The Story of Nicholas' Early Arrival: No More Oxygen

Monday, June 15, 2009

No More Oxygen

Nicholas had an appointment with the pulmonologist today. The doctor took him off oxygen! He said he should be ready to come off the apnea monitor in another month. It will be so much easier to carry him around the house now. He even took a nap in his crib today. He had never even been in his room before because the oxygen tube wasn't long enough. Plus, we get to see his cute little face without anything on it. Mark also took him for a quick NICU visit and saw some of our favorite nurses. Thanks again to all the NICU nurses, doctors, and RT's that kept him alive and got him healthy enough to come home. He is doing great!

5 comments:

The Adventures of DJ and KatelynJune 15, 2009 at 6:56 PM
YAY!!!!!
I am so happy!!! DJ stays off his apnea monitor during the day, but when he sleeps at night I still put him on it. I am trying to wean myself off of it at night. His ped is going to have them come get it next month. I of course will still worry and will always worry.
It is so wonderful not having him hooked up. You wont know what to do.
My husband was asking about Nicholas so I stopped by to check on him, we are glad the oxygen is off and he is doing so well.
DJ goes to the pulmonologist, Dr. Brown, and his Nephrologist, Dr. Holleman, next week for check ups.
Also finally the PT came out and did a full elevation. I did not like her. She had an attitude on the phone and when she came she was even worse. She talked back at me. Everything she suggested I do, I already did, but she said I wasn't and even wrote in her report that I don't do anything with him and had both of his ages incorrect. Making him older. His motor skills according to her are only at 3 months...his ped and EI both put him at 4 months closer to his adjusted age, which is where he should be. He does have some issues with his legs, but she is not going to address them until I get his trunk control under control. Blah....So to rant. We just waited so long and it was crappy. I am better off doing the research and doing it myself.
I hope things go better for you.
Well I am off to the store.
TAKE CARE!!!!
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MOJune 15, 2009 at 8:26 PM
Yay!! Was a cutie pie!! We need to get together again soon!!!
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MOJune 15, 2009 at 8:26 PM
What a cutie is what I meant:)
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DonnaJune 15, 2009 at 8:35 PM
A great milestone for little Nicholas! So happy to see that he is breaking away from the equipment and is more mobile. Kudos to Mom and Dad for all you have done to contribute to his remarkable progress. God Bless!
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Grandma MatthewsJune 16, 2009 at 8:13 AM
I know Nicholas did not like the cannula and would do everything possible to take it out. He is such a blessing and is loved by so many people. He is still known as our "prayer baby" where I work. Mark and Corinne are super parents who are doing a fantastic job with Nicholas. Love to all of you.
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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, June 15, 2009

No More Oxygen

5 comments:

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