Well, I originally intended to write this post about all of
our family adventures this week: a visit to Tony’s office with a lunch outing,
a trip to meet the newest Collett, Emelia, a jaunt to Nana and Pop’s house, and
some fun time with Uncle Tanner.
But those things will wait.
Today, the kids had their first appointment with the
developmental specialist. This specialist’s job is to look at Jack and Harper
and where they are with their gross motor skills, their language development,
their overall physical health, oh yeah,…and their nutrition.
Jack got a stellar report: great job rolling over, grasping
objects, transferring objects from one hand to the other, making eye contact,
smiling, good head shape, good weight, ready to try some pureed fruits and
veggies. Overall, he was functioning about a 4.5-5 month level- a very big deal
for our little man who was born two months early.
Harper also did well smiling and making eye contact. She was
more reluctant to grab for objects and needs a little work on her tummy time-
she’s too rigid and needs to learn to relax a bit more. Overall, she is at a
3-month developmental level, which is where she is with her adjusted age. She
does have some areas of concern though: Harper has torticollis (a technical way
of saying a stiff neck) and we need to work on stretching her everyday. She
also has reflux, which is causing her to stay in an extended tense position, so
we’re going to work on flextion with her.
The last major area of concern for Harper is the biggest
concern for our little family right now.
We found out today that Harper has not gained any weight in
two weeks…she should gain an ounce a day. For the last 14 days, she has made no
progress- none at all. Growing taller, but no bigger, no developing muscles, no
layer of baby fat- just a stagnant girl.
The specialist asked me how many ounces Harper ate on a
regular basis. I told her yesterday she ate 13, the day before she only ate 11;
the doctor told me I needed to feed her 16 ounces a day…minimum.
This is where I came unglued, in the developmental
specialist’s exam room, with my fragile, sleeping daughter in my arms, and my
boy- my joyful little boy- watching me with a puzzled look on his face. This is
where Mommy broke down, hit the bottom, cold and alone, where the guilt of
every mile I walked with them, every time I went to the gym with my precious
bundles inside, every stair I climbed while I was pregnant- where all of the guilt
ran through my body like a hot burst and I stood with tears cascading down my
face trying to explain why I couldn’t give my daughter what she needs to
thrive.
And how do you explain to someone that you cannot make her
eat? Just saying the words, “I can’t. I don’t know how to help her.”
Those words made my heart beat fast. This was a well kept
secret, this idea that I don’t really know what I’m doing, that I make most
decisions on the fly, that I somehow lost the owner’s manual to my kids, all of
this was something I thought I hid…now all thrust into the open- every ugly
drop of pride and vanity and guilt and shame and inadequacy and hopelessness-
it all laid open in those nine words.
Those words proved to be mighty. The specialist put a call
into our pediatrician who saw Harper this afternoon and called a pediatric
gastroenterologist who is seeing Harper Tuesday; the doctor also called a new
feeding clinic and they will see Harper Wednesday. God never closes a door
without opening a window or two.
The unfortunate problem is that we now have to wait until
next week. This is proving to be harder than it sounds.
You do not know the true meaning of frustration until you
hold this wonderful, innocent baby in your arms- the life that you are
entrusted with- and it is your task to get her to do something so scary and so
painful to her, that she screams the moment you sit down. She screams as the
bottle passes her lips, she screams as she chokes down the precious calories
that give her life and rob of her quality of life all at once. She stares into
your eyes with a longing that seems to say “please, you don’t understand how
horrible this is.”
You do not understand frustration until you’ve sat and
rocked your child back and forth, back and forth, pleading with her to try, to
please try, and apologizing with every gulp, tears streaming down both of your
faces. The pain is palpable.
We have four more days of this-seven times a day- twenty
eight more times we have to wander through this wilderness before we see the
doctor again. Twenty-eight more times we have to hurt our beautiful girl, the
little girl who trusts us to do everything to help her; we have to hurt her
almost thirty more times praying each time that she won’t associate Mommy and
Daddy with the pain radiating from her belly, that she won’t turn away and grow
bitter and callous. Twenty-eight more times, twenty-eight more times,
twenty-eight more times but who is counting…
I thought I should leave tonight with 5 good things that
happened today- 5 things I’m thankful for, because even though it was not a
great day- probably the hardest day for me in a long time- there were still
good things about today.
1. I
am thankful that I have two children to blog about and these children are
happy, and are learning, and doing new things. I am thankful for my little
family.
2. I
am thankful for my wonderful husband, Tony, who helps me hold up the sky when
it feels like everything is falling in around us.
3. I
am thankful my friend, Katie, went to the doctor’s office with me today to help
with the kids. I could not have done it without her, and I appreciate all her
kind words and support.
4. I
am thankful I got to walk Abby tonight; it was fun to watch her play with a
random toad we stumbled upon- a much needed giggle was nice.
5. I
am thankful that despite the bad day, tomorrow is a new day, and though it is
dark before the dawn, the sun always rises.
