Well, the days have gone by, and Miks is still doing well. She feeds well- seems to chow down extra before bedtime, which is fine. We routine feed her, interspersed with a certain amount of demand feeding. It works for us!
She continues to sleep in our bed. A real shocker for me- I have always been dead against my babies sleeping in my bed! We tried 1 1/2 nights of her sleeping in her own bed. But, frankly, it was a disaster. She was so restless, we were up and down 100 times... it was exhausting. At least if she fusses in bed (ours) we can simply calm her while staying where we are! Way better option (but shhh... don't tell anyone I said that!).
She has had some amazing alert days. She seems to know our voices- and will follow the sound of Russ' voice as he moves around the room. The other day I put her mobile on, so that she could listen to the music, which seemed to calm her (not that she is a fretful baby, but still). Then, we actually put her in the cot under her mobile... and she actually followed the movement of the mobile with her eyes, as it turned around and around. Amazing!!
On day 13 we took her to the pediatrician. Doctor said that her heart has no sounds of failure, and overall she is very happy with Mikayla's progress. She hasn't yet got back to her birth weight. She is currently weighing 2.38kgs. But we can see that Miks has put on weight. Mainly by her cheeks... they have got quite chubby! And very kissable!
Doctor has asked us to talk about certain decisions we need to make going forward. Because T18 is not life sustaining, and she has a propensity for picking up illness, which they think we affect her upper respiratory functions, we need to think about decisions such as how much and what kind of treatment we give her, at what point we intervene, and at what point we stop intervening. It was a really difficult conversation... ultimately it's like we're deciding on the life and death of my daughter!! It's wrong!! *Sigh* I just don't know that I have the capacity to handle this. I know God says He won't give us anything more than we can handle..... but the truth be told.... this is destroying me.... inch by inch.
Doctor has recommended physio for Mikayla to keep her joints flexible. They don't want her muscles to shorten, due to her pulling her legs and arms in- it will make Miks uncomfortable, and will make changing nappies etc for us difficult. A friend of ours, a physio, came around and did a session with us, to show us how to do the physio on Miks. Miks was so good. She was relaxed throughout the session, and was super relaxed afterwards. What a cute little chicken!
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