Today was a pretty good day for Chloe despite her yucky bad start. After a night of freaking out about the fact that she's been intibated for so long, and all the damage that's doing to her throat, she starts the morning out by (of course) self extibating! Exactly what I wanted to hear this morning. Fortunately, they got her tube back in easily (or so they say). Every time that thing goes in and out I get so nervous of the damage it's doing. Patience, Cynthia.
The rest of her day was fine, though, thank God. Her oxygen settings are going down ever so slowly. They're hovering around 30-35 right now. She still desat's and needs suctioning every once in a while but it makes sense that the O2 levels in her body drop when she has phlem blocking her breathing tube. (Just imagine breathing through a straw and then getting a wad of phlem stuck in it. How much would that suck?) I spoke with the nurse practitioner today who also reassured me that she recently had babies come off respirators after 89 and 112 days and both did just fine. We just need Chloe to grow and repair some of that damaged lung tissue.
Speaking of grow - the weekend doctor decided to give Chloe 1 calorie of fortifier today. She just got back up to full feeds on Friday. Dave and I put a quick stop to that and I had a long conversation with the nurse practitioner this afternoon. She stressed again the importance of calcium and minerals that my milk just can't provide and doesn't think that we're at the point to give up on the human milk fortifier just yet. I can accept that but also want to go a little easier on Chloe. I said I wanted 3 days beetween any changes and she agreed to that. Chloe will get 1 calorie of fortifier tomorrow and, as long as she can tolerate that, shouldn't have another change until Thursday.
Kangaroo time is going just swimmingly, too. Chloe usually has wide eyes for about the first 5-10 minutes and looks all around while I talk to her and then she konks out for the next hour and a half or so. I actually held her for two hours yesterday! Such a treat! I swear, if I didn't have Dave and Solana at home to love on (and they need it, too) I could sit there all day with her. It feels just wonderful to have her tiny little body snuggled up against me. Today she was sucking on her tubes. She really seems to like to suck. I have a feeling that her pacifier will quickly become her best friend as soon as they get those tubes out of her mouth. And maybe, just maybe, she'll be the one to latch on when that time comes. Fingers crossed! I pumped 6 months full time for Solana and now two months for Chloe. If I can get Chloe to latch on I swear I'll do the happy dance and post it on the blog! Oh, and I think Chloe might be a budding musician. She perked up her O's yesterday whenever I hummed scales and arpeggios to her! Is it too early to start planning to live my vicarious life as a professional flautist through her? Just kidding!
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Love this post...Praying for her lungs specifically tonight!
ReplyDeleteI'm so happy you put your foot down with the fortifier. I know you're not a Dr., but mother's intuition is just as trustworthy in my book! :o)
Scales and arpeggios...I hum those all the time and air-play them, too! There's no way Chloe won't be a musician of some form. Maybe all of our girls will be little dancers!
Love you!
-Leticia-
Way to put your foot down!! I'm so proud of you! :) I know that her lungs will be fine. Coming home on O2 isn't so bad and in time her lungs will heal almost completely. We won't have any marathon runners, you and I, but that's ok with me.
ReplyDeleteI know how you feel about the respirator - it's a delicate balance between providing the support Chloe needs and not damaging her lungs. Slow and steady weaning seems to work best, and when she's ready she will transition seamlessly to cpap. One wise nurse told me about some horrors of kids being extubated before they were ready - very scary stuff. That being said, I was terrified by two failed cpap attempts, and when Daphne was finally extubated I made my husband drop everything in the middle of the day and run to her. At that time, she was ready. :-) As you know, I am still hesitant about big changes when it comes to Daphne.
ReplyDeleteSpeaking of music, I found this really neat link on music and how it helps preemies gain weight!
ReplyDeletehttp://www.webmd.com.video/music-for-preemies
I'm really into alternative methods, so maybe this can help you out.
Hi! Just happened upon your blog and wanted to say hello. My surviving twin (23.5 weeker)spent over 100 days on the vent, and he's doing FANTASTIC. He's about a year and a half now, and we still need a little O2 at night ONLY as pulmonary hypertension treatment. These babies are so strong, and they make us mommies strong :) Your little girl will do great, and I can't wait to keep up with her progress!
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