Friday, October 3, 2008

Man, a double hit

Our favorite night nurse, Marge. and our favorite day nurse, Delores, are both going on vacation as of today - each for 3 weeks!  Ouch!  These two have spent countless hours caring for our precious Esther as though she were their own - Marge even told me that she thought about Esther when she was away from work a lot and looked forward to spending nights with her.  It's such a great peace of mind for me when Esther was under the care of either of these two nurses.

We've got lots of great nurses here though, and from what I can tell, there's many of them that are looking forward to caring for Esther - she seems to be the sweetheart of the nursery.

Sorry for not updating, but the internet service was down until late this afternoon.

Here's some wonderful photos I got while Esther was napping peacefully in my lap yesterday -

And here's some of Marge doing her regular "check up" - this is done just before every feeding - listening to her heart, checking her temperature, moving her pulse-ox, and changing/weighing her diapers. Sometimes this time also includes a "naked weight" and a bath if she's a bit too fragrant (they regularly do baths on Thursday and Sunday nights, but Esther doesn't usually fit into the schedule).

And yesterday, Esther had her first hearing test - she looks a little like an alien with all the wires attached to her:

She passed the hearing test with flying colors - even surprised the nurses at how quick the test went - she co-operated beautifully as she was in a light sleep and that's the perfect state from what they tell me!
Yesterday I finally went home (it had been 12 days since I had been home last) - I took a long soak in the tub (man that felt good!), and repacked with clean clothes for me and Esther. It was nice to be home, but I missed Esther too.
Esther got to try a new bottle yesterday - it's designed for preemies and babies with a weak suck - and she's doing so much better with that. She's isn't drowning and you can adjust how fast the flow is just be turning the bottle! She isn't getting more of her milk from the bottle, but because the bottle feeding is so much easier on her, she's staying awake longer (over an hour this afternoon) and will continue to suck all the way through her tube feeding - this will help strengthen her sucking.
Today she did well at every feeding, averaging about 12 - 18 cc's from the bottle at every feed, but once she took 32 cc's! She now has "enriched" breast milk - they are adding formula to increase the calories without increasing the volume - as she hasn't been gaining weight like she should. They upped it again tonight as well.
I had a doctor's appointment today, so Jessica came down and stayed with Esther - this worked will for me as I feel more comfortable being away if there's someone to watch over her more closely - and most of all, it's great training for Jessica so she can be better equipped to care for Esther once she gets home allowing me to take naps and such.
We have had a great pediatrician yesterday and today - very gentle and takes the time to discuss her care with me and even trouble shooting with me. Tonight he decided to try using a feeding tube that goes through her mouth instead of through her nose to see if this might lessen her need for oxygen. Her right nostril is extremely small (so small they can't get the smallest tube through it for suctioning), so the feeding tube was through her left nostril, which is also small, really reducing air flow for her.
I'm really excited about this development as I've always thought that the feeding tube was a large part of why she's needed oxygen! Already she was doing well during her feed - we had blow by going nearby, but she didn't need it much. While Delores was placing the new feeding tube, we forgot about the blow by, and Esther actually held her oxygen counts really well even though we were stressing her (how would you like to have a tube shoved down your throat?). She did really well though - only complaining a little, even though it made her gag several times, but at least she didn't spit up, which I was surprised since she had just taken a bottle.

Today's praises - My energy is so much better
My milk supply has been sufficient for 2 days now - the herbs are really helping out!
Esther's being more wakeful (I just love it when she locks eye contact with me!)

Prayer Needs - pray that her oxygen needs will be reduced significantly by the removal of the feeding tube, and that the oral feeding tube will work really well for her. It's really the oxygen need that's keeping her in the hospital - if she can get weaned off the oxygen, it's possible that we can get them to discharge her even if she still has the feeding tube if we can set something up with either her doctor or a home visiting nurse. You can also pray that she will gain strength so that she can take her entire feedings from the bottle - going home without oxegyn or a feeding tube is ideal!

Thanks for all your wonderful comments and your prayers for Esther and our family - God's grace is so perfect and is sustaining use through this difficult time - yes there's tears and low times, but even then, God is near and comforting in His presence.

PS special thanks to the following:
Laura for her many visits and care packages
Cindy for her uplifting phone calls, the McDonald's salad, and scrumptious molasses cookies
Kenda and Tracy for allowing the girls to spend the week with them
Jennifer, for caring for the boys this week
Jane, for her many caring phone calls
Cara, for her wonderful visit, and bringing the much neede water (the hospital water is loaded with chlorine and I just couldn't take it any longer)
There's more, but I can get back into the nursery now and it's time to pump once again!
Good night!


  1. Dear Ruth:
    So glad to hear that Esther is improving...I feel so bad that she can't be at home with you and all the family.
    She is adorable. I wonder how much she weighs now. I read your blog every day and look forward to the day you say "we can go home tomorrow!!".
    God bless you and keep, Mary

  2. She weighed 7 pounds 12 ounces at birth. She lost some weight in the first week and started gaining finally about 3 days ago. She had a little gain, then on Wednesday she gained 1 1/2 ounces and reached her birth weight, and then yesterday she lost .2 ounces. They want to see her gaining around 2 ounces a day, so they are increasing her feeds to 65 ccs with powdered formula added to my breast milk to increase the calories without increasing the volume.
    Thanks for asking!
    I am soooo looking forward to that day too - it almost seems like it will never happen right now though!

  3. That's awesome that Esther regained her birth wt. so quickly, attests to all the loving work you have been doing for her, Ruth!!
    Way to go, Esther, passing the hearing test. That is one area many babies with DS struggle, including my son. So I'm rejoicing for you all! I loved the pics of Esther's sweet little hands. How beautiful.
    Thanks for sharing with all of us!