Thursday, September 29, 2011

Update on E

Life has continued in its chaos, hence the lack of posting.  E requires my constant attention.  And I don't mean that in a "she needs entertainment" or "she'll cry/fuss if I walk away" kind of way.  I mean it in a "she requires constant suctioning" and "her big sister is too curious" and "she could throw up into her trach and drown" kind of way.  I've finally concluded that I need help during the day and possibly at night.  We are looking into a home care nurse, but it could take the agency quite a while to find someone in our area.  I feel like it's cheating, like I'm failing at being the mom, but I just can't keep going.  Most parents usually get some kind of break.  We don't even get a break when she's sleeping.  She actually sleeps through the night, but I still am up a good 10+ times a night suctioning and feeding her. 

Tangent Warning.

Lately, the most annoying thing someone can ask me is "Is she a good baby?"  It absolutely drives me up the wall.  Because really, by the criteria the general population uses, she's the PERFECT baby.  She NEVER cries (at least not audibly).  She sleeps through the night (though we don't).  She entertains herself and rarely demands to be held (chalk that up to a long NICU stay where she was mostly alone).  She doesn't need to be awake to be fed (one nice perk of a gtube).  She sleeps fine in her crib (but I wish she were next to me!!!!).  I wonder how many people would want to trade in their "bad" babies for my "good" one, huh?  People annoy me.

 So update: We had some more surgeries last week.

 E needed tubes put in her ears and the ENT went ahead and clipped her lip tie, too.  He also scoped her nose and airway.  Her nose is mostly blocked which means more surgery to open it back up again when she's older (probably 1 yo or so).  And unfortunately she has scar tissue in her trachea above the trach site from being intubated so many times.  This will make things more complicated when we try to get her off the trach.

We also have been having tons of problems with her gtube (feeding tube).  Long, complicated two months of torture and 7 different sizes of gtubes and we finally discovered the interior balloon (that holds the gtube in place) was being sucked down into her intestines.  This would shoot the food straight into the intestines and block them off so no acid or gas could escape.  This led to constant refluxing and a few episodes of throwing up blood as the balloon irritated her stomach.  Poor thing.  We decided to go with a different style gtube that is lower profile on the interior.  Unfortunately it's pretty brutal to get in place (think little hole and bigger rubber ball) so since she was going to be put under for her ears, we decided to combine procedures.  He also scoped her stomach to make sure everything looked okay (it did).  The new gtube is working great and her throwing up has almost completely disappeared.  She also is finally gaining weight!!! 

Tangent Warning.

This is yet another example of being an advocate for your child.  For 2 months we fought with doctors that her gtube was the source of so many of her problems. They blew us off, saying her lack of weight gain and refluxing had NOTHING to do with her gtube.  Even when we discovered the problem, they still denied that it could have kept her from growing.  But lookey, lookey, she's gaining weight now!!!  Fight for your kids, people!  Doctors are wonderful, but they don't know everything.  You know your child best.

Good things.  There are still lots of good things.  E is a very smiley, happy baby (except when something bothers her, then hell hath no fury).  She laughs a lot (though we can't hear it).  She just figured out how to scoot on her back and moves all over (which makes feeding her interesting).  She is gaining head control and likes being held upright more and more.  We're definitely bonding and she does love her mommy time (not as often as she loves daddy time, but A went through that phase, too).  She absolutely adores big sister and her Froggie doll and her striped jingle animal panda sock thing.  Oh! And her hair is red!!  RED! It's so stinking cute.We're still not real sure where it came from.  I think on my side it's a good 7-8 generations back til there's another redhead.  Hubby's side?  There's some red tints in hair, but no redheads that we know of.  It's been lurking in the genetic pool, I suppose.  Whatever, I'm thrilled.  It's so cute, especially with her big (giant) blue eyes.  Love that girl. 

Man, I love that little girl. Must. Give. Kisses.

So that's where we're at.  Things are looking up from the past two months of hell, but still a hard daily battle.  Oh, and teething isn't fun with a trached child.  At all.                                                           

1 comment:

Donna Jean said...

" I feel like it's cheating, like I'm failing at being the mom, but I just can't keep going."

It's not cheating and it is a sign of just how awesome of a mom you are because you are willing to admit this and look for help so that you can be an even better (and hopefully slightly more rested) mom to both of your beautiful little girls! You are doing an amazing job in such a difficult situation and you are making the best of it and you are loving that little girl healthy!
You are also a wonderful mom because you DO advocate for your children and you don't stop until you find a solution! Your girls are so fortunate to have you as their mother - not all parents will go to the mat like that for their kids - especially when it comes to standing up to doctors!
We continue to pray for you and Evie and your whole family and I am so excited to read about how smiley and happy she seems to be and the scooting it just too cute!
We will add to our prayers that you will be blessed with a quick solution to a home care nurse who will work well with your family and make your job as a mama just a little easier.