! A few minutes later my new best friend was in the room. They asked Jon to leave and I remmeber being really scared. The nurse held me - or rather I held her and within 20 minutes the pain was gone! When Jon came back in we watched some tv, he scratched my itchy back and we had a fine time. Around 5 Dr. Patel came in and asked if I was ready. What a silly question! TONS of doctors and med students came into the room. Parker's heart defect is rare and it was a "medical treat" for the students to see the action unfold. So I pushed in all the glory of a birthing woman with 30 people cheering me on. I tuned everyone but Jon's voice out.
When Parker was born he squealed! It was not a cry. I think Jon was afraid I had given birth to some dinosaur species. I did not get to hold him. Dr. Patel handed him over to the teams of doctors in the corners and they crowded around him to work. Everyone in awhile someone would move and I would catch a glimpse of his little squished up face. The light was really bright in his eyes and he did not open them. He did not cry though.
They did not get the IV started so they took him to the NICU to get a line in his belly button and promised that I could go down in an hour or so to see him. I cried when he left. A ouple of nurses came in to tell me that he as beautiful and to make sure that I was doing ok. My parents arrived literally 30 minutes after he was born. It is a surreal moment to see your mom and dad when you've just had a baby! The pride is indescribable. It's like you want to say "See, your love and hard work have paid off! I, have created life!! Come and see MY child!!"

We made small talk for the hour that we waited. At 7:00, exactly one hour after they had taken him instincts took over and I NEEDED to see him. I sent Jon and my dad hunting for Parker. They came back and told me we could head down to the NICU. AS we were walking in, well, I was being wheeled in, it occured to me that I had only actually seen Parker for a minute or two and I panicked that I might not recognize him. I envisioned the nurses waiting for me to say "ok, this is my child, this is where we stop" and I had no idea if I would be able to recognize him from the others. As it turned out, I could never forget his face. I knew exactly which one was his. It was either Mother's Instinct, or the fact that the other babies in the NICU were 2-4 lb premies and Parker was 7 lbs! He looked like a giant. He looked like he was the heathiest baby in the room. I stood up on legs that I could not feel and held onto the side of his bed to support myself. He did not open his little eyes, he was not crying, he was not really squirming much. He made this sweet little whinning sound. He must have been terrified, but he did not act like it. The nurse told me to push his legs up to his stomach and hold his arms down because he was used to be squished up. I tried, but I really just wanted to touch his face, so I did when she wasn't looking. After awhile, the room started to get fuzzy and I blacked out. It was such a hard decision because I was not ready to go back to room and say goodbye, but I did not want to faint and take attention off of Parker. Luckily, my nurse saw tha I was pale and she made me go back upstairs to bed. I said goodbye and left Parker and Jon in the NICU.

My mom and dad and Jon went to Children's with Parker. I had taken some pain medicine and was tired so I tried to sleep. I was in and out of sleep until Jon came back around 1:30 that morning.

If someone had told me a year and nine months ago that my birth story would be so different than what I expected I would have been crushed. Women who have had healthy children and who were able to hold their babies right away and who had the choice to sleep with their baby in the room or send them to the nursery always say they feel bad for me. I don't feel bad for me. It was an amazing day. The best day of my life. It was the start of a million firsts.

The next evening would be the first time I would hold him. We would spend two days in the NICU at Children's holding him and loving on him. On the third morning I held him while my family stood around him and said a prayer before we walked down to the surgical holding room and watched them wheel him away to surgery. That afternoon when they told me that he was ok, that he was going to live, I cried with a relief so overwhelming that I thought it would literally take me over. Then a few hours later we saw him and I felt like I was five years old again. I had no idea what to do. The relief that I had been feeling disolved instantly and turned into saddness, fear, and a powerful need to change places with him. We coped though. I learned how to change his diapers while his body was all tied up with wires and tubes. I gave him a bath, held him, fed him, and we made it work. Then we went home and the real fun started. Our life started.

I know this has been a novel and if anyone is still reading this far down the page, I am so emotional today because 20 years ago, he would not be here. If he had been born just 20 years ago, I would have a very sad story to tell. It is a MIRACLE that he is here and healthy and happy. I would do it over a million times. He and Jon make my life great. Happy birthday to Parker!!!

Parker's Birthday Stuff

2008-01-27T21:29:00.000-06:00

Ok first things first! Just call me Mrs. Cleaver!!! Check out the cake that I, Emily Hebda, made for my son!!! Ok, Jon helped and credit is due where it is due! We are a great team! Good lookin' babies and good lookin' cakes!

Second things second! I have found a way around all of the sappy writing to express to everyone how much I love Parker and how proud I am of his accomplishments this year! Jon and I have been working on a video for his birthday for a couple of months now and while it is long (you may need a snack or something...and kleenex..don't forget kleenex) it is set to fantastic music for your listening pleasure! Enjoy!!

Make an on-line slide show at www.OneTrueMedia.com

Baby Do's and Don'ts

2008-01-26T09:55:00.000-06:00

Sometimes parenting is not as common sense as you would imagine! Sometimes, as a parent, you are faced with many difficult decisions. I think this website truly addresses the concerns of modern parents and it thoroughly and artistically provides excellent pictures that will help any parent in those times when you are just not sure what to do! Enjoy!

http://www.c00lstuff.com/1133/Do_s_and_don_ts_with_babies/

Parker Jay

2008-01-25T10:31:00.000-06:00

Parker's birthday is coming up and I am feeling so emotional about it!! It is so silly! I truly cried myself to sleep the other night thinking about this past year and how far we have all come. I have tried several times to put into words how I am feeling and I just can't do it. It seems sappy and I just end up erasing it all. It's just, he started out as this little creature that I didn't know anything about. I had control over nothing. I knew nothing. And now, a year later, well, I still have control over nothing, but he is his own little person now. And we just kind of mesh. I remember that night in the hospital feeling like we were this little twosome team unit, a pair - we had forever to figure each other out. The whole thing just blows me away. Here I go being sappy again - and yes I am crying. I'll stop. But don't think you're off the hook you loyal readers! His birthday is Tuesday and there will be more sap to come! Of this I am sure!

When Mom's away the boys will play...

2008-01-21T20:26:00.000-06:00

And consequently trash the place!!

Parker's Article

2008-01-13T16:27:00.000-06:00

There is a man in Chicago who has been working for years to get the American Heart Association to do a campaign for congenital heart defects. He wants commercials, pamphlets, anything to draw attention! The AHA has told him that they will do the campaign if he gets one million dollars to fund it. On February 2, at a museum here in Chicago they are having a benefit to raise money for his cause. We have been asked to help! On each table at the benefit they are going to put a picture and a story of a child affected by a CHD. I have been asked to submit one featuring Parker! I am copying his article and posting his picture here. I hope that the people who read it will be moved by his story to help out! Just an example of how research could help kids and Parker in particular: there is a doctor in Memphis who has just figured out how to do a VALVE REPLACEMENT in the CATH LAB!! No open heart surgery! Imagine if by the time Parker needs surgery again doctors everywhere are repairing valves in the lab! I am really praying for this benefit and for this campaign. A little research can affect SOO many children's lives! Here is Parker's article:

I will never forget the day we found out about our son’s heart defect. I was twenty two weeks pregnant with our son that we had just named Parker and my husband and I were at the doctor’s office for an ultrasound. Two weeks before the tech was unable to see all of the angles of his heart and we were asked to return to “try again”. That was our purpose for being there that day. My husband, Jon, and I were joking about the waste of time and money of this formality. We had heard his heartbeat several times and it was always described as “perfect”. It had not dawned on either of us that there could be a problem. As the tech worked, her face wrinkled up in frustration and she told us she wanted to get the doctor. They spoke to each other over my head in a whisper, maybe they thought if they spoke quietly enough that I would not hear what they were saying. “There is a big hole” “Where is his aorta?” There was suddenly not enough air to keep breathing. There are no words to describe the panic and desperation I felt as I learned my son was not healthy. There was a big problem.
We left an hour later with a picture of Parker’s heart defect. He was diagnosed with Transposition of the Great Arteries and a Ventricular Septal Defect. His pulmonary artery and aorta were switched, his pulmonary artery which should be connected to the right side of his heart, was connected to the left and the aorta which should be connected to the left side of his heart was connected to the right. He had two separate circuits, one that circulated oxygenated blood from his lungs to his heart and back to his lungs, and another that circulated unoxygenated blood to his body to his heart and back out to the body – still without oxygen. His body would not have enough oxygen to live. He also had a hole in the middle of his heart. He would die within days without immediate surgery. As we sat in the conference room with the cardiologist, about to be crushed with fear, sadness, and the confusion of it all, she looked at us and said “this is fixable”. We took a deep breath and smiled.
We spent the next twenty weeks researching anatomy, heart defects, and surgeries. We learned about all of the breakthroughs in cardiac surgery and on January 29, 2007 when we handed him over to the doctors at Children’s Memorial Hospital, we felt confident that he would be ok.
Parker had the Arterial Switch Operation and VSD repair when he was three days old. It was the worst and best day of our lives. Nothing in the world can prepare you to see your child after open heart surgery. It was the saddest, most helpless moment that I can remember. But, the relief, and that is not a strong enough word, of hearing that the surgery was successful, was absolutely overwhelming. No words have ever been sweeter to my ears. With tears streaming down my face, I thanked the man who saved my sons life, knowing how inadequate the words were.
Now, one year later, we have a healthy, busy, precious boy. Aside from the scar down his chest to mark what he has gone through, no one would ever know of the fight he put up in his first few days of life. He is left now with a narrow pulmonary valve that will eventually need another surgery. We have learned from our own experience and the experience of others that our world will continue to revolve around Parker’s heart forever. We are prepared to continue seeking out excellent doctors who are working to perform new surgeries for these kids. While not a day goes by that I do not worry about his heart, I enjoy the place where we are now and I count every one of his accomplishments as nothing short of a miracle. Despite his bad heart, he is, after all, perfect and I could not be any more proud of him.

Our First Christmas

2008-01-02T21:02:00.000-06:00

Remember Christmas when you were little? Remember knowing exactly what you want and waiting and waiting for Christmas morning hoping - just hoping that Santa would have brought it? Then on Christmas morning walking out and there it was! What a great feeling! Few things top Christmas morning to a child. I have found one though -

Christmas morning as a mom! It was so much fun to watch Parker on Christmas morning. Sure he liked the paper and ribbon more than what was inside. Sure he prefers his new Spider Man tooth brush and Dollar Spot hand broom to his fancy Dance and Sing Stage and Leap Frog Lap Top. But the point is - there is nothing more fun in the world to me than watching Parker have a good time. I wish I could have made it last forever. But at 9:00 that morning he had "had enough Christmas" and was hurling Cheerios all over the floor, attacking the dog, arching his back, screeching, spitting and other charming antics he has picked up.

