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Topic: Ugh! I'm so stupid! Heart surgery...   
03-22-2006 03:19 AM
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tsmith  
Senior Member

Location: Festus, MO
Registered: Mar 2005
Posts: 383
Last visit: 03-24-2006

Unhappy

I'm ranting. I know it. It's late- I don't know what else to do but write on here. Dang it, I've tried so hard to be cool and collected... I've barely mentioned Timothy's heart surgery because I THOUGHT I was taking it in stride... I am sorry because I know it could be worse, but I DID NOT EXPECT THIS FEAR!!! I feel like a loser with a big capital "L" on my forehead. Has my head been in the gutter? Luke had a few minor defects at birth, and all this time I thought we were only waiting for the ASD to close, and I thought the mitral valve was like my own- Not too big a deal. Up until now, we thought all he'd need was a cath... and when he went in to the Ped today (another trip tomorrow)I find out that this and that is leaking, lungs, blood, repair mitral valve, replace it later... yada yada... OMG!!! Something I thought was not a big deal, and all of a sudden a cath turns into open heart. Huh?
You guys... I didn't tell anyone... On his birthday, Timothy got his first tooth, a week later he started army crawling, five days ago... Tim and I were watching a movie, we gave Luke his bottle (he holds it but cant find it if it drops) we heard... all of a sudden... Baba! Yeah right, Tim and I thought... Then again, "baba".. Tim and I stared at each other- each one afraid to get our hopes up... So Tim said "Baba!" to Luke... Then Luke told him "baba"... Then I did it... and so on... It was no fluke... He's been saying it for days when he gets his bottle... Do you know what that meant to me? Well, of course y'all do...
It was the most precious thing in my life. You guys, I finally made peace with him, DS, I am doing ok... I didn't expect this fear. My Timothy saved me... The thought that I have to trust a mere man with operating on my son... My stomach turns... I am so very proud of him... If something happened to him... well you could count me out of this life... I know it sounds terrible. I feel like a fool. Like I thought it would be ok, and then it wasn't. Pray for him, he is my world... Surgery is March 28... 6 days off.
__________________
Amanda, wife to Tim
Elizabeth Cameron 3/11/99
Caleb Mark 8/29/01
Emily Robin 10/22/02
Timothy Luke 3/09/05

03-22-2006 06:29 AM
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ajbest  
Super Member

Location: NC
Registered: Apr 2005
Posts: 2070
Last visit: 03-24-2006

we'll be praying for TLuke - he'll do great. it's so much better when they weigh more and are a little older. glad they can do it all now - Janna had the MV repair a month ago - it didn't phase her. she's still wide open and happy as ever. we trust the Lord will watch out for TLuke and also guide the surgeon. hang in there and keep the faith, aj

and congratulations! way to go TLuke - all that blossoming, even before they get your heart right!
__________________
Momma to Janna (AVCanal-T21-02/02/05)
Wife to Joseph (TOF & still thriving)



"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

03-22-2006 09:28 AM
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burnsun  
Senior Member

Location: Missouri
Registered: Nov 2004
Posts: 512
Last visit: 03-24-2006

That cath is really the only way they can see what is going on. Do you want me to come down and sit with you next week a few hours.

Who is doing your surgery. I have to tell you that I hated children's hospital, but Miranda's scar is so awesome! It is barely visible. I can walk you through the steps we went through- they just sort of gloss over them I feel at the hispital! I also have some of the stuff for his nose the night before- so you don't have to waste a copay on it! if you have one. It took us three pharmacies to find it!

I really do understand your panic- but as much as I hate the way the doctors explained it to me- this surgery is usually no big deal- they do it so often that they know all the complications and etc, they can head all off before a major problem! *&^*&*&** I hated that- but compared to other problems the fix or see- that is true.

Tim is doing so well, but as you saw it only took one bad cold to "squish that out" for a while. THis will really help him , and I will be thinking of you.

This site helped Eric get ready for the "after" photos http://www.lesterboal.net/baby/ ( I am not sure if it isn't working or my computer/network) but I also have mine- however nowhere near as effective and graphic.

