The Story of Nicholas' Early Arrival: Mirror Fun

Monday, March 9, 2009

Mirror Fun

We bought Nicholas a mirror today and he loved it. He looked at himself and smiled for over an hour before we moved it so he would sleep. They increased his feeds to 68ml every 3 hours and he is still at 3 bottles. The speech therapist said he did poor today. He took 62 ml out of 68 but threw up. She also said he has poor sucking coordination. She said in the past that he has good sucking coordination. She also recommended a swallow study and a G-Tube. He took his whole bottle at 5 and didn't de-sat and if he took just about all of his bottle this morning I would say that is good. So what if he threw some of it up, babies do that. But I'm not a speech therapist. It seems like the speech therapist is giving up on him but when different people feed him he does fine. We will see what his doctor says because we are not happy with this recommendation and do not want a G-Tube.

5 comments:

JCMatthewsMarch 9, 2009 at 11:25 PM
I don't know much about the sucking coordination, all I see is he is getting a constant feed through the nose in addition to the bottle feeds. He seems to be getting plenty of nurishment. It seems to me he might want to push that bottle away because he's full....
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cmm1210March 10, 2009 at 8:46 AM
Nicholas is not constantly fed. He is fed every 3 hours either through his feeding tube or from a bottle. No food is going into him when the tube is not hooked up to the pump.
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JCMatthewsMarch 10, 2009 at 12:52 PM
Thanks for Clearing that up, Corinne......
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Grandma MatthewsMarch 10, 2009 at 1:28 PM
I just want to say that I think Nicholas can sense when someone is holding him that the person may be tired or in a hurry. Since the speech therapist said he was having good sucking movement one day and then the next time she worked with him she said it was bad, then she might have been too anxious or in a hurry and Nicholas sensed that. Or as Corinne has mentioned, she might be giving up on him for whatever her reason could be. Nicholas is very intuned to his surroundings and the people who take care of him.
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AngieMarch 11, 2009 at 3:21 PM
That makes me laugh that you had to take the mirrow away :) I knew he would love it!! On the feeding note, we just have to keep trying. It is not uncommon to regress a little. He is and will continue to do things at his own pace.
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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, March 9, 2009

Mirror Fun

5 comments:

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