Sunday, July 22, 2012

Day 26: Has it really been 26 days already?

Lily is doing well! Her blood oxygen levels still aren't as stable as docs would like to see, but the settings on her vent don't need to be kept terribly high, and Lily hasn't had any more bradycardias. The doctors are saying she's "stable, but still critical". We ask all the time if she's "out of the woods yet"...

"This is the intensive care unit..." they say, pointing at the sign above their head and smiling a bit. One nurse said she'll be out of the woods "when she turns 21"... guess she's right!

Lily is still on the SiPAP, her settings have been anywhere from 35% oxygen to 50% oxygen in the last couple of days - a little up and down. Sara and I are so, SO thankful they haven't needed to intubate her again. They usually have to increase her oxygen when she's being held; today, when I was holding her, her oxygen was set at 50% - she starting desat'ing after the first 30 minutes, and I had to return her to her isolette. Still, that half hour was great! Some days she has 'good holds', some days not - it's really a roll of the dice.

She's starting to pack on the weight! In the last three days, she's gained 100 grams - so she's weighing 2 pounds, 4 ounces now. She put on 50 grams last night - her biggest gain yet! She weighs 980 grams now. Today they increased the rate of her breastmilk to 6.5 ml/hr, and she's still tolerating digesting well.

All said, it was a weekend that started off rough but ended well. Yesterday, Sara and I took Addie down to the river to throw rocks for an hour - she loved that. We made s'mores in the back yard later on in the evening... today was lawn mowing and a nice midday snooze for all of us. Nice to get back to doing some normal things!

Thank you again, everyone, for the prayers, well wishes, and thoughts. Lily is doing well - there are more good days than bad - she still has a long road ahead, but having made it this far is, in a word, miraculous.

Quick rundown of the positives that come to mind...
She's on full feeds and is digesting well
She's breathing on her own, no more intubation!
She's still tolerating the SiPAP on moderate settings
No surgeries, which is amazing
No brain bleeds, also amazing
No infections, amazing trifecta
PDA closed with medicine
We can usually hold her twice a day





3 comments:

  1. Seeing how well lilly is doing makes me and the rest of the staff so happy!

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  2. There is so much to be thankful for and i appreciate that you are keeping us all updated so eloquently... I LOVE LOVE LOVE the pics.... YAYYYYYYY for Lily!!!

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  3. It's nice to see you both smiling while holding such a miracle. Wishing you many, many blessings.....Go Lily Go!!!

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