Friday, January 28, 2011

Catch-up and update part 2

So still playing catch-up. Now that I'm able to hold you as much as I want I spend all my free time doing so. I love it but it cuts way back on my Internet time.

We have been working with our insurance to get us transferred to Loma Linda. At first their answer was NO, then well maybe, now it's yes but we are waiting for a bed.

We hope that we will be moving by Monday but considering we are working with an insurance company I will believe it when we are walking out the door.

For now CHLA continues to work on helping you progress and so far so good.

You remain off the breathing machine, over 60+ hours now, and although your oxygen labs aren't perfect they are pretty good and now they will start trying to wean you off the oxygen all together.

You are on 2 liters now, soon they will try 1 1/2, then 1 and so on. The plan is to take it slow. Considering the issues you have had we are more than OK with slow and steady.

You are getting, and absorbing, 41cc's of formula/breast milk at a time now. They tried 47cc but you spit up a bit so they will stay at 41cc's for now and try to increase the amount again later. 41cc's is amazing and so we are really happy with your progress.

Knock on wood but you are showing no signs of acid reflux, a big problem with a lot of CHARGE babies, and we hope you will continue to do well with the eating/absorbing. We need to get some meat on those chicken legs!

We have started working with an occupational therapist to see if we can get you eating by mouth. IF we can this would be the next biggest hurdle to getting you home. We are taking it one day at a time as many babies with heart/CHARGE/clefts/medical problems have issues with being able to eat my mouth.

They are working with special nipples and bottles for your cleft. The OT feels you have a strong suck and show interest which is all good. You are still working on the swallow part and tend to have a "holy heck what did you just put in my mouth" look when we give you the bottle. Still the OT thinks it's a good start and is hopeful that with some practice you will get the hang of it.

I just love that the instructions are in Chinese

Assessing your suck strength

See the surprised look you get when we give you the bottle?
A little formula in the nipple wasn't so bad
Auntie T came for a visit on Monday and finally got to hold you!
Sharra Ackerman and family sent us fruit! It's amazing how much we are craving fresh fruit

Team Lozano thanks you and says YUMMMMMYYY! I saved the base. It will fit right in with a 3rd birthday we are planning.

Last night the nurse brought me a big old tub of warm water and I got to scrub you all clean. Afterwards I dressed you for the first time. Don't you look sharp little man!

So the next few days we are going to work on getting you to eat by mouth and get you transferred to Loma Linda.

Saturday Granny is coming to take care of you so we can spend the day with Pierce! We got to spend a few hours with him yesterday and can't wait to see him again.


sherthebear said... Best Blogger Tips

Mason you are doing great. Keep up the good work. You look very handsome in your new outfit!!

Anonymous said... Best Blogger Tips

First of all Mason is adorable. I have been following your blog since I heard about your family on Couponing to Disney the day before you had the baby. I am writing from St. Louis, MO. I know you wish progress would come quicker but he appears to be doing great. It will be great when you can get him home and go back to the boring old days of life. Your family is in my daily prayers and I look forward to seeing pictures when he gets to go to Disneyland and then Disney World. If there is anything we can send to help your family, please do not hesitate to let us know. Right now though it appears all the prayers we have all been sending are working. Take care!

Miss S said... Best Blogger Tips

Completely adorable! Looking snazzy in his new clothes! Thinking of you every day Mason! Love you!