Too young

2007-12-19T22:55:00.000-06:00

Sometimes we get wrapped up in our own lives and our own issues that we don't even realize that there are people, real people that we see day in and day out with real problems. Really big problems. I was watching this thing on TV this afternoon and it was about a minister who goes around the country and works with youth. His message is harsh - especially to teenagers who are hearing it. He says "Everything you care about is backwards. The way you are thinking is not the way God wants you to think. The way you see the world is not the way it is. " He yells, jumps up and down, throws things, cries, anything he has to to get their attention. He really calls them, and us all, out. When talking about how his choice of methods that he can't love Christ half way. He can't see how if any of us really thought about Christ did for us, and what our actions or lack of actions did in return to Christ, how we could think about anything else in the world. He said "Christ DIED for me, I'm just doing what I can to make Him cool to these kids".
One thing about these kids really stuck out to me though. At one of his retreats, he said he does this at all of his retreats, he asked all of the kids who had ever thought about ending their life to come to the front. One by one by one by one by one kids, teenagers, walk up. I was sitting on the couch just crying. What could be happening to these kids that they feel worthless. worthless. I thought that he, Jason, was going to go hug them or tell them that he had help for them but he didn't. He turned around to all of the kids who had never felt this way and said "What are you going to do about this?". There were tons of kids standing in the front of the room. Everyone knows who these kids are - the overweight ones, the ones with bad teeth or bad hair, the ones who look too pretty, too used, we all know these kids. RIght about then, tears all down my face, Parker woke up and I went down and picked him up and told him how proud I was of him and how perfect he is and how he is the best thing I have ever done with my life and how I am complete because of him. Everyone deserves to hear that. I realize now how unbelievably, undeservingly blessed I am that I have been surrounded by that message since I was born by my parents and now every day by my husband.
I think its a need. Like food and water. We need a connection - a sincere connection. I think that's why young people are so desperate to look the right way, wear the ring clothes, be around the right people. To do whatever it takes to hear someone - anyone say "you make my life great". Love and acceptance are not just nice commodities. People have literally died trying to find it.
I don't think I have a point in this post. I guess I was just thinking that we should all drowned each other in love and appreciation. How can we love Christ and not?

Two posts in one day?!?!

2007-12-18T20:57:00.001-06:00

Jamie Spears (the 16 year old sister of Britney Spears on her recent pregnancy:

"It was a shock for both of us, so unexpected," she said. "I was in complete and total shock and so was he."

Poor thing - I guess no one ever told her where babies come from. All I have to say is this to the young girls - IF YOU PLAY WITH FIRE, DON'T BE SURPRISED IF YOU GET PREGNANT!!!!!! (I mean burned...)

Date Night

2007-12-18T09:52:00.000-06:00

Last Saturday night was "date night" at the Hebda house. Parker was asleep and wine had been poured. We decided not to spend our date night glued to the TV but instead to play a game of Yatzee. This is one of two games that I can beat Jon at (the other is Scrabble). We opened the game and pulled out the box that you are supposed to role the dice into. We were puzzled because inside that box was a baby blue burp rag. But why? We looked at each other and in an instant we both knew - we had played this game before at night - the burp rag was to muffle the sounds of the dice hitting the box so as not to wake up Parker! After all, nothing can ruin a date night like a 10 month old. Oh how our lives have changed. Evidence is everywhere.

I am pretty sure Parker rules our house.

on matters of discipline

2007-12-08T23:13:00.000-06:00

Since last week when Parker started this new "independance phase", Jon and I have been having a difference of opinion about how to discipline him. Jon is ready to ground him and I am ready to have a family conference to discuss his inconsiderate behavior. Ok, so that is extreme on both sides. But tonight as we were watching Home Improvement, (there was a time when we had a life) a conversation unfolded that accurately depicted our views on disciplining a child. Home Improvement was about Randy and Brad trying to raise money for a Children's Hospital and they decided to steal some of it to buy toys and Christmas presents. Here is our comentary:

Me: "Oh if Parker pulled something like that I'd be so mad!"
Jon: "What would you do?"
Me: "I went make him serve dinner at a homeless shelter on Christmas Eve. What would you do?"
Jon: (seriously) "I would make him go to a homeless shelter...to live"

I can't work with this!

Want to help?

2007-12-07T10:10:00.000-06:00

I am a member of a small group called Mended Little Hearts. We meet once a month on Wednesday night and we are all families with heart babies. We have nine and ten year olds who have been through multiple surgeries already and then we have pregnant moms just beginning down this road. My reason for this is post is this, we are having a party! February is National Congenital Heart Defect Awareness month and we are celebrating by doing something big to get the word out about these amazing kids. We want to give the kids who have been through way too much a really fun night out and we also want to draw attention to ourselves and let people in the community see that there is a problem, but there is also something to be done.

Jon came home from school last night and was telling me about a video he had to watch in his low vision class that was supposed to teach them as future doctors how to be sensitive to families who have blind, or otherwise "imperfect" children. He was absolutely disgusted and said it did not even begin to capture what it is like to hear your child is sick. He is even writing a letter!! My point is this, I can not tell you enough how alone you feel when you find out your child has an illness that you did not see coming.

Mended Little Hearts, and these women in my group in particular, want to help new families who are just finding out. They want to help researchers have the funds to begin to do studies that could improve mortatlity rates that are still too high. They want to support older kids who have been living in bodies that just are not working - that keep them from playing football at recess, or running with their friends. This party is to get as many families in one room as possible so that we can all hear how we can help right now.

When you are in a situation that takes away all of your control, finding out that you can do SOMETHING, like arranging decorations for this party,is amazing. FINALLY, something to do. Some way to help!

Soooo, I am in charge of decorations for this party. A good friend of mine, Sheaghlah is helping me and together we are calling around, writing letters and asking for donations of things like, paper, flowers, poster board, markers, scissors, balloons, letters, stencils, tissue paper, anything we can use to create a heart themed party for 150!

Why do you care? You may be asking. Well, if you are wanting to help these families out, here is a great chance! We are going to write a letter and if you want to take it to your local florist, party city, or grocery store, that would be awesome! If they give you something, send it to me! I'll pay the shipping! If you want to donate money (because aside from decorations, we are having food, a dj, a clown, a magician, raffle prizes, putting together care packages for families in the hospital now, and goodie bags for the kids) let me know! I can tell you how to get it to the group! We are hoping to get everything done for the party through donations, but extra money will help us be able to do some great things if we are offered discounts!

Please email me or call me or respond here if you are interested!
Emily_Hebda@yahoo.com

Here is the website for the national Mended Little Heart organization:

mendedlittlehearts.org

The grass is always greener

2007-12-05T19:34:00.000-06:00

You know that saying the grass is always greener on the other side of the fence? Or you always want what you can't have and then when you have it, you don't want it anymore? Ok, I have a feeling the saying is more eloquent than that, but some people say something like that. Here is the thing. I came home tonight and told Jon that it was his turn to put Parker to bed. 50/50 that's what I say. So, here I am soaking up my free time while Jon puts him to bed...and all I can think about is going in and reading Goodnight Moon. The truth is, there is nothing else more important in the world than being in the room with that boy right now.

In a great green room there was a telephone
and a red balloon and a picture
of a cow jumping over the moon
and there were three little bears sitting on chairs...

see ya!

oh ps - the picture? a moose, trying to get grass...on the other side of the fence? get it? hahahaha (i'm proud of that one)

Elf Yourself!

2007-12-02T17:03:00.000-06:00

I couldn't help myself....

copy and past the link:

http://www.elfyourself.com/?id=1141665354

Parker's morning

2007-11-30T10:22:00.000-06:00

In trying to understand my son's newest behavior antics, I have tried putting myself in his shoes. I have recreated Parker's morning for you - from his point of view. Here we go:

"It's mom! I definately heard her open the closet door"

- stands up -

"Mom, come get me! Mom, come here! Mom, I'm up! Where are you going? Come get me first WAAAAAAAAAHHHHH"

- starts to cry like leaving him in his crib is something I do routinely -

"Oh good! You're back! Hi! Your hair looks fantastic! I need to pull it! No? Ok, well let me stick my finger in your mouth and check out how your teeth are doing. No? What's your idea for something to do? Nooo I don't waaaaannnaa change my diaper!"

"Let me have that destin cream. And I want some wipes, give me the wipes. Look! I found the nail clippers you were looking for last night! Give that back I was playing with it! Ok I'm done doing this. Let's get up and play. Let me stand up!!! Move your hands and let me get up! I don't want to wear those pants. And I don't want to wear that shirt. I would like to eat these shoes though, these are great! Give them back!"

- Moves out to the living room to get our coats. Jon, unfortunately for him, is in bed and trying to sleep still -

"DAD! Mom, it's Dad! Hi Dad! Look, see how close I am to your face! Where do these two holes in your nose go to, let feel in there for just a sec... no? Ok, Well, I'm just going to climb over here and LOOK! IT'S THE LAP TOP!!!!!!!!! This is terrific because I have been trying to get my hands on that for weeks now and here it is! Right in front of me - NOOOO I was playing with that! You've got to be kidding me!! I dont wwwwwwwwaaaaaaaaaannnnnnnaaaaaaa put my coat on!!! Bye Dad!"

- at work -

"Look! It's that dog Red Fred! Come here Red Fred, let me take a look in your ears for a minute! Man, I just love this dog! Mom! Look how his hair just comes out when I pull it! No? Ok, hey hey hey, it's the remote! Let me just push this button here and HOT DOG! Look at these channels changing now! No? Well, I see that you have left the cable box uncovered so you know I'm just going to go over there and push those buttons. What? Am I not supposed to be playing with this?"

"Stephan is up! Let me just turn my back so mom can't see me do THIS! HA HA HA This cracks me up! What a baby, a little tug on the hair and he crumbles. No? What? What are you doing? No, don't hold me down. OH MY GOSH I'LL NEVER MOVE AGAIN!! HEART PALPATATIONS MOM!! I CAN FEEL MY HEART BEAT! I'M PANICING NOW. I CAN'T MOVE! Whew! Ok that was scary. Where did Stephan go? Double or nothin' he cries again!"

"Breakfast time! Oh I love waffles. But this piece can go on the floor. Not this one. This one can. Not this one. This one. Oh this one can go in Stephan's hair and while I'm there you know I have to pull it again. Ha ha ha. This is great! No?"

"I'm getting tired. Mom, I'm getting tired. Hello??? Well what if I scream and roll around on the floor for a bit. Now do you see that I am tired!? Wait, oh yeah, I need to go to the bathroom first. Oh and my teeth hurt so I would love some of that stuff that makes me not feel my face. Great! Thanks. Well done. Ok - to bed!! Whew, I'm beat. "

It's hard raising a kid with a free will

2007-11-29T09:51:00.000-06:00

Back in the day - well back a week ago - Parker and I worked together like clockwork! I read the books and made educated decisions on what he should eat, when he should sleep, what he should play with and how best to mold his behavior and so he ate what I put in front of him, he slept when I laid him down and he was playful and naturally curious with just enough physical limitations to keep him safe. "This is easy" I have been saying to myself for the past 10 months. I was arrogant. "How do people mess this up?" I thought to myself - proud of the angelic child we were raising. Would you believe that I have even put away my parenting books. Oh - I was THAT sure of myself.

