Another week

I always dread Sunday nights and going back to work on Monday. I always become a crying mess as we lay down to go to bed because I know I'm starting another long week full of lots of questions from people who just dont understand. I hate being away from Adam, I feel so much stronger when hes with me. When I'm at work I dont have him to hold my hand while I explain our sons tragic situation to everyone who asks. I get so tired of people telling me everything happens for a reason and everything will work out because the reality of it is that everything isn't ok and I feel like I'm dieing inside. When Adam is with me he understands how I feel and can support me and answer all the questions for me, I feel like I don't have to be strong when he's with me because he is there to be strong for me. Sorry to be a Debbie Downer I just hate Sunday nights and it feels good to get it off my chest.

On another note while I sit here in front of the computer Parker is trying to push himself out of my belly button!  He is getting to be such a strong little guy and kicks me all day and all night long. Some of his kicks and jabs are so strong they take my breath away, I cant imagine what it will feel like when he gets bigger. My pregnancy is still going well as it has been throughout the whole thing, its so hard to believe that I'm already 26 weeks and 4 days. I cant imagine how my belly can grow any larger as its already getting uncomfortable to do much of anything.

Well we are off to lay in bed and watch some tv before we fall asleep Good Night.

Went to my regular checkup today. I am measuring 2 weeks ahead of normal so I'm hoping for little Parker to be a big guy. The bigger he is the better for the surgery. Heard his little heartbeat, it sounded so strong and it breaks my heart. I know it might not make sense to anyone else but hearing his heart beat is the worst part of our appointments. It always makes me cry just knowing that its ok now but once he is born then it will no longer work like it should. It makes me wanna keep him inside of me forever just so he is safe.

The dr also told us today that she has a friend who is also a nurse in Joplin and she has a little boy that is 2 or 3 years old and has HLHS. She asked if it would be ok to give our phone number to her so that she could contact us about any questions or concerns that we may have for someone that has been down the road were getting ready to travel. I was so thrilled to know that there is someone else in our area that has been through the same thing and I cant wait for her to contact us.

Not really much more to update the appointment was very uneventful. We go back in 3 weeks and they will have information on the St. Louis hospital for us and let us know when we will be traveling up there.

Good Night

Another beautiful poem

                                           When I Became a Heart Mother.....

One day my world came crashing down,

I'll never be the same.

They told me that my child was sick...

I thought, am I to blame?

I don't think I can handle this...

I'm really not that strong.

It seemed my heart was breaking...

As, I'd loved him for so long.

I will not give up on this child...despite your best "advice".

I will give my child a chance...No matter what the price.

And I will learn all that I need...to help my child to thrive.

I'll even use that feeding tube...

My child will survive!

Will he require therapy?

What if he can't gain weight?

Alright God I can do this...I will not curse our fate.

The feeding pump beeps, at 3:00 a.m.

It serves as my reminder...

How many parents would welcome that sound?

Tomorrow Lord, I will be kinder.

Another angel earns their wings...

and I run to my sleeping child's bed...

I watch him then, for quite awhile...

Bend down and kiss his head

Then I cry for the parents whose lives have been broken,

And I look to God wondering why?

Oh Lord, I just can't know your ways...

No matter how I try.

And yet, I trust You to hold his life,

And guide us through each day

My mind says savor each moment he's here...

But my heart whispers,

"Please let him stay".

From... pacing the surgical waiting room...

to sitting by his hospital bed...

From... wishing for a good night's sleep...to learning every med...

From wondering will he be alright?

To watching him reach out his hands.

With every smile, my heart just melts.. despite life's harsh demands

For all who see that faded line...I look to them and smile...

You see, my child is loved so much...

I would face any trial.

That same scar I trace with my finger...

It's the door to his beautiful heart

I never guessed how much I'd love him...

Just as YOU loved him right from the start

A heart mom is always a heart mom...

Now wise beyond her years

And for those who have angels in heaven...

Our hearts share in all of your tears.

Everyday I will strive to remember...

You chose me for him and no other

And I will embrace that beautiful day...

When I became a "heart mother".

