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Saturday, August 18, 2012

Aug 17th - Meeting with MFM and Consultation with Neonatologist~ tour of NICU

Yesterday we had an appt with Dr Barber at Maternal Fetal Medicine. He isn't the perinatologist (definition) that we normally see, but he is the director of the MFM clinic and we really liked him. 

Our visits at MFM include a thorough look at Noa and her growth. They also monitor my levels of amniotic fluid (which can run high when pregnant with a CDH babe- mine looked normal) and then we have a consultation with the doctor. We always enjoy these visits (although bittersweet due to the realities of her condition) because we get to really 'connect' with Noa, and see her from head to toe...often in 4D. The stenographers always take time to explain what we're seeing and give us long looks at her face, tiny feet and hands and new growth, like her hair!

This visit with MFM's Dr Barber was was encouraging... just like our last one. 

Her development looked awesome. There were some more in depth measurements taken, per request of Noa's physician (whom we met with on Aug 1st), and she is doing very good. The liver is still below the diaphragm (a HUGE factor that determines how serious her condition is) and it looks like she is growing on track~ a big 3lb 2oz girlie! There were no additional 'guts' up in the chest, and they were able to get some good shots of her heart/valves functioning (which is in a tilted position because its sharing the space with her right lung) and it looked great. Her chest and abdomen are measuring normal (which can also be off due to position of organs) and her Head to Lung Ratio (LHR)- was up above the numbers that would be of concern. So, we are so encouraged. 

Dr Barber spent most of his time discussing with us what he saw in the ultrasound and what to expect next. We just hit 30 weeks on Saturday (today), and when we see him next, he'll have consulted with Noa's surgeon (Dr Georgeson-whom Dr Barber couldn't speak more highly of), the neonatologist (NICU doctor that cares for her directly after birth up to surgery and post surgery), and my OB. They will compare notes and brain-storm about Noa, the birth-plan and strategy of care. Then he will discuss it with us at our next appt.

It has been an on-going question if I will be needing a C-section or if we plan the timing of the birth at all (induction) for convenience with Drs schedules and availability/care. I was surprised (and hopeful) when Dr Barber said that best-case-scenario, I would go into labor naturally in my 39th week. He said it didn't look like Noa needed an 'exit-strategy', and that carrying her as long as possible for development would be ideal. Some reasons that would allow this timing 'risk' of natural onset of labor is that we live so close to the hospital and Noa most likely won't be taken for surgery for 3-11 days after birth. So the timing doesn't seem as essential, but Dr Barber said he would discuss with other drs. and let us know.

After our time with Dr Barber, we took the elevator 2 floors up to the NICU for a brief tour and meeting with Dr Wilson, one of the team of neonatologists that will care for Noa before and after her surgery. It is this team of people that will take over care as soon as she is born. They will assess her, stabilize her, treat her with oxygen...and after rolling her over to mom and dad for a quick peak...will move her to NICU. As soon as we are able, we can go up and see her and track her progress.

Dr. Wilson spent over an hour with us going over every procedure/treatment Noa would more than likely expect to encounter. She explained what markers they need her to meet before she can be released to go home (which could take anywhere from 3 weeks to a few months). One serious medical issuse that will closely be monitored and treated right away is pulmonary hypertension (definition). Both Dr Wilson and Dr Georgeson spent a lengthy amount of time explaining the seriousness of this to us.
After Noa's surgery, their goal will be to ween her from all the tubes and hook ups and any assistance she's needed with breathing and eating and pain. They will work with her to learn to eat/nurse (which can be an issue with CDH babies), and breath in a way that will ensure she continues to grow and thrive. The two extremes would be she comes home with a feeding tube and oxygen support or, hopefully in Noa's case, she is weened off of tube feeding and she is able to nurse (with supplementation) and needs no additional breathing assistance. Of coarse all of this includes medications, close monitoring and follow-up therapy (for possible delays in developmental 'markers').... and lots of support and love from her brother and sister, friends and family!!!!

This day was full of so much information- and I could write more, but this post is already very long!!! We don't mind sharing more if you have any questions!!!

Thank you

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