August 30, 2010

In the Middle of Difficulty Lies Opportunity

Today was a big day for Andrew.

Here he is during our morning visit:

Hi!  I'm cute even asleep!
And here he is during our evening visit:

Notice a difference?
That's right...he's on the nasal cannula and not on CPAP anymore!!!  We think he is a little confused to not have all that head gear on, but we think he likes it!  No more tubes in the mouth, (replogle is gone, feeding tube is in the nose) no more elephant nose, and finally time to shape that head so it's not so square!

Look at me!
We are thrilled, to say the least, and hopeful that he can handle this reduction in breathing assistance.  The high flow nasal cannula still provides him a flow of oxygen, but doesn't provide as much pressure assistance to help him keep his lungs inflated.  He'll have to do more work, but hopefully his lungs are at a stage where this doesn't affect him too much.  He's on a flow of 5 liters per minute right now (I was told he could go up to 8.  Increased flow gives more pressure), and has been able to keep is oxygen requirements about the same as with the CPAP machine - 20's and 30%'s.

Of course, with Andrew these changes can never be easy.  In fact, just like with his move from the ventilator to the CPAP machine, the change basically occurred after some difficulties.  This morning, J had a nice long holding session with Andrew and things were going great.  He desatted a bit, but nothing he couldn't bring himself out of.  Well, then there was a change.  Andrew began to have difficulties breathing, and even began to turn blue!  Of course, the nurses were right there to help, but they did have to use the bag on him to get him back up.  He's had a bunch of these severe desats lately "sporadic, but severe" is the way the doctor put it.  They are not sure really why they happen...it could be excess secretions causing issues or just a preemie issue (or a host of other things).  It is horrible to witness, but once he recovers he is fine.  After today's episode he laid there just looking up at us with these eyes that said, "What?  I'm fine.  Why are you so upset?"  And he was...oxygen back at 30% and high-satting away.

Well, J and I left soon after that episode.  The whole thing really freaked J out (understandably), it was the first time he's been there when they've had to bag him.  I was actually out of the room pumping when it happened, but still was a bit shaken by it all.  It's so hard when he is fine one minute, and not breathing the next.  Scary.  We went home and did some more work in the nursery and got a phone call from the hospital around 5:00.

It was Nurse M.  She said she and Dr. B had a long chat, and they wanted to get the replogle (tube into the stomach) out.  You remember that it causes him a lot of secretions, he tends to pull it out, and it seems to irritate him.  So...they decided to give the high flow nasal cannula a try (and take out the replogle)!  She told us to not be surprised if he tires and needs to go back on CPAP, but we'll see.  Last night when we visited he was doing great.  Hopefully it will last!  And, if he would stop having episodes, that would be great too! (Nurses have warned us that if it is just a "preemie thing" that they will continue for several more weeks as his brain continues to mature.  Grrrreaaat.  Can we at least not need the bag again?  Please, Andrew?)

video

7 comments:

Anonymous said...

This is terrific news! Keep on keeping on! Praying for Andrew daily!

-JLZ

Beth said...

Now I see the outfit. It still looks big on him.

Libby said...

He knows how to wave and say "hi"? Seriously...he is an overachiever!

Lara said...

I love his "high five" in the AM photo and in the PM photo his profile matches yours. :)

Krystal Spitz said...

OMG....he is TOO cute!! He looks amazing!! I can not wait until you can bring him home and I can meet him. Hope you both are doing ok. We need to get together for a fun lunch again soon....get you out for some mexican. :)

I am continuing to send happy, warm thoughts!

Kendra said...

Loved the video. Thanks for sharing!

meepitonparade said...

I think Ben and Andrew have exactly the same preemie wardrobe! SO cute!! And congrats on graduating to a cannula! It's awesome to finally see his face.

The head re-shaping happens really fast, BTW. I don't even remember seeing Ben's head looking out of shape for more than a few days.

Ben stayed on caffeine for two months after coming home (right around his due date) because his brain still wasn't regulating his breathing well. It's SO scary when they stop breathing, but he seems to be doing so well with it now.