Monday, July 30, 2012

Day 34: A good day!

Ever since her brain scan came back, I've hesitated to write "Lily is having a good day". No matter how positive, no matter how stable, no matter how relatively boring the day is... I just can't bring myself to write it. How can she have a good day with possible brain damage?

But the fact is, she's the same person she was the day before the brain scan. And no matter what happens, no matter what test results come back, no matter what information we receive, she will ALWAYS be the same person. And even if she does turn out to have white matter damage, she can still be happy... she can still have fun... And she can STILL have good days.

So, today they changed her eating pattern from continuous feeds to what's called "bolus" feeds, whereby about 14 mL of breastmilk is injected into her feeding tube over the course of 30 minutes, every two hours, instead of sending 7.5ml/hr continually through the tube. They move from continual to bolus feeds to get her digestive tract on a "schedule" - to expect food, digest is, and wait for the next meal. Just like us! And... she is tolerating the bolus feeds well! The fact that her digestive system is working well is the biggest thing she has going for her right now. She's growing rapidly, and the three pound mark is in sight... Just 7 ounces away!

Doctors ordered another lung x-ray this morning, since they've had such difficulty weaning her down on the SiPAP ventilator's oxygen setting. Doctors did not see anything new in the x-ray, which is really fantastic. No pneumatocele, no lung collapses, nothing apart from the RDS that we knew she has been fighting. Unfortunately the RDS has not cleared up at all... But it's not getting worse, and she is fighting it with all of her might- after all, she's still on the SiPAP!

What else... Lily turned her head for the first time yesterday! She was facing left, we walked away for a minute, returned - and she was facing right! Tremendous! This whole experience really makes you appreciate the little things... one month into life, my daughter turned her head from left to right. This means she has the ability - the muscular strength and coordination - to turn her head. Hallelujah!


I held Lily for about an hour and a half this evening. She didn't desat too frequently, maybe once or twice. She looked straight into my eyes for about ten minutes - pretty amazing. No words to describe it! 


Lily gained another 40 grams today, so she weights 1220 grams now, or 2 pounds 12 ounces!


So, I'll say it... 

Lily had a good day!






4 comments:

  1. Great news! Go, Lily! Continuing to pray for all of you.

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  2. ...and she can still know our unbounded love for her.

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  3. Love knows no bounds, no matter who is having a good or bad day. Love is eternal, patient and kind. Love can turn a bad day into a good one. Lily knows that you both love her so very much and she is fighting really hard to show you how much she loves you back. GO LILY GO!!!

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  4. We will continue to pray for Lily. She continues to be a great blessing!

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