Thinking of you all this week.
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Thinking of you all this week.
Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla (, Chloe ( 6 ) & Elodie ( 3 )
I saw the beautiful picture of your first cuddles on facebook on Friday!! Hope Alex is still doing great off the vent and going strong!!!
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
Hi everyone! Tomorrow will be 7 weeks since Alex was born on March 8. I'm happy to report that she is doing well off of the ventilator -- using Vapotherm now, and continually being weaned. We had a bit of a scare with chylothorax and, when the octreotide therapy failed to completely eliminate the fluid production, we almost resorted to sclerotherapy. That was scheduled for Wednesday morning, but when I showed up at 7 am prepared to watch them re-intubate her... Alex had decided enough was enough and stopped leaking fluid! She remained steady through the night with a dry tube and today, Thursday, we've been cleared to try feeding her from a bottle! Just a little bit and formula not breast milk but still... this is huge! We know feeding is the next big hurdle but are hoping for the best.
Alex is making progess!!! Such a strong little girl, full of fight!
Glad to hear that her chylothorax has resolved and you can start feeding her again. Praying for a good start to feeding and she doesn't have too many complications. She can do this!!!
It is so hard to believe it has been 7 weeks! Strong days ahead for Miss Alex!!!
Keep the good updates coming in.
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
I was logging in to check on you tonight and saw your wonderful update. I'm beyond happy for you all. She is one strong fighter. I like this sweet little one already. Wishing you all the best this upcoming week and hope all goes well with bottle feeding. All sounds like great little baby steps. Sending hugs your way. How are you doing mom? Take care and know lots of people are thinking of you all.
Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla (
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