With my head hung in shame I am writing to admit, sincerely, I was wrong.

Last night, after two hours of fighting with him to sleep, I brought out a book that teaches parents how to help their baby develop into a "delightful two year old". It talks mostly about behavior issues, specific ways to play with a baby, the correct ammount of attention...you get the idea. I don't know what I am doing, I figure a delightful two year old seems like a good goal and so I read what this guy says! Anyway, APPARENTLY 8 months to 14 months is "make it or break it" time according to this guy. CAN YOU IMAGINE IF I HAD NOT OPENED THIS BOOK? I wouldn't have known! He says that every action and reaction Jon and I make as parents for the next 4 months will make him an angel or demon! PRESSURE folks - lots of pressure. Oh I was sweating! Jon was laughing at me in the corner of the room as I read off the behaviors we need to "nip in the bud" right now. (How, Emily, do you "nip" behaviors in a 10 month old? Good question, you hold him down so he can't move for 10 seconds after an offense such as pulling hair or biting. Babies "value the ability to move" he says.)
Apparently Parker has a "free will" just like me. He has figured out that he does not have to do what I want him to do. It is fun, I guess, to throw his food on the floor - yes even food he likes - pull hair, tackle people, throw temper tantrums and bang his face on the floor so I have to pick him up, protest sleeping, putting his socks, pants, coats, even diapers on, and he newest "game" is scrunching his head down to his chest so hard that he can't breathe and he turns red. Where did this come from?! And so we argue.

Where I once spent my day surrounding him with phrases like "come sit in my lap sweet heart" and "you are such a good eater love" now it's "Parker don't pull his hair" "Parker stop screaming" "Parker don't unplug that" "Parker you are going to hurt yourself" "Parker I'm taking this away from you" "No Parker" "You can't do that either Parker".

Whew - I get tired just writing it! I was venting to my mom about it this morning - she cracking up inside, I heard it - and she told me "this won't last forever, it's just a phase". The thing is, I think she was lying to me. I have this eerie feeling that this is just getting started. She knows it alright. Maybe she is scared I will sell him to the gypsies before Christmas and he won't be there? But I know she knows something!

Here is the crazy thing. I am tired. I look awful. I feel guilty for the being the "no" police all day long. I look forward to my hour at the end of the day when he is asleep and I can talk and sound like something other than an auctioneer. BUT last night, when he did finally go to sleep, Jon called me into his room to look at him because he was sleeping in "such a cute little ball" and we stood there for a few minutes discussing how cute he is and (and this is the crazy part) in the back of my mind, or maybe deep in my heart, I heard a voice say "Let's wake him up and play some more!" I LOVE this kid. Truly, love is not strong enough. The best part of my day is still waking him up in the morning and seeing his smile and his messy hair and crusty little face. And I know I get to do it all over again today.

Mystery solved

2007-11-25T15:49:00.001-06:00

The mystery of Parker's sleeping craziness is solved! We took him to the doctor this morning and he has a bad cold and ... get ready for this...4 dang teeth coming in!! He had two come in last week - and now he has 4 more! POOR kid!
Now that we have figured that out I have given him orajel to numb his little gums and he has been back to his old self! He has even gone to sleep twice today without a fight!! WOOHOO!
If only babies could TALK or point or somehow indicate blinding pain in their mouths so that desperate mama's and daddy's could DO something about it besides rock for hours saying "PLEASE JUST FALL ASLEEP". Because THAT doesn't work.

Mama Guilt

2007-11-24T09:41:00.001-06:00

We have the catheter behind us! Woohoo!!! We feel like it was good news even though the balloon did not work. We are just thrilled that we do NOT have a surgery date!! Our families have all gone home and we are getting back to our regular life after all of the "excitement" of last week.
Since the procedure, Parker has been screaming for an hour or longer any time he has to go to sleep. We used to be able to just lay him down and walk out of the room and he would fall asleep within 10 minutes or so. Well, the last two days have been a bedtime nightmare around here. He totally skipped his nap yesterday because we were at Jon's grandfather's house and we decided to spare the house the drama. We figured when we came home he would crash. wrong. He was up until 9!!! Then he woke up at 2:30 and did not go back to sleep until 4!!!! And he is not just in there whinning the "I'm tired and I can't get comfortable" cry. It's a new "I'm shreeeeeakkkking and you don't know why! You can just let me lie here alone if you want to, but keep in mind that I have multiple heart defects, possible teeth coming in and oh yeah, you did just hand me over to a man who stuck a tube up my leg and into my HEART but not before you held me down while they took my blood..but sure you just let me scream in here by myself. I'm probably fine" howel that we can not ignore. Needless to say - we are exhausted this morning.
It's a good thing I've found coffee! Poor Jon.

ps - the photo is Parker about 5 minutes after his versed shot (nice and relaxed)

Remember when...

2007-11-15T13:03:00.000-06:00

Research

2007-11-11T19:51:00.000-06:00

There is an organization called Saving Little Hearts that is dedicated to congenital heart defects and I invite you to go to their website: savinglittlehearts.com and snoop around. It is an amazing resource center! There is something in particular I wanted to tell you about!

As I mentioned in a previous post, there is not much happening to improve prenatal and post partum screening in newborns to help these babies. One of the tests that would be noninvasive, quick and cheap to do is pulse oximetry screening. All a nurse would do is wrap a little wire around the toe of a newborn baby and in a instant, she would know exactly how much oxygen the baby is getting. For cyanotic babies, oxygen levels are not 100. Parker Jay scored an 8 on his apgar scores, he was not blue, he did not look like he had a heart defect right after birth. When they put on the pulse ox, it was 80. Something was clearly wrong. We already knew of course, but what if we hadnt - would they have sent us home?

In Tennessee, the "Tennessee Task Force on Screening Newborn Infants for Critical Congenital Heart Defects met and reviewed what was known on this topic and they estimated the incidence of critical congenital heart disease is 170 in 100,000 live births, and of those, 60 infants have the potential for shock or death if the diagnosis is missed. They also found that the diagnosis is missed in 9 infants by fetal ultrasound assessment and discharge examination. These babies might have been diagnosed by a screening program. Getting the right diagnosis in these infants before discharge could spare many of them death or neurologic problems." A bill was passed on June 11, 2007 to allow further study and as of Oct. 2007, several hospitals in Tennessee are testing every baby before they are discharged, a few that have the equipent to test every baby in place, and also hospitals waiting for doctors to come by and set up the program. That is FANTASTIC!

On the Saving Little Hearts website is a link under "News" called "Expanding Newborn Screening Appeal" and there is a format for a letter to send to The American Board of Pediatrics and the American Academy of Pediatrics. The addresses are right on the page. All you have to do is print it off, and stick it in the mail! I think there is an electronic page as well.

I LOVE when there is something to do in a situation when I feel like I have no control! I feel like the best thing I can do for Parker is to make sure he has the best doctors and the best care possible. I am now finding out that there are things I can do to support research so that the doctors have the information they need to do their best!

Gotta love kids!

2007-11-08T15:03:00.000-06:00

Ok, this might be the funniest thing I have read in a LONG time. These are questions about moms answered by 2nd graders!

Why did God make mothers?
1. She's the only one who knows where the scotch tape is.
2. Mostly to clean the house.
3. To help us out of there when we were getting born.

How did God make mothers?
1. He used dirt, just like for the rest of us.
2. Magic plus super powers and a lot of stirring.
3. God made my Mom just the same like he made me. He just used bigger parts.

What ingredients are mothers made of ?
1. God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men's bones. Then they mostly use string, I think.

Why did God give you your mother and not some other mom?
1. We're related.
2. God knew she likes me a lot more than other people's moms like me.

What kind of little girl was your mom?
1. My Mom has always been my mom and none of that other stuff.
2. I don't know because I wasn't there, but my guess would be pretty bossy.
3. They say she used to be nice.

What did mom need to know about dad before she married him?
1. His last name.
2. She had to know his background. Like is he a crook? Does he get drunk on beer?
3. Does he make at least $800 a year? Did he say NO to drugs and YES to chores?

Why did your mom marry your dad?
1. My dad makes the best spaghetti in the world. And my Mom eats a lot.
2. She got too old to do anything else with him.
3. My grandma says that Mom didn't have her thinking cap on.

Who's the boss at your house?
1. Mom doesn't want to be boss , but she has to because dad's such a goof ball.
2. Mom. You can tell by room inspection. She sees the stuff under the bed.
3. I guess Mom is, but only because she has a lot more to do than dad.

What's the difference between moms & dads?
1. Moms work at work and work at home and dads just go to work at work.
2. Moms know how to talk to teachers without scaring them.
3. Dads are taller & stronger, but moms have all the real power cause that's who you got to ask if you want to sleep over at your friend's.
4. Moms have magic, they make you feel better without medicine.

What does your mom do in her spare time?
1. Mothers don't do spare time.
2. To hear her tell it, she pays bills all day long.

What would it take to make your mom perfect?
1. On the inside she's already perfect. Outside, I think some kind of plastic surgery.
2. Diet. You know, her hair. I'd diet, maybe blue.

If you could change one thing about your mom, what would it be?
1. She has this weird thing about me keeping my room clean. I'd get rid of that.
2. I'd make my mom smarter. Then she would know it was my sister who did it and not me.
3. I would like for her to get rid of those invisible eyes on the back of her head.

Because hearts are important too

2007-11-06T13:12:00.000-06:00

Research has shown that Congentital Heart Defects are the number one birth defect in our country and it has also shown that research on congenital hearts is unbelievably underfunded.

Early detection gives parents the chance to have their baby at the right hospital surrounded by the right doctors and that can make all the difference in the world. I remember during my pregnancy how many times I was offered a procedure that would test for a chromosomal defect and really, heart defects are much much more common than chromosomal abnormalities. As of January 2007 the American College of Obstetrician and Gynecologists will recomend prenatal screening for down sydrome for every woman regardless of age. Unfortunately, similiar procedures in relation to heart defects are still not available.

Here are some other facts about Congenital Heart Defects that I found amazing. This can be found on It's My Heart's website.

* Congenital Heart Defects are the #1 birth defect.
Source: March of Dimes

* Congenital Heart Defects are the #1 cause of birth defect related deaths.
Source: March of Dimes

* About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year)
Source: Children's Heart Foundation

* Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers COMBINED, yet funding for pediatric cancer research is five times higher than funding for CHD.
Source: Children's Heart Foundation.

* The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.
Source: Children’s Heart Foundation.

* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
Source: Children’s Heart Foundation

* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year.
Source: Children’s Heart Foundation

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research.
Source: Children’s Heart Foundation

* Though research is ongoing, at least 35 defects have now been identified.

