The Story of Nicholas' Early Arrival: Busy Day

Friday, January 16, 2009

Busy Day

Too bad his IMV tubes cover his eyes, they were open.

Nick and his pacifier.

Nicholas had a very busy day today but it was a good day. He had his second eye exam and his eyes still look good and show no signs of ROP. They will check again in 2 weeks and since this disease shows up as babies get older he still isn't out of the woods. He had an EEG on his brain to look for seizure activity. They did this because of the possible seizure that he had a while back. We will know the results in a few days after the neurologist checks it. They increased his feeds to 6 ml and hour. His urine output was at 2.4 cc per kg per hour so I am a little concerned about that. His last dose of Lasix was yesterday so I hope his output isn't decreasing. His IMV was set at 36 breaths per minute and 30% oxygen. His nurse said he was probably just warn out from everything today and needed a little more help breathing. I coudld see that it is starting to irate his nose because he had a little scab inside is nostril. And, Daddy got to hold him for an hour today.

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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

Friday, January 16, 2009

Busy Day

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