Days 250-252 Weight issue weighing on my heart

We should never compare our children. Ever. But I can't help this one:

You see, the issue is that Mikayla is still TINY. Now, most T18 babies remain small, certainly smaller than their non-T18 peers. But if I look at Mikayla's size at 8 months, compared to other T18 babies when they were 8 months... it's not so much HOW MUCH she weighs, in so much as how very thin she is. To be honest, I haven't actually put her on a scale recently... which I will do (but she's sleeping right now... and you know what they say about sleeping babies!)... but she really is THIN. Her little bottom is so skinny, that her bones, at the bottom of her back actually stick out. Much like an anorexic. Her ribs are very visible, and her knees have absolutely no meat on them whatsoever. In fact, her knees are wider than her thighs and calves, again, much like an anorexic. Sometimes she looks completely starved to me! Although I will add that after a meal, her tummy gets really "big".

It's not from lack of trying. I feed her as much as I possibly can, but normally she doesn't take more than around 90ml... if she has a "hungry day", she may take up to a MAXIMUM of 120mls. And she does this every 3-4 hours, even during the night. I know it's not enough for a non-T18 baby of her age- but unfortunately those rules don't apply.

We've tried some solids, and I do give her cereal or purity once in a while, but my experience is that she gets badly constipated when I do that, and I also can't bear to see her in so much pain (aside from the fact that it also impacts us and our sleep patterns, because on some nights when she has been badly constipated, she has basically cried the whole night)!

And here's the clincher: I try feed her more, but she actually PUSHES the bottle away, by moving her head from side to side, and brushing the bottle away with her hand... and gets really cross if I get forceful (I've tried). And when I have managed to force more food down her, she actually vomits it up... it's really like her little tummy can only take so much, and that's it.

Russ and I were also chatting about it last night, and we were commenting how her upper body is definately stronger than her lower body... and while she does move her legs, she seems to have very little strength in them.. in her lower body in general... and certainly has no fat on them.... in some places she actually looks like she has loose skin... again, much like an anorexic. I really don't know what to do about it. Am I slowly starving my daughter?

I might be being a little over dramatic. But, while she has developed little "cheeks" on her face, which indicate a bit of fat, no one else sees below her clothing... and she really is thin.

My biggest fear is, and always has been, that she would suffer. It is my most whispered prayer, that God would spare her of any pain or suffering.

I am feeling very alone at the moment on this, and really don't know where to turn.