4-8 percent born with CHD have Hypoplastic Left Heart Syndrome.
4-10 percent born with CHD have Atrioventricular Septal Defects.
8-11 percent born with CHD have Coarctation of the Aorta.
9-14 percent born with CHD have Tetralogy of Fallot.
10-11 percent born with CHD have Transposition of the Great Arteries. (PARKER)
14-16 percent born with CHD have Ventricular Septal Defects. (PARKER)

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.
Source: March of Dimes

* It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.
Source: March of Dimes

Pediatric Cardiothoracic Surgery has improved drastically in the last fifty years. The strides they have made and the diseases they can now fix are truly amazing. 30 years ago babies born with TGA would have died in a matter of days. It is awesome that there is still more room to improve things in this "heart world". I think it is really important to raise awareness of CHDs. I know that when I found out about Parker's heart I had never heard of anyone who had a heart defect. I don't think I had ever considered that babies had heart problems. Anyways, it all starts with education and I am hoping that by putting Parker's story out here I can help to bring awareness to congenital heart defects and maybe if there is enough talk by enough people then there can be some changes in prenatal and post partum testing in every infant. No family should have to hear "We don't know what else to do".

Halloween 1957

2007-11-01T19:39:00.000-06:00

Happy Halloween!
I found some Halloween - Heart trivia for you! Because I can relate anything to the heart! I found this article from a friend of mine, a fellow TGA Mama, and wanted to pass on the information! This is how the portable pacemaker came about!

A little backround on what was going on in Cardiac Surgery World: they had just started using pacemakers to help kids recover from open heart surgery. They plugged into the wall socket and were pretty big.

Well - on Halloween night in 1957 there was a HUGE blackout affecting most of Minnesota and the western part of Wisconsin. There was no power for 3 hours. "For most, the blackout was just an inconvenience. But for a few young heart patients connected to pacemakers it was life threatening". Jack Norton, a historian, found a newpaper article that described what went on in the hospital during that blackout.

"They had police officers pull up to the side of the surgery suites and simply turn on their headlights to provide light for the surgeons. They scrambled to try to keep blood cold by grabbing ice from various coolers to stick in the blood refrigerator. Doctors scrambled to find drugs to keep their patients hearts pumping" he recalls.

Not one child survived.

The trauma of that event rattled pioneering heart surgery C Walter Lillehei. The next day in the hospital hallway he flagged down Early Bakken, an electrical engineer who was working with hospital surgeons on new medical devices - working OUT OF HIS GARAGE. The two agreed that there needed to be a way to back up the pacemakers when there was a power failure. The children would have survived the three hours had the pacemakers worked.

Lillehei asked Bakken if he knew how to make a pacemaker than ran on a battery. After some tweaking they came up with a device that was about the size of a paperback book and fit in the patients bed. Bakken tested it out on a lab dog and saw that it worked. He said "Ok now, this seems to work so I'll go back to my garage and make a pacemaker for humans".

But he never got the chance! When Bakken went to work the next day, he saw Lilliehei using it in the recovery room of a CHILD. Bakken was not convinced that it was ready for human use yet and questioned Lillehei about why he didn't wait for the "people version" of the pacemaker.

Lillehei says "As long as this battery operated pacemaker is avaiable, I'm not going to risk using another child to a power failure".

Can you imagine if that happened now?! It wouldn't! Too many politics and law suits! Too bad - I wonder how much creativity is being shut down because of red tape!

On security

2007-10-30T12:55:00.001-06:00

You know those poor couples you see going through security at the airport? The ones who can't get it together? The ones who have more bags than people and further more they have weird, sticky things in their bags that do not belong in airports. The ones who look so mad at each other you are about to do them a favor and call in the divorce lawyers? You know - the ones with kids? We were that couple in the airport!

I was carrying Parker on my hip (who, by the way, was arching his back and wiggling to get out of my grip), a huge and heavy backpack with all of his "traveling necessities", our jackets and I am trying to take off my shoes and take out the DVD player in my backpack. The security lady, with no mercy, says "you need to take off the baby's shoes Miss". Right.

Jon and I are bumping into each other and I hear him sighing in frustration behind me. We are trying to stick together and we are both furious at the other person for not helping. I turn around and snap, "a little help?" but I realize he is carrying his own backpack, another backpack with the camera and video camera, our lap top bag and the freaking car seat! He shrugs his shoulders in a "what would you like for me to do about it?" way. I can feel our fellow airport security peers eyes burning into my back. If you look into their eyes you will see that it is a look of pure pitty. They are screaming in their minds "people like that should not be allowed to leave home". Oh I heard it.

I can't speak for Jon on how stressful this was to him, but he was literally sweating once we made it through. No lie, we were out of breath!

My reason for this post is to ask you this, please, be kind to these couples. You don't actually have to help if you don't want to - although how hard is it to push one of those bins down so a poor woman with her baby and 5 million things does not have to bend down to get it herself - but please, don't stare. Don't roll your eyes. Don't sigh loud enough for the whole airport to hear you. Seriously don't laugh. For one thing - it is not nice but for another - you might sitting in front of them on the plane and the mom has the ability to stop the child from kicking the back of your chair - or not.

The Great Sunday Change

2007-10-20T09:51:00.000-05:00

Tomorrow is another church day...
This used to not be a stressful event for us - in fact - this used to be a time of reflection, rejuvination, and centering. Now that we have a 9 month old, church has become anything but! For the last few months Jon and I have split the duties. Jon held him in the beginning during the readings and homily so I could focus and then I would hold him during prepartions for and during communion so Jon can focus. Now it just doesn't matter anymore.
When we walk into church in the morning Parker always so looks so angelic. I carry him in proudly, bragging in my mind about how sweet he is and about how lucky I am to have such an adorable and well behaved baby. People wave at him and he smiles and laughs in return. Then something happens. We sit down, the organ starts, we sing happily, and then just as we all sit down and a prayerful quiet comes over the church - something happens to my son. I bow my head to pray and I hear the click click of his thrown pacifier hit the ground 3 pews in front of us. "BA BA MA MA DA DA DA DA!!" he screams ecstaticly with the freedom of not having anything in his mouth. "Get the other one out of the bag" Jon snaps out of desperation to get him quiet as the looks from our fellow worshipers fall on us. "I didn't put one in there, you said you were going to get it - it's in his crib" I whisper LOUDLY pulling everything out of the bag even though I know it's pointless. "LA LA LA LA LA LA LA BA BA BA BA" He continues - even the priest looks at us. "No you were going to-" "Does it matter?" I walk three pews up, get down on my knees to retrieve the missing pacifier. Hurrying back, I pop it back in his mouth to shut him up. Quiet. Sigh. "click click click". and its gone again. "BA BA BA BA BA BA BA BA LA LA LA LA LA LA".

Ok so we go to the nursery. No one is working but there is another mom in there with her son, Ethan, who is about Parker's age. They play quietly together and his mom and I isten to mass going on through the speakers. Then Matthew and his dad come. Matthew is a huge 1 year old and he is a bully. After 3 minutes of "Matthew stop hitting, Matthew don't take that. Matthew don't pull his hair. Matthew don't sit on him. Matthew Matthew Matthew...." it is time to leave.

Back in the pews it's time for communion. All is quiet, respectful, and reverent. Well excet for our pew. Parker is kicking the seat in front of us. This is new so Jon and I are looking around like everyone else trying to figure out what the thumping noise is before we realize it's OUR child. He is writhing in my arms trying to break free, kicking his feet violently as I walk up to take communion all the while singing along with our Holy Holy Holy "LA LA LA LA LA" louder than the organ is playing.

Jon takes him to the back of the church because clearly we are moving past being a distraction. I can hear him all the way from the back "MA MA MA MA MA MA MA MA MA" getting louder and louder. And it's time to go. i grab our stuff and hurry towards the back signaling Jon with my hands to get outside "go go go go go"!

And wouldn't you know he sleeps all the way home?

I don't know how it happens or why. I just know that the sweet and innocent looking angel we bring into church is not the same bewitched banshi we rush out with an hour later! And I also know we are doing it all over again tomorow.

Figuring it out

2007-10-14T22:20:00.000-05:00

In my struggle to find peace with everything that is happening I started to read Romans. I remember in one of my religion classes called "Life and the Letters of Paul" that Romans was refered to as the "faith" book and I am finding that to be true. Here is the message I am getting from all directions: my readings in Romans, the homily/sermon this morning/my devotion book: Calm My Anxious Heart

Be content in every situation "I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want"

When I think of the word "content" I don't think of exubrant, jumping for joy, thrilled, ecstatic - I think of at a calm peace. A place of not challenging or fighting the situation, but accepting it.

I have been meditating on the imagine of Jesus in the garden the night he was arrested. He ASKED God to "take this cup from me". He was not eager to endure what God was asking of him. He told God that he did not want to do it - BUT (and this is what contement is) he said "but not my will but yours be done". And he accepted it. Jesus knew something I have just not been willing confront - not since one year ago when I found out about Parker's heart.

I read this little story tonight and wanted to share it here because it has changed the way I am thinking about God and my life as the mom of a baby with a heart defect. I needed this tonight.

"I need oil" said an ancient monk, so he planted an olive tree. "Lord, it needs rain that its tender roots may drink and swell. Send gentle showers" And the Lord sent gentle showers. "Lord," prayed the monk " my tree needs sun. Send sun, I pray Thee". And the sun shone through the dripping clouds. "Now frost, my Lod, to brace its tissues" cried the monk. And behold, the little tree stood sparkling with frostm but that evening, it died.
The monk sought the cell of a brother monk, and told his strange experience. "I, too, planted a little tree" the other monk said "and see! It thrives well. BECAUSE I ENTRUST MY TREE TO ITS GOD. HE WHO MADE IT KNOWS BETTER WHAT IT NEEDS THAN A MAN LIKE ME. I LAID NO CONDITION. I FIXED NOT WAYS OR MEANS. 'LORD SEND WHAT IT NEEDS' I PRAYED 'STORM OR SUNSHINE, WIND, RAIN OR FROST. THOU HAST MADE IT AND THOU DOST KNOW'

I don't know how to entrust Parker to God. I don't know how to give up control on this because I dont know what will happen. I don't know so many things but I do know this - if I am to find peace, contentment, acceptance - if I am to learn how to trust God in the bad times - then I have to trust that God will lead me to contentment. I know this is the right thing to do. I know it is time to stop being angry and start being thankful for the amazing gifts that I have and that Parker has - a strong body, a willful spirit, brilliant doctors with phenomenal technology, the list goes on and on. It is time to give up and let God run this show because He made Parker's body just the way it is and He knows what it needs. I like the greek translation of Philippians 4:13 " I am able to face anything by the one who makes me ABLE to do it"

If you are still reading this far into this, I realize this is a very personal part of my life to be making public. I learned when I was studying English that the only way we can immortalize something is to write it down. It's like the Pharoh said in that old 10 Commandments movie: So let it be written - so let it be done!

A big ole THANK YOU!

