Post by trixi282 on Jul 8, 2015 21:11:57 GMT -5
Since MissMusic asked, I thought I'd post a little update on how Emmeline has been doing lately. I know not all of you are in the FB group, where I've posted a few updates here and there, and also those not in the group may not have the caringbridge site link... so here it goes.
Emme is doing really well, she's made some huge strides the last few weeks. She went from being intubated a few weeks ago, to cpap (forced oxygen), and then down to a high-flow oxygen (blended off the wall to help humidify the air. Just this weekend she was taken off the high-flow and has graduated to low-flow oxygen, which is like a very light breeze in her nose. They've adjusted the flow of that down to basically a whiff! That alone is huge for her with her itty bitty lung on the right side!
The lungs themselves are doing well. Her left has proven itself by taking on the brunt of the work. The right lung (where the mass was) is still underdeveloped, and potentially will be small always, but it has grown and it is looking good even though it is small... and missing a lobe! The lungs do have a lot of time to continue developing, so hopefully it will continue to grow and gain volume. She's doing so well breathing on her own though, she just breathes a bit faster than a normal baby her age/size.
Her medications have been slowly weaned down. She's down to only one pain med which is at a .02 dose and only given (orally, through her feeding tube) every 8 hours. She is also on methadone to help ease her withdrawal symptoms from her current med and the previous 2 that she has weaned from. They'll leave her on methadone until the Ativan is gone and then start weaning that as well. Lately she hasn't really shown any signs of withdrawal which is great.
As for feeding, she still has her feeding tube, and she's now up to 3oz every 3 hours.... yesterday though, on her 6 week birthday, she had a huge milestone and she took her first bottle!! They started with a small amount, and she took 20ml (just over 1/2oz) which is great for her. She had serious oral aversions when Occupational Therapy started working with her, and although she'll take a pacifier occasionally, she still doesn't love it. So to take a bottle and to eat that much is great! Today they tried again and she took 25ml with ease. She fell into a really nice feeding pattern fairly quickly. They're pacing her so she can learn 'suck, swallow, breathe' which she is still learning to do. They want her to feel in control, not feel forced.
I'm so proud at how far she's come in just 6 weeks. Before she was born I didn't know what we had in store for us, and couldn't imagine how long we'd be here... if it would be a few weeks or a few months. But now seeing where she was and how far she's come, I'm so impressed. She was really sick when she was born, and I can't believe how much she's dealt with already in her short life!