The Story of Nicholas' Early Arrival: Still recovering

Monday, December 22, 2008

Still recovering

Nicholas is still recovering from his stomach surgery last Tuesday. His kidney ultrasound showed no abnormalities in his kidneys. He started to produce urine in the middle of the night Saturday. He has been having great output and is a lot less swollen. He still has a lot of excess fluid in him and his eyes are still swollen shut. Poor little guy. He was very active yesterday while we were there and appeared to be awake but he couldn't open his eyes.

His lungs are not recovering well. Nicholas is still on the high pressure ventilator, the oscillator. This ventilator gives 240 short, quick breaths a minute compared to up to 45 large breaths on the regular ventilator. Because he was so swollen, his lungs were squished and couldn't expand enough to be on the regular vent so he was put on the oscillator. The oscillator is a step backwards but the good thing is that it doesn't scar the lungs as much as the regular ventilator. We still want Nicholas to move back to the regular ventilator ASAP and wean off of that and on to CPAP. CPAP is the breathing machine that is a step above the ventilator. It pushes oxygen in through the nose rather than the lungs and does not cause scarring. Nick's oxygen level has also gone up. He had been at a really good level with the oxygen for quite a while but was up to 50-75% yesterday and he is at 100% today. We need that to go down to 21% which is what we breathe or room air. High levels of oxygen is also bad for his eyes.

Nick's electrolytes, sodium, calcium, and blood sugar are still not where they should be and his blood pressure is still very low. They are doing everything they can to correct this but his body is just taking a long time to get over the surgery. Poor little guy has gone through so much and is such a fighter. Hopefully he will make it over this hurdle soon and keep moving forward.

Oh, Mommy watched the nurse practitioner drain his reservoir on Sat. and didn't pass out. The spinal fluid that they took out looked good. They want it to be clear and not have anything floating in it. It kind of looks like a darker urine, which is good.

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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, December 22, 2008

Still recovering

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