Wednesday, June 29, 2011

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?

Thursday, June 23, 2011

darn hiccups

well this whole video thing has made me lazy. it's just too easy to capture a quick video, slap it up here and call it good. so here's another one featuring emerson and the darn hiccups.

Tuesday, June 21, 2011

splish splash

the going to the park video series was a big hit with our far away friends and relatives who don't get to see E in person. so by popular demand, here's a new video of our girl. this one features bath time with her nurse. enjoy!

Sunday, June 19, 2011

happy father's day

we have had a wonderful father's day. it was simple. but it was special. it was adam's first father's day as a dad. last year we had just learned i was pregnant, so it had special meaning. this year we have our emmy in the world with us. last year i could only imagine what a good dad adam was going to be. i needed a lot of nurturing this time last year as i was terribly sick with morning (all day) sickness. adam was constantly running out to find things to either help me feel better or that i could possibly eat. mashed potatoes were a favorite as was ginger ale, saltine crackers and plain white toast. with four whole months of parenthood under our belts, i can now attest that adam is a better father than i could have even imagined. and being a great father has made him an even better husband. through all the trials and complications we've encountered he has only grown and stretched as a man. his strength, faith and support build me up and keep me going. and the love he oozes for our sweet emmy makes me love him even more. he is my perfect partner and he is the perfect dad for emmy. so with that, i say happy first father's day adam. and here's to a lifetime more in our future together.

Tuesday, June 14, 2011

emmy goes to the park

Please enjoy this nine-part docudrama miniseries featuring:
-rising young starlet "Emmy G"
-spunky furball "Daisy Mae Alligator"

With guest appearances by:
-firey rockstar dad
-severely-in-need-of-a-cut-and-color mom

















Wednesday, June 8, 2011

the emmy bear

not much time for writing. our little emmy continues to progress. however, it is quite apparent as she gets older (she's 16 weeks as of this past saturday!) and begins missing milestones that she has a brain injury. she does not smile yet, except in her sleep. it is so cute when it flickers across her face and i can't wait for the day when she flashes a real one. she also has very low muscle tone. this means that while most babies are kicking their legs and reaching and grasping, she mostly just lays there. her neck and trunk are also very weak and we are working hard on tummy time (which she absolutely hates!) to get her little neck strong enough to hold her head. she's not doing much visually either, although we have seen some progress in her eyes and feel like she's starting to see more. she has an appointment with an opthamologist later this month. she also will see an ENT later this month about her ears, which we were told have fluid, which could be affecting her hearing. only four months in and she's already seen four neurologists, two urologists, two pediatricians, many neonatologists, and a pediatric surgeon. she has occupational therapy on tuesdays, developmental therapy on wednesdays and feeding therapy on thursdays. she will soon add physical therapy and vision therapy to her weekly appointments. it's not what we signed up for, but it's what we do for our little angel. and once again, here is the sweet face that keeps us going.