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Wednesday, November 28, 2012

Wednesday
Nov 28th
brackish waters

Brackish waters are when salt and fresh water mix. Even though you can still see through the water, it becomes incredibly blurry and your sight is impaired. You can often feel the temperature change as well as your body hits the different waters.

I feel a mix of feelings and thoughts today and over the last few days as Justin and I try and process some information that feels pretty heavy about the potential road ahead for Noa.

Although we aren't there yet- we feel its fair and loving to share with you a bit of what we're being told. It's so scary and sad, yet not time to give up hope either. But we wouldn't want anyone to be surprised at the reality of where we've come to. There are so many of you keeping up and praying and hoping for this precious baby.

Today we had a 'Care Conference' with all the doctors involved in Noa's care, as well as a few more trusted medical staff/friends that are advocates for Noa and support us as a family. We've had these meetings before and they are very helpful with getting everybody on the same page.

They reiterated in the meeting what Noa's doctors have been explaining to us the last few day...its imperative that Noa's kidneys begin to function and she generate some urine. Although she still needs surgery to repair her CDH, it is not the driving force of her care right now. 

As you've read the last couple of weeks, all the issues pertaining to her CDH have improved (heart, lungs, gases, weening off of meds). Most of her care (and emergent issues) have been based around the dialysis catheters, changing of the dialysis machine and ultimately her lack of urine.

Even if they were to repair her hernia, the likelihood of Noa being a candidate for long term dialysis (until she's large enough for a transplant around age 2) is slim considering the complexities of her issues. There are a couple varieties of dialysis, but as we walk down either road, there are multiple other obstacles and added risks and complications. No one has said its impossible or they aren't willing to try and explore those options. And as parents, we are seriously going to look at them. 

As of now, the coarse of action is to do everything possible to set her kidneys up for success...and then wait. The doctors have said they have seen kidneys 'wake up' and generate urine anywhere up to 2 weeks after being challenged to do so. Everyone is willing to wait and there is no rush to get her to surgery for the CDH. What is a concern and has a timeline is the dialysis machine itself (it needs to be replaces every 48-72 hours). We don't know how many more changes she can handle. Whether its the machine or her...it doesn't have a history of going smoothly. Also, the dialysis catheter in her leg can only function for so long...as we saw with her last one (clots). 

So we are in brackish water...mixing of two worlds.
We have every reason to hope that her kidneys will work and have the total joy of celebrating all she's come through to bring her to the place of even considering surgery! But, without those kidneys- the waters ahead are very blurred. 

We love and very much appreciate you.








5 comments:

  1. We are old friends of Justin's from SLO. Just wanted to let you know that we have been praying and are moved and have fallen in love with your family. thank you for being so vulnerable.
    Jesse and Kellie Acosta

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  2. Sending thoughts and prayers for you all. Remember miracles do happen.

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  3. I don't know you, but I have been following your blog & praying...My heart just breaks for your family and all that you're going through...my daughter was in an accident last year that left her in a coma, in critical condition, with a traumatic brain injury...I remember sitting in the ICU praying for her, hoping that she would live, & then that she would wake up & be herself again....watching all of her vitals...and being aware of every complication...excited about forward progress...and disappointed by the setbacks, but always trusting that she was in God's hands & that He is good & that he loved her...just as He loves your precious Noa...one of the things that helped me not to worry so much about the setbacks, was realizing that the natural progression seemed to be 2 steps forward & 1 step back...I remember how hard it was to hear heavy news regarding Michelle's prognosis, but don't lose hope...our God is a big God & He hears our prayers...my daughter is doing far better than any of her doctors thought she would...I'm sorry if I'm rambling...just wanted to encourage you to continue trusting in Jesus, the ultimate healer & restorer...He will carry you through this...God is good!

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