2007-10-12T18:23:00.000-05:00

I have been really struggling with God about all of this for a long time. I was at a great place with it before this new news. Anyway - to make this a short entry - THANK YOU to everyone who has posted, or called, or emailed me any Bible verses that help you out in hard times. I really appreciate them and am reading them.
If you are looking for Parker updates, go to our carepage.

Go to carepages.com
sign up
and visit our page - the name is ParkerJay

Let me know if you have problems getting there.

Speaking of Holland...

2007-10-11T09:36:00.000-05:00

Well for those who do not have our carepage information or do not have the details about Parker's heart - here is the quick catch up:

Parker was born with Transposition of the Great Arteries (his pulmonary artery and aorta were switched leaving him with two separate circuits - one side of his heart was receiving blood from the lungs and sending it back to the lungs and the other side was receving blood from the body and seding it back to the body - so he was sending unoxygenated blood to his body)
He had the Arterial Switch Operation when he was 3 days old to switch the arteries. He was home 15 days later.
Here is the new stuff:

At his last echo (in Feb) they found mild pulmonary stenosis (that is, narrowing in his pulmonary artery). At todays echo, they found that it is now severe. A normal gradient for that artery is 40 and his is 70. What that means for his heart is that the right side of his heart is working very hard to squeeze blood through that narrowing to get blood to the lungs. The pressure in the right side of the heart should be around 20. His is 80. That means the left side of his heart is working to push blood to his lungs as hard as the right side is working to push blood to the whole body.
In the echo, it looked like the stenosis was at the valve. If that is the case, he can have a catheter procedure where they would go through the leg into the artery and inflate a balloon to widen the artery.
If the stenosis is higher up, they may have to put in a stent (which would have to replace throughout his life as they do not grow)which will hold the artery open. They can also do this in the lab, but it is riskier and is not fixing the problem.
Worst case, and I'm not sure what would require this, is another open heart surgery.

Needless to say - I am pretty shaken up. I'm frustrated all over the place because I'm not sure how his heart could be functioning like this and I not know it. I feel like I have the responsibility to know that stuff. He's not tired, he's not sweaty, he's not blue or swollen. He's crawling all over the place, taking toys, giving kisses, demanding food, he's a big nutty nut. I always knew this was a possibility so I can't say that I'm shocked like I was the last time - but, as a friend of mine who has gone through this same thing put it, I feel derailed. I felt like we were on the "healthy" tracks because he was doing so well and actually we are not. We are on the "out of my control again" tracks and I hate that place.

I have spoken with a good friend who went through this same thing wtih her son when he was Parker's age and received some wonderful advice about things that I can be in control of: what information I let into my head, what doctor I am working with, and how I view the problem. I am trying VERY hard to have faith that this is ok and to come to terms with the fact that this is our life.
I was starting to get the feeling that when they said Parker's heart was "fixed" they meant that it was perfect. And that's not what they said. Parker's TGA is fixed, compeltely, and that is amazing - but in doing that, little problems will inevitably come up for him. It is not perfect. And that's ok. This is not the end of the world. This is not the worst thing we have been through.
I think the problem is not that I am worried, although I am, but it is the knowledge that there will always be something to worry about. All I have to do is get on board with that, and try to worry peacefully and not let it get in the way of the days that ARE perfect. I can worry when I need to and praise God when I don't.

On Holland

2007-10-05T13:07:00.000-05:00

A good friend of mine, Melissa, is heading to Michigan tomorrow for her daughter's 3rd and hopefully final open heart surgery. Melissa emailed me shortly after I found out about Parker's diagnosis. We are members of an online support group for mothers with heart babies. Anyway, Melissa told me a lot about what to expect and she even sent pictures of her daughter after surgery so I wouldn't be so upset when I saw Parker. Today as she gets ready for this next surgery she posted this article, Welcome to Holland, and said that she felt that it really expressed what life is like having a child with a disability.
While I do not consider Parker to have a disability, because he was fixed, we are less than a week away from our next cardiologist appointment. All of those familiar fears come back again and I have to come face to face one more time the knowledge that our lives could change next week and if it doesn't then I can rejoice again because God heals and Dr. Mavroudis is a genius. Anyway, I wanted to share this article because I do understand what it is like to land in Holland:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Way to go Parker!!

2007-09-06T21:34:00.001-05:00

Just had to say that Parker did GREAT today. 3 hours after waking up he was crawling!!! (He is a nutty nut!!!) He is even trying to pull up on the kitchen chairs (Lord, help us all!).
I did not like being back at the hospital one bit....and that is all I'm going to say about that.

A year ago today...

2007-09-05T21:52:00.000-05:00

Jon and I are sitting here enjoying a pleasant evening, watching the Republican debate. He just asked me if I knew what we were doing a year ago today and do you know what the answer is? I'll tell you - we had just come home from our 20 week ultrasound. We found out a year ago today that Parker is a boy. We also left the ultrasound incomplete because the nurse said, "We can't see all of the views in his heart so we need you to come back in two weeks". We had no idea how our lives would change. We had no idea how strong we are and we had no idea how much love we had to give. I did not know what transposition of the great arteries was. I had never ever heard of it. Down Syndrome had crossed my mind, cleft palate had crossed my mind - but not a heart defect. How much has changed.
Even a year later we are still reminded of the day we were blindsighted. We are reminded every day that Parker survived what he has survived.
Tomorrow he is being circumcised, something he would have done 7 months ago were it not for his heart. Reminder. We are taking him back to the hospital at 9:30 and handing him back over to more doctors, trusting that Parker means as much to them as he does to me. It is a simple operation. He will be asleep for 40 minutes or so. I am still a wreck though. We are going to be sitting in the same waiting room that we waited in the day of his surgery.
He started crawling this weekend. Miracle. I remember, a year ago (minus two weeks), thinking he would not come home with us. Now he is busy pulling books of my bookshelf, throwing temper tantrums because he can't play with the remote control, climbing out of my lap to get a toy - I just can not get over what a miracle he is. Everything he does. Because he didn't have to be here. He was never garanteed to me.
A year ago today - I did not have love strong enough to feel the gratitude that I have today. A year ago today - he was my baby that I wanted. Today he is a miracle that I always needed.

frogs in water

2007-08-25T08:55:00.000-05:00

I read on the news this morning about a controversial new video game called Man Hunt received a new rating called Adults Only because of the violence. Apparently in the game you are a scientist who has escaped from an insane asylum and is now hunting down people and entertaining his sickest fantasies. You, as the scientist get to design and carry out the fantasies.
Charming.
All I can say is - remember Mario Brothers? Mario? Luigi? The bad guys were flowers and mushrooms. Let's go back to that.

You know? I heard a speaker once say on the matter of violence today that what has happen is like a frog in boiling water. If you put a frog into boiling water it will actually jump out. But if you put a frog in warm water and turn up the heat slowly - it will quite happily boil to death. I think that is what has happened over the last 20 years. We have sat by and happily watched while things like ManHunt became entertainment.

Parker wins again!

2007-08-22T20:20:00.000-05:00

Apologies to my always loyal readers :-) We were doing the family vacation thing in Dallas last week (a MUCH needed fun and relaxing week) and this week I have been without internet during the day (I can't for the life of me figure out what people did without it!).
Tonight is Jon's late night so I came home for a leisurely evening of girly tv shows and finishing my book. After sitting here for 15 minutes I realized our apartment was filthy so Parker and I cleaned in between his dinner and bath (and actually my dinner and bath come to think of it!) Here is my latest "mom" story.
Parker is scared to death of the vaccum clearner. Tonight was not his night as our carpet was in desperate need of suction. I usually start by the front door and work my way through the living room - leaving our bedroom for last. As far as Parker is concerned the worst part is when I disappear into the bedroom (surely sucked up by the vaccum cleaner never to be seen again) so tonight I decided to start in the bedroom and then be funny and dance around during the last part to try to cheer him up.
I turned on the vaccum cleaner (he knew I had it - he saw me go in with it) and could hear Parker's shrills from the living room. "It's ok! I love you and I'm coming out in a second". I yelled over the noise. I thought about how this was a teaching experience. I could not pick him up every I vaccumed. He would soon learn that this was not a scary thing. I am the boss! I am the teacher!
30 seconds later I walked into the living room and saw poor Parker sitting in his high chair with tears just streaming down his face. "He....will...learn" I tried to convince myself. But then I thought even more convincingly....Who am I kidding?! Parker is the boss! Parker is the teacher! And I ran and picked him up and carried him the rest of the time I vaccumed.

PARKER: 1
MOM: 0

ok ok

PARKER 1,596
MOM: 0

2007-08-07T09:53:00.000-05:00

A Reflection on the last 2 years:

There was a BEAUTIFUL wedding that was better than anything I could have ever dreamed up!
There was an amazing honeymoon in San Antonio! Mexican food every night! Sea World!
We moved to Chicago! Jon started school and I went to work!
We worked and studied - worked and studied - worked and studied!
We went on dates! We saw the city! We went to great restaurants! Shopped on Michigan Avenue! We laughed all the time!
We fought about what kind of cheese to buy. About what to watch on TV and who was going to clean the kitchen after dinner.
We made up and laughed some more!
We paid bills. We paid bills. We paid bills.
SURPRISE! We were pregnant!
We were scared and happy. Jon threw up more than I did.
We got a crib and some baby clothes and laughed at what we had gotten ourselves into!
We found out our baby was a HE and he was going to be very sick.
We cried
and cried
and cried
We hugged and hugged and hugged and were terrified.
For the first time - Jon could not make it better.
But we had strength. lots and lots of strength.
We even laughed sometimes.
Then...Parker was here!

HE

WAS

BEAUTIFUL

and perfect. And we fell in love again.
There were hospitals and doctors and surgeries
and family
We learned we need our families
We were sad but we were ok.
Parker was stronger than all of us and we came home!
And then there were 3!
We laughed. We tried. We messed up and we did a good job.
Now Parker laughs with us and we all have a good time.
We don't go to movies. We don't go to restuarants or shopping on Michigan Avenue.
But we don't mind.
We have loved each other through 2 years. We are strong and we are happy.
We have learned that we KNOW HOW TO BE HAPPY when things don't go our way.
We have learned that we are not the boss and we go with the flow.
We are just happy to be going together.

2007-08-02T10:56:00.000-05:00

I am going to talk about sex....sooooo...if you are my dad or are uncomfortable with the knowledge that I know what sex is - then please stop here.

I was listening to the radio this morning and they were having a conversation about taking the love out of sex. They say this would solve everyone's problems because men don't want it there anyway and women would have time for sex because it would be less time consuming (how romantic). What does that mean exactly? I can't be the only person who is not sure what the radio host was suggesting. Take the love out of sex? So ... we should have sex with anyone...anything? We should put it on our "To Do" list and hope to meet someone cute at some point during the day?
Is this really the attidue a majority of people have?

4 people who called in have had sex with more than 30 people!!! 30!! I'm not trying to be rude but that makes me rethink shaking hands with people I don't know.

