Updates on Yesterday

Well, our big day is over and I'm thankful that for the most part everything is well. My 2nd cousin's baby - Evelynn had her cath. and did well - they are scheduling her surgery within the next 2 weeks and we should know the exact date by Monday. My cousin, Eric, had his surgery and they removed a 2 lb. cancerous tumor that was contained in his right kidney - the doctor said the cancer had not spread and that he believes he will NOT require chemo or radiation but will know for sure next week when the results come back from pathology.

Evan's appointment went well. Dr. McOmber said that if someone handed him the EKG he would not think it was for a person with a CHD that had repair OHS for TOF - perfectly normal! He said that Evan looks and sounds amazing BUT that although he can see the blood flow in the left pulmonary artery that the only way to be sure the pressure's are still acceptable since the stent implementation last April is to do another Ventilation Perfusion Scan - ARGH! He said that they have to keep an eye on this in order to keep Evan well that, this is not looking for somthing wrong but to just to maintain they will have to check the pressures every so often. He said that if this Vent. Perf. Scan shows the same results as last time (I'll have to go back and look but I think it was 71% to the right, 29% to the left after the stent, pre-stent 85%-r and 15%-l) than maybe we can just check it once a year. If the results are not as good as the scan they did last July than that would mean back to the cath. lab to widen the stent some more. So, all in all it is really good news I just hate that they will have to put him to sleep for this test and I can only imagine knowing how last time went how upset Evan was, that when he realizes where we are and what is happening he will lose it. He is older and he asks lots of questions to which we will have to be truthful with him about - he will be so upset about getting an IV and it's so hard to watch how he fights the sedation. After such a long day yesterday and my emotions being on edge I sat down to watch my favorite show, Grey's Anatomy, and man did I let loose - I cried and cried and cried. The Vent. Perf. Scan will be scheduled on Mon. so hopefully we can do this soon and go on the once a year scan.

Big Day Tomorrow

Tomorrow is a big day for my family. First of all Evan has a cardio checkup tomorrow afternoon - we are expecting good news as things have been going well but, you know how that goes. Secondly my 2nd cousin's baby - Evelynn - was born with a CHD and is having a cath. done tomorrow - she is not thriving - weighs 9 lbs. and is 5 months old and they are expecting her surgery to be very soon. Lastly another cousin of mine - Eric - is the same age as me and is having his kidney removed tomorrow after a growth has been found but is contained in his kidney - we will not know more until the kidney is removed. We are in the process of getting our pictures off the old computer and purchasing a new one but are doing without in the meantime in hopes to find a good deal (except for limited computer use at work). I promise to post some pic's as soon as I can.

Beautiful CHD Awareness Week Poem

Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.

Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.

Somewhere...someplace...today...
A child's growing fast...
Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...
Somewhere...someplace..today...
Her child seems so strong.

Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
Somewhere...someplace...today...
A family says goodbye...

Somewhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
Make time to tell someone you know...
"I've been changed by a heart defect".

Author - Stephanie Husted

Happy Birthday Evan!

Three years ago today we were oblivious, oblivious to parenthood, to CHD's, to raising a boy, to the Love we would could only imagine this miracle would bring us. I've told his birth story before so I won't get into that but, I could have never imagined the Love I would feel for my son - I knew I would Love him but it's so much deeper than I can explain. What did we do before we had him??? What in the world would we do without him??? He fills our days with smiles and sighs (what in the world will this boy do next!) Tomorrow Evan will be 3 yrs. old - my time flies - it doesn't seem possible that he could already be 3 and starting preschool in the Fall, sniff sniff. He's been asking me to make up stories to tell him at night and they usually involve Kings, Knights and Dragons that learn to share (he's a bit selfish) but a few nights ago I told him the story of how God gave me and Daddy a miracle and we named him Evan. Last night he asked me to tell him the "Miracle Story" so I did and after story time we said our prayers and Evan prayed, "Dear God thank for the bestest party ever and for the miracle named Evan" LOL. I just said, "Yes, thank you God for the miracle named Evan." I'm still without a computer the "investigator" hasn't come out to take a look yet. I will be posting lots and lots of pictures when I am finally up and running again. Evan's b-day party was a huge success. Despite the snow we had a good turn-out of 9 kids and they all played until they could play no longer - it was so much fun, "the bestest party ever." I wish I could make this time go a little slower - I'm sure that next year I'll be saying again how time flies!