Day 45: Frankie Phantom Takes a Bunch of Bottles

So normally our blogs start with today but lately we have been staying much longer than the end of the blog. We hate leaving before Frankie Pharaohs is fully asleep. Last night we got out of here around 2:30. Which sucked. Why? Because it was so freaking late that Taco Bell was closed. Do you know what it's like to settle for an ultimate cheeseburger at 3 o'clock in the morning sober? I can bet the farm that no one does.

Frankie Pharmacist had a few visitors today and almost lost a finger in the process. My brother Tino dropped by when we first got her to see the little man and Frankie Phase. Since I had successfully gotten the boy to fall asleep, I decided to cut his nails since he had scratched himself the other day. Well 9 out of 10 ain't bad. That's an A- in school. The last one I cut a little short. Mom was off pumping (milk, not iron) and I thought I was gonna get away with it. Just need to pull his sleeve down over his hand, right? Well, he wiped some on his face, including his tape that holds the breathing tube on. All of a sudden I have this little Indian (feather, not dot) in war paint. Now don't think he bled out or anything, but my cover was totally blown. But then again, maybe it's like loading the dishwasher wrong, or grocery shopping incorrectly, just better left up to mom. Wink wink. Also Erin from Alex's work dropped by with a NICU survival kit complete with fun size skittles. These should be renamed frustrating size. Who really eats 5 skittles at a time and calls that fun?

My father had made us some lasagna the other day and we finally cooked that for brunch. Here is where the problem lies. Lasagna requires a 30 minute resting period after eating. Rushing to the hospital afterwards make you feel like you're walking around with an Italian cinder block in your gut.

I guess I outta tell you something more about Frankie Phrase since this is his blog and all. When we came in today, he was asleep on his belly. Well kinda. The wonderful Carlinda was sitting in such a way that his belly was gently supported by her gown. He seemed to love this. Besides that, he was in a much better mood today. Still crankie, but better. We were able to feed him a couple times by bottle and he took them well. The first one he took 33cc and the second he took 23. I really think half the problem is he is hungry. I wish we would feed him more and more often, by bottle and by feeding tube, because he has been lightly losing weight since he has been on steroids. My thoughts are because he is awake and kicking and crying all day. Frankie Phonics's omphalocele looks no different. We re-wrapped it this evening and we are right at one 5x9 xeroform to cover it. The boy has become more aware. He hates the world right now on the roids, but we still see a smile every once in a while. He loves to stare over our shoulders at the light. We put new batteries in the mobile tonight, and he was cooing and loving it. We were told by a nurse that they were going to ween Frankie Phone off of the oxygen while he was on the steroids but that information has been superseded with this, we are not weening him off of the oxygen while he is on steroids. The point of the steroids is to improve his stats. That's it. Which we have continuously seen his heartbeat drop below 100 beats per minute during his 15 minute naps. Hopefully the echo looks good on Thursday and we can start figuring all this out. Another family has come and gone across the hall.