Tuesday, August 13, 2013

Day 27 - Hearts and Kidneys

A year ago I was so worn.
I'd stopped updating people on Jonathan's daily progress.  It was too hard. Too hard to write, too much to process. I was so tired.  We all were.

A friend (Thanks, T-dawg!) had sent us a pair of monogrammed backpacks, one for each of the girls.  I was so grateful, as Ella was starting kindergarten and I had not had time to buy her much of anything. My mom had driven me and Ella out to the store (remember, I still couldn't drive at this point) so that we could buy her a first day of school outfit. Mom had asked over and over if it was really all that necessary for me to be there, saying she'd be happy to do the shopping with Ella herself. I had put my foot down, though. I may not be able to walk well, but I WOULD do something right by my girls. I hadn't been much of a mother, and I think I thought that this trip to buy a first day of school dress might make up for it.

A year ago yesterday I broke the few-day silence and wrote this on JAM's care page. It was the beginning of what would be a very bad month, though I didn't know it at the time.

Written August 12, 2012 2:57pm
I'm breaking my promise not to write for a while. Our at-home family has had a good weekend, I'm feeling almost normal, and tomorrow (in addition to it being E's first day of kindergarten), big decisions will be made for Jonathan.  Since this is the easiest way to tell family & friends about Jonathan's care, and since I'm feeling alright, I write.

1. Jonathan's PDA (patent ductus arteriosus) has not closed and seems to have opened more.  If you don't know what that means and want to understand, see a short & sweet explanation here.  (This is his heart vessel thingy.)  The doctors have to make a decision on whether or not to do surgery to clamp the vessel.  They are (at least as of last week) split on this decision.  On the one hand, this could help prevent or make better lots of ills (including issues with his lungs and heart)  On the other hand, it's surgery on a wee little guy, and if closing this PDA isn't going to do much good (if it's a small leak closing it might not help too much) -- if it isn't going to help things significantly -- it should be avoided until a later date.   They are doing several more scans today, and will be reviewing them tomorrow to determine the best course of action.

2. Jonathan's kidneys aren't working so great any more.  He's had lower urine output since getting put on the starter TPN, and they are trying to figure out why.  This may be related to the PDA, may be just because of severe prematurity.  In essence it means that he isn't doing so hot on just my milk after all.  They're increasing the amount of starter TPN that he is receiving in hopes that this will help.  And they are doing scans on his kidneys.

3. Jonathan's blood sugars are not what they should be. There's too much fluctuation.  They are preventing this by slowing his feedings from taking 15 minutes to eat to two hours to eat.  This seems to be helping.

4. Jonathan is still having vent issues. His cuddle time with Steve today (first time) was cut short because after a half hour it was clear that they could not find a sweet spot for his vent and his leak was out of control.

Overall we are amazed at what these doctors can do and how early they can catch things.  It is fascinating to watch (okay, a little scary too, we wish things would always improve -- but it's good to see how well they are caring for him).

Thanks for your prayers,

It is so strange to read all that, and then look at pictures from a year ago today.  We were, indeed, living split-lives. While our son was critically ill in the neonatal ICU, we took these pictures of our daughter:

E next to the apple tree we named after J

Mimi watching from a tree.
Some day I'll get to go to school, too!

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