Sunday, October 4, 2009 GO!

Well, there's room at the inn. There's a room waiting for us at the Ronald McDonald House in San Diego. We can check in any time after 8:30 tomorrow morning, and we'll probably stay thru Thursday if all goes smoothly. Honestly, they haven't given us a clear picture as to how long before Bella can discharge after surgery. Heck, we don't even know for sure what day her g-tube is going in...nothing like uncertainty. If it is Tuesday, we were joking today that we should talk the docs into letting us do her dressing changes while she's still sedated! At least they'd go better than they have lately...

...the good news is, however, that Bella is knocking back her bottles while wide awake! We are back to 5 oz a bottle, but are not fortifying them with any extra formula...just the 1:1 recipe on the box. However, we're spacing the feeds out to q4 hours instead of q3, so she's still not getting the total amount she should be, but we've been ramping that up daily and she's tolerating it...for now....

...the bad news is she is no longer tolerating dressing changes. WE had to stop during the past two wound care days to give her a break because she just LOSES IT on the table and we are unable to calm her down. So, the time we made up not fighting over 60 minute bottle feeds just went into dressing changes, but at least that's only 3 times a week (Tue,thu,sat). It is really rough on the psyche to change her dressings when she is screaming at the top of her lungs and turning three shades of red and purple. It's kind of distracting, and really wears on my concentration...never mind my SOUL. I have to turn off my daddy connection to her while we are wrapping her, and just look at each limb/body part at a time as a puzzle that needs solving. It's my coping mechanism for not being heartbroken at the sight of my very broken-looking baby. I don't know how many times I've punctured my baby's skin with a needle to relive the pressure of a blister, but it's been enough times that I've named her needle "Shirley." No idea why, really...just seemed like a sick and twisted attempt at gallow's humor. Hey, whatever works.

Tonight, Ang busted out some baby pics of Ali to compare just how much they look alike, and while the pics were super cute, my heart just BROKE because I saw Bella with perfect skin, and knew it wasn't her. It was weird. When I saw pics of Ali grabbing her naked hands, I caught my breath thinking she was going to hurt them. I had to remind myself that I wasn't looking at Bella, but the resemblance is amazing in some of the pics. I was in daddy mode when I was looking at the pics, so it got to me.

On a lighter note, I dragged my carcass out of my condo today and got on my mountain bike for the first time in 3 years. I had been playing soccer sporadically over that time to stay in shape, but my back injury has pulled me out of that for a while, and I've been pretty blue of late, so I knew I needed to get outdoors and get my blood pumping again. It was a PERFECT day, clear, sunny. Beautiful. It felt great to get off the concrete again and tear it up on the trails, even if for only a short while. I'm pretty outta shape, so I didn't wanna push it and risk injury.

So, here's the plan. Tomorrow morning at 8am, we call Rady's and talk with the house supervisor to see if we can admit Bella tomorrow and if so, what time. Next, we call Dr. Eichenfield's office to see what time in the pm they want to see Bella. Then, Ang, Bella, and I will drive to SD and check in to the Ronald McDonald House first to set up shop. From there, we'll head over to the hospital and either see the docs or admit Bella, whichever comes first. We think the procedure is going to be Tuesday, but again...none of this is written in stone yet.

Then, on Tuesday, Grandma and Grandpa will pick up Nanny and Ali at our house and all head to SD together. Nanny and Ali will stay for the remainder of the week with us at RMH and take day trips to Sea World and the wild animal park, etc. The cool thing is that currently (knock on wood) Rady's is NOT on H1N1 lockdown like CHOC was last week, so Ali will get to visit Bella. We've been taking Ali out on excursions while Nanny babysits Bella lately so Ali can feel a little more included. It's been great. Now, she can be a part of this next journey, and she is very excited.

Lastly, I just shared this in an email and I thought I'd share it with you all as well... I must admit that I am scared SHITLESS to let Bella out of my sight, even though I know this team has operated on several EB kids...control vs. trust. Last round, I controlled the situation by being in the room 24/7 and not allowing a single human to touch my daughter without my consent...and it seemed to work. Now, I have to turn it over to God and trust that the same outcome is available. Sometimes it’s easier said than done. It’s not that I don’t trust God, it’s that my NEED TO CONTROL is sometimes stronger! I am, and always will be, a work in progress.

See you in San Diego!


  1. I am always amazed by your strength and the fact that you guys can still see the humor in things.
    The picture of you with Bella makes me smile :)

  2. I am the mom of a 7 year old buy with RDEB. The decision to get a g-tube placed was the hardest thing we have ever done. It was however the BEST thing we could have ever done for him. You are so wise to take the proactive aproach and do this for her. Good job on wrapping her hands!