Sunday, July 17, 2011

I know it's just cosmetic...

But we are concerned about Aaron's nose.  Forgive me for being unhappy about what is such, in the grand scheme of things, a small, cosmetic issue.  I'm going to vent for a minute, then will return to positive Helen :) 

The doctor looked at Aaron's nose again and decided it wasn't as bad as she thought yesterday,  but it was my first time getting a good look at it.  Mommy's not happy.  The bottom of his septum, the little piece of skin that connects his face to the tip of his nose, is gone.  Not cut, scratched, indented - gone.  Completely worn away (the bottom of it, not the whole thing) by the CPAP.  The doctor and nurses believe the tissue will "probably" grow back on its own, but plastics will need to check him out to confirm.  They will then continue to follow up with him and see if any action is needed in the future to correct it.

My frustration is because this was completely preventable.  The nurses were already aware that his nose was sore as this had caused them to remove the nasal cannula.  Why weren't they checking him more often?  The nurses are supposed to check the CPAP and readjust it as necessary, and lift it up at times to relieve the pressure on the nose.  They should have caught it before it got to this point.  The NICU was so busy yesterday that I'm inclined to believe this little guy was not getting his deserved attention.  He's been so stable and the nurses were more concerned about the newer, sicker babies, at the expense of his little nose.  Don't get me wrong, the nurses are great and I appreciate everything they have done, and credit them for the boys being with us today.  Their skin is very fragile and this is an (unlikely) possible outcome when using the medically necessary device.  However, he's already gone through so much and will go through so much more, he doesn't need this added to his plate.

Again, I feel petty even being concerned about this because his actual health is doing so well.  So I'll be done for now.  I may vent again after we hear what plastics has to say :)

Now that I have that off my good Aaron news, he is off of all supplemental oxygen!  He had two hours of excellent cuddle time today, using just the blow by oxygen (a little tube blowing air toward his face).  He had been breathing room air in his oxygen hood.  When I was leaving,  I noticed that he had wiggled out of the hood - it was over his forehead.  The nurse consulted with the doctor, and they decided to remove the hood completely.  I'm assuming that this has been done by now.  In all other aspects, Aaron seems to be doing pretty well.  His PDA is probably still open, as his heart murmur is still present, but it's still not affecting him.

William should be line free as of tonight :)  He is up to full feeds!  We had good reading time today, but no holding yet again.  He had a really good morning, but continued periodic breathing while I was there.  I was supposed to hold him...until he had another long apnea/brady episode.  The middle child needs to remember to breathe! 

So overall, the boys had a good day.  We're so thankful that they've come so far in 3 weeks.  They get their weight checks tonight, so I should have those to report tomorrow.


  1. Helen, don't feel badly about being frustrated about the nose. Sometimes it is those "little" things that just kind of send us over the edge. So much of the experience is beyond ours and everyone elses control, but the things that you feel someone should have been on top of are the things that make you the craziest. That was my experience anyway.

    As far as the brady/apnea episodes- silly Noah came home having them. He was a stinker like that.

    You are awesome reading to them and all of that. I have to admit that I wasn't as good about that... just overwhelmed by the whole experience.

    Keep it up! You are doing great!

  2. Go ahead and vent! But, is it me or have those boys GROWN!?!?! Can't wait to hear the weights!