lolabug0519
TrachKid Profile
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Lola was born on May 19, 2009
My doctors were able to diagnois her 4 months before she was born with her heart defects, but we were optimistic that should would be okay....... I can start by saying if the doctors hadn't caught it when they did we wouldn't have known for quite sometime as she appeared 100% healthy! She had her first heart surgery at 3 days old which was successful and we were home 7 days later.......
When she was 2 months we spent 3 weeks in the hospital becauseher left lung was filled with fluid....(we would have never known had it not been for a routine hospital visit with her heart doctor, she never showed any signs of distress....she's amazing!)
A month after that she developed a cold that she kept for 4 months which brings us to her last scheduled surgery...
On December 1, 2009 she had her last heart surgery to repair her vsd....well that was successful, but while in the hospital her left lung kept collapsing. Which through a series of failed extabations they learned she had trachamalacia this entire time.....argh!!!!!
So after doing ll the research and fightening that we could, she ended up getting a trach..... Its only been 5 days, but she's doing so much better.
It makes me sad that this is 2010 and the best technology is a trach......... my heartand prayers goes out to everyone that has to endure this process...
*UPDATE*
April 13, 2010
It's been a rough couple of months, but their is much progress to report. ms. Lola no longer needs a feeding tube and eats everything by mouth. She now uses a hme during the day and on the vent at night. We have an appointment in June for a 2 day stay in the hospital to see how she will do without having her trach at all! So it's a possibility we could be trach free this summer. Of course she has speech and some motor skills delays, but she will soon catch up on that. We have 3 different therapist that come to the house every week in order to help her catch up developmentally. We just take it day by day.........
*UPDATE*
July 24, 2010
Whewwww!!! It seems like we've been on this road for ever, but we truly haven't. Lola went in for surgery to have scar tissue removed and possible decannulation and it was a success!! We are trach free, making noises, and happy as a clown!
*UPDATE*
May 15, 2011
Its been about 10 months since we've gotten our trach out and we are into everything!! Talking, running, climbing book cases (scarey!)! Lola is even attending day care!!! The only problems we've had is a constant runny nose, but other than that she is great! The power of prayer is amazing!
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Still doing great!!
2 February 2012 - 2:00pm — lolabug0519Its been over a year since Ms. Lola got her trach removed and she is doing fantastic!!! We are currently working on getting her caught up on speech development. I hope everyone else out there is doing great!. Try to make the best out of your situations and know that there is always light at the end of the tunnel, no matter how dark and hopeless it might seem. xoxoxo
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Thoughts of a mom..
16 January 2010 - 1:19am — lolabug0519<deep sigh>
My Lola bug has only had her trach for a week and I feel confident that we can handle taking care of her, but I am still extremly frightened of all the things that can go wrong. As of now she only has one thing ailing her which is her tracheomalacia. It gives us hope that she was able to breath 6 months of her life before this last heart surgery. I feel like every piece of my being is being used up to handle this like a strong mother. I just break down and cry sometimes wondering if maybe i didn't excerise enough or maybe i did too much while pregnat, or maybe I should have went the extra mile and ate nothing but organic foods, i know i can't blame myself but it's hard. All I could ever want is a healthy child. I would trade my own heart, soul, and life to make hers perfect..... But she is a fighter like her mom and dad and we will make it together as a team and a family!...................We are so very blessed that she is as healthy as she is.
Team Baker!!!
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Topics I've Participated In
| Title | Poster | Replies | Updated |
|---|---|---|---|
| Still doing great!! | lolabug0519 | 0 | 5 days 17 hours ago |
| No More Trach!!!! | rheare | 0 | 15 weeks 1 day ago |
| Decanulation | noahstone | 3 | 29 weeks 1 day ago |
| Official day April 11, 2011 | nellie | 3 | 41 weeks 2 days ago |
| DECANNULATED N DOING GREAT!!!!!!!! | nellie | 1 | 41 weeks 2 days ago |
Guestbook
omg=]
hey its been a long time now...im so happy lola is trach free! who would of thought juu...well alex still has his trach in but we are scheduled for a bronchoscopy and a evaluation for a future decannulation.. im very excited=]..we are also expecting our new lil one that is due on june 3,11
OMG!! Congrats!
I'll pray that Alex gets cleared for decannulation everyday! And super congrats on your new bundle of joy! (you've been busy!) It's so good to hear from you! I've been thinking of yall often. And I've been extremly worried about yall. I tried to call and text a couple times. Please keep in touch! If I can do anything just let me know! xoxoxo Happy turkey day!
Hi
Hi,
It's nellie, im so glad she is doing better. You must know it all takes time, but you can do it, that's what we are here for to support each other. Its ok to be afraid because we all were at some point, but as you see we did it and got threw it. It will be ok. Take care