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Tracy, you have to love rumors! Interesting though when I tell "outsiders" about CDH I often get "is that when the intestines are on the outside?" Seeing your post made me look it up that condition is called
Gastroschsis.
I hope we can see the article about her on line.
The baby next door to us in the NICU had Gastroschsis and I got really friendly with his parents because he was in there for a while too. He had a series of surgeries to slowly put back the intestines in and he recovered very well. He had no problems breathing, but he had problems with feeding and they had to introduce food very, very slowly. He went home a little before Dakota. It was very interesting what you learn in a NICU!
Mom to Dakota Tenney- born 12-25-08 (RCDH). Diagnosed at 29 weeks. Born 7 weeks and 2 days early (32 weeks and 5 days). She is my Christmas gift and I am never giving her back. ECMO three days. Surgery on Day 13. Home on cannula oxygen 2-25-2009. Off oxygen 3-31-2009. No feeding tube yet *knock on wood*. Hard to feed and still a skinny little girl- but we are working on it!
Tracy - looking forward to seeing the article! How exciting!
Yes, there was a baby in our NICU also with Gastroschsis who was only in the high level NICU for about 2 weeks and then was gone by 4 weeks. She seemed to recover very well from her series of surgeries. She certainly didn't look too good for a while there but seemed to recover pretty quickly. Especially compared to Andrew who was literally in critical condition for like 6 weeks straight!! Also kind of funny - one of my sister's friends had a baby born with this as well just before Andrew and her her baby recovered very quickly too. When Andrew was born with CDH, she thought it was something similar and told me how quickly Andrew would get better and that Gastroschsis was kind of a "sister" defect to CDH. This was before we knew too much about CDH. Well, we quickly found out she was TOTALLY wrong!
Mom to Andrew born 6-15-2009 w/LCDH- diagnosed at birth. 66 days in NICU- 13 days ECMO- 43 days on vent - Pulmonary Hypertension- Chylothorax- Reflux - lots of ups and downs - now a happy 1 year old! Also mom to 3 beautiful girls - Samantha (10/18/2000)- Emily (7/22/2003) and Sara (11/14/2006).
You know what happens when people assume... HAHA. And yes, I'm sure the article will be online. If not, I'll be scanning it. =) I haven't heard back from the editor yet. I think if I don't hear from her by Monday I'll email her back, just to be sure she hasn't forgotten about us.
Mommy to a Miracle: Ericka Elizabeth (3.18.2009)-LCDH diagnosed in utero at 29 weeks- Venitlator- Nitric Oxide- Repair surgery at 13 days- Venous Venous ECMO at 16 days- Venous Arterial ECMO at 21 days- came off ECMO at 36 days- off oxygen support at 84 days- G-tube surgery at 78 days- home at 100 days..FINALLY! I'm so proud of her and all the progress we have made! All meds and g-tube DC'd on May 5th- 2010. She's still a skinny minny but she's healthy and happy! She's amazing!
ERICKA'S JOURNEY: http://www.onetruemedia.com/shared?p...39&skin_id=801 www.myspace.com/tracy_leigh
Tomorrow, at 11am, I'll be meeting a reporter for the paper so she can interview me. I am SO EXCITED! The article should be running on Thursday, March 3rd. I'll keep you all posted as it progresses.
Mommy to a Miracle: Ericka Elizabeth (3.18.2009)-LCDH diagnosed in utero at 29 weeks- Venitlator- Nitric Oxide- Repair surgery at 13 days- Venous Venous ECMO at 16 days- Venous Arterial ECMO at 21 days- came off ECMO at 36 days- off oxygen support at 84 days- G-tube surgery at 78 days- home at 100 days..FINALLY! I'm so proud of her and all the progress we have made! All meds and g-tube DC'd on May 5th- 2010. She's still a skinny minny but she's healthy and happy! She's amazing!
ERICKA'S JOURNEY: http://www.onetruemedia.com/shared?p...39&skin_id=801 www.myspace.com/tracy_leigh
We need to Grt the Word Out... GREAT NEWS !!
In HIS Service Debbie & Gerry Freed [Gerald_Freed@hotmail.com] [http://reocities.com/cdh_freed_family/]
Great News.. We Need to Get The Word Out on CDH
In HIS Service Debbie & Gerry Freed [Gerald_Freed@hotmail.com] [http://reocities.com/cdh_freed_family/]
Awesome Tracy!
Mom to Andrew born 6-15-2009 w/LCDH- diagnosed at birth. 66 days in NICU- 13 days ECMO- 43 days on vent - Pulmonary Hypertension- Chylothorax- Reflux - lots of ups and downs - now a happy 1 year old! Also mom to 3 beautiful girls - Samantha (10/18/2000)- Emily (7/22/2003) and Sara (11/14/2006).
The date of the article has been changed from March 3rd to March 17th-ABSOLUTELY PERFECT TIMING! =)
Mommy to a Miracle: Ericka Elizabeth (3.18.2009)-LCDH diagnosed in utero at 29 weeks- Venitlator- Nitric Oxide- Repair surgery at 13 days- Venous Venous ECMO at 16 days- Venous Arterial ECMO at 21 days- came off ECMO at 36 days- off oxygen support at 84 days- G-tube surgery at 78 days- home at 100 days..FINALLY! I'm so proud of her and all the progress we have made! All meds and g-tube DC'd on May 5th- 2010. She's still a skinny minny but she's healthy and happy! She's amazing!
ERICKA'S JOURNEY: http://www.onetruemedia.com/shared?p...39&skin_id=801 www.myspace.com/tracy_leigh
Perfect timing to come out the day before her birthday!! Look forward to reading it!!
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
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