Now - I know not many people save sex for marriage anymore (which is sad in itself because they are missing out on something great) and I'm not talking about people having sex in a relationship with someone...I'm talking about this class of people - apparently a large class that is having sex with random people they have no feelings for at all. I guess I was under the impression that people were having sex because they love someone - or at least think they do. This idea of making all sex casual and "taking the love out" is unbelieably demeaning to me. I feel absolutely like an object when I hear peopole talking like that. Have women worked this hard for this many years to be able to vote, go to work, speak up, sit on the couch with a glass of wine while their husband does the dishes - to now being a man's private beck and call girl? No feelings. No sharing. No attatchment. But satisfaction garunteed.

Do you know what the worst part of it all is? Because at the end the day I have made my choices and I have my morals in place. I can hear this garbage all day long and I know that it is wrong. BUT the worst part is - these adults who are "taking the love out of sex" - who are having sex with 5, 10, 20, 1000 people...are going to teach their children that this is what sex is. And their children - who will not know anything different - are going to be sitting right next to Parker in school.

It's happening...

2007-07-27T09:47:00.000-05:00

I did it.

I was in the elevator with Parker this morning on my way to work. The door was about to open when I realized he had milk crusted around his mouth. Do you know what I did?

I licked my thumb and rubbed it off.

I walked out and stopped dead in my tracks...

What has happened that it is now acceptable for me to LICK my thumb and TOUCH someone's face?!

The forces of Motherhood are stronger than I was aware of.

How things change...

2007-07-26T16:48:00.000-05:00

So I had all the boys at the park today with a good friend of mine, Meggan and her daughter, Margret. We had just come from lunch and bought some popsicles that we were happily eating. We were the only people there except for 3 boys - maybe around 9 years old. They were playing Hide and Seek around the equipment and trees. Meggan and I were talking about playing outside when we were younger and what a blast that was. We were saying that we had thought times had changed and kids didn't play outside anymore. We were saying how refreshing it was to be proven wrong and that times had not change at all!
Then...I heard something...a cell phone...but who? Who would have a cell phone at the park?
Then I heard a 9 year old voice: "Where are you you punk?! This is stupid. Where is Chris? Oh! Thanks!" and off he runs and finds Chris!

9 YEAR OLDS PLAYING HIDE AND SEEK ON CELL PHONES!!!!

I am sad to report to you my friends - times have changed.

And now for a history lesson...

2007-07-18T10:08:00.000-05:00

I have tried so hard to learn everything I can about the heart. I have read about every congential heart defect, I have read about all of the surgeries...I have done everything short of making flash cards for myself (which would be funny...like a matching game: Hypoplastic Left Heart Sydrome goes with The Fontan!) I have done all of this to no avail. I can't retain any of it to save my life! It is just easier to say it is all "magic". I keep reading though -
I am intrested in the history of cardiothorasic surgery today and was doing some research this morning. It is interesting that it all "took off" in the last 100 years or so. For obvious reasons - previous surgeons tools included things like scissors and tweezers and I have learned this: you can't be moving around aortas and cornary arteries with scissors!

What is even more interesting and therefore the subject of this blog entry is that these medical pioneers, these men (and a few women)who studied so hard and had such incredibly brilliant theories...were absolute and total CRAZIES.
Case in point? William Forssman!
This guy was the first person to perform a cardiac catheterization on a human being. No one would let him practice on a real living human being (naturally).
So who do you suppose he catheterized?
Are you ready for this?
He did it on HIMSELF!!!

...oh...my...gosh...

In 1929 he numbed up his elbow, inserted a canula into his OWN antecubital vein, pushed the catheter through it until he FELT it hit his right atrium. Then he marched himself over to an x-ray and took a nice picture of it to prove that it could be done.

Do you know what he got for this monumentous discovery? Some new friends in white jackets to take him away and lots of medicine! Everyone thought he was just nuts. He won eventually though. He was given the Nobel Prize in 1956!

So as "nutty" as he was and most of them were I am just so thankful for all of the crazy heart doctors. How far they have come! What would the world be like without the brilliant and crazy right? We would be short one little bald guy that can make even grown men babble that's for sure.

Parker's Bad Night

2007-07-16T08:52:00.001-05:00

Once upon a time, Parker used to sleep all night. Once upon a time I woke up in the morning and felt like I had been asleep. Those days are over...
Well - after nights and nights of Parker waking up every 2 hours we finally made an educated decision to embark on the Ferber Sleep Method. In this method, you let the baby cry for 5 minutes before going in. When you go in you don't touch the baby - you just tell them that you are there. You leave again and wait 10 minutes. The same rules apply when you return. You leave for 15 minutes next...and so on all night until they finally "learn how to soothe themselves and drift off to sleep".

We have tried everything under the sun to get him to go back to sleep (we even tried letting him sleep in our bed...but he just pulled our hair and screamed.)We decided we could let him cry for before going in to get him. Our logic was maybe he was not all the way awake and would fall back asleep if we left him alone. Jon and I decided to sleep out in the living room so we did not hear him until he was actually crying. We were obviously prepared for a LONG night.

Right on cue at 1:00am we hear Parker start to cry. "Do you think is a good idea?" I asked Jon. "He is fine - he'll go back to sleep. Let's just watch the clock" Jon reassured me. "I wonder what is going through his head" I said.

"Ug - why am I awake?! This just ticks me off to no end! Where is that dang pacifier? It's hot in here isn't it? Yeah it is definately hot in here. When Mom comes she'll turn on the air. Where is Mom? She is usually here by now. Where is that stupid pacifier?! Ok - this is getting ridiculous - where is she?! Maybe I should scream louder? It is so hot! Do you know what I am starting to think? Maybe she is gone. Maybe I am never going to see her again. Maybe she just left. That's what happened. I am alone. I am all alone. I will never be able to trust or love again. My heart is sad and my soul is ruined...I will never be the same again.

Needless to say - we let Parker cry for exactly 25 seconds.
Richard Ferber, obviously, is man with a heart of stone!

2007-07-13T10:26:00.000-05:00

Where is the line between being a nice person and being a human speed bump and why is it that human speed bumps never see it?

2007-07-07T22:18:00.001-05:00

I read a few message boards on this website called BabyCenter.com. There is one message board for babies born in January 2007 and the other is Heart Babies. I find all kinds of information about normal baby development for Parker's "normal" side on the January '07 babies and I get to vent, ask questions, and find strength on the Heart Babes board. I have come to a realization though. Today I was spending some time on the Jan. board and I can't tell you how many women complain, whine, and bring up every negative thing about their baby. There was a thread called "what anti depressant are you on?". Several of them have gotten divorced since January. Several of them wish they did not have a baby. They bicker, argue and criticize each other in all kinds of rude ways. It is just awful.
The mom's of heart babies though - these women are unbelievable. Some of these women have children who have had 3 or more open heart surgeries, their babies have all kinds of mental delays, they have been in hospitals for months on end. For them a cold could be fatal, every cardiology apt has the potential to change their life, every year their child get older comes with more and more risks. These women are amazing. Tonight one woman posted "BIG MILESTONE" and she was bragging in tears because when she asked her 11 month old son (who just recovered from his second open heart surgery this year) to give her a kiss he planted a big wet one right on her lips! These moms don't complain about their baby who doesn't sleep through the night - at least they are together at home! They don't complain about dirty diapers - at least their childs systems are working! They don't complain about the cost of formula or clothes - what in the world could more important to spend your money on! Every day - every mundane, boring, dirty and exhausting activity is cherished like it might not be there tomorrow. Can you imagine how hard it must be to love someone that might be taken away from you? They are so strong.
No matter how well Parker does throughout his life and how far away I get from the "heart world" - I will always remember these women. The ones who have lost their babies. The ones who are still facing multiple surgeries. The ones who are lucky like me and will watch our babies turn 1 and 21 and 31!
I guess the point of this note is to say that when someone is told they might not be able to keep their baby - and they do - the world is never the same. All of a sudden - they have all they need. I have all I need.

2007-07-06T08:28:00.000-05:00

Parker and I are enjoying a week off from our "Nanny" gig. Yesterday to I took him to the park. We were sitting in the grass playing with Parker's dinosaur and he kept looking at the kid on the swing. Parker laughed every time the little boy, Spencer, went up into the air. It was the first time in my life as a mother that Parker wanted to do something and I wasn't sure if I was ready.
I walked him over to the baby swing - the black rubber one with four holes in it. "There is no telling what kind of sick kids have been on this" I thought trying to rationalize walking back to our safe little spot in the grass. "I don't even know that he wouldn't fall out of this thing. I would not be responsible to put him in there" I tried again. But Parker was busy kicking his legs and arching his back to get away from my arms with a HUGE smile on his face. He was so ready and I knew I was being silly.
So I put him in the swing and held his little hand and put my other hand under the swing. I just kind of *moved* it backwards and forwards as far as I could reach to keep my hands on him and the swing. He worked very hard to pry his hand loose from my grip - he actually pushed my hand away! So I did what I had to do - I let go of his hand and I let go of the swing - and I pushed him.
I swear I did not breathe as he flew backwards away from me.
He laughed and squealed the whole time. He had such a blast!

I can not believe how grown up he is now. I remember back when he was so tiny. He has come so far. He can roll over, sit up a little, stand on his feet, he gets sad when Jon leaves in the morning, he cries when I walk past him without saying "hi" or something, he likes bananas, he does not like peas, he sleeps with a monkey, he likes to play in the water - he is just this perfect little person. He is growing up so fast. I'm not sad about it though. I can not wait to see how he will be the older he gets. I wonder what he will be interested in. Sports? Art? Science? Reading? Music? Horseback riding? It is just amazing to me that at this time last year I was just finding out that I was pregnant and now there is this whole new person in the world. He lights up rooms everywhere we go. He laughs and talks to everyone. We never leave the house without someone stopping to talk to him. I am already proud of who he is I guess. I suppose today I just feel lucky.

Well - we are headed back to the park! Hopefully he doesnt get his eyes set on the monkey bars!

Road Rage

2007-07-02T08:44:00.000-05:00

The other day I was leaving work in my car. I was minding my own business, listening to Sarah Evans. Well I was stopped at a stop sign and so was a car to my left and there was also a car behind that guy. So - being the law abiding citizen that I am, I waited for the car to my right who got there first procede through the intersection. Now, it was my turn. So I went. Only - so did the guy that was behind the first car! He almost hit me. The thing is he was MAD. Not just "roll his eyes" mad but he was absolutely furiously yelling at me. As luck would have it (or not have it) he was going to turn left at the approaching light and I was going to turn right so he pulled up right next to me while we waited for the light to change. He had his whole upper body all the way out of the window screaming at the top of his lungs - swear words mind you - while poudning his fists HARD on the side of his truck. I was actually scared. I didn't want to make eye contact with him, but I also didn't want to look away. My doors weren't locked but I didn't know if I locked them if that would provoke him more (as has been my experience with the homeless people I have encountered on the street).
Finally the light turned green and he peeled off. I couldn't help but thinking - why was he so mad. Obviously he was in the wrong anyway - I had the right of way, but even still..even if I HAD been wrong - why was he so angry? And who does he think he is that he can berate a young girl sitting alone in her car?
Moral of the story - be NICE to other drivers....... or you will end up a blog entry!

