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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Sunday, November 11, 2012
Sat, Nov 10th
Hello from Portland...weekends at the hospital feel like a weekend. Fewer staff, visitors and not the normal hustle and bustle. It seems like its becoming a pattern for Noa to rest at these times (and us as well).
Justin and I will trade off morning rounds now (though I suspect I will do more of them since I am more of a morning person and its my habit now of showing up with pen and paper ready to write down any detail of Noa's treatment). So Saturdays rounds...
Noa is slowly 'shrinking'. She is remarkably smaller than she was on Friday night...but still swollen from all the fluid they have needed to give her to replace what she was loosing when she bled so much. The cannula sight where she was bleeding has shown no sign of anymore blood...what a relief, Praise God. sigh.
The drs are still treating her with antibiotics for her infection still and want to see a good 24 hrs of negative results (meaning infection is gone) from the lab before making any changes. Pray that ends quick. The antibiotics do something to complicate the whole circuitry/dialysis/fluid balance and the chances of it forming clots is increased.
Lastly, they said that her lungs look 'ok' right now. They haven't recovered from the circuit change and she has taken a lot of fluid into them, as was expected.
When I went to visit Noa in the evening, she had a bedside nurse that was very kind and attentive (she normally has 2 nurses- one just for ECMO and a bedside). The nurse went down to the NICU floor (one floor below us) to grab baby blankets and pillows and a special gel-filled pillow for Noa's feet to rest on. It made me feel a little better about the simple mom's care that I can't give her. Its been harder and harder to see her lying there...without cuddles and normal baby movements. Its gotta be taking some sort of toll on her little body. Not to mention that the hospital has thrown everything but the kitchen sink at her to keep her thriving (and I wouldn't change that for a second)...but I know there are side effects to all of these things that I pray God will miraculously minimize....anyways...I included the photo of this mini spa treatment
Other than that- she is resting and waiting for enough recovery to trial off ECMO next week. The days aren't firm, but maybe Tues/Wed.
As for the other two darlings...Ruby and Emmaus, they are doing better. I feel like they are beginning to adjust and have turned a corner in adjusting to a new routine. We aren't dealing with nearly as much craziness and crying during bedtime like we did the first week or so. Meal times seem to be a challenge still but we'll keep plugging away at that...heck...it wasn't easy at home either!!!!
We were able to get out yesterday and do a couple fun things. We went to a model train show...where Emmaus repeatedly said,
"choo-chooooo" over and over. And after naps we went on a long walk and checked out the 'neighborhood' around the hospital, played at a park for a long time and finished with pizza! It was refreshing for all of us.
One more thing I want to mention that is was so wonderful, was some fun packages we received in the mail from some friends...and it wasn't the first time we've received care packages either. Thank you to everyone that has sent us gifts and necessities! We have truley needed it all (the fun and practical items), and honestly haven't had to worry about extra details or felt a 'need' because of your thoughtfulness and generosity. It honestly benefits Noa in the end, because we are able to rest and put our attention with her and not elsewhere.
Pb&j after trains
Post-pizza ice-cream smile!
We love and appriciate all the prayers, encouraging texts and emails and FB posts. We hear alot of wonderful reports of people praying and standing with us and Noa during this time...thank you so much.