Going Home Soon!

Things have been running smoothly over the weekend.  Some things are really going well, and there have been some changes that make going home seem very close!

She's up to 59 cc's per feeding and handling it really well.  She'll take about 25 cc's from the bottle, and then the rest she gets through the feeding tube.  Her stamina is improving with each feeding, and that's very encouraging.  She needs to be able to handle only 65 cc's before going home, so we are really close.  We are increasing her feeds by 3 cc's per feeding, so with her 12:00 feeding today, she'll acheive that.

She still needs some oxygen, but it's the smallest setting they have.  As her stamina increases, her needs for the oxygen decreases - yesterday we had to increase her oxygen at the end of every and leave it elevated for a while, but today we didn't have to increase her oxygen at all for her 6 am feeding.

Yesterday, our nurse, Stephany, suggested I read in the book I received on Down Syndrome to see if it talked about the type of struggles Esther has with feeding and oxygen needs.  I found in the book that these babies do much better with "on demand" feeding as they'll suck better if they feel hungry and are fresh from waking up.

I had a consult with the pediatrician that was on duty yesterday, and discussed "on demand" feeding, as she was starting to wake up before the scheduled feeding time and was hungry.  I'd sooth her with the binky, but then by the time it was feeding time, she was worn out and would have a bad time with the feeding.  So he agreed that she should be fed when she woke up, or at least every 3 hours if she didn't wake up on her own.  During the night if she is really sleep well, we decided it was best to just do her entire feed through the feeding tube so she could get the rest she needed - this is usually at one of the early morning feeds - midnight last night, 3 am Sunday.

She's doing much better with the on demand feeding so I'm really pleased that we were able to move in that direction.

I also talked with him about bringing Esther home with her feeding tube and possibly oxygen as I can easily work with those and being home will be so much better for both of us - the nursery now has 2 sets of preemie twins, plus 2 other preemies, and one more baby who's on anti-biotics - it's so busy in there and the quiet times are few and far between - this morning there were two babies who were basically screaming from 4 am until 6 am - not very conductive to good sleep, if you know what I mean.

We also had a session with a speech therapist.  I really like her, she was sweet and very informative.  She worked with me on how to hold Esther during feedings in order to maintain her posture, support her head, help her establish and good sucking rhythm, teach her to stop to breath, and later in the feeding to encourage her to continue when she's getting tire to help build up her endurance.  I also learned how to work with her sucking on my finger to teach her to use her toungue properly to prepare for breast feeding when she's stronger!

This morning's 6 am feeding sent really well - she remained awake through the entire feeding, taking 32 cc's by bottle and the rest with her feeding tube.  She was actually still awake when she was all done even!

My energy level is improving now that I'm taking prescription iron, and my blood pressure is beginning to respond to the meds as well.  I'm so sleepy from sleep deprivation (I have to pump every 3 hours all day, and 4 hours at night, plus last night I stayed here all night and slept in the recliner so I could work with her at every feed if she was awake).  I fall asleep whenever I slow down - like waiting for my laptop to start, during pumping, during feeding, burping - it's like I'm narcoleptic! I think it will take me weeks to catch up on sleep once I get home!   My feed are still terribly swollen, so I'm going to see if there's anything my doctor can do for that - if I don't allow my feet to rest (ie bend them in any position for a few minutes), my toes go to sleep - one of my feet feels bruised from the swelling, but I'm not sure that it's bruised, it just feels that way.

I left my camera in the room when we left (we have to leave the nursery during shift change), so I'll add the latest photo of her a little later today.

Thanks for all your prayers - I really appreciate it so much!