Wednesday, August 26, 2009

Perspectives (92 days)

Three months today! The doctor called last night to say that she was "quite pleased" with Bryce; Christie and I echo that sentiment. Low breathing support (1/8L @ 21-25%), nursing/bottling at least four times per day, and growing steadily (5lb, 6oz).

In the past week, I've run across two stories that describe different aspects of the micro-preemie experience quite well. I'm feeling a bit reflective on this milestone day, so I thought it would be a good time to share them. Our more sensitive readers may want to skip this one -- I have a tendency to pull my punches when it comes to some of the realities.

The first is an article from yesterday's New York Times (thanks, Lisa). This may be hard to understand if you haven't spent much time in the NICU, but the part about the "war zone" really resonated with me. It is not a peaceful place -- the alarms keep us on edge constantly, and we've witnessed more than our fair share of violence, sickness and death. I have the utmost respect for our soldiers and I have no experience with combat, but I suspect that a micro-preemie is less likely to come home from the NICU than a soldier is to come home from the battlefield.

The second comes from another micro-preemie parent. Her experience mirrors our own in so many ways -- I've reproduced it below. The emphasis on the last paragraph was added by me. :)

The Preemie Experience
by Sandra D Moore

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, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry, Mrs. Moore. Something has
Shown up in Lauren’s 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 three 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.
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1 comment:

  1. Well done, Jason! You have enlightened our hearts and minds to the world of micro-preemies and to the many diverse experiences of their parents.What a journey you have been on. I wish Judges would make every parent who has mistreated their child or children even to the point of death to read your blog and know what it is to fight for the life of your child.
    "No greater love..." I long for the day when your family is complete and safe at home. By the way, Bryce looks great. Shows what being loved can do for a preemie. The video of Bryce sucking his open hand was exceptional.
    Love and prayers,
    Grandma & Grandpa