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Friday, December 7, 2012

Wednesday/Thursday
Dec 5th & 6th

Beautiful Noa
The circuit change went very smooth with no issues at all. Justin and I were both able to be there (thanks to a lovely nurse who volunteered to watch the kids). The whole process was more formal than any previous time (we learned our lesson!) and it paid off. I think  I was able to pick up on everyones nervous 'twitches' more than ever before as well! We were all rooting and praying for no problems, and in the end, there was a collective sigh...and on we go.

I was able to hold Noa's little hand during the circuit change (and I am thankful for the philosophy of modern medicine that allows and values that connection between family members). I was studying her face during the hook up of the new machine and looking for signs of distress or discomfort. And more than once when I was watching her, I'd get this image of her peacefully sleeping in Jesus' arms in a boat on a stormy sea. Just like him, she was undisturbed by the threatening storm (see last blog entry). I think I will try and see myself there in his arms too. 

Noa's primary doctor and cardiologist decided that it might be helpful to try a new med to increase her cardiac output and hopefully improve the blood flow to her kidneys. It seems that its been helping. The other important factor is having enough fluid in her inner vascular system that wants to go through her kidneys. So, the plan is to get her 'fluid positive' (and see her get swollen again), and wait till the kidneys kick in! When I went to see her this morning, that plan was underway.
The tangle of meds!

Noa's doctor (and the nephrologist) feel like we should see something within the next 4-5 days if we are going to. After that, we will begin discussing the next plan, assuming that her kidneys are in a state of failure. It seems that time lines can be flexed a little, depending on what is happening with Noa. But if all the circumstances are optimized for her to make pee but doesn't, then there has to be an end point somewhere.

The preliminary results on Noa's blood culture has come back negative for an infection...whew! And her doctor has continued to wean her off steroids as well as remove her from phenobarbital (a sedative). That means they will be adjusting her other sedation for the next day or so. Noa is back down to 25 parts oxygen on the vent (21 is 'room air'), and is down on the dopamine.

Her stats look good and she has had a couple good days of being cared for by the nursing/medical staff. This morning the surgery team came in and put some extra bandaging on Noa's neck where the ECMO cannula were. The sutures were starting to open up due to her skin swelling with the edema. They said it was 'ugly', but it would heal fine.

Some Encouragement

During all of this, there has been some incredibly loving nurses that have made an effort to bring in the nurturing part of parenting that I've missed out on since Noa's been born. Last week, one nurse had the insight to give me some alone time with her. I had never been alone with Noa since she's been born, and I didn't realize I missed it until I got it. They were right outside the door, but it was still nice to have a tiny bit of that intimacy...to freely talk to her. Another nurse last night asked for my 'help' in inspecting Noa's back for any breakdown in the skin. So she tilted Noa on her side and I got to see her back...rub it a little. That was nice too. 

We have been feeling 'washed over' by lots of generously loving people. Here are a few examples...

~ A man we've never met decided to generously make t-shirts and sweatshirts to raise prayer and support for Noa and to help us financially with the medical bills that are already coming in. He has also displayed God's fatherly heart by rallying others to be aware of and pray for Noa.

~ We have become friends with some of the medical staff that are rooting for Noa and our family. They have offered love and assistance to us far beyond their 'jobs', and have connected us with other families with CDH babies.

~ Our friends and family have continued to care for us though letters and cards, financial support, texts, emails and phone calls...always asking what they can do. Thank you for your endurance!

~ And so many of you that we've never met have donated money on paypal, encouraged us with comments on the blog, prayed and have supported those who support us! Thank you. We love hearing stories about people praying for Noa.

~ Lastly, just folks we meet when we are out and about have been openly kind and loving. Justin and I were at a park with the kids and met a nanny that we shared nothing with except where we were staying, and she offered to babysit for us so we could have a date. Another couple we briefly met at a pizza/pub we like (it has a great kids play area too), bought us a gift card after they discovered a little about Noa

There are so many ways God is showing his support and love to us and it's been unconditional. 
Thank you so much

My goodness those kids are CUTE!!!

3 comments:

  1. So thankful to hear of how God is providing for you. We will continue to pray for constant provision in every way needed and for strength, endurance and peace through all of this. We love you.

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  2. I once was introduced to the both of you through the Pulliam Family when everyone was still in the SLO area :) I came across your blog many months ago (before sweet Noa was born) and I have been praying for the entire family ever since. Noa's latest picture is so precious. May the Lord bless your family. Just know that people you have either met once or never met have and will continue to pray for Noa, her siblings and of course you.

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  3. Just thinking of you all. Love and hugs to Noa.

    Shannin, Jason and Zoe

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