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A hlhs story of hope
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Welcome to our world...
Latest Activity
She's beautiful...I saw you at Sick Kids on Thursday the 14 but you were busy talking to Paula and the new clinical nurse. Hope all is well.
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
Been away for a bit!
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 w… Continue
Posted on October 14, 2009 at 5:24pm —
Amayah Hope Lobo Update - June 23, 2009
Amayah seems to be having issues with her feedings. She stays unsettled for long periods of time once she has been given her milk. The doctors think it could be that her lungs are getting too much of the oxygenated blood from the shunts and not her stomach (Her stats stay in the 93% to 95% range at all times and she hit 100% today). They plan to start her on captopril tonight. They have given her some morphine to take off the edge from the continuous acid reflux. She hates it when the doctors an… Continue
Posted on June 23, 2009 at 7:19pm — 3 Comments
Comment Wall (22 comments)
- At 9:50pm on October 8, 2009,
Meredith 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 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 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.
- At 7:37pm on August 11, 2009,
Cheryl Davis-Catchpaw said… - Hi Nel & Gavin
How have you guys been? Busy I'm sure! How's Amayah doing? We think about you guys all the time and hope you are doing well.
Take care and talk to you soon.
Cheryl
- At 3:27am on August 8, 2009,
Beatrice R R said…
- Hi, this is Beatrice, I will have you in my prayers. Much love to Amayah.
- At 11:15am on July 31, 2009,
Auntie Kimmie said… - Our prayers are with your family! Thank you for welcoming my family, The Myricks to the site! Everyone is with your little Miss Amayah!!
- At 2:19am on July 31, 2009,
The Myricks said… - Hi Lobos family, this is a great website for families to get support from other families who know firsthand what they are going through. Thank you! We will keep Amayah in our prayers!!!
- At 10:13pm on July 22, 2009,
Cheryl Davis-Catchpaw said…
- I hope you guys are doing well. Thinking of you often!
Cheryl & Mike
- At 11:30am on July 3, 2009,
Brenda said… - Valaree is doing well. Her sats seem to drop at night but she's hanging in there. She too had some trouble with feeding and went home on a ng tube. How is Amayah doing?
- At 10:05pm on June 22, 2009,
Cheryl Davis-Catchpaw said…
- Hi Nel and Gavin
We are home now for a night or two. I/We are finding each day harder than the last. It is so difficult to be away from our daughter and when we are home it's so hard to be away from Nathan. We are feeling very torn. I am feeling more and more emotional too. Tears seem to come so suddenly. At this point there is no plan for surgery for Nathan. He needs to get bigger and stronger and I think they want to try to find out first what else is going on with him. He had the PICC line put in today and that went really well so we are happy about that. He is stable and they have taken him off a lot of the drugs he was on. Today we saw him move his hands and feet and mouth so that was very exciting for us.
I hope Amayah and the two of you are doing well. I am assuming you have not been able to see Nathan without one of us being there. Gavin I know you said you wanted to go see him then things got a little busy that day. We wanted to see Amayah as well but you were gone by then I think. Anyway, we plan to be back on Wednesday unless Nathan's condition changes. Maybe we'll see you then.
Cheryl & Mike
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We have added a ChipIn & PayPal donate button for those of you who would like to support the Designer Heart Network. We currently run the network from Toronto, Canada and have outlined below some of the costs we incur on a monthly basis. Please understand that we are not a charity and cannot provide receipts for tax purposes. There is no obligation to donate. Your support to the families on this network, personal blogs and discussions are worth their weight in gold.
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All money donated to Designer Heart will only be used for network up-keep(On-going marketing, Ning services, Ad revenue building etc…). We appreciate all your support and thank you for making this network as strong as it is today.
Monthly Costs:
- Ning domain set-up $7 per month
- Monthly Google Adwords marketing approx. $50 per month (To get our message of support out there!)
All money donated to Designer Heart will only be used for network up-keep(On-going marketing, Ning services, Ad revenue building etc…). We appreciate all your support and thank you for making this network as strong as it is today.
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