Prayers today for baby Elijah

Baby Elijah is having open heart surgery today - send up some prayers for him and his family - most of us unfortunately know how hard it is to hand over your little one.
http://www.babyporta.blogspot.com/

Cute little sayings

Eric and I had a very relaxing and pampering weekend in Brown Co. and I highly recommened The Manor at Tabor Hill to anyone that would be there visiting. It was beautiful weather, we could not have picked a better weekend. I did okay during the day but, once Eric went to sleep I really started missing Evan and other than enjoying alone time with Eric this weekend taught me that I'm a very lucky person to have been chosen to be Evan's Mommy and that although he is a rowdy and loud 3 year old that I need to treasure all of this and slow down a bit and remember these moments with him. I called and checked on him Sat. night and my Mom asked if he wanted to talk to me, he said no but that it was getting dark and that he was ready to go home, kept telling my Mom that it's dark out and I'm supposed to be home when it's dark in my bed. He started to cry and that made me sad... Mom said that when they went to bed she told him that we let him come stay with her because my Dad was out of town and that she would have been lonely and Evan said, "Awwhhh... Mamaw, that's what friends are for." She said he snuggled in and went to sleep after that, isn't that sweet...

Brown County IN. and Golf Scramble planning

Well, for the first time since Evan's birth, Eric and I are going away for the weekend just the two of us celebrating our 7th anniversary. We have chosen Manor at Tabor Hill Bed & Breakfast in Brown Co. Indiana - http://www.manorattaborhill.com/guestrooms.shtml - the master suite with in room massages for both of us and champagne before bed and a 4 course breakfast the next morning. I'm looking forward to some alone time and just slowing down a bit. There is lots of shopping to be done in Brown County and outlet malls on the way home so, I'll have to be careful to not go overboard. My parents will be entertaining Evan for the weekend and he will probably not even notice Mommy and Daddy are gone - I for one will definately miss him - hence the reason Mommy and Daddy have never left him overnight before now. I hoping although I will miss him that I will be able to enjoy this weekend away and also hope this is just what Eric and I need to re-connect.

Tomorrow AHA is hosting a kick-off party at the Louisville Zoo for top-walkers from 2006 and our 'Team Brave Hearts' will be in attendance. Evan is so looking forward to seeing the animals and playing in their new water park with his heart buddies. We are just starting to get things moving for our 2nd annual 'Team Brave Hearts' Golf Scramble which will be held at Glenmary Country Club on Aug. 12th. I have attached the flyer we are putting up for that. I'm so excited about our team this year and how many CHD families have joined us - this is such an amazing group to be a part of.

Cath. Results

I'm going to try to explain Monday's cath. results in the best way I know how - I'm still a little unsure myself and have a meeting with Evan's cardio today to get a better understanding. Evan was a real trooper even though he realized the minute we pulled into the parking garage where we were and was a very brave little boy the whole day. Once sedated the cardio came out and told us that today could be just exploratory, that even though the Vent. Perfusion Scan showed that the pressures were off between the left and right lung that they wouldn't know until they got in there what was really going on. They came out about 2 hours later and called us in the discussion room - aka the room that makes me feel like I could run screaming - and said that there were no benefits to doing another stent right now - that the pressures were really the same as they were post-stent last April and that the right pulmonary artery was narrowed now as well but that was actually helping push blood flow through the very narrowed left pulmonary artery. Then the blow - Evan will require another open heart surgery to place a conduit. I was totally stunned and have lived in a nice little world of cath. procedures only since he was 9 months old. I said I understood what he was saying but really I'm not sure - I believe that his valve is leaking more and both right and left pulmonary arteries are narrowed which makes the conduit necessary to replace them and the valve. His cardio did say that Evan is in excellent shape right now and they hope to put this off for as long as they can - even mentioning 10 yrs. If they could wait this long it is possible that only 1 surgery would be needed and they could place an adult size conduit and valve in - all in Evan's timing I suppose. They did start him back on Digoxin. He urged me to treat Evan as a normal child. We will continue our appt.'s with the cardio and then once a year do a Vent. Perfusion Scan and a cath. to see how things are going. Evan woke up from the cath. in recovery and the nurses came out and said he woke up and said, "My name is Evan, I'm 3 and I want my Mommy and Daddy" and continued to try to get up and walk out. They said they had to keep the popsicles coming to keep him still. He's not said a word about it since we left the hospital and is already back to his normal self. Me - I'm struggling with the thought of having to go through this again but am wondering if I'm ever going to learn the lesson of "Cast all your cares upon him, lay all of your burdens down at his feet and anytime I don't know what to do, cast all my cares upon him."

