The Story of Nicholas' Early Arrival: 8 Month Old

Wednesday, July 8, 2009

8 Month Old

Nicholas is 8 months old today! It is hard to believe and he is growing up so fast. He is doing so well too. He is smiling all the time and he started blowing raspberries. He is also exploring his legs and I don't think it will be too long before he finds his feet.

We have an evaluation with a speech therapist tomorrow. I asked her what she can do for him now since we know he can't hear. She said that starting therapy early helps for when he has hearing aids or the cochlear implant. He will be used to the therapy sessions so learning to listen and respond will be easier. She also said it will teach us and him how to communicate through eyes and body language. She also recommended we try to get his hearing aid trial started ASAP.

After many phone calls I finally got an appointment at MUSC for another hearing test. The audiologist there told us that the ABR test they did here in Columbia was a shortened test and it only tested at high frequencies. She said that test doesn't test the whole spectrum of hearing and that they should not have told us he is deaf and that our only options are the cochlear implant or sign language. We are going in for a long ABR type test that will test everything. Then once we are done with that we will know if he can hear anything and will do the hearing aids. The test is July 22 and she wants him mad, tired and hungry when we get there. Then the plan is to feed him and let him sleep through the test because she doesn't want to sedate him if it can be avoided.

I got a call from the pediatrician's office on the way home today and we are being referred to a cardiologist. They got the download report of his apnea monitor and it showed 125 bradycardias (drop in heart rate). I think there is something wrong with the monitor because it hasn't gone off and the memory filled up in 4 days when it should take 6 weeks to fill up. We called the home medical equipment people and they are supposed to call us back. We were hoping to get rid of the monitor next week and now I don't know if we can. We will go to the cardiologist just to be safe.

2 comments:

Aunt PatJuly 8, 2009 at 6:49 PM
Nicholas really looks too alert to be completely deaf. No matter what, he's a perfect little boy to me. Love, Aunt Pat Matthews
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UnknownJuly 9, 2009 at 11:44 PM
How nice to see such beautiful pictures of Nicholas! Anita
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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

Wednesday, July 8, 2009

8 Month Old

2 comments:

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