2007-06-23T23:29:00.000-05:00

To those who have been checking and have noticed that I havent written in a week - sorry. It's been a rough one!
Every year I need some kind of change. It seems like when summer comes I just feel cramped and I need my environment to change. So we decided to rearrange our apartment this week! Which was unfortunate for Jon because after trying 4 different arrangments and moving our couch to every side of the apartment possible...we decided the way we had it was really the only way! So we moved some pictures around and a couple of smaller pieces and I feel happy! I learned this about myself though..I do not like unfinished jobs and I really don't like leaving a mess. I had to leave it messy one night because I was so tired I could barely walk and I woke up at 5 thinking about cleaning! I thought about it all day! I would rather work 12 hours one day and finish the job then work a few hours every day for a week...but that is what we have had to do as Parker does not like to be ignored! Hopefully tomorrow we will be done and I will feel like I accompolished something!
On another note -
I went back to Children's today to see a friend who's daughter also has TGA. Delany had surgery a week ago. I do not want this entry to be about it, but being there brought so much back. The smell...as soon as I walked through the doors of the PICU it just stuck in the back of my mouth. Everything about it was just...awful. The kids walking around looking tired and weak, the parents standing by just drained. Everyone has the same expression...the "what happened to us that we are here? how did this place become home?" look. It was just weird. I saw Delany and remembered when Parker was that little and that sick. I watched Jen and Kevin talk to her and try desperately to make her comfortable and I remembered when Jon and I were there. I was watching Jen and Delany and I realized that I was wrong. I was never strong enough to be in that room with Parker. All of this time I thought I was the one who found strength but after watching it all from the outside I know now Parker was the strong one. Little Parker was strong enough for all three of us.

The result of my google search "funny signs"

2007-06-13T14:59:00.000-05:00

What does it mean?!

2007-06-12T09:57:00.000-05:00

I had a dream the other night and usually I can figure out what my dreams mean - but I am lost with this one. I had a dream that I was going on a picnic with my family. My mom called and said that we were wearing dresses. So I went into my closet and EVERY dress that I have ever owned was in my closet. I mean dresses that I remember from elementary school all the way up until now! Dresses I wore to church, the dress I wore to graduation, prom, my WEDDING dress...
So I started trying them all on and NONE of them fit. Some were too big and some were too small. Some were sewn weird so the seams were in the wrong place. It was an awful dream.
You know when you are running late and can't find anything to wear...it was like but for hours haha.
What does it mean?!

2007-06-08T10:54:00.000-05:00

Well! Chicago CAN be a great city! Last night after work Parker and I were walking to Walgreens to pick up some medicine and I noticed that street that Walgreens is on was blocked off. I noticed lots of lights and limos and people were screaming. Would you believe that the Premier of Ocean's 13 was a block away from my apartment! Parker and I got a spot right up against the fence and were 15 feet away from George Clooney, Matt Damon, Bernie Mac, Ellen Barkin, Don Cheadle and Bruce Willis!!!!! George Clooney waved at Parker :-)(well - he waved in the direction of Parker anyway!)

On Marriage...

2007-06-06T10:27:00.001-05:00

I was watching The View this morning - because that is what happens to women when they have babies...boring things become interesting :-) Barbara Walters made the comment "everyone knows that if you marry young you will get divorced". Ouch... I hope that is not the reality. Not for the sake of my marriage because divorce isn't optional there. I know it is a common thought though. If you marry young you will get divorced. It seems to me though that today it doesnt really matter to much when you get married... people are going to get divorced. In my opinion it works BETTER to be younger. At least it has for us. We always lived with someone else we had to consider. Our plans always effected someone. We always had to share our things. We always had to help out. We never had a chance to learn our own way of doing things. We never had a chance to be self centered with time or money. We do not resent each other for having to give up ourselves because we don't have any idea who we are without the other one.
I'm not saying the way I did things is the only way or the best way - but it certainly isn't a wrong way.
I am staggered by the divorce rate. More than 50%! Probably more than that. I heard one of my friends saying "for my first wedding I want to have....". Divorce is SO common that people are starting to expect it? Is that what is going on? Maybe the problem is people think if they aren't happy right at a particular moment then they can just change and do something else. We do not have a "right" to be happy 100% of the time. If that were true we would not have to work, go run errands, wait in lines, get stuck in traffic, lose things...that list could go on for a LONG time. Happiness can not be surface deep. Happiness has to be what you feel after you go through something crappy and say "wow - I'm still ok! This is great!" Anyone can be happy when things are great. Anyone can be happy with their spouse when they pick up after themselves or do a chore you didn't want to do. Anytime I get into a "woe is me - I have to do the dishes again" attitude I try to remind myself that Jon loves me and would feel bad if he knew I was feeling like that. I ask for some help - maybe we fight about it, maybe we don't but at the end of the night we have worked together and are happy about our decision to work something out instead of give up and be miserable.
It's amazing and liberating to know Jon isn't leaving. I would live in constant fear if divorce were possible. How could I have mean days, or be awful when I am sick, get chubby, or go through "gross" things like pregnancy and all the "wonderful" things it has done to my body if I thought Jon might decide "enough!" and leave? Can you imagine that kind of pressure? It is incredible to be able to say "yeah I was horrible - and Im really sorry" as many times as I need to and it is still ok.
I think that's why they say that the closet relationship you can compare to us and God is husband and wife. Unconditional.

2007-06-03T18:07:00.001-05:00

VERY short entry today! GO GET A HOT STONE MASSAGE! This was my Mother's Day present from Jon and Parker. It was incredible! I am so relaxed! And so looking forward to eating my Moose Tracks ice cream!

2007-06-01T14:15:00.000-05:00

I received a carbon copy of a letter today from the cardiologist to the pediatrician. The letter was discussing Parker's last apt with her. In it she mentioned that his last echo (like an ultra sound of his heart) showed mild pulmonary stenosis. This is super common to have after the Arterial Switch Operation - but if it gets severe doctors have to intervene. There are different things that can be done ranging from catheters to another surgery. It's fixable is what I am saying.
I can reason through all of this - but it just opens this flood gate of all of those emotions and feelings again. The fear. .... It almost has a taste. I remember being pregnant and thinking if I could just make it go away for even an hour. Even sleep didn't help because I would dream it. I guess I believed that after the surgery we would never have another issue again. I know that's not true. There are all kinds of little things that can be problems here and there. I guess I should have prepared better.
The pulmonary stenosis is not a huge deal, nobody be worried. It's just that when I read it, I remembered every little detail all in one second. I read it and remembered how the walls just closed in that day we found out.
We were going back in for a second ultra sound because "they did not get all of the views they needed" at the last one. I have since found out from lots of women who found out about their child's heart defect during an ultrasound that this is what they all say. However we were totally unsuspecting. The nurse looked for a long time and finally said that she was going to go get the doctor to come look...still no worries from us. Jon and I were laughing about how much money this was costing. The doctor, Dr. Sabbagauh came in and he and the nurse were talking quietly over my stomach. I heard "big hole" and "where is the aorta". I remember looking at Jon and thinking "do something!" "change it!". He was just as powerless as I was. We were totally blindsighted. I didn't even know if I should cry. How bad was this? The doctor patted my foot and I started to cry a little. When he started talking about Down Sydrome and defects I realized. He said "You are a smart woman - you know what this all means". But I didn't know.
They left us alone for over an hour while waited for a real cardiologist to come in and do an echo and give us an actual diagnosis. For an hour we just sat and cried. The room was too small. It was too hot. My clothes were too tight. There was not enough air. And at that point I did not think I could take another breath if there HAD been enough air. To say it was the worse hour of my life is an understatement. There are no words.
Finally Dr. Cuneo (still my favorite doctor even though we only saw her this once) came and got us. She told me to go use the rest room and I remember being alone in the bathroom and mouthing "PLEASE let him be ok" "PLEASE" I must have said it 50 times. I needed it. I knew I would not be ok if something happened to him. I already loved him and I already needed him. The thing is - I didn't know how much until that moment.
Dr. Cuneo had a wonderful way of telling us about Transposition of the Great Arteries. I felt so much hope after talking with her. It was like being starved for hope during that hour we were waiting. Jon and I just needed SOMETHING to grab hold of. When she gave hope to us, it was like finally getting water. I felt physically full again. I left not feeling empty. Not feeling like I was missing something. I felt like it was going to be ok.
It was such an overwhelming day.
So you can see why my guard is up. I do not want to be blindsighted again. But I don't to spend my whole life worried and on edge either. It's tough to find the balance.

2007-05-30T16:38:00.000-05:00

When I get to work in the mornings I park my car in an alley that is surrounded by houses. Today when I got out of my car I heard a man singing. I said to Parker, "someone has their radio turned up!" shaking my head because it was just 7:30. That's when I realized that it was no radio. Accross from my car is a house and in that house was a man singing at the top of his lungs IN THE SHOWER! With the window open! I wonder if he had any idea that the whole world was listening. I hope he did know but he just didn't mind. Now that would be someone to emulate.

2007-05-24T16:34:00.001-05:00

Parker meet Penny! Tomorrow night Jon, Parker and I are flying to Dallas to visit my family. I can't wait! There is something about going "home" isn't there? It's very centering for me. Tomorrow will be especially fantastic because I get to introduce my dog, Penny to my son Parker. Penny is pretty close to 500 years old. I have had her since I was in ELEMENTARY school. Well - my parent's have had her but I still claim her. It's like two worlds will collide. Old Emily meets New Emily.

When I was little I started bringing Penny to the stairs and we would sit and I would tell her everything (the poor girl). It is safe to say that Penny knows every insignificant details about the trails of my adolesent years and even into "adulthood" (if we are calling it that). She knows about the devestation of the Great Move from Madison to Tulsa, the soap opera saga of boyfriends that came in and out, you get the point I am sure...Penny grew up with me! So you can see how I can feel all tingly about introducing the two of them! I feel like having Parker now officially makes me "grown up". The drama is over and all is settled. I have found a place. (Penny and I take a sigh of relief together)

2007-05-22T11:38:00.001-05:00

Whew ok...I'm not so upset today and my apologies for those of you sickos...er..I mean people who like Hostel ;-) Today I am happy because it is going to be 85 DEGREES!! That's sounding kind of like summer don't you think?! Oh but then there are the memories of last May - walking to church - in my winter coat - cursing this city and it's noncommitting weather. I think it will be safe to say summer is here in August! Oh well - I'll take what I can get until I move back SOUTH. Today is another day for flip flops and capris so who's complaining!

