We were so excited for our 20 week ultrasound ~ to find out the sex of our 3rd little baby (a precious girl named Noa)...but absolutely shocked when we also discovered she has a serious birth defect called Congenital Diaphragmatic Hernia (or CDH).
We are only a few months down the road and have decided to create this blog so that you can journey along with us. We invite you to share in hope, prayer, sadness and joy!!
Justin, Heidi, Ruby, Emmaus...and precious little Noa
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Monday, November 26, 2012
Sunday & Monday
Nov 25th & 26th
It ended up being a productive day for Noa...and I thought it was going to be quiet.
The biggest accomplishment was that Noa's catheter was removed from her chest! It had become an urgent concern because the sutures from the old ECMO cannula had opened a bit and were exposing the tubes from the catheter in her chest (using one of the same veins). Infection was a concern, as well as the swelling in her head and the line itself was a 'central' line to her heart. The surgeons were able to thread a new line into her leg by cutting it open so they could actually see it. Her numbers were stable through the procedure and all went well. It was a sigh of relief to get it out and so nice to see Noa without any 'hardware' in her upper neck/chest area.
Catheter in chest
No more catheter!
We have been going strong with the plan to give Noa the right amount of fluids, get her heart rate to the right spot and give her the diuretics needed to kick start her kidneys. They had an ultrasound to see if there was any urine in the bladder...but not yet. Today (Monday) they had a look at her kidneys and they looked good. The blood flow to them looked normal adn healthy, so there's no reason to think they won't work. We will stay this coarse for a bit more...but not sure how long. We have a conference on Wednesday with all the doctors and we hope to get a better idea of a time frame for surgery and how/if that effects the kidney situation effects that. Everything else with Noa is moving towards fixing her hernia in surgery.
CAN YOU BELIEVE IT?
Today (Monday) when I went to see Noa, they were prepping to replace her ET tube. She has had the same tube that she was intubated with when she was born, and she's outgrown it. So, they successfully replaced it today with a larger one. And when I went in to see her after the procedure....the room was silent (instead of the distinct sound of her old ventilator) because they also had switched her to a traditional ventilator!
Praise God! Its another step in the right direction. Even though the previous ventilator was good at treating her lungs initially, it's time for her to have more of a 'normal' in and out breathing motion and for her to practice breath.
That's it for now. I am so encouraged about Noa's kidneys and I have a lot of hope that they will start working again. I hadn't been feeling that way the last couple of days, but I turned a corner (thanks to prayer, the ultrasound and the encouragement of medical staff). We also are so grateful and excited that she has come off of some of her heart meds, changed ventilators and she continues to stay stable with her gases, lung and heart function. She is so strong... and beautiful.
Up to no good!!! but soooo darling!
Our family has had some fun over the weekend as well. We were able to go to the Oregon Museum of Science and Industry (thanks for the passes Ronald McDonald House!!) and we also were treated to a wonderful lunch by a new dear friend at delicious bakery!