Neely's Song

Neely's primary nurse, Caty, is back today.  Although all of the NICU nurses are great, Caty just seems to know our little girl so well.  She is thorough and thoughtful,  helpful and hopeful.  We just adore her.

Neely is doing well today.  They've stepped down a little more on her morphine so that is good.  She has been battling a rash around her stoma and Broviac sites.  The area around her stoma is less red today, but is still not ready for the bag to stick.  It's tricky because she is constantly producing poop and it is irritating her skin.  We've had to be very creative in keeping the area dry.  The area around her Broviac looks so horrible!  It can never be exposed to air, so it's all taped down, but her skin is oozing from the rash and I imagine it feels pretty miserable.  I must remind myself that she will not remember this.  

Her speech therapist called today to let us know what the plan is for Neely's "oral aversion".  She has oral aversion because for pretty much most of her life, she had a tube down her throat (called a replogle) and wasn't able to suck on a pacifier or drink milk.  She associates anything in her mouth with something yucky and uncomfortable, so we have to start over with her and teach her how to suck.  The speech therapist is trying a really interesting technique.  Basically, you apply steady pressure against her skin with the pacifier or bottle, gradually working your way up from her hand to her mouth.  You press the pacifier against her palm, her forearm, the crease of her elbow, her shoulder, her neck, her cheek, her lips, her gums, and finally (if she's not showing distress) pop it in her mouth and see if she'll latch on.  We were there for her 6PM assessment and she did great.  It might be a long, slow process, but we are excited to work with her on this.  I think it's a neat idea.  I don't know what the official logic behind it is, but I assume it is a way to give her brain a different association with the nipple, in a kind of "heads up ... here it comes!" sort of way.  

In anticipation of possibly taking her home soon, Caty showed us a couple of things regarding Neely's g-tube (also called a g-button or mickey button).  We have to learn how to manage this, her jejunostomy, and her Broviac.  Thankfully, they will have us "room in" in the NICU for a couple of nights so that we can try taking care of her ourselves, with the benefit of the nurses just a phone call away.  

We met with the home health nurses and with a representative from the company that will manage her IV nourishment (called TPN) yesterday.  They seem like awesome folks and we are glad to have them on our team.  The home health nurses specialize in NICU babies and seem to genuinely care.  This is such a relief.  They said (depending on insurance, of course) they could spend several hours at our home with Neely until we feel comfortable enough to handle her needs on our own.

Besides worrying about that, I am stressing out about getting the house absolutely spotless.  I always stress about this, but now it's really got to get done!  The good thing is that the girls' room is almost done - I suppose that is the silver lining in having SO MUCH extra time before taking her home.  Josh put in some (faux) wainscoting and painted the room a sweet shade of salmony-pink.  It's beautiful ... hope Neelita likes it!  I almost feel like we need to bring in some machines that beep since she is so used to hearing that.

So ... we are hoping that soon we will be able to introduce big sister to baby sister!  I'm sure the excitement of that will wear off after an hour or so, but at least that will be something normal, something expected.  I sometimes let myself daydream of the way this all should have gone.  Right now, in some alternate universe, baby Neely is just fine and the Lucquetes are sleep-deprived and only worried about breastfeeding and poopy diapers, not knowing just how awesome that is.  I get jealous sometimes when I see people with their newborn babies.  I feel so ashamed for those thoughts and I have to apologize and remember that I got to have that experience also, with Laney.  

Well, I suppose this is our normal, our new normal.  I must learn to appreciate that, because ... Neely is just fine.  It's a different kind of fine, but considering her rocky start, even getting to discuss bringing her home is a prayer answered :)