The Story of Nicholas' Early Arrival: Good news and bad news

Wednesday, October 28, 2009

Good news and bad news

First the good news. I got the official results on the CT scan for Nicholas' cochlear implant. He has the parts and can get the implant! Our next visit with the surgeon and audiologist is Nov. 12.

Now the bad news. Nicholas is currently in the hospital. His soft spot has been bulging so we brought him to the ER on Sunday. The CT and x-rays showed the shunt and his ventricles looked good. The bulge has gone down and come back and gone back down and back up so I brought him back to the ER yesterday. They repeated the CT and it showed a slight dilation compared to Sunday's CT. We have seen a nurse practitioner and physician's assistant from neurosurgery and they think his shunt is starting to malfunction. His neurosurgeon is currently in surgery so we have to wait until he looks at the scan and decides what to do.

1 comment:

TiffanyOctober 28, 2009 at 3:46 PM
I am sorry to hear that. The shunt can be so tricky. My son has a shunt that fails intermittently and it's hard to know when to take them in (especially once that soft spot closes).

I pray for the best for Nicholas.
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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, October 28, 2009

Good news and bad news

1 comment:

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