I suppose you all think I have fallen off the face of the
earth! Truth is, we are in such a lull
right now that I actually start to forget about Gabriel’s clefts, and then
sitting down to write on my blog only reminds that they are there. The other day I was giving Gabriel a bottle
with a new nipple on it. For some
strange reason, with the new nipples, he lets all the formula run out the side
of his mouth. In frustration I actually
said to him, ‘Geez, Gabriel. It’s like
you have a hole in your lip or something!’
Then I realized what I said and thought, oh yeah, you do. You actually have two.
Our Gabriel is nearly seven months old already!! It’s hard to believe. Sometimes I get lost in my thoughts thinking
about how hard things used to be.
Thinking about going three solid days with absolutely no sleep, with
Chad (nearly) and I (fully) in tears thinking we were hurting our baby because
we couldn’t figure out how to feed him.
Days spent trying new things, worrying about his health, fighting with
each other because we were so lost in our emotions. Taking him to doctors, usually more than once
a week, watching his weight going down further each time.
Taking him to surgeries, both of them. Holding him in recovery and sobbing because
he looked so different, was so sad, and was still not done. Tightening the screw twice a day in the
Latham Device, cleaning old formula out of the Device while he screamed,
listening to his screams from waiting rooms at doctor’s offices.
Finally getting him to eat.
Seeing his first wide smile. Getting
the Latham Device out. Seeing him with
nostrils for the first time. Watching him roll over. Hearing him laugh. Getting splashed in the bathtub. Listening to endless squeals of delight and
baby gibberish. Rocking him to sleep
before his first official night in the crib.
Seeing his happiness every morning when I go in to rescue him from said
crib. Knowing he is happy – truly, truly
happy.
The bad parts are starting to feel like they are just part
of a dream – a nightmare in some cases – but an increasingly distant
dream. I know all the bad is not
over. We have one more surgery this
year, and I don’t know how many after that – but man, we are such blessed and
fortunate people! Gabriel is a true
light in the darkness. I could spend the
rest of my life without the sun, moon, and stars as long as I have him to light
my way.
So, other than reminiscing, life has been rather ordinary
lately. No doctor’s appointments, no
drama, no problems!! We did have his six
month check-up with the pediatrician. I
am thrilled to say he has finally doubled his birth weight!!! All systems seem to be in working order and
he is developing almost exactly as he should.
I say almost exactly because the pediatrician is concerned
that his speech might be a little delayed.
By six months old, babies should be saying nonsense that starts with
consonants – i.e. maa, baa, laa, daa.
Well…Gabriel doesn’t. Truth be
told, if you slow down and really feel how your mouth creates these sounds,
they almost all require a full set of lips or the pressing of your tongue
against your palate – neither of which has he.
I am not really concerned at this point, but she has asked me to go
ahead and contact one of our speech pathologists to see if they want to start
working with him now or after the palate surgery. Contacting them is on my list of things to
do…
We also started feeding him baby food. That has been quite an experience!! First, I couldn’t get past Frank because
Gabriel refused to open his mouth far enough.
Then, I would finally get the food in only to have it come back out
through his nose. There is nothing worse
than cleaning out your child’s nose with a Q-tip and still digging out puréed
sweet potatoes three days later!! I
think he might be getting it. If I put
the spoon in on the right, the opening in the palate is much smaller there, so
he can get most of the food down without it coming out his nose or running back
out with his excess saliva. I don’t
suppose he eats as much as a baby without cleft, but since he weighs over 20
pounds, I hardly think he’s starving!!
In July, we go back to see our ENT doc. He will determine at that time if it is
necessary to do a sleep study to evaluate how well Gabriel can hear. They will basically get him to go to sleep and
measure the sound waves going into his brain.
Some days we do think he might have a hearing problem, but other days –
such as the other night when I was trying to get him to fall asleep and he
heard his brother making noise downstairs – we think he hears perfectly
fine. It’s probably selective hearing
like his father. I guess that’s why
there are experts in the world. I have
been working on some sign language – just in case. I didn’t think he was getting it until last
night when I signed milk (which, of course, is formula) and he started smiling
and kicking his feet!
In August, we go back to the Plastic Surgeon to start
planning the third surgery. I am
dreading it as usual, but would like to at least know when it’s going to be so
I can start building my wall of strength.
Well, that’s all there is for now. I know – not very interesting, but I am
rather quite enjoying not very interesting right now!