Date for the cath

We just got the call from Evan's Dr. and the cath. will be on May 25th. That is the day Eric and I would have left on our cruise had I not cancelled it - weird huh - instead of the Bahamas we'll be in Kosair's ICU.

ARGH.... the Dr. just called and b/c of scheduling the cath. has been changed to Monday, April 30th.

Rough Draft of AHA Poster

They sent us a copy of the rough draft of the poster they are going to use from the photo shoot last week. Evan is second from left and I couldn't help but laugh when I opened up the attachment - it's hard to take a good picture of one 3 yr. old, besides four. They did good.
We are getting ready for the 2nd Annual AHA Team Brave Hearts Golf Scramble and the planning is just beginning. The scramble will be on August 12th and the walk is on August 25th. The next few months will be very busy but, I find great fulfillment in being a part of this wonderful team and for the lifelong friendships we have made. More to come on that.
No word from Dr. McOmber as to when Dr. Recto's team will be available for the cath. - I'm sure we will hear soon. Sometimes the waiting is hard but sometimes getting a date is hard too - if that makes sense. The unknown is stressful but, when there is a date there is always worry to fill the spot. I've always been an extremely anxious person (probably an understatement) and for the 1st time in my life I'm seeking help to get ahold of that. I'm trying really hard.... I do NOT want to waste life away worrying. It's really hard for me. Maybe I'll go into more details at a later date but, just say a prayer for me.

Update from Dr. McOmber

We heard from Dr. McOmber on Monday and unfortunately he believes it is time to do another balloon angioplasty to expand the stent. He is contacting Dr. Recto, who did the stent implementation last April to see when he has an opening - this took over 2 months last time so, probably sometime this summer. Although this is not the news we were hoping for we are grateful that this can be done and Dr. McOmber said that he doesn't see any reason that they won't be able to fix this in the cath. lab the same as last time. I'll update when we have a date. I think most of you heart parents know that although I'm grateful and know that things could be worse, my heart is still breaking at what our Little Braveheart has to endure.

Also, American Heart Association called yesterday and they want our heartwalk "Team Brave Hearts" to be in a photo shoot next Thursday for their banners, posters and website! I'm so excited - I'll post the pic's when I get them!

