Thursday, July 18, 2013
thursday 7/18/2013
I don't have a whole lot of energy or will-power for that matter to be real specific in the blog today, so brief update. Ava is stable. She got a PICC Line in the jugular vein in the right side of her neck today. She is getting so many meds, fluids, and blood today that they needed more IV access options. I think she has 8 or 9 IV pumps being used. Around 9pm she dumped a ton of urine and all of a sudden her heart rate dropped to the 60's. Shaun called me frantically and I ran to the hospital. Her heart rate came up a bit and the attending was relatively unconcerned. He said to get her off the vasopressin completely. Her chest x-ray looked unchanged. Meds and antibiotics were adjusted a bit today. The lab cultured Klebsiella (spell?) bacteria from her endotrachial tube, but she is already on antibiotics to cover that. She had blood transfusions yesterday and today. Cardiology wants to keep her hematocrit above 40. She is still sedated but not as paralyzed. Oscillator setting remain pretty much unchanged. Her oxygen needs range anywhere from 40% to 100% (remember that room air is 21%).
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Amber & Shaun,
ReplyDeleteI realize we don't know each other, but I am in a couple of church groups with your friend Sarah Ratcliff. She asked our group to pray for your family, and because of my past experiences, I knew immediately that I needed to look you up.
I've read every single page of your blog, and so much of it is sadly familiar even though our stories are a little different.
I will very briefly share my story, and I'll post a link in case you want to read the whole thing sometime.
My twins were born at 25 weeks -- identical boys with Twin-to-Twin Transfusion. Conal and Braychan were both 1 lb 14 oz, and they were both in a lot of trouble, medically. Conal was the recipient twin and was experiencing congestive heart failure when I went into premature labor. He lived three days, hooked up to a million machines (they were both on the oscillator for a couple of days, and holy moly was that a loud couple of days!), and finally went home to heaven on July 29, 2009. Braychan fought for a long time after that. Long story short on that front: he is now a very robust (almost) 4-year-old.
The whole time this was happening, I was in Seattle, where the procedure was done to try to save the boys. We lived in VA, and that is where my husband went home to, shortly after Conal passed away. My 17-month-old (now 5) had to go to Ohio to live with my in-laws, because I had no room to take care of him in the little apartment graciously provided to me by a woman I'd describe as nothing short of an angel.
We saw some miracles in that time, despite the grave circumstances.
People I didn't even know came out of the woodwork to help, offer prayers, and do anything they possibly could.
As I read through your blog, I cried many times. For Ava's amazing will to fight this amazing fight from the moment she was born (and before!). For your dedication and strength as a mother, Amber. For the unity of your family in such a difficult time that would break even the strongest of families. For your faith, your courage, and your strength as children of God. I admire you. I will never tell you that I can't imagine how you made (are making) it through this, because the truth is, I know: you were not given a choice. You make it through this by simply living each day and savoring every single moment. The weak, the strong, the agonizing, the frustrating, the encouraging, and the completely helpless moments. All of them are special, and all of them are what gets you through this awful (both in the definition of "terrible" and "full of Godly awe") experience.
I am in Colorado, so I don't know what I can do besides pray, which I most definitely am doing. But if you need a friend who has been there, either one of you is welcome to contact me. My blog is listed below, and so is my personal email. Great big hugs from one NICU mommy to another.
Here's a quote that I love, and I think that it applies:
"When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure."
-Peter Marshall
Alli Hodgson
daisee@mac.com (daisee at mac dot com)
http://keep--swimming.blogspot.com/