Sunday, April 13, 2008

Williams feedings and the Power of Prayer

I really feel so blessed to have everybody praying for my little man William, and for his recovery.  I've really seen God work in his life so much already.  He's a miracle boy who was ment to be here from the beginning, everything in his life says he was ment to be here, and wouldn't be here if God didn't want him here.  Here's a little re-cap of where we've been:

0. Contractions during pregnancy started at 27 weeks and didn't result in full labor till 37 weeks, and full term.
1.  Born Breech
2.  Not Breathing at birth
3.  Small Cord
4.  Small Placenta (1/4 of the normal size of a placenta) Likely IUGR baby. 4#10 oz at birth and other twin 7# 1 oz
5.  Blue Floppy baby given CPR at birth and transported to the hospital, and intebated over night
6.  Pink upon arrival to the hospital
7.  Breathing room air the next day
8.  Slight breathing support the afternoon after, but breathing room air on own within 48 hours of birth.  
9.  1st EEG Showed depressed activity, but no seizures
10.  2nd EEG Showed improvement, but still depressed and no seizures.  
11.  CT Scan showed subdural hematoma (