Tuesday, November 14, 2006

Prematurity Awareness Day and an Update

November is Prematurity Awareness Month and November 14th is National Prematurity Awareness Day. The March of Dimes is constantly doing research to look for answers to prematurity in terms of prevention and how to help these tiny babies survive when preterm birth is inevitable. This year more than half a million babies will be born premature. Please stop by the March of Dimes and check out the astounding statistics on prematurity and it's impact. As a mother of two preemies, a 30 weeker and a 25 weeker, I completely understand the preemie experience. Unfortunately it's almost impossible to understand what a family goes through after a premature birth if you have never experienced one or been close to one. I'm going to 'borrow' a poem from a fellow micropreemie parent and blogger, Liz, to help explain the preemie experience a bit better (stick around b/c there is an Eli/Carson update after the poem!).

Eli at 2 days old on vent

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, 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.

-- Sandra D Moore

Carson at 2 days old on vent

This week our preemie experiences are hitting home even harder. Carson has been struggling more with his ADHD and SPD in the past few weeks. He hasn't been able to shake this croupy cough for the past three months and needed to go back to Children's Hospital urgent care on Thursday for epinephrine breathing treatments and some Decadron to help his breathing. Eli's BPD is being complicated by his continued aspiration. Carson then shared his latest round of croup with Eli and on Sunday Eli ended up being admitted to Children's Hospital in severe respiratory distress. He is finally home now but still having stidor and wheezing after needing oxygen, epinephrine/Albuterol/Atrovent, and many rounds of Decadron. We need to get his lungs in order in time for his big surgery on 12-4. The effects of prematurity (especially extreme prematurity) last far beyond the birth and NICU period. If anything at all, please don't ever say to a preemie parent, "But your child is fine and healthy now....their prematurity doesn't matter now". That is like a knife in their heart.


Jill said...

Oh my gosh, I love that poem. It really hits home. You are right, no one can understand it unless you've lived it. May I borrow it too?

I am so sorry your boys aren't feeling well. I'll say an extra prayer for them tonight.

Maggie said...

The poem is awesome. I got all teary during it - but the last line really hit home to how I feel about Sarah's prematurity. I borrowed it from you and put it on Ivillage. I'm not positive that all will understand it but definitely those micropreemie moms will.

Families/friends just don't 'get' it when it comes to having a preemie. As Sarah gets closer to 2, I hear people telling me that she's going to be over everything by age 2. That would be a nice wish.

Sending hugs your way!

Laura said...

the poem is awesome....it is funny how the long lasting affects of oyur boys extremely tiny, scary starts still continue to slam us in the face, especially thi week. I feel for you because we have been slammed too.

Kayeita said...

hey kellie. Lots of hugs to you and your boys. I may not get that preemie comment you might have gotten on occasion, but I do get people thinking everything is OK with Jonas because he survived his coma. So frustrating! *hugs*

Kaye & Jonas