Share Babyortyl

Sunday, September 11, 2011

Sunday update.

Some re-decorating was in order....Just making sure everyone on the floor knows Oakes is 6 months old. Thanks to Isla P, and her amazing finger painting skills we were able to make the most adorable poster for Oakes' door.


Last week, Isla wanted to bring Oakes a balloon one day. She put all of the gear on and stood at his side for about 10 minutes, but since he was sleeping she was not very interested in him. Instead she wanted to decorate his door with stickers, which we gladly let her do.

So, Oakes had a rough night last night. He was working really hard to breath. He was retracting so much that his entire body was moving as he was inhaling and exhaling. He got several doses of morphine to help to calm him down, and when I got here they were discussing possibly paralyzing him so that the vent could just do all of the work for him. They gave him some time and he settled out, but it is a step in the wrong direction. Dr. Gazit thinks that last weeks aggressive vent wean was too aggressive and his body finally hit a wall. So now the vent is back on and he is getting lots of support. Another reason that he may have been struggling is because of the narrowed airway going to his left lung. That was planned to be dilated on Tuesday, but is now happening tomorrow instead. There is also talk of getting another biopsy tomorrow while they have him in the OR. The last one was on the 30th, and they have been doing them every 2 weeks or so, so it is about time.

His trach was changed out this morning and everything went as planned. But, because of this new turn of events, we want to just leave him alone and let him rest and regain some energy, meaning Momma has not gotten to hold him....YET. We will be patient and just savor the moment when it finally gets here.

Turning your attention back to Isla for a second, just yesterday as if she were an Olympic athlete she started hurling her little body out of her crib at bedtime. At about 1am I finally got her asleep in her crib, and then at about 7:30am I heard a knock on our door and found my sweet little lady outside of our door, smiling ear to ear and covered in hand lotion that she grabbed off of her changing table. I guess we are shopping for a "big girl bed!"

Hope you are all having a great Sunday afternoon and a reflective 9/11. While I am held up in Oakes' little room patiently waiting to hold him and I have been praying big prayers for peace on earth. Praying for all of those on US soil and abroad that have lost loved ones due to terrorism and war. Praying for those who will not get a chance to hold their loved ones again. Saying prayers of thanks...for all of the miracle we have witnessed, for 6 months full of life, for our freedom and for all of those who have died and who are still serving our country to ensure our freedom remains.

Love, hugs and Sting tugs!


  1. Prayers and thoughts for Oakes today!

  2. Hope the trip to the OR went smooth. Thinking about Oakes every day. It was great finally meeting you Saturday.

  3. Slow and steady wins the race, and Oakes knows that, I'm sure. Sorry for the setbacks; hope today was better. Holding him will be so sweet. I'm laughing out loud at Isla knocking on your door covered in lotion; I'm pretty sure that Ella will be treating us to one of those mornings before too long. And I'll think of you guys, as always.