The Story of Nicholas' Early Arrival: Back Home

Monday, August 17, 2009

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Nicholas came home from the hospital Saturday afternoon. He did so well with this surgery and is recovering well too. Both a PICU nurse and a children's hospital nurse commented that his lungs sound great and not like most chronic lung disease babies. It was also nice to see our favorite NICU nurses who visited us in the ER

He seems to be back to his old self. He is eating just about the amount he was before the shunt malfunction. We canceled physical therapy again and aren't doing his exercises right now. We are going to give his tummy some time to heal and start PT again next week. He doesn't seem to mind the incisions on his tummy and has a ball during floor time. Last night he was trying so hard to roll over. He had his top arm all the way over to the other side and was turning his head face down. He just couldn't get his hips over. Mark shaved the rest of Nicholas' head on Sunday. We saved the hair and Mark put a note in the baggie saying who the Cubs were playing. We have a little baldy now!

2 comments:

Grandma TerriAugust 18, 2009 at 10:28 AM
Wow! What a difference from those bad days in December and January. I was re-reading the blog and got all teary-eyed reliving those horrible days after his intestinal surgery. Nicholas is so much healthier now and I am sure that helped him recover quickly from the latest surgery. I saw first-hand what an adorable little baby he is. He loves to watch you talk and mimics your facial expressions making all those cute little baby sounds as he smiles and laughs. Mark and Corinne are very proactive with his PT making every attempt to give Nicholas a head start with his physical abilities. They are both terrific parents. The love they hold for Nicholas is so visible and touching. He is indeed a lucky little man to have them as parents. Time for Grandma to stop gushing. Love to all of you. I miss you and can't wait to visit again.
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Aunt PatAugust 20, 2009 at 12:46 AM
I am so sorry to hear that this sweet little boy has had to through yet another surgery, but am glad that he is doing better. He is such a little fighter and he's not even a year old yet! Please give him kisses and hugs from his Aunt Pat Matthews. Hopefully, Uncle Joe and I will be moving down to Columbia next spring and I can give him a hug and a kiss in person. Nicholas is in my prayers every day. Love, Aunt Pat
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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, August 17, 2009

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