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Latest Activity

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Congenital Heart Defect Network - Designer Heart now has leaderboards Dec 13, 2011
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We may have a new direction for www.DesignerHeart.com - Please stay tuned!
Status posted by The Lobos Dec 10, 2011
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Sanctus Real - The Story Behind The Redeemer

Music video by Sanctus Real performing The Story Behind The Redeemer. (P) (C) 2011 Sparrow Records. All rights reserved. Unauthorized reproduction is a viola...
Video posted by The Lobos Dec 10, 2011
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The Lobos received a gift from HLHS Mom Nov 23, 2011

Profile Information

Name of loved one
Amayah Hope Lobo
Name of congenital heart defect
Hypoplastic Left Heart Syndrome (HLHS)
The age of your child or loved one with a CHD
Born June 8th, 2009
Birth date for your child or loved one with a CHD (MM/DD/YY)
06/08/2009


The Lobos's Blog

The Lobos

How to manage and care for a G Tube site

Posted on October 16, 2010 at 12:04pm 1 Comment

We thought it would be nice to share our care process for keeping Amayah's g tube site clean and trouble free. We can't guarantee that our solution will work for you but it's worth a try if you are looking for g tube care solutions.



Amayah has had a g tube since she was about 6 months old (can't remember the exit date!). Heart babies tend to struggle with feeding and in retrospect this was a much better solution than the ng tube. Well we say better in bit of a selfish way I think (for… Continue
The Lobos

Been away for a bit!

Posted on October 14, 2009 at 5:24pm 0 Comments

It's been trying over the last few months to say the least. Amayah went through a risky BAS procedure and then got her G Tube put in. Soon after she started vomiting up yellow bile and after a 6 hour stay at Sick Kids emergency we found out that the tube was blocking the passage way between her stomach and intestine. They had to re-position the tube 9 days after it was put in and they did it with any sedatives so our baby was not very pleased. On a positive note she is putting on a nice bit of… Continue

Comment Wall (28 comments)

You need to be a member of Congenital Heart Defect Network - Designer Heart to add comments!

Join Congenital Heart Defect Network - Designer Heart

At 8:31pm on November 22, 2011, HLHS Mom gave The Lobos a giftHLHS Mom
Gift
Thank you for the message. I agree about the chd community available on facebook, I have over 400 heart friends. Wishing you all the best of luck! Maybe we'll meet one of these days at Sick Kids.
At 9:21am on May 15, 2011, Lisa Curcio gave The Lobos a giftLisa Curcio
Gift
I hope your day is blessed with love and friendship!
At 8:40am on May 15, 2011, Lisa CurcioLisa Curcio said…
Thinking about you today and hoping Amayah is doing well.
At 4:17pm on March 29, 2011, Cheryl Davis-CatchpawCheryl Davis-Catchpaw said…

Hi Nel, Gavin and Amayah!

How have you all been? I've been thinking about you and wondering how you are all doing. I just wanted to let you know that we are doing well. We are expecting our 3rd child (a girl) any day now (due date Apr 10). Everything is going good with this pregancy. We were followed at Mount Sinai and Sick Kids until it was determined that everything is fine.

How is Amayah doing? Well I hope. Anyway, I just wanted to let you know that I've been thinking about you and I hope all is well.

Take care and ttys.

Cheryl

At 11:37pm on December 28, 2010, Belinda BlancoBelinda Blanco said…
Thank you!! Ur Baby has Left Heart Syndrome, My boy has the Right but he has a leaky Aortic Valve so technically he has heart disease on both sides..You have a beautiful girl!! God bless!
At 8:00am on December 28, 2010, The LobosThe Lobos said…
Thank you to all of you who were thinking of and praying for Amayah. We are back home now and the recovery continues.
At 7:56pm on December 06, 2010, Lisa Curcio gave The Lobos a giftLisa Curcio
Gift
I am praying for Amayah
At 9:50pm on October 8, 2009, MeredithMeredith said…
Hi there,
Thanks for the welcome. I have a 6month old who was diagnosed with an ASD today. I also had one which was closed via catheter two years ago. I am learning that CHD impacts feeding and he has been slow to gain weight and is now in the 10th% for weight (down from 50th at birth). He also doesn't feed well. Any suggestions would be helpful. He just started solids. thank you, Meredith
At 11:20pm on September 24, 2009, Jeannie  ReynoldsJeannie Reynolds said…
Thank you for the welcome-your little one is absolutely precious. As you can see Lauren has definitely had her share of bumps in the road but these kids are amazing. She's now 5 and the last couple of years have been so much easier as she's grown and gotten stronger.
God bless!
At 1:17am on August 28, 2009, Beatrice R RBeatrice R R said…
Yes, everything is ok. Thank you for asking. Tomorrow we have a preoperation consult with the surgeon. Gael had a CT Scan about a month ago. Then cardiolosits' nurse called to schedule the appt. with the surgeon. We are thinking they are probably going to schedule the surgery soon.They have not talked to us about the results of the scan they said we would talk about it at tomorrow's appt. THANK YOU. I HOPE YOU ARE DOING FINE. I HOPE AMAYA IS DOING VERY WELL. Tonight Gael (my baby) and I will pray for everything to be ok. We will have you in our prayer. Thanks for your concern.
 
 
 

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