Friday, July 31, 2009

Off the ventilator - and over 5 pounds!

Well, after 59 days Riley finally made that one huge step we've been waiting for. This morning the nurse called Pam to let her know they were going to be exhibating Riley. It was getting to the point that if they left her on the ventilator she was going to need a bigger tube. They figured since they needed to take it out anyways, they would try her on the C-PAP (Continuous Positive Airway Pressure) and see how she did. Worst case, they would just re-inhibate her with the new larger tube anyways. Pam went down there to watch all this happen and I think it surprised everyone that after an hour, Riley was actually doing better than she had been doing recently on the ventilator. Her O2 has been hovering at 38-40% all day, which is no higher than she had been in awhile on the ventilator. As of tonight, she was still doing great. Her throat is a little sore and hoarse from having the tube in there for so long, so we still haven't heard her cry, but she is starting to make little whimpers. Can't wait to hear her belt out a good scream!

There is still a good chance that she'll end up back on the ventilator. What will often happen is she could get "tired" and run out of energy trying to breathe on her own, and will need that assistance back until she gets a little more mature. But based on how well she has done so far today, and the fact that she has grown as much as she has, she should have the necessary energy reserves to make it without going back to the ventilator.

Also, last night she continued her astonishing weight gain by surprising us and getting over 5 pounds - 5lb 2oz in fact! She's packing it on quickly and is even starting to get little rolls in her legs! Its actually kind of cute, and she's really starting to look like a full-term baby (if you can ignore the tubes all over the place).

She's back on the Nebutal (sedative), but that was to calm her down from all of today's excitement more than anything. They've stopped the antibiotics from the recent infections, so hopefully those pesky things stay away for awhile. 4 infections in 2 weeks is enough for me! They are also continuing the CPT treatments, where they put a vibrator on her chest and back a few times a day to break up mucus plugs in her lungs to clear the airways. When the ventilator was in, they would then suction them out but now it will be up to her to "hack" them up and they will suction them from her mouth. She had a little trouble at first, but is already showing her ability to adapt.

I feel bad that I couldn't be there to celebrate last night, or to witness today's events. For the first time since May 11th, I didn't make the trip to Wesley (that's 81 days in a row for those of you counting). I had to leave town for work, and figured it was better to get it done now rather than after she came home. It was tough since it was the first day since she was born that I haven't been able to talk to her or touch her...

Here's a photo from tonight. As you can see, the C-PAP is a little less intrusive, but still tons of tubes and still hides a lot of her face. The blue tube goes down her throat to her stomach, releasing some of the excess oxygen that ends up there. Orange tube is her feeding tube that goes in her nose, down her throat, and into the stomach as well.


  1. Grandpa and I are so happy that things went well today and pray that that ol ventilator has gone away for good! What a little trooper you are, Riley! We love you!

  2. Melissa KimmerlingAugust 2, 2009 at 7:45 AM

    Great to hear the good news. Can't wait to see a pic of her smiling!

  3. Such progress in such a short amount of time. I was so happy to see her last time we were home. She'll be so much bigger and better next time we're back! Hugs and kisses to you all!
    Auntie Nikki