Promised Pic's - Evan's 3rd B-Day

Some of my favorites

Evan's Beloved Juice Bottle

UofL Dancethon to Benefit Kosair Childrens Hospital

Vent. Scan Results

Evan's Vent. Scan went better than it ever has last Thursday. He knew the minute we pulled into the parking garage where we were and began asking the questions, "Am I'm going to get a shot", "Will they squirt stuff in my nose?" The older he gets the more my heart aches at his little questions and eyes, he asked me, "Mommy, why do you and Daddy bring me here?" Oh little braveheart, if I could keep from bringing you here I would but how do you explain??? I just told him that to keep well sometimes you have to have tests and see doctors to stay well. He perked up once we got inside and sang all sorts of songs for the nurses - he LOVES to sing - don't know where he got that from *wink*. He use to love Bear and the Big Blue house when he was little and we found a dvd of it that has all to do with doctors, appointments, shots and hospitals way back. Weird but Evan found that dvd and asked to watch it on Wed. night and he learned a song, "just say ouch, say it now, just say ouch and it's over" he sang that through tears during his IV, which by the way amazingly the nurse got with one stick! I could have kissed her! When the nurses came in to give him the Versed up the nose he said, "Stop right there, I do not like doctors, I do NOT like doctors, I DO NOT LIKE DOCTORS!" Poor thing - he just wanted to make sure they knew. The actual test only takes about 15-20 min. and about 10 min. into it Evan's blood pressure dropped to 104/33 - they believe he just had a reaction to the meds so they turned it off and it came back up. They used Dex. to sedate him they gave him Versed up the nose and a shot of it before they started the Dex. and I remember him having a blood pressure drop after his surgery when they used Versed, so I'm going to say something to the pc. Since they turned the sedation off before the test was over Evan woke up almost as soon as the test was over and we went home within the half hour. Usually Evan is pretty "drunk" and sleepy for the rest of the day, I'm not sure if they used less meds or if turning it off early made a difference but Evan acted like nothing had happened. He begged to ride his bike when we got home - they told us he would sleep for 3-8 hours. I kept trying to keep him quiet and watch tv but it was obvious that he was fine - running, jumping and so we just quit trying - I was calling giving grandparents the news of the day and they were like, "what's Evan doing?" - "oh just riding his bike" I could not believe it!
Evan's pc in on vacation but another pc in his office called and said that the pressure have dropped 5% since the stent - after the stent the right side was taking 71% of the pressure and the right side 29% and now it is 76% to the right and 24% to the left. The pc that called said that he is not concerned with these results and that he would turn them over to Dr. McOmber when he returns and that Dr. McOmber will be calling to let us know. I'm not sure when it will be time for the cath. again as the left side before the stent was only taking 15% of the pressure - so it has been worse - how far does it drop before the stent needs to be expanded? I'm not sure. My anxiety and worry tends to get the best of me and I hate that I let my worries steal my joy and I'm trying really hard to live for today - it's so hard. After the results came in I called and cancelled a cruise that my husband and I had scheduled for our anniversary - I just can't - I dont' know who we were kidding that we could leave him for a week when we have never even left him overnight. I hope that I didn't disappoint Eric too much, I just couldn't go through with it.

Bye Bye Juice

I can't believe I'm sharing this BUT... here goes. Evan is very attached to his "juice" (4 oz. Avent Bottle with water in it) he asks for it every nap time and bedtime also if he is scared or upset. He gave up the milk bottle pretty easily and on time but loved I mean LOVED his "juice." I talked to his pedi. about it and his pc - and everytime they would say that we needed to get him off of it he would have a procedure coming up and they would say to keep letting him have it. Like last April we were going to take it away and then the pc said to keep letting him have it as he knew that is the ONLY thing that calms him down and wanted something to calm him after his cath. So.... it's almost one year later and yeah, he still loves his "juice." I had decided that we would throw away all extra's so we wouldn't be tempted and just let the current "juice" wear out. Last Thursday I went to pick Evan up after work and my mom just stood there - looking very tired holding the "juice" with the nipple hanging by a thread and Evan crying at her feet pitifully. He said so sadly, "Mommy look, look at what happened to my juice." I felt so sad for him, Mom later told me she thought of going to get a new one but knew I would be able to tell. He has gotten much enjoyment from that little bottle - I'm putting a slide show together to prove that he was in LOVE with it. Anyway, no turning back huh? That night at bedtime I got out all his usual sippy cups and reminded him that "juice" was broke and that he needed to pick something else out to drink "juice" aka water in (we had tried this before but, he did not see the evidence and did not go for it). He picked out a Nuby cup from Wal-mart and although he has talked about his broke "juice" he has not asked for it since! I'm amazed and cannot believe that we are actually through with "juice!"
Evan's Vent. Perf. Scan is next Thur., the 22nd. Pray for a good outcome and some more time before another procedure needs to be done. Mostly for wisdom of the Dr.'s, whom we love, and their finding the right time that's needed for Evan to expand the stent and repair the leaky valve. Pray for us too - as this will be the first procedure without "juice" LOL.

