Tuesday, April 9, 2013

6 Months Old

*Edited to say - Louisa will be 7 months old on Saturday...  I wrote much of this over the course of this past month and, while some of it no longer applies I want to keep the post as it is to document her babyhood as it happens. 

My noodle is half-way through babyhood, sniff, sniff!

Height: 63.5 cm (25 inches)
Weight: 13-1/2 pounds
Size: 3-6 month.  Some is huge on her still.  0-3 still fits her and sometimes I'll put her in that, but, to be honest, I was getting a little bit tired of her 0-3's and realized that the weather was about to get too warm for fuzzy sleepers, and we got a bunch of super cute wintery 3-6 month size clothes as gifts, so....  3-6 month it is!

Milestones: shrieking, laughing, interacting...  She is doing a TON of drooling right now.  The teeth are coming!  She has also started really grabbing for things.  She continues to be my happy-go-lucky girl.    

I suppose I ought to talk about her lack of typical milestones too.  She isn't rolling over or sitting.  She can't lift her head off the ground when she's on her belly.  She is really stiff in the middle and doesn't like to bend (to sit, for example).  All this is typical of a baby with severe reflux.  They move with comfort in mind, and comfort means arching and making their esophagus as long as possible.  It would be miraculous if she didn't have delays.  Dr. S has referred her for a PT eval, and a lady with the state early intervention services came out the the house this past week.  It was an intake visit - the official assessment will take place in the next few weeks.  She did say that she didn't anticipate there being any problem getting Louisa covered since she has failure to thrive, which is a diagnosis that automatically qualifies her for state-covered services.   

Giant accomplishments: This month Louisa graduated from the apnea monitor.  This is HUGE.  And slightly scary for Tim and I.  We know she is ready to be off of it but at the same time it is hard to give up that safety net.

Louisa is also taking all of her calories by mouth.  If she is sick, we use the tube.  Otherwise she gets bottles.

Louisa started solids in feeding therapy this week.  I won't sugar coat it - it's rough.  She gags when the empty spoon touches her lips.  I do feeding therapy once a day with her at home.  We have been feeding her with alternate objects - teethers that she enjoys, for example, and then we try to offer the spoon.  Sophie the giraffe does a fine job.  We dip her head in peaches and hand her over to Louisa to explore.  The first time we did this, L put Sophie in her mouth, gagged on the peaches and then gave Sophie a very concerned look as if to say, "Soph, I don't know what you got on your head, but you really ought to take a bath."

Right now we are not expecting Louisa to gain anything nutritional from solids.  It is a learning experience.  Like everyone, L has good days and bad days.  A few days ago, after munching on Sophie's head for a few minutes, I offered up a spoon fully expecting rejection and she completely shocked me by grabbing it and shoving it into her mouth.  Yesterday she wouldn't even let Sophie come near her mouth and cried when she caught sight of the spoon.  Kids don't accomplish things once and then have mastery.  It's a process.  We are on Louisa's timetable with feeding.

It's difficult for me to describe just how much of a struggle all this has been, how exhausting it is, and how completely alien.  With Alice, we simply fed her.  Sure, we had instructions about which kind of formula to use and how to introduce solids, but we were pretty much on our own.  Louisa has four medical professionals giving us instructions on how to feed her, and often times they don't agree with each other on how we should proceed.  There are times when I am worn out from playing therapist at home.  We make Louisa struggle, and while it is for her own good, it is difficult for all of us.       

1 comment:

Hobbes said...

Thank you for the post and the updates. From afar this seems like one endless blizzard of procedures, sudden trips to the ER, and daily suffering. My hope for you is that you will never have to go through something like this twenty-five years from now when Alice is living in New Mexico with her premie and you are stuck in Knoxville.