~Stephanie Husted

Temporary Home

We made the trip to Springfield to the pediatric cardiologist today Dr Alan Tong. He was amazing I really liked him and look forward to my son meeting him someday. He didnt really give us anymore info that we didnt already know (weve done tons of research) but it was nice to know that I will trust him for the care of my sons little heart when the time comes. He has other patients with HLHS and thats also comforting to know that these children really do have a chance and that there is a light at the end of this very dark tunnel.

He recommended us to St. Louis childrens hospital over Kansas City because they have a better success rate with this type of open heart surgeries. We were hoping to be in Kansas City because it is a little closer to home but whatever is better for our son is what is most important. So it looks like St. Louis will be our temporary home for HOPEFULLY just a short amount of time. Dr. Tong told us that generally these babies will be in the hospital for a month and that most of the time feeding issues are what keep them in the hospital rather than complications from the heart surgery.

We go back to my regular dr on Friday and they will start things rolling on setting up an appt. with the drs in St. Louis. We will be making a trip up there before the delivery to tour the NICU and be meeting with all of the drs and nurses. Ive felt so overwhelmed today thinking about being away from home for such an extended period of time. I hate the thought of not having the comfort of my own house, my own bed, showers, toilets the list goes on and on. I dont want a temporary home, I want my home and my baby and everything to be ok.

I will hopefully know more once I go to my dr on Friday. Im ready to get my appts set up in St. Louis so that we can meet with all of the drs and nurses that will be caring for our son. Its been a long day and Im so mentally exhausted Im going to bed Good night!

A beautiful poem

I found this poem on another site written by a father I thought it was beautiful

My Son

My Son was born on a warm summer’s day
With me pacing the floor in a proud dad’s normal way
Not knowing of challenges that were still yet to come
That would change my life in more ways than one

Holding my son for the first time I cried
Thinking of all of the years that his mommy and I tried
Still not knowing how sick and tired he would be
After his heart was wearing out even before week three

We were going home and it was just a day away
When something happened that almost ended our day
The doctor came in and showed us his heart
The news was so shocking it tore my life apart

The shock so horrible and the news so bad
My life was now ending I was wishing that it had
Our journey had begun one we didn’t want to start
How a boy as sweet as him could be born with half a heart

It must be a bad dream and it can’t possibly be fair
For a moment life stood still as we looked with a blank stare
I was numb all over and my tears dried on my face
Our doctor had informed us to get ready for the race

It would take our emotions from valleys to peaks
One day we are happy to the next no one speaks
We prayed God would show David mercy and grace
As we sat down to ponder with a look of fear on our face

We made it through the Norwood with help from up above
God surrounded us with people that we would grow to love
Those people were doctors and nurses and family and such
That showed our family they cared with the love in their touch

After a month of a struggle for our little guy
We were allowed to take him home with a gleam in his eye
I remember like it was yesterday as I welled up with tears
My eyes kept filling up it seemed like for years

Happiness filled the room as we started to pack
Still not knowing the future or what to expect
I gained my composure and prepared to go home
Not knowing it had changed me and my life yet to come

For you see spreading awareness has become my whole life
Not wanting a parent to have to suffer this strife
We have been through so much I still think we have won
Because everyday I wake up I still have MY SON

Introduction

The purpose of this blog is to keep our family and friends updated on our son, our feelings and emotions, and our journey as it progresses. Thanks for all of the support that you have all provided up to this point it truly means so much. I know that without you guys we wouldn't of made it this far.

Our next appt. is Tuesday, we will be seeing the pediatric cardiologist in Springfield and hope to learn more about the current diagnosis. He will be doing a detailed ultrasound of the babies heart and then we will talk with him about which hospital he thinks will be best for us and our unborn son. We are currently looking into either Kansas City or St. Louis not sure which one yet. Its going to be a long hard road but worth every second once we get to hold him for the first time. I will keep everyone updated as more information becomes available to us.

There isn't alot to update on right now except that after so much going back and forth we have FINALLY named our little boy. Since Adam love Jaxson so much we have decided to give our son 2 middle names. The newest member of the Everett family is...Parker Jaxon-Phoenix. As if the little guy doesn't have enough problems we give him a name that is complicated as well! I guess as he grows he can decide which middle name he prefers (I secretly know he will choose Phoenix).

Well its about game time and I need to feed this little monster inside of me! Little Parker is going to need some energy for all the cheering he is about to do, I already feel him stretching, kicking and jumping in preparation for the Chiefs next win here in a few hours!!!