The Story of Nicholas' Early Arrival: Where Does the Time Go

Monday, December 20, 2010

Where Does the Time Go

I can't believe Christmas is this week! We are headed to Chicago on Wednesday. Nicholas, Grandma T, and I are driving. Mark is going to fly up there and drive back home with me. Hopefully Nicholas will do well during the long car ride.

He went to the Audiologist last Monday for a hearing check up. His implant is at 80% volume right now. He goes back in six months. She changed the settings on his processor and now it doesn't turn off on its own. If we took the coil off his head the processor used to turn off after about a minute to save the batteries. I thought something was wrong with it so I called Cochlear and they were going to send us a new one. We put his back up one on and it was doing the same thing. I called Cochlear again and they had me sync the processor with the remote and were able to see what was going on with it. His audiologist accidentally put it on advanced settings instead of simple. It works fine we just have to turn it off on our own. No big deal but i think we will go through batteries faster since Nick likes to rip it off his head and if we don't see him do it it will still be turned on draining the batteries.

We heard back from the GI doctor about his stool sample. There was no blood in his stool but it was very acidic. He said that means he isn't absorbing something. He wants to do another GI scope to see if something is going on with the small bowel. That is scheduled for Dec. 30. He will have to be sedated for it.

He finally got his first Synagis shot last Friday. His appointment was Oct. 22 but it took two months for the doctor's office to get someone at the insurance company to agree to let them use the medicine in the office rather than ship it just for him. This avoided us having to pay for 50% of the cost of the shot. The shots are over $2,000 each and he is supposed to get six of them. He will only get four because it took so long to get the first one. He was 22lb 2 oz at the Pulmonologist's office when he got the shot. He has never been over 22 pounds on any scale so he gained some weight. The tuna salad and olive oil must be packing on the pounds.

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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

Monday, December 20, 2010

Where Does the Time Go

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