In the meantime, Gesina is coming home soon. The goal is Monday and the only thing that can get in our way is insurance approving and getting me the equipment I need to have the feeding tube set up at home. I have "training" on that equipment tomorrow and part 2 of me inserting the feeding tube tomorrow as well. So, Gesina is coming home soon and all the concerns with the overly structured and low stimulation NICU environment will come to an end. I look forward to finding our own schedule and activities we can do together. Until then, I'm going to try to relax, sleep, and enjoy my last "child free" weekend :-)
Friday, January 24, 2014
Emotionally tired but hopeful
After 12 hours of being awake and fussing last night (2 pm to 2 am), Gesina finally fell asleep. I figured she had earned her sleep and gave the nurses the go ahead to just feed her using the feeding tube for two of her feedings (the ones she was sound asleep for at feeding time). And just to clarify, when Gesina refuses the bottle or doesn't finish it, she gets fed but through the feeding tube. So she never starves but the feeding tube has the potential of becoming a crutch for all of us. I can't get upset with the nurses for using this crutch as I did yesterday too. I couldn't bare to wake her after she had been up fussing so many hours. I don't know if my and the nurses motivation to use the feeding tube are the same, BUT I will clarify with the doctors how to approach the feeding tube when Gesina is home. I'll let them advise me on the balance between how much time/effort should be spent helping Gesina overcome her nursing/bottle issues and when to use the feeding tube. I think moving to an on demand schedule of feeding versus the current 1-5-9 schedule she is on will help with the feeding issues. My mom found a support group on Facebook that had many NICU graduates that found their little one eventually just "got it" when it came to the bottle. That something just clicked and they figured it out. I look forward to the day when it clicks for her.
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YAY!!!! Awesome AWESOME news:) I'm so glad you clarified the feeding/tube thing. Me and Mak were pure riled earlier! I'm so, so, so glad she's coming home! Hopefully the INS folks will agree, keeping our fingers crossed on that front! Finally, after all these weeks of heartbreak and stress, your Beautiful baby girl is coming home!
ReplyDeleteWishing you All the good fortune you need and some to spare;)
I know the nurses are busy, I know they have an enormous responsibilities. They only have so much time in a day. But it just breaks our hearts that she has been so alienated from family and precious bonding time:( I really didn't mean any disrespect, we're just so upset that all of this keeps setting you back:(
Happy days are coming, just a few days to go!
Dang, I keep meaning to gush over her eye lashes!!! WOW, her eyes are just mesmerizing...:) Those lonnng lashes framing those beautiful eyes are gonna keep ya'll busy runnin' the lil boys off...!!!
ReplyDeleteI remember having to go to swallowing therapy with my son even though the brain scans didn't indicate damage to that part of the brain. I'm not sure if the therapy helped the most or the growing up did, but he is doing much better now. The stomach tubes do seem to go with any sort of time in a NICU. You will stay on top of it if it gets worse, and eventually she will get it. And don't worry so much about the smiling. Those drugs she is on are probably making her sleepy, and sleepy babies get cranky. I try not to worry too much about those developmental milestones they are supposed to meet. I just try to bring it up with professionals who can help when I notice them. It seems like everything David did was late, but he eventually did it in his own time, sometimes with help. And the help he got made his brain adapt, and the adaptation sticks. You've got five years of extreme brain growth, and if your child is late for a milestone, therapy can work miracles. Oh, and everyone is terribly jealous of his eyelashes as well. :)
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