Day 35: Preparing for heart surgery. (Plus pictures from one year later)

A YEAR AGO:

Written August 21, 2012 1:22pm

Jonathan's heart surgery is scheduled for tomorrow morning at 9:30 am. The doctors decided after much discussion this morning that the benefits to the surgery to close the PDA outweigh the risks.

Part of the reason for lung decline over the past few days (in addition to intubation) could be due to the extra fluids he's been given to improve kidney function. The doctor said that typically they like to keep these intubated preemies a little on the "dry" side in hopes that it will help keep their lungs dry.  That didn't work for him as he needed MORE fluid to get his kidneys functioning properly.  Thus, it is not entirely surprising that with improved kidney function he also has extra fluid in his lungs.  They do not suspect pneumonia as the area that is congested moves from one chest scan to the next.

Because of his lower lung function (and in anticipation of even lower lung function as he recovers from surgery), Jonathan is being moved from the conventional vent to the oscillating vent.  In terms of ventilation this is considered a step backwards.  That said, it seems to be what he needs most now.  This new vent will give him quicker breaths of air.  Since he is currently on the highest pressure setting for the conventional vent and even so his blood gasses are not improving, it is clear that extra help from the more invasive vent is necessary.  We hope that with the oscillating vent he will be able to maintain good blood gasses without the same high pressure.

Since he is on the highest pressure possible from the conventional vent, he has no place to go if his breathing starts to decline in or after the operation.  Since initially post-surgery things are harder on the infant, and cardiovascular function gets a bit worse before it gets better, we have every reason to believe that he WILL need more help breathing in the next 48 hours.  Thus, it is good to get him on the vent now.  We hope he responds well to it and that he's in good shape for surgery tomorrow.

We were hoping he'd hit 1 kilo last night, but he still sits at a weight of 975 grams (or 2 lbs, 2 oz).  Perhaps we'll have a 1 kilo baby by tonight?

On a lighter note, he was introduced to a pacifier on Sunday and he LOVES it.  I have NO idea how he manages to get that thing in his mouth, what with the feeding and breathing tube already in his mouth, but he finds a way. Yes, it's a standard sized pacifier.  It's the kind that easily comes OUT of the mouth (the green kind you see in the hospital often) but that just gives me an excuse to help him hold it in.  Since holding him won't be an option for a while (until he's off the oscillating vent), I'm grateful for this one small thing I can do to help calm him.

Thanks for your thoughts and prayers, thank you for walking with us in this, for mourning with our mourning and rejoicing with our rejoicing. The ups have so far outnumbered the downs, and we feel blessed.

---------------------------------------------

TODAY (2013)

At physical therapy J was not interested in practicing his sitting. We think his belly was hurting him. Every time we'd try to sit him down, he'd refuse to bend at the hips. We thus spent a lot of time working on bringing hands to mid-line, rolling, and grabbing feet. Then, since our focus at PT is getting him to be mobile, we made a bit of lemonade out of his stubborn lemons. and J got to WALK. BY HIMSELF!  Okay, so with a fancy walker that was set to the absolutely shortest setting (because how many four month old sized babies walk?) The walker barely fit him, he seemed to think that the handle bars were his goal, and kept staring at them and taking steps to bring himself closer to the bars (which were about 1/2 a centimeter too far away for him to reach) but then when he figured out what he was doing, he had a blast. Since (while physically small) he's cognitively somewhere around a year, THIS is just the sort of thing he's been dying to do.

ZOOOM!  Ready for take off!

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:

FIRSTDAYOFSCHOOL FIRSTDAYOFSCHOOL!

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!