Brady John: Our Little Fighter

Brady’s second week of life is a bit harder to write about.  While his first week was full of ups, his second week was much more of a roller coaster.  Then, of course, there is the fact that Brady’s second week of life does not have a happy ending.

To begin the week, Jeff went back to work, and that meant I would be taking on NICU day duty solo.  Being only one week out from my emergency classical c-section, I should not have driven, but, I am stubborn.  I had went off my pain medication almost immediately after being discharged from the hospital, and resumed driving shortly after.  I remember Jeff following me in his truck, as I drove my car home from my parents’ house.  Things went well, and Jeff supported my decision, knowing there was no way to keep me away from the NICU anyways.

The second Monday of our little man’s life began with a very rough morning.  Brady started getting agitated and then started having breathing issues.  It was around shift change, and two of his primary nurses were caring for him.  His doctors and nurses were able to get him stabilized, but they had to significantly adjust his ventilator settings.  The weaning discussion we’d had just a couple of days earlier was definitely in the rearview mirror.  We were reminded that NICU progress is rarely linear.  I tried my best to keep my worries in check, but I ended up breaking down and crying with Brady’s afternoon nurse.  I had never met her until that shift, and it seemed so weird to me that I’d held it together all day with Diane (who I knew well) and then sobbed in front of a woman I had met only moments before.

One thing that amazed us and warmed our hearts was how well Brady was tolerating his feedings.  That 1/2 ml per hour continuous feeding quickly moved to 1 ml per hour continuous, and increased every 12 hours from there on out.  Each time they bumped up his feedings, they were able to take away some of his IV nutrition.  Seeing a reduction in the bags on his IV stand was thrilling to us.  We could see our little man making big progress!

Throughout the week, Brady started retaining extra fluids.  This started him on a regime of diuretic-type medications, hoping to rid him of some excess water weight.  It sounds weird to say that a tiny little guy like Brady needed to lose some fluid, but his doctor estimated that he had an extra 4 oz. of fluid on him at one point.  His weight at the time was around 1 lb. 10 oz., so that is obviously a lot of extra on such a little body.  You’ll notice the bib-like cloth Brady is wearing in many of this week’s photos – I called it his first accessory, but it was really there to serve the function of wicking moisture.

At 10 days old, Brady had his first blow-out poop.  I can’t believe how obsessed I became with Brady’s bodily functions.  I think that is a true sign of being a mom.

While we battled his fluid retention (mostly unsuccessfully) most of the week, the rest of the first part of the week was pretty uneventful.  There wasn’t any more significant changes in his ventilator settings, and his feedings continued to go very well.

Starting on Friday though, things began to change.  Brady had the doctor he’d had the weekend prior (Dr. Landrus), after having Dr. Allred for the prior 4 days.  Dr. Landrus was not happy with the fluid Brady was retaining (Dr. Allred hadn’t been either) and noticed that there wasn’t air in his gut, indicating that he might not be digesting successfully.  She reduced his feedings, started him on some steroids, and switched him to a conventional ventilator again.  She thought the high-frequency ventilator was contributing to his fluid retention.  Brady’s machines alarmed a bunch that day, and it was really the first day that I felt some significant stress hanging out in the NICU.  I left that day feeling hopeful that the changes Dr. Landrus made would get Brady moving in the right direction.

Saturday was the really rough day.  We got a call right away in the morning from his doctor that day, Dr. Mrozek.  She had noticed signs of infection that morning and said Brady just “didn’t look right”.  She didn’t even wait until his blood work came back before putting him on antibiotics.  She had also noticed damaged areas in his lungs, presumably from the conventional ventilator the previous day, so she switched him back to a high-frequency ventilator.  The conversation we had with the doctor still didn’t quite prepare us for what we saw when we arrived.  Brady truly looked sick.  My rosy pink baby now looked sallow and jaundiced.  It was heart-breaking to see him sick.

Dr. Mrozek said she technically had to call the infection life-threatening, but also implied that she didn’t see it going that way.  These words still haunt me, knowing now how our situation turned out.

The small peek of sunlight we saw that day was that Brady had finally lost some of his excess fluid, and you could see his chin again.  He had two giant wet diapers overnight where he not only wet through his diaper, but also wet through his sheet below.  Just another example of my obsession with those bodily functions.

We spent a long time with Brady that day.  While it was heart-wrenching to see him so sick, we were once again blown away watching the amount of fight our little man displayed.  We left that night around 7:30, when one of his primary nurses, Tiffany, began shift.  I’ll tell the full story in another post, but Brady had made us feel assured that it was okay for us to leave.  At 12:29 AM that next morning, we received the call that would end up changing our lives forever.  Brady wasn’t doing well and he needed us to come in.  We rushed in, not knowing that Brady would only live for minutes after that phone call.  The hospital is a half hour away, and by the time we were able to make it there, he was already gone.