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Hi everyone. Our daughter Alexandra was born 3/8/13 with LCDH. She will celebrate her first birthday next month and is doing GREAT -- eating, crawling, etc., no meds or devices. We are so thankful....

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...

Thanks Tracy. I know we're over the big humps (ECMO, surgery) but learning about this chylothorax was devastating knowing that there's not much that can be done to fix it except to wait it out. They...

Well, one week post-op, Alex has developed a condition called chylothorax. That's the reason for all of the fluid. Anybody else have this problem with their CDH'er? They have stopped her breast milk...

Alex's surgery yesterday was a success and turned out to be a lot simpler/quicker than the doctors anticipated. They were in and out in under 90 minutes. Apparently, the reason her left lung looked...

Great news: Alex came off ECMO today and her CDH repair surgery is scheduled for 10 am tomorrow (Thursday). She's had a rapid fire wean off of the ECMO and even came down a bit on her vent settings...

Monday update: Overnight her ox/co2 levels improved, and the neonatologist this morning decided to punt and try weaning again today. So far so good. Not going to do the scope thing as long as she...

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.

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....

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...

We seem to be in a holding pattern at the moment, but the way we look at it, no news is good news. She seems to be stable at a 50/50 support level but having a hard time getting her CO2 levels down...

Thanks everyone. Alex is doing very well today and they've started reducing her levels since her gases have been so good overnight and this morning. She even opened her eyes for us this afternoon......

Hi everyone. Our daughter Alexandra Nichole Holladay was born via c-section at approximately 5:30 pm on Friday, 3/8 at Washington Hospital Center in DC and immediately transferred to the NICU at...