Mary’s NICU Journey

Hi Everyone.

Mary is thriving at home.  She hit the 5 pound mark on Friday.  That’s right, they don’t measure in grams anymore.  We have memorized the metric system in the past 3 months.  It’s going to be hard getting used to pounds and ounces again.

Please keep us in your thoughts and prayers, Mary is doing so well.  Thank you everyone for all that you have done.

I would like to thank Aunt Kini and  Uncle Ralph for Mary’s cute bunny.  It’s adorable, and we promise to make sure it’s safe here with her.

I would also like to thank my Grandparents, Bampa & Eva for their very generous gift.  Mary has all the diapers and wipes she could possibly need until the age of 1!!

I have put together a video of Mary’s NICU journey.  Have a great weekend everyone.

We love you all.

~ The Deome’s

Mary is HOME!

Yes, that’s right.  She is home as of Wed 4/20/2011 exactly 38 Weeks old.  First of all I can’t thank the Nurses and Doctors at Shands for all the excellent care and the piece of mind that they gave us.  We were able to leave her for half a day knowing that she is well taken care of.  Her primary nurse Shana, was excellent, and truly cared about Mary’s well being.

Jen and I are truly thankful for everyone that has kept us in their thoughts and prayers.  Please keep them coming.

Mary has come home with Oxygen, and an apnea monitor.  This is to keep us aware of her vital signs, and to let us know if she dips at all.  The doctors anticipate her to be on the Oxygen for about a month.

We love you all, thank you again for the continued support.  Have a great week.

~ The Deome’s


Christopher Holds Mary for the first time EVER!!!    CJD “You guys make great babies”

Grandma Mary holds Mary for the first time Ever!!!

Her primary doctor..  Dr. Felix!!

Her primary Nurse.. Shana!!

Mary Chillin’ with Mom

Front of the house today for the arrival!  Jen was surprised.

The mailbox :)

Update for Mary Anastasia – 4-12-2011

Hi Everyone,

I have the results of the MRI, and a few other things to share with everyone.  But first of all I would like to thank everyone for all your thoughts and prayers that we have received so far, and ask that you continue.

Mary’s feeding is at 42ml’s every 3 hours now, and her weight is …….  4 pounds 15.5 ounces.  That’s right, she is almost 5 pounds!!

She is now 37 Weeks old!!  Happy Birthday Mary!!

Mary’s brain bleed may have been the cause of some damage in her Cerebellum.  We still won’t know the extent of the damage until she hits certain milestones, such as walking, writing and so on.  They do feel confident that with this not being an option for use, Mary will learn to do these functions with the larger part of the brain, and train herself to not even try to use her Cerebellum.  We are positive she will overcome this, and amaze us as she does on a daily basis.  The rest of the MRI was free and clear of any other issues.

So far Mary has learned how to suck, swallow, and breathe while feeding with a bottle.  We have had a bit of a set back however, mostly due to the discharge process.  As they have pushed to get her feeding up there, and process 52ml’s of breast milk every 4 hours by bottle, Mary was getting too tired.  So with our concerns raised, and the PA’s concerns, they have backed her feeding to 42ml’s every 3 hours, or unless cued by Mary that she is hungry.   We have decided to let them know that after Mary has been on a bottle feed plan for 5 days straight with no residuals, and no choking issues, we can then start the process of bringing her home.

Bringing Mary Home Process:

1. CPR Class – passed

2. Car Seat Test – Not done yet

3. Feeding – Not done yet

4. Rooming in with Mary – Not done yet

We are getting closer, and closer every day, but we all need to stop, look and listen to what Mary is telling us.  Here are some pictures of our latest visits.  As always she has a bit more in her Gallery.  I have added a link to her gallery on the top right of the website.

Thank you everyone again for your support, we love you all.

~ The Deome’s

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