The Story of Nicholas' Early Arrival: Eosinophilic Esophagitis

Sunday, March 7, 2010

Eosinophilic Esophagitis

The results of the biopsy they did during Nicholas' GI scope came back on Thursday. He has
Eosinophilic Esophagitis. Eosinophilic Esophagitis, also known as EE is an important disorder of the swallowing tube (esophagus) that is different from Gastroesophageal Reflux Disease (GERD). EE is an inflammatory condition of the esophagus that is characterized by having above normal amounts of eosinophils in the esophagus. A high number of eosinophils indicates a food allergy. The GI doctor started him on Elecare which is an amino acid based formula that is easy to digest. He has been only tube fed since Friday to give his esophagus time to rest and heal. Tomorrow we are going to try to feed him by mouth and see if he will take a bottle and not vomit. We can also introduce one baby food for him to eat for three days to see if we can figure out what he has an allergy to. The biopsy also showed microscopic holes in his esophagus. He was started on Carafate for that. He had his last dose of antibiotics from his shunt revision today so he should be able to go home soon. He might go home with a feeding tube if he still won't take a bottle. We will have to learn how to insert the tube but that is better than staying in the hospital any longer. Blogger isn't letting me upload any pics right now.

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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

Sunday, March 7, 2010

Eosinophilic Esophagitis

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