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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Tuesday, November 20, 2012
Sat-Mon Nov 17th-19th
THE WEEKEND REPORT
Sunday: A Rocky day.
As of Saturday, Noa's oxygen saturation numbers looked so good that they turned down the settings on the ventilator. This means that her lungs and heart are working together as a team to oxygenate her blood/body more effectively. She is still on the 'special' gentle ventilation machine (VDR), and they were hoping to switch her to a traditional ventilator in a day or so. As of today (Monday), there were no plans to change ventilator. She had such a rough day yesterday that they had had to turn her settings back up. When she gets upset, all her numbers reflect it and she needs more assistance to be stable.
She did have another step forward. They were able to removal the two IVs that have been in her umbilical cord since birth. Usually those lines stay in for only a couple of weeks, so they were concerned about clotting or infection, but they were able to remove them before either happened. They still need those two lines that give them access to arteries for medications and drawing blood (to check her oxygen exchange or "gases", and to test her blood as she's on dialysis among other things), so the plan was to place a femoral line (in the front of the hip), which they've successfully done, and another arterial line either in her ankle or hand. As of today, they haven't been able to do it because she is so so swollen from retaining fluids, they can't feel or easily find her artery.
Working on Noa
When I went to visit Noa on Sunday morning, the Dialysis doctor was scurring around with some frustration. I guess Noa was left off the machine too long during the morning ECHO (which showed excellent heart function). When they tried to return her to the machine, it shut down because the 'return pressure' was too great. It was encountering some blockage or resistance. This occured last Thursday as well. After many hours, surgeons assisting, nurses repositioning Noa and lots of prayer and finger crossing, they were able to keep it going even though the pressure numbers were running higher than normal. One main issue is the size of the catheter in her chest. Its very large (adult) for a baby and its positionally awkward due to that. Best case (and essential at some time) is that she comes off dialysis. But at this point they need the machine to remove fluids and she needs to urinate!!
Lastly and the most major issue right now...she is becoming over filled with fluids. Its normal for someone who is sick to retain fluids....and Noa is. They have to keep giving her meds (8 or more drips) in addition to blood and other fluids that she needs due to being on dialysis. But none of it is coming off because her blood pressure drops low every time they try to remove it (and she's not peeing). Yesterday alone they gave her 600ml of fluid (THATS 1/2 A LITER!!!!). All that liquid makes her incredibly swollen and its also making all her organs swollen and it's in her lungs, which is not good.
Today (Monday) they decided to just let her rest even though they had planned on placing another arterial IV line in her and possibly replacing her ventilator tube (she's had the same one since she was born). Noa has proven that when you give her a day or so of rest...everything improves. When I left her this afternoon, she had a pretty stable day and they had managed to get 11ml of fluid off. The goal was 50ml.
Earlier photo with sound buffer ear muffs
Its been sad to see her so swollen. Each time I go in she's bigger. Last night I couldn't help but cry...its just a physical reminder of how sick she is...and it can't be comfortable. She had a rough day on Sunday and I held her little hand a lot and tried to calm her during the slightest upset, like getting her mouth suctioned. Her eyes don't open because they are so swollen and she is sedated (though they've turned off the paralytic), but when she's upset, her arms move and her little feet flex and she wiggles her body around a little. Ugh, it sucks. Please pray she gets better. I can't stand to see her laying on her back everyday. She needs to be repositioned and bathed...and held. Poor baby.
Thank you for those of you that have prayed for our health. I know it makes a difference. Emmaus started to come down with a cold, but it lasted only 1 day. Ruby couldn't breath out of her nose last night (and it felt like she had a fever) but she was fine today.
This week will be a little different with changing of doctors due to the holiday. Tomorrow and the next day she gets a new doctor we've never met (we pray he has wisdom to care for her). And then another doctor for 4 days, then back to the one she has now. We pray for continuity and wisdom in care.
Thank you for faithfully standing with us and honestly...holding us up some days.
Birthday cupcakes from some dear friends!
Justin, Heidi, Ruby, Emmaus and Noa.
ps- we were able to go out for Justins birthday and enjoy dinner as a family!!