a real update

we try to keep things positive around here and not dwell too much in the negative. it's a technique of survival. and when i don't have much good to say, i tend to stick with posting pictures or videos. because my baby girl always looks so cute in pictures and videos and that IS so very positive. but here's a bit more of our reality.

last week we had our 4-month check up with the NICU staff. they didn't really tell me too much more than i already knew. Emmy is definitely significantly delayed. she has yet to start "seeing" things. or at least she's not reacting like she is seeing things. she doesn't look at or track toys. she doesn't respond when something flashes in front of her face. she doesn't even really squint or turn away from bright lights. but despite all of this, we have seen what we consider some improvement in her eyesight. her eyes used to swim around and have a lot less purposeful movement. now, at times, she seems to actually be looking at something. and sometimes, it seems like she is even looking at us. that's always a good feeling. today, she was diagnosed (as suspected) with "Delayed Visual Maturation" or "Cortical Vision Impairment". this essentially means her eyes work fine, but the translation of what she is seeing is being lost somewhere in the transmission to her brain. the good news is, there is the possibility of improvement in this area. essentially, she will need to learn a new way of seeing. so she has vision therapy and will be going back to the opthamologist in four months to determine if there has been improvement. we are hopeful that there will be.

next up is hearing. she hasn't passed any of the three hearing tests she's had and isn't showing us any signs that she hears. she doesn't startle at loud noises or look towards the direction of noises. however, i feel pretty confident that she "hears" me. she seems to like when i sing to her. . .which actually might be a sign that she can't hear. ha! i also think she enjoys having music on. we are constantly playing an iPod in her nursery. i've discovered we will soon need to "clean up" her playlist as some of the songs that play aren't so age appropriate. we probably don't want to be teaching her those kinds of words. strangely, we've found that she has an affinity for Rhianna's song "Umbrella". not sure how this song got on my iPod. . .or why the daughter of two indie rockers would be so keen to a mainstream pop song. but it does have a good beat that we both like to bop along to.

smiles. oh. . .the evasive smile. i'm dying a slow death waiting for her to smile. somehow i believe that this first official purposeful smile will make everything alright. of course i know that it won't solve everything. but i do think it will bring me a lot of happiness and a sense of peace in knowing that she can feel happiness and express it. so far she smiles in her sleep. sometimes her eyes are even half open and i wonder if she is toying with me. even when i know this smile is yet to be intentional, it still makes me smile right back. and i know when she finally flashes that first real grin i will feel an overwhelming sense of joy. so for that day i will continue to wait.

head control is another thing we've been working on. i know this will take much practice and patience. to help us with our goal, we've implemented a stringent "tummy time bootcamp" schedule. at least four times a day, she is forced to submit to the dreaded tummy time position for 5 minutes at a time. she screams bloody murder and it breaks my heart. but i know that it's a necessary evil to help her develop. and i hope that not only will this help her head and neck control, but that eventually she can actually learn to relax and enjoy being on her tummy.

so although she's behind in her development, which was to be expected, we've also seen great strides in our Emmy. the changes we see may seem subtle to others, but we know they are leaps and bounds for her. she's gone from screaming inconsolably for hours on end, to screaming quite a bit, but with the ability to soothe her fairly quickly most of the time. she loves to be held and swung and held. she won't allow you to sit down on the job, but at least there is SOMETHING you can do. she also is having much more time where she is awake and alert and not screaming. don't get me wrong, she still sleeps A LOT. but little be little we are seeing her come around. i already mentioned her vision progress. and finally, her feeding therapy is going well as well. she's gone from sucking only 5-10 times in a row to up to 30-40 times in a row. she has a LONG way to go. her swallow is still not strong. but we are working on it every day. along these same lines, her gag and coughing reflexes have also gotten stronger, which is a good sign of improvement. it also means she is better capable of protecting her airway and not at as high of a risk for choking.

so with that, i'll leave you with some fabulous new photos which i believe are proof positive of how much more alert our girl has become.

our little glam girl, lounging by the pool "Hollywood" style

"mom, i'm bored. . ."

bright eyed and bushy tailed

conked out

the yawns never get old. . .just too cute!

post yawn pucker

i mean really. . .could this face be any more perfect?