Thursday, April 17, 2008

5pm Feeding Wednesday

Today's 5pm feeding was the worst ever!  Both emotionally for me and because it was such a step back for William. The important thing for the feedings is that they be a positive experience for William, and this one was not.  As you may recall we began adding fortify (HMF) to the breastmilk because of his lack of weight gain.  The 5pm feeding was the first with this fortifier in the milk, and the stuff stinks and according to William doesn't taste good at all.  He would take 2 sucks and then push the bottle out of his mouth with his hand arch his back and make the worst face.  I'd get the bottle in his mouth again and he'd repeat it all over again.  After about 15-20 minutes of this and almost no progress made on the bottle I was in tears.  All I could think was we were going to need the G-tube surgery just because he won't take fortified milk and refused to make progress.  At the end of it I begged to speak to the doctor and asked him if there was any way we could do breastmilk at the 3 bottle feedings and only foritfy the gavage feedings.  He agreed we could do that, so that's what we are doing now.

In much better news at the 11pm feeding he went to town and sucked and swallowed the whole time and took 57cc of 60cc in 30 min!!!! Breatmilk is BEST! At least according to William.  

I can tell now he's a super sensitive kiddo.  He startles very easily at the slightest noise, and if he's moved to quickly it really starts to overwhelm him.   

1 comment:

Anonymous said...

You are such a good mom to have thought of using just the breast milk for the bottle and the fortified milk for the gavage feedings. Such a good advocate for your little one. I am proud of you, Lydia. So glad the 11pm feeding went so well. Yay William!! I bet when he gets bigger that he will lose some of that sensitivity to stimulation. I keep you all in my prayers. Love, Mom

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."