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!

Investigation

On Thur. night I signed on to my computer while Evan was taking a bath and went through our digital pic's since Christmas and picked a few to post. I didn't get to finish so, I decided on Fri. night I would make time to post some new pic's. Back to Thur. - when we got home there was a notice from our electric company that there would be electrical work done in our neighborhood on Fri. and that they were sorry for the inconvienance - no big deal - we would be at work anyway. Eric and I trade off responsibilities of bath and bed so technically it was my night for bath on Fri. but, I explained to him about the lack on pic's on the blog and he happily swapped me nights so, off to the office I went to post some pic's. I hit the button and nothing - just blinking - immediately my mind thought back to the electrical work notice and called my sister-in-law/computer repair woman and she gave me some tips to try but after telling her about the electrical work she said that it sounded like my power supply and board were blown by a power surge (computer was on a power surge protector) and to contact the electrical company. I called this morning and they said that there was a problem when trying to turn the electrical back on on Friday and that they were going to send an "investigator" to take a look at the computer. Let's keep our fingers crossed that they replace it and also that our harddrive is saved as the pictures we've taken since Christmas are not backed up on CD! Until then I'm restricted to checking on blog's and email during break and lunch at work.

Train Wreck Causes Evacuation

Things have been crazy around here - there was a huge train wreck in Shepherdsville KY which is only about 5 miles from my work - less than 3 miles from my parents home - very close. It happened Tue. morning after I had dropped Evan off and gotten to work. The area had to be evacuated - because of winds sending the toxic fumes the opposite direction we were all able to stay put. However, I was unable to get home as the main interstate had to be shut down for 12 hours and all traffic coming in and out of Louisville was forced to take 2 roads and there was a 4 hour delay - so my usual 1/2 hr. commute would have been 4 1/2 hrs. long so we camped out at my parents and watched the TV for possible evacuation orders. The train wreckage is still burning this morning at what they call a controlled burn, as it is a gas and they are unable to just put it out, it has to burn out. There are a lot of efforts going on to speed up the process and they are saying that sometime today it should be through burning. It was unbelievable to see - the plume of smoke is still billowing into the air and everyone is staying indoors as much as possible as the fumes are toxic and burn your eyes. On Tuesday night the people who had exposure and needed hospital treatment were being undressed in a tent outside of the hospital and then hosed down and put into paper gowns before being allowed into the hospital - just unbelievable! Things seem to be better today - so maybe the people who are in shelters will be allowed to go home - although they say some people might actually lose their homes because of the toxins their homes were exposed to. On a brighter note - the weather is doing what it is supposed to here in the Bluegrass the last few days - it has turned cold! They are forcasting snow for the weekend and I for one am looking forward to it!
http://www.whas11.com/topstories/stories/011607whasbhTopTrainCrash.4658e9f1.html
http://www.wave3.com/Global/story.asp?S=5944082

Catch Up

Sorry I haven't posted in while - I've kept up with everyone else but when I logged in a few times to post I stared at the screen and logged out - why post when nothing comes to mind??? My brother and I agree that we have the New Years blah's. You know - Christmas is over, the running has ended, now what? Believe me I have plenty to do, spring cleaning, etc. etc. but, I've just been in a rut.
One thing I am excited about is Evan's Birthday party that is coming up. We are having it at The Playground http://www.theplaygroundlouisville.com/ . I think he will be surprised and I'm in love with the, they clean up the mess part! I found this cute t-shirt at Target that is a black short sleeve with attached white long sleeve underneath that has a stick man on it that says, "I Do All My Own Stunts" LOL. You usually dress your little one up for their birthday but for The Playground I think this is more fitting and definately more "Evan".
Not sure if you all have heard about us losing our football coach - UofL. This song, "Bad Day Bobby" was on the radio today regarding that and it is hilarious : P .
http://www.themaxfm.com/Article.asp?PT=Lambert+and+Lindsey+Blog&id=330770