Update for Mary Anastasia – 4/7/2011

Hi Everyone,

Mary is now 36 Weeks old Yesterday!!

Just some small updates today.  We don’t have the results of the MRI just yet, as the Radiologist has been on vacation, and will probably be done early next week.

Mary’s feedings are now 43ml’s every 4 hours, and she has started nursing from Mommy!!!  She is also doing most of her feeds from the bottle.  She is doing so good.  Her weight is now 4 pounds 9 ounces.  Gaining weight every day!!  She is amazing.

We have completed our Infant CPR instruction and passed the test.  We’re just waiting on how Mary does over the weekend, as they said it is possible she will be coming home on Monday!!

Here are some pictures of today’s visit.  Have a great rest of the week and a wonderful weekend.  Thank you for your continued support and prayers, we love you all!!

~ The Deome’s

Update for Mary Anastasia April 3rd 2011

Hi Everyone,

We have some exciting news for you tonight.

Mary is now being fed by the bottle 3 times a day.  She is currently at 40ml’s every 3 hours and she is tolerating this well.  They have removed the MCT Oil, and still have her on the protein supplement.   She is growing out of the diuretics that she is on for her PDA.  They expect her to not need them in a few weeks, as she is not showing signs that she currently needs them.  Currently Mary is 4 pounds and 7 ounces!!

The discharge nurse is prepping us for the big day.  Yes.. I said discharge.  Mary is doing so well they have started the ball rolling.  They are concentrating on her feeding.  She needs to eat by bottle every day, if she can accomplish this, she will be sent home on Oxygen, and that they only expect her to be on for maybe a month at 21%, which is room air that you and I breathe every day.

Jen was able to “Kangaroo” Mary today!!  What a great day for Mommy and Mary.  Here is a pic of that.

If you notice the sign.. the 3 main concerns are now; Feeding, Breathing, DISCHARGE

Her “Condo” went convertible on us!!  That’s right she is now maintaining her own temperature, and is in an open crib!!!  What an amazing girl.  She just keeps proving everyone wrong.  35Weeks old and she is doing everything on her own.

Here are some other pictures that we have taken throughout the week.  Also what pictures I don’t upload here I have uploaded to her Gallery.  Please check them out.

Thank you for the continued thoughts and prayers.  We wouldn’t have been able to make it this far without you all.  We love you!

~ The Deome’s

Update for Mary Anastasia HAPPY BIRTHDAY!!

Hello Everyone!

I hope you’re having a great week.  We have some Deome news and some Taylor news today.

Yesterday around 10AM MST Roger Taylor, Jen’s father passed away.  Please keep Jen and her family in your thoughts and prayers.  This is a trying time for all of us.  I would like to thank everyone for our support, but now I ask that you provide support for my other brothers and sisters on the Taylor side for their loss.

Mary is still off and on with the PD Flow nasal cannula.  This is providing 24% Oxygen to her, however they keep trying to ween her from this, and she does very well in short bursts.  at this time her tiny body doesn’t have enough reserve to make it past 24 hours.  This will change, as her heart and lungs mature.  We have to remember she has been on 3 different ventilators, and the PDA in her heart isn’t fully closed, so there is still some blood not getting the full benefits of the lungs work.  More to come on this, as Dr. Felix is very optimistic that this will just take a couple more weeks to develop.

She is on 35ml’s of Mommy’s liquid gold every 3 hours and she is tolerating this very well.   She is also having about 5 stools a day, and there are no signs of GI stress or stomach issues.  They’re taking about removing the MCT Oil, and switching it up with a protein additive to help her grow muscles!  She’ll be lifting weights in no time!  Mary has been feeding from a bottle 1 time a day.  Jen has been doing the handy work, and today Mary took 22ml’s by the bottle and did very well.  Which brings me to my next update…..

She hit the 4 pound 1.5 ounce mark last night!!!  Congratulations to our sweet daughter for making this milestone.  She is still about 1 pound behind where she should be for her age.  Speaking of age.  Mary is now 35 Weeks old today!

Roger Taylor Jr, was in town for a convention yesterday, and had to fly home to Utah early to be with his family during these hard times, but before he left today, last night he drove 2.5 hours to meet us in Jacksonville so he could see his special niece.  I have some pictures of the event, and tonight I leave you with them.  Please keep us in your thoughts and prayers during these times.  We hope you’re all doing well, we love you all.

~ The Deome’s

Roger visits Mary Anastasia @ UF & Shands in Jacksonville Florida

Mom feeding Mary, Mary holds up the I Love you sign!!

Mom and Dad hanging out with Sweet Mary.