Friday, February 26, 2010

Week 29...On the tube & on the move

This past week has been so hectic and stressful. Ayden still remains intubated and is hating every second of it. They have been trying to keep him pretty sedated or retrained all week in order to avoid an accidental extubation. Even with these precautions he managed to extubate himself this week with his rapid head movements that he does when he is being retrained. And so explains the never ending cycle...

When it concerns his g-tube, it opened up and they began feeds. He finally got back up to full feeds and 24 calories. Full feeds went good but when they progressed to 24 calories he began to spit up more often. When we noticed this it was at the point that he was going NPO for his bronchoscopy. Since they began the 24 calorie formula Ayden has been losing weight consistantly...He now weighs 8lb 5oz (down from 8lb 9oz) and if finally 20 inches long!...I have a feeling his newborn clothes aren't going to last him much longer... :-D

And so, onto the brochoscopy & results...I was waiting to write this post until I found out the results of the bronchoscopy. It didn't reveal any good news or give us any answers. Once again we hear the statement that they "have never seen anything like it and are unsure as to what it is or how it happened"....I just don't get why Ayden is always the exception or always has to endure the worst case scenerio....(the doctors tell me now its because most 23 weekers don't make it this far and so there isn't anything to compare his issues to)...So, the pulmonologist says that there are three different possibilities but what they found is not typical for any of them. They found lesions on the top of his mouth at the back of his throat, as well as around his vocal cords. They said that when he breaths that these areas collapse and block his airway. In addition to these lesions he also has Tracheomalacia(softening of the trachea in which the airway closes down when taking a breath). After these results were found, we were informed that he will be transferred to Cincinnati Childrens for more tests and probable airway surgeries. He will be transported on Monday morning and we have no idea how long he will have to be there. The more serious the condition, the longer the stay will be :-(....

When it concerns his hearing...the ENT consult was put in and requested numerous times but the exam was never done. We will be requesting one when we arrive in Cinci as well since the ENT specialists will be the ones who follow him there for his airway issues already. Although no additional testing or examinations were done, the audiologist re-examined all of the previous data and told us that his hearing loss was in fact Sensorineural hearing loss and not just fluid or something of that sort. His hearing aid paperwork has already been started and now all we have to do is wait for another more detailed exam.

On a happy note...I officially became an Aunt this week...My beautiful little niece Lilly was born on Feb. 24th weighing 7lb 6oz...Here is the birth announcement i made for her :-D

Isn't she beautiful?

Here are some pix of Ayden this week as well...he has not been a happy camper!

I hope next week goes a bit more smoothly than the past few weeks have been...
...Off to Cincinnati!!...Wish us luck!!


  1. We will keep Ayden in our prayers. Please let us know if you need anything. ANYTHING. Your optimism is so inspiring. I think about you guys all the time and we're are sure praying hard for your little guy. :) Stay strong. He needs you right now!

  2. We are praying fo you and your sweet little fighter.

  3. Well I have to say the fighting spirit is obviously alive and well in Ayden. :-) I know it's not a good thing to pull out your vent but all the survivors do it. You'll have to remind yourself of it two years from now when you have to put that attitude in check. I wish y'all could get a break and I'll be praying that you do. Hopefully the ENT will give you some answers and things will get better. I know sometimes it feels like the stress of it all will never end and in some ways it doesn't but you will get to a better place in time. It's just the wait in between that's so tough.