Coming Home! Hopefully!

We have great news!

O is supposed to come home tomorrow if she continues to manage to get her formula quota consumed.

It is difficult to get her to stay awake to take it all, but we manage to do it.  We feel like we are forcing her, and that we are. 

We will have to continue this until the doctor says we don't.  But she is low birth weight and struggling gaining. 

Prayers please for our success and hers, too!

We were busy getting the finishing touches ready for O's homecoming so that is the reason for the short post yesterday and no photos today.

Recent highlights:

Getting tube out of her nose!  (Think of that Thurston!!!!)

Car seat test.... she passed!

First Physical Therapy appointment.  Mama O and Daddy O learned which exercises to begin to strengthen and stretch muscles.  We also received special instructions for tummy time.  O has gained in strength so much since birth.  During tummy time, she can pick her head up and turn from side to side.  Her legs are strong.  Her proximinal muscles are weak.  But she is going in the right direction.

She is beginning to arouse herself to eat.  She actually will let our a little cry sometimes when she is hungry. 

Her endurance still is not very good. She gets tired too fast.

When she comes home we will have to make sure that we feed  her every 3 or 4 hours whether she wakes up herself or not.

Car Seat Test photo

More tomorrow....

O got her feeding tube out!!!  Eating well!!!

She passed her car seat test, too!   90 minutes hooked up to monitor.

Way to Go O!

Someone has a full belly!!!  :-)   

O's ranking for feeding by bottle was:  Meets or Exceeds Expectations!

Keep up the good work O!

We did all of her feedings and they all went beautifully!

Notre Dame Fan already!  Daddy has taught her the Victory March!
The night nurse moved her feeding tube to her nose from her mouth. This was to allow for easier feeding.  It worked!  It makes O sneeze though.  If O continues to eat well, she gets her tube completely removed.  This was the first day that we ever saw her chin.  It is cute, don't you think!  It does appear to be small as is typical for a person with Down Syndrome.
Although O keeps her mouth closed and her tongue in as a typical baby does, here is a photo of her being silly.  Actually we rarely see her tongue and usually have to pry her mouth open to feed.

Bitter-sweet Milestone Day

Today we reached a bitter-sweet milestone.  The birthmom signed her papers indicating that she will not be parenting O.  We ask for your prayers for her. This is never an easy thing to do, even when the birthmom knows that it is in her best interest and in the best interest of the baby.  We so very much admire her strength and her sweetness. She has done so much this week to help us to feel comfortable with being given the great privilege of raising her beloved daughter.  She wants us to be the parents and feel comfortable that this is what she wants for her baby. She is grateful to us for parenting O.  We just feel so privileged!!!!  We cannot imagine a more perfect daughter!  We love her more and more everyday!

Mama O gave O a bath today.  In the photo above and below, she is all clean, bright-eyed and happy!
Just some time looking at Daddy O and Mama O before going back to sleep. She did much better eating today. The occupational therapist (OT) gave us great tips to keep her more alert during feedings.  Her sucking is strong and in good form.  All the reading about Down Syndrome is paying off as we understand very clearly what the OT person is saying having done our reading ahead of time.
Here is our little apple blossom stretching out.  She now weighs 4 lbs 8.3 oz. !
We are taking one day at a time and just enjoying every moment that we are with her!  Today we were in the NICU for 9 hours. Usually our days will be shorter so that we don't wear ourselves out before she comes home. The bath delayed our departure.

Thanks to every one for your support and prayers and emails. I try to keep in touch as much as possible, but I know that I don't always do as well as I would like. But know that we so very much appreciate all the support and emails and facebook comments!

Video on You Tube

Yesterday was a better day.  

We will still be in NICU for some weeks, but things are going smoothly.

I was busy making this movie yesterday.

O's First Mini-Movie

Enjoy!

Set back day

We were spoiled by so many good days in a row.  Today was a tough one! After days of nurses who were 10's, we had a nurse who was.... not a 10.  Her young intern was a 10 though!

O was not very interested in bottle feeding today. She was more interested in sleeping!  She would eat a very little, then would get tired and not want to work so hard any more.  The doctor said that this is typical pre term baby behavior, but that it may need more help to be overcome because of the Down Syndrome low muscle tone.  Tomorrow an occupational therapist (OT) will work with the three of us.  

She will not be going home until she is feeding by bottle completely.  So, O is already teaching us to slow down in our expectations and just enjoy each day.  And she is SO VERY enjoyable!!!!  We cannot believe what a neat kid she is!  She is worth everything!!!!!
O had her follow up echo cardio gram today.  We should hear the results tomorrow. The first one was good, so we are hopeful.  She did not care for the test, but as usual she was a really brave girl.  I tell you! She is the coolest kid! Yes, we are probably incredibly biased!!! :-)
Here is our little angel sleeping instead of eating.  

Tomorrow  will be a better day!

But everyday it is really wonderful to be with Baby O.

When she opens her eyes and looks at us it is The Best!