Saturday, April 5, 2008

Cranial Sacral Therapist and surgery delayed.....

I spoke to the doctor at the hospital regarding the scheduling of the g-tube surgery.  He said that he wants William to be 3,000 grams or more before doing the surgery.  Babies who are above that weight have a lesser chance of complications. Basically, that means he needs to gain just over a pound.  He was born at 4 lbs, 10 ounces, is presently about 5 lbs, 8 ounces, and 3000 grams is approximately 6 lbs, 9 ounces.  In order to help him gain weight faster, the doctors have suggested boosting the calorie content of the breastmilk.  I'll be boasting the calorie content of the breast milk by pumping more hindmilk into the bottles that I'm giving the hospital.

Though this means that this could mean a delay in getting William home; I have consulted with a cranial sacral therapist--the one that worked with the conjoined Egyptian twins, and she seems to think from what I described, that he will be able to work with William and get enough improvement that they can avoid the fundo part of the surgery.  The only problem is that this therapist does not have privileges at this hospital, so he has agreed to go with Lydia as a "visitor" possibly next friday, they will let me know for sure on Tuesday to sort of evaluate him and show her some helpful exercises and therapies to do with him.  The therapist said he is also going to send William's doctors some research, and the doctors have said that they're willing to look at it.  While visiting me/william as a visitor of course they can't lay a hand on him because they don't have privileges, but hopefully they can show me somethings that will really help him.

As for feedings, he is presently getting 52 (or 55?) cc's through the NG tube every three hours, and in the next 12 hours, that will be increased to 60 cc's (this happened last night at 2am sorry I'm just now posting this), which is approximately 2 ounces.  
Posted by ~Lydia~ at 12:09 AM

1 comment:

Anonymous said...

Hi, saw your message on EC. congrats and i'm sorry you are having the stress of the hospital etc. I wanted to just give you my opinion on the nissen fundo, any fundo for that matter. I've been a pediatric home care nurse for6 yrs now and have had a couple dozen patients that have all had fundo's. In all but the ones with absolutely NO gag at all the fundo blew, basically it tore and became nonexistant. Usually it was caused by the kiddo's own gagging and coughing, the rare ones were from over feeding.
Good luck with your new little ones.

Jen

April 8, 2008 at 4:40 AM

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Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."