2007-05-21T10:05:00.001-05:00

I am upset. I was absolutely floored yesterday when I heard that they were coming out with a second Hostel. I do not understand the obsession with violence today. And Hostel is not just violent...it goes so far beyond violence that it is actually literally sickening to me. Someone has the imagination to THINK of these things. Ok, I have never seen the movie, but I have seen previews and traliers for it and it truly disturbs me. I mean it really really bothers me that there are people out there who call this ENTERTAINMENT. Acting or not it is gross.
For those who don't know, the movie is about people who are backpacking through Europe and decide to stay at this Hostel. Well, it actually is a place of torture and business men pay money to go in and act out their fantisies on the people who are being held capture there. The movie was so gruesome that during some of the scenes only the director could be in the room with the actors. Horrible.
So the second movie coming out is worse. It is going to be about a place where women are lured and tortured...naturally. And torture is not even an accurate word for what I saw in the preview for this movie.
Does this not bother anyone else? Where is it going to end? Because the only worse thing I can think of is a movie about a place that tortures kids...is that what's next? What do people need to see to be satisfied? When will people say "enough already"? Do we need live shows?
I do not understand why everyone is ok that the guy who created this...who thought of all this out walking around - hanging out with us like he is normal. It is NOT normal to think about this stuff. It is NOT ok.
"It's a movie" "It's acting" I keep hearing but that is so unacceptable to me. There are so many people who say that we as a society are not valuing the life of the unborn. And I agree - that is a HUGE problem (and another post) but isn't it true to say that as a society we don't value life - at all? I mean, it starts from there. And this movie is proof.
I am not one of those people who believe that if people see something violent then they will do it - sick people will be sick people with or without violence on TV. But what has happened to us since the days when Carrie was violent enough? When Children of the Corn was horrifying? Clearly the problem is that we have become desensitived to it. What used to be violent is not anymore. So what can I do? What can I do so that Parker does not buy into it? What things should Parker not be allowed to see so that he does not think Hostel is entertaining? I want for him to be disturbed by this and not think it's cool. I would not consider myself a good parent if he went into the world thinking it was just another movie.

2007-05-16T22:10:00.000-05:00

I am always taken back by simple things in nature since I moved to the city. I remember one night last summer Jon and I were outside Jon's grandfather's house in the subburbs and we stopped dead in our tracks when we looked up and saw...stars! It is too bright here for stars. One time I saw a butterfly outside my window...we live on the 33rd floor! That is really high for a butterfly I think but I appreciated it. Today I was driving home from work and a thunderstorm was coming. I forgot how green the trees and grass look before rain. It absolutely took my breath away. I tried desperately to take pictures of it on my cell phone while I was driving - but that didn't feel safe.

2007-05-13T22:08:00.000-05:00

Happy Mother's Day to my mother who is an amazing woman and my best friend. I love you! Happy Mother's Day to JoAnn. Thank you for raising Jon! Job incredibly well done! I am trying desperately to learn from you both. Happy Mother's Day to ALL mothers everywhere for that matter!
Thanks go out to Jon for an incredible Mother's Day! Not only did he throw together a perfectly wonderful day of brunching, walking, and shopping but he ultimately gave me the best gift anyone has ever given me in my life. No lie folks - this gift could never be out done. Jon gave me my son! Sure he didn't "mean" to at the time but here we are regardless. Jon has brought true love into my life. I mean the kind of love that is defined by bringing out emotions and feelings that run deeper than anything ever depicted in even the most romantic of romances Hollywood ever created - the feeling you get when you stand hand in hand at the check out line at the grocery store and smile when you see the total - $97.28! Yes!! It's under $100! The kind of feeling you get when the laundry has piled up so high that it is actually funny. The kind of feeling you get when you swear if you have to pick up his shoes one more time you'll leave but you realize that if that is the worst part of your day you are doing pretty darn good. True love. The love that comes from day in and day out - giving and taking - the best of times and worst times - LIFE.
I love where Jon has taken my life. The direction my life has taken since I married him and ran off to Chicago - freezing cold place that it is - is absolutely beyond anything even I could ever have imagined.
I have celebrated Parker every minute of every day that I knew he was mine. I have celebrated my roll as a mother privately with him in every action I have taken in the last year. So today, on Mother's Day, I am celebrating my husband who has taken me to this place. My husband who has loved me into motherhood.

2007-05-12T15:30:00.000-05:00

Jon is at school. Parker is asleep. The apartment is clean. Laundry is done. I have an idea about dinner tonight. There is nothing that I have to be doing :-) This little moment comes so rarely. What is interesting is that no matter how old I get, how many responsibilities I have, how many "to do's" are on my "to do" list...some things never change. I am sitting on my couch in old jeans and old t shirt eating a snack and watching a Lifetime movie. Which is exactly where you would have found me five years ago on Saturday with nothing to do.

2007-05-09T21:55:00.000-05:00

How do you say thank you to the men responsible for saving your sons life? Here is my attempt:

Dear Doctor Mavroudis and Doctor Backer,
I have spent the weeks since Parker's surgery trying to envision this thank you letter. Even now as I am writing I am completely lost for words. Weeks keep rolling by while my family moves further and further away from the reality of your world. With every day that goes by I spend less time remembering when we found ourselves thrown into the middle of it. I look at Parker now and just revel in his baby-ness and almost forget his beginning. I almost forget...but then I watch him take a deep breath and remember how terrifying the moment was when they took the breathing tube out and his little body laid limp until he took that breath on his own. I walk in and see him sleeping and remember the first night he went to sleep with nothing taped to his face - he was beautiful. I see my husband lift him into the air while he laughs and remember how careful and meticulous we used to be when moving him because he was connected to so many tubes and wires. No matter how many weeks, months or years go by, I will never forget. I will never forget how strong Parker was and I will never forget who is responsible for saving my sons life.
I spent the last twenty weeks of my pregnancy living with the fear that Parker would not be ok. I used to dream, every night, of the moment you came out to tell me the surgery was over. Sometimes Parker lived and sometimes he didn't. I spent every single day knowing that there was a 3% chance my son would not come home. At that point it 3% is the same as 95%. The fear is absolutely comsuming. All of my energy was spent in making myself get up each day and pretend to have faith.
It is amazing to live without that fear now. The life we live is amazing. We are almost whole again. We have almost moved on.
Sometimes late at night when the busy day can't distract me - I am there again. I hear the beeping monitors, the nurses whispering quietly outside our room - trying to give us space so we can pretend that we have some control over our son, all of the wires - I will never get the image out of my mind, the other children you see out of the corner of your eye as you walk down the hall - some of the stories still haunt me and I wonder if their families were as lucky as ours.
I remember so well the morning of surgery. We were in the big room with all of the empty beds lined up and you, Doctor Mavroudis came in. You were wearing your scrubs and hat. It was such a surrel moment. I wanted to scream to you that this baby was different than any other baby you had ever operated on - that I loved him more than any mother has ever loved their child and you really really really had to do your best here. I knew I couldn't do that. I wondered what you ate for breakfast that morning - I wondered if you were worried or if this was routine to you - I wondered if you knew the power you had. Your hands...YOUR hands would keep my son alive ... or not. You commented that he was a good size. You whispered to some people in the corner and then as quickly as you came - you left and they took Parker with you.
My family sat in the waiting room. A mother was crying because her daughter was having tubes put in her ears. She was so scared and worried. I did not have it in me to tell her that you were holding my sons heart in your hands. But you were - my family just sat there while you actually moved his aorta and pulmonary artery - while you actually moved his cornary arteries and reattached it all.
When it was over, Doctor Mavroudis, you came out and told us that everything was ok and that the surgery went as expected. I could not believe that was it - weeks and weeks of worrying and in 5 hours everything was "as expected". I asked you three times if everything was ok in as many ways as possible trying to let it sink in that he really was going to get to come home with me one day. You finally said "I can not tell you any other way - he is fine". It was not that simple to me. I said "thank you" and thought about how insuffient that was. What do you say in that situation? There are not enough words. There is not enough sincerity and there is not enough gratitude.
It has been over three months since that day. We are probably a distant memory to you. You see so many babies and children with broken hearts. Our day was just another day in the office for you. It wasn't for us. We are forever changed. We will never look at the world the same way again. I will never look at Parker or any other baby the same again. We are smarter, tougher, sadder, but more joyful because of what we know now. Our son's heart is beating and beating every minute - he is healthy and he is alive. Each beat his heart makes is a testament to your skill and knowledge - and to our gratitude. Thank you - thank you - thank you a thousand times.

The Night I Fell In Love

2007-05-06T07:25:00.000-05:00

"Alright I'm up I'm up" Every morning I give in to the little voice pleading for someone to get out of bed and come entertain him. No matter how tired I am or how much I just want to roll over and ignore the call, by the time I make my way over to his crib and see his huge smile when he realize he has won, it is worth it.
This morning I was thinking about our last night in the hospital. Jon had gone back home already and Parker and I had FINALLY been moved to the 5th Floor (the step down floor...the "before you go home" floor). It was amazing. Parker had one lone IV still and was so easy to move. There was not a nurse standing 5 feet away watching me. I was actually responsible for my son for the first time. My bed was right next to his. I could reach my hand up and touch him. I remember bringing him out of his bed and letting him lay in my lap while I watched You've Got Mail and checked my email. Nothing had ever been this casual before.
In the other rooms in order to pick him up I had to sit in the strait back chair (not comfortable) with a pillow on my lap to help support his cords and tubes and I almost always had to have some kind of help getting him to me and putting him down. If I did it alone, the nurse would watch suspiciously making sure I wasn't going to hurt him. Everything was out of my control. They came in and woke him up, told me when to feed him, I could HELP bathe him, HELP change his diaper, HELP give his medicine...but all along I could not wait until he was really mine to take care of. I was so ready.
That last night was truly amazing. I fell in love that night and I think Parker did too. I think it was the first time that I was different than one of his nurses. We sat for hours cuddling and staring at each other until we just fell asleep. I remember thinking how incredibly perfect he was (a feeling I did not think I would have when I found out about his heart). I remember thinking that we were this little twosome who would always be together....you know, until he's 10 and doesn't want to hug me anymore :-) It was wonderful. We've spent every night together since :-)

Hey World, Here I Am!

2007-05-05T17:42:00.000-05:00

Ok so this is a poem I used to love when I was like 12, but it is appropriate here I think

I said to the World, "I've arrived.
I, have come at last!"
The World paid no attention.
I said to the World "Hey World, here I am!
Don't you understand? It's ME"
The World ignored me.
I took myself off into a corner.
"Guess what?" I whispered. "I made it
You know . . . ME"
Myself bellowed "YAAAAY!!!!!"
The World turned.
"What did you say?" said the World.
I paid no attention.
Afer all, I gave it its chance.
It's not my fault that it missed me.

I think it's funny - always have. Anyway, so this is my attempt at this so called "blogging" thing. You will have to bear with me as I am sure this is not my thing. It's not that I don't have plenty to say, I do...it's just that hand writing it in journals has worked just fine for years and years. I have been told that this is the way to go though...you know...all the cool kids are doing it sort of a thing. So this is my shot - don't be too hard on me :-)