Wednesday, October 1, 2008

Day 12 - lots of photos

I've been taking photos - really!  I just kept leaving the camera in the room so I couldn't get the photos!

Today's update - she's pretty much the same as yesterday, with one improvement - she's been more wakeful - staying awake through almost every feeding - even through the feeding tube!  This means she's getting stronger, plus she's had lots of sucking practice during tube feedings - she sucks on my little finger or the pacifier.  This is called "non nutritive sucking" and is good practice for her as she only has to be sucking and breathing.  Nutritive sucking is more of a challenge for her as she has to suck, swallow and breath.  She may be too tired to drink from the bottle after 20 cc's, but she still has strength to suck on my finger or the pacifier and this will help strengthen her mouth and help her to get her rythm better.

Tomorrow we get a new pediatrician, and I'm praying that he will be more encouraging that the one we've had this week so far.  We didn't have a pediatrician with any of our other children, so here we get the ones that are working the hospital from a group of pediatricians/physicians.  Tomorrow I'm going to look into the possibility of finding a pediatrician who is good with Down Syndrome and see if we can get Esther cared for by one pediatrician so she gets consistent care.

So here's the photos from yesterday and today:

Esther is now 12 days old!

Esther loves her bath times - hardly ever fusses and it really wakes her up!  She wasn't crying here - Joni, her first cousin once removed, and Esther's nurse today, had just "baptized" her and she was just reacting to the sprinkling on her face - she took it really well - didn't cry at all!  I think it looks like she's saying "hey - cut that out!"  LOL!

Here's Esther being fed by her feeding tube - the tube hangs from the lamp, and she's practice sucking on my little finger.

Here's Esther sleeping through her feeding - sometimes she just won't wake up - this means she really needs her sleep as we take all her vitals and change her diaper and she is still asleep. This is time for her to get some good rest, without missing a meal! We try to get her to suck on a pacifier as it helps with getting the milk through the feeding tube and helps prevent her from gagging as sometimes she feels the milk going down.

I had a much better day today - I basically ignored the pediatrician, got to go out to lunch with Daryl (I'm really missing him!), and I even got a good night's sleep - 4 hours, plus 2 hours, plus 2 hours - I even slept in until 8:45! I also got a short nap as well! Sleep can make such a big difference!

Thanks to all who posted after my pity party yesterday - reading comments is such a pick-me-up! I also got lots of phone calls so I didn't feel alone today!

Yesterday I finished crocheting Esther's blanket (it's in the photo of her in her bed along with the sweater and hat I made for her) and now I've begun working in her baby book, so those times between pumping/feeding/caring for Esther that I'm not needing to sleep or blogging, I take a few minutes to fill in her baby book!

See you tomorrow!


  1. Ruth, I am happy to hear that you had a better day today. Hope you find a pedi that you like and will be a good fit for your family.

  2. Ruth, she is SO beautiful. I fall in love with her more every day. Lots of hugs and prayers coming your way across the miles!! :)

  3. Ruth,
    I just found your blog today, and I've been reading about your beautiful baby!

    I hope you are able to find the right Dr. I know God has a plan in all this, and I know it can be difficult to see, at times...I'll be praying for you....My ideas are....Can you get a AVENT hand pump? That is the only one that ever worked for me. With 6 kids, i've tried several, but I could get maybe 1 ounce with another pump, and try the avent and get 9 is just the only one that gets the rythm right. Also, I want to say, I've seen babies go home with O2, pulse-ox, and tube feedings, So I'll keep praying that your Dr. will soon be comfortable with sending your sweet baby home with you....Love Ya, Sis! Take care of yourself!

  4. Hey sis...she's so cute. I am glad things are looking up. I am sending a gift in the mail tomorrow.
    You are doing a great job and she is blessed to have you for her mother.
    I love you!!!