Trevyn and Daxton's Extraordinary Adventure: Long overdue update...

Wow, life is crazy and I don't know where the last 8 days went, let alone the last 4 weeks!! That's right, the boys are 4 weeks old today!!!

Life has been so crazy that I have gotten way behind on my updates... I'm going to attempt to update Dax's progress to date and then Trev's. We'll see how this works...

Dax Update

So, last I updated, Dax had been taken off the ventilator. Unfortunately, he was off of it for only 2 days before his O2 desaturations became too frequent and too severe.

On Monday, 7/18 Matt and I got to the hospital and went in to wash up before seeing our babies. As I open up my sterile sponge, I always

look through the window into the NICU room where the boys are just to make sure everything is calm. It usually is, which always calms my nerves a bit. However, this time they had Dax's isolette open with the Dr, his nurse and the respiratory therapist all standing around him. Then I noticed another nurse see me and go over

to talk to the Dr. I knew something wasn't right... The Dr. then came out to inform me that they needed to reintubate Dax and we should come back in a half hour. I can't describe the feeling at that moment more than just to say that it sucked. Matt and I spent some time in the cafeteria for a while before going back up. During that time I kind of kept myself just a step to the side of sanity as a coping mechanism. When we got back up to the NICU Dax was on the ventilator

again and comfortably snuggled into his bed again. There were blankets from his bed still on the ground and it was obvious that they had to do a little scrambling shortly before we had gotten there. A very scary thought and I can't imagine how I would have felt had I been there at that time.

Since he has had so much lung issues for 4 weeks now, the Dr. has classified it as chronic lung disease (CLD) which is definitely a scary thing to think about. However, the nurse gave us some information on it which talks about the potential long term risks including asthma, more severe colds, and a heightened sensitivity to smoke and air pollution among many other things. Then at the end of the form it explains that many preemies with CLD grow up to have perfectly healthy lungs in the long run. We're staying positive and hoping for the best!

Since Dax had such a rapid decrease in O2 that day, Dr. Jain ordered a chest x-ray (check lungs for any abnormalities), blood tests (check for infection) and an ECHO (maybe a PDA issue like Trev had). From all the results we learned that he did not have a PDA. Yay! But it did look like he had a lot of fluid in his lungs and possibly an infection. Which meant he had to stop his feedings for a while and take diuretics as well as antibiotics. He was doing so well gaining weight and this was definitely a setback (he actually lost a little).

Dax getting his ECHO

Currently Dax is still on the vent and likes to simply decide not to breath every once in a while. At this point I have simply accepted it and stopped hating it. It's helping him to stay healthy and it is what he needs, therefore it's a good thing.

Since he had some fluid build up in his lungs, the Dr. started him on continuous feeds as opposed to every 3 hours. He is currently getting 6cc's every hour, 144cc's every 24 hours.

As of last night, Dax weighed a whopping 2lb, 9 oz!!! Though he did have a major diaper blowout shortly after his weight was taken, so I imagine he is a little lower....

Trevyn Update

I believe the word used by the Dr. the other day to describe Trev was "Gangbusters"... Dr. Jain always has an interesting way of saying things... She was referring to his progress and how well he is doing.

His breathing has been good and he is still just on the nasal cannula. He is now getting 24cc's every 3 hours, 192 cc's every 24 hours and he weighs about 2lb, 10oz! He even is starting to develop a little chub in his cheeks!

They did a head sonogram the other day and found that one ventricle is a little larger than the other. This is most likely nothing of concern and it's just a result of natural asymmetry in the body. We will be repeating a head sono in a few weeks to make sure it doesn't continue to get larger (could imply a brain bleed).