The Story of Nicholas' Early Arrival: ABR #3

Thursday, August 6, 2009

ABR #3

We went to MUSC in Charleston today to finish Nicholas' Auditory Brain Stem Response hearing test. He slept and we were able to finish it this time. He had no response at any frequency up to 100 decibels, which is the loudest the test goes. It is equivalent to a helicopter or a rock concert right next to your ear. So this means he has profound hearing loss and is deaf. We also met with the surgeon who does the cochlear implants. He feels the implant is the way to go and we agree. I brought the CT scan from his shunt surgery and they were able to see that he has a cochlea, which is good. We still need to get an MRI done so they can see the cochlear nerve which is needed to be able to hear with the implant. The doctor said he has never seen a deaf person without the nerve so he strongly feels he will have it and will be able to get the implant. We are going to do the MRI here in Columbia in October and we go back to MUSC to meet with the surgeon and the audiologist in November. We will have to try hearing aids first because the FDA and insurance requires the trial before a person can get the implant. The hearing aids won't allow him to hear though. Surgery for the implant will be Jan. or Feb. when he is around a year adjusted.

1 comment:

leahAugust 7, 2009 at 11:14 AM
Oh, what a sweet boy! I found your blog through google. Our little guy only has a moderate loss (so hearing aids help a lot), but we have lots of friends who use cochlear implants to hear (and they're all doing great)! Just wanted to send some electronic support- I have a link to Drew's blog on the side of mine. He has bilateral implants and originally had no detectable hearing up to 120 dB (he's a little rockstar- that boy can talk like you wouldn't believe)!
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Preemie Experience

The Preemie Experience
The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.
It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.
It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.
It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, his eyes are open,” or “he’s crying!”
And the lows of “I’m sorry, something has shown up in the ultrasound,”
Or even “There is nothing we can do…”
It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.
It is watching children dying around you, wondering if
Your child will be next.
It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.
It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…
It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because,
after all,
The child wasn’t due for another four months!
It is thinking the nightmare is over…only to realize it still Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.
It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate
occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.
It is watching a child struggle to pick up his or her head, sit, Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.
It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey…A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,

This child is yours,
And you will love this child no matter what.

The Story of Nicholas' Early Arrival

Thursday, August 6, 2009

ABR #3

1 comment:

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