Good luck! Dr Ghandi (CH), Dr, Fiori (CG) and the the other guy are among,the bests in their field. Call if you need help- and bring your own pillow and blankets to children's!
__________________
Jane

mom to
Colin (11/19/00) DS
Melea (2/13/02) DS
Adrian (7/04/03)
Miranda (2/1/05) DS

wife to great guy Eric
]

03-22-2006 10:30 AM
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rhonda  
Super Member

Location: Syracuse, NY
Registered: Jan 2003
Posts: 3184
Last visit: 03-24-2006

What great brags, way to go little man!! I'll be thinking and praying for you.
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Rhonda

Taylor 13, Jordan 11, Dylan 2 1/2

03-22-2006 11:55 AM
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marci  
Super Member

Location: lancaster, Pa
Registered: Dec 2004
Posts: 1228
Last visit: 03-24-2006

. I know how your feeling. The night before Joni's surgery was awful. I wanted to go to sleep so that it would be behind me and yet I didn't want to go to sleep because I wanted to hold her. It is a hard place to be trusting that God is in control and yet being unable to let the fear go. For me it was the moment that I gave her to God was when I found peace. I wasn't peaceful but I wasn't filled with fear. Not sure if that makes any sense. I tried to remember that the reality was Joni was safer in the operating room then she is in my car. They do know what they are doing and the kids bounce back quick. He will be better when it is over. Try to find things to occupy your time. I had friends that I never get to see come over.. Each day another friend was at my home to help me to get through the days before her surgery.
As for acceptance of ds. That's a process, like everything in life. To me, life isn't a destination it's the journey. The journey of ds is constantly changing because as they get older there are new challenges that we must face. And with each new challenge we must learn to accept another part of ds. And that is true with all people no matter who they are. We are always in the process of deciding if we accept those around us or we don't. When we accept we grow with that person when we don't the relationship stagnates or dies.
Hang in there. You have lots of good insights. Enjoy the journey and remember it's not what happens to us it is what we do with it.
He will be fine.
__________________
Marci
Mom to Caleb, Cody, Evan, Ethan, Alex, Anna, Joni (ds, 4/03)

"My mother taught me very early that I could achieve any accomplishment I wanted to. The first was to walk without braces:"

Wilma Rudolf winner of three gold medals in running events at the 1960 summer Olympics

03-22-2006 12:08 PM
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keri  
Member

Location: MN
Registered: Jan 2006
Posts: 69
Last visit: 03-23-2006

I think the days leading up tp surgery were worse than the actual procedure itself. The surgery only takes a couple of hours and you have days and days to think of all the things that can go wrong. Just know that these surgeons really do know what they are doing and they do it well. They will take good care of your little man and he will be back in your arms in no time.
__________________
Keri Mom to:
Sydney 9-25-01
Jack 2-10-03
Kaitlyn DS 7-30-05 Brave Heart 2-24-06

03-22-2006 12:53 PM
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elizasmom  
Senior Member

Location: Marin County, CA
Registered: Jul 2005
Posts: 536
Last visit: 03-24-2006

Praying for you mom, and of course adorable TLuke! Great job little boy on all the recent achievements!!!!
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Liz - Mom to Walker (3/24/02) and Eliza (Ds) (5/6/05)

03-22-2006 12:59 PM
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DanielsMommy  
Super Member

Location: Rhode Island
Registered: Sep 2005
Posts: 1407
Last visit: 03-24-2006

Way to go with all your new accomplishments!! Baba....that is a BIG milesstone!!!

If I can do anything at all to help you prepare. Please feel free to ask. We have tons of pics from every step along the way. If you feel they might be helpful to see...I can post them.

Many prayers and hugs coming your way. I know how hard it is to wait for surgery.


__________________
Lisa
Mommy to Elayna 10-1-02 and Daniel Ds 6-7-05
Always have hope....Without rain, there can be no rainbows.






03-22-2006 01:27 PM
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Koby'sMommy  
Senior Member

Location: South Carolina
Registered: Feb 2005
Posts: 651
Last visit: 03-24-2006

I know your fear Amanda! Just trust that everything willl be okay and ENJOY the few days leading up to surgery with him, it will make it easier! AND remember it isn't just one man you have to trust your child's life to! That is up to a MUCH bigger man!!!! And he will take care of you and Timothy ALWAYS!!!!! MANY MANY MANY PRAYERS!!!!!

YAYAYAYAYAYAY For the new skills!!!!
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Courtney-Wife to Chris- Mommy to Koby (12/16/04)


"Attitude, is the Disability"

03-22-2006 03:35 PM
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My Boys  
Super Member

Location: South Plainfield, NJ
Registered: Mar 2003
Posts: 1831
Last visit: 03-24-2006

He sounds like he will be chatting up a storm soon, good job on the brags. Sending prayers for the surgery.
__________________
Michele B.



Patrick (5-16-00)
Kyle (DS) (1-13-03)
Cameron (11-5-2005)

03-22-2006 04:25 PM
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JenBrock'sMom  
Super Member

Location: Des Moines, Iowa
Registered: Sep 2005
Posts: 1322
Last visit: 03-23-2006

Amanda - remember it is good to share and get things off of your chest and this is the place to do it! Your emotions sound so normal, who wouldn't have fear. But you know so many of the kids on here have been through what T-Luke is scheduled for, and they are thriving! Prayers to both of you during these next few days, I hope you find some peace and are able to just enjoy the time with him. We will also send extra prayers to your family and especially T-Luke on the 28th.

