I'll be keeping you and her in my prayers!! Slow and steady win's the race!
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I'll be keeping you and her in my prayers!! Slow and steady win's the race!
Melissa Larrison mother to 3 girls Jada-10- Kaia-9 and Hanna who is my angel. LCDH on ventilator 21 days- ECMO 17 days- Kidney failure- Dialysis for 3 days.
I hope Alex is continuing on her journey towards healing. We are all thinking of your family and sweet baby girl.
Well, a bit of a disappointing morning so far. Alex's "good" lung is having a hard time staying open and processing C02. We seem stuck at 50/50, and her BP just went up so they are giving her some more sedative (which they'd taken her off of completely yesterday morning) so this will likely delay her breathing exercise for the day. Frustrating. The nurse said this is not uncommon for a CDH baby at 7 days, usually they see some more progress at 10+ days. So we wait...
Bless those nurses. Great advice. I know it's hard, but it will help you. So glad to hear about your support team. Yeah!!!!!! What a gift. Thinking of you all. More love & hugs from MD. Have a good weekend. Keep up the good work sweet little one.
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 )
One day at a time....so many ups and downs in this journey. Focus on the positive....she is still fighting! She just needs more time for her lungs and heart to rest and get stronger before they adjust her settings some more.
Tell that sweet baby girl to stay strong and we are sending her much love and prayers.
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
Congratulations on your baby! Fight baby, fight! Get some rest...I know its easier said than done. But, you have to take care of yourself too! Thanks for the updates!
Nicki
Today is ECMO day 11. We had our first circuit change at day 7 and our second today. She just does not like the plastic tubing apparently. Seems to have tolerated this change better than the first. Hoping her lungs clear up, fast, so we can get her off of this thing and into the repair surgery.
Praying for strength for Alex! Keep fighting baby girl.
Hope her lungs clear up soon and she can have her surgery repair. Will they not try the surgery while she is on ECMO? I know it depends on the facility and how stable the baby is.
Hope she can soon come off of ECMO and have her surgery soon.
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
Thank you for the update. Poor little thing. Sending more love and good thoughts your way. Thinking of you lots.
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 (
She's been stuck at ECMO 50%. Not oxygenating well on her own to wean more than that. They are going to try putting a scope down her airway to see if anything is obstructing the lungs.
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