I love the brags! Baba, I can't imagine your excitement.
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JenBrock'sMom & wife to Jay
Brock 7/28/05

03-22-2006 11:52 PM
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Stephanie  
Super Member

Location: Yardley, PA
Registered: Feb 2004
Posts: 2612
Last visit: 03-23-2006

Amanda- I am going to keep you and TLuke in my prayers.
It sounds like he is off and running with all these milestones...how wonderful! I know it is easier said than done but don't overwhelm yourself take it easy and enjoy TLuke. I would definetly talk to someone to help ease the pain a little. I know all this must have been quit a shock but we are all here for you to vent to!


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Proud Parents Stephanie and Joe
Awesome Big Brother Joey 3/8/97
Beautiful Daughter Megan 11/8/03
Precious Lil' Livi 7/6/05


03-23-2006 07:24 AM
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Renee Lacey's mom  
Senior Member

Location: Gloster, Louisiana
Registered: Oct 2005
Posts: 700
Last visit: 03-24-2006

So sorry you are having to go through this.. I have been there and am glad that it is over..It wasn't nearly as bad as I thought but I had alot of family and friends there to support me.. I will be praying for you all and especially T-Luke.. Please keep us updated and remember we are here if you want to rant and rave again..
__________________
Renee Parker


Haley


Kassidy


* An extra little Chromosome thats all it is, you see. Where all of you were born with 2, my angel was blessed with 3.*

03-23-2006 05:57 PM
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klem  
Super Member

Location: Gadsden, AL
Registered: Aug 2004
Posts: 1759
Last visit: 03-24-2006

Ugh, I just saw this. I know we talked about this a bit last night, but I'm not much of the warm and loveable fuzzball and I tried to play it cool with ya. (i don't think you'd respect me if i were ) teeheehee. It's hard. The days leading up to Drake's surgery are a blur to me. I was on complete auto-pilot. There was nothing harder than looking at Drake's smiling face as we were on the way to the hospital KNOWING what was about to happen to him. (i'm not trying to make it worse, just letting you know I know how you are feeling). And I swear, Amanda, pre-op is the WORST. It was a horrible thing to watch, the poking and prodding, and he's wondering why the hell mommy and daddy aren't doing a daRN thing to help him. All I could think is, "My GOD, he's the one going through it...I have to be strong enough to stay in here with him....I'm not going to let him go through it alone." I wanted to RUN. I can't tell you how many times I just wanted to grab him and leave the country, like we were some kind of fugitives. I'm actually getting lumpy throat. Then you look at that sad little face and think, "Oh my God, he just CANNOT die!!! He CAN'T!" It's HORRIBLE! I can't sugar coat it.....but look at Drake now! Thank GOD, everything went perfectly and it will with T-Luke as well. It's not just one man either. Of course, most importantly, you know the big man is the deal, but there is a HUGE team of surgeons that will be working on him. A team of anesthsiblabla (i can't spell). Anyways, he'll be in SUPERB care. None of this helps, I know, but hey, I can try. I called the preacher who had recently officiated at my grandmother's funeral (sadly, i'm not a member anywhere) and asked him to come to our home and pray for Drake before we went to the hospital. He and another man came by and yes, we all stood in a circle, held hands, and prayed over Drake. I felt good. He thought it was good that I had taken it that seriously....HELLLOOOO, they were opening my child's chest!! Anyways, it sucks. Faith and adrenaline will get you through. Don't count on sleep. Take a manicure kit and some good magazines or books. Take your phone! We'll be praying.
__________________
Kelley, Robby's wife
mom of Daulton, the Mayor (10-07-98) and Drake, my treasure on loan from God (4-19-04) DS

03-23-2006 09:19 PM
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shea01  
Senior Member

Location:
Registered: Sep 2003
Posts: 986
Last visit: 03-23-2006

I'll be praying for little Timothy and you...

03-23-2006 09:34 PM
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Jenna  
Senior Member

Location: Texas
Registered: Feb 2006
Posts: 587
Last visit: 03-24-2006

My heart is pacing from reading your post. I can only imagine being hit with open heart surgery at this stage of the journey.

I will keep you and your little man in my thoughts and prayers.

All of his accomplishments are so great. Way to go Luke!
__________________

~Jenna
Proud mamma to these beauts!!!




DOB: Nate 7-26-03 ~&~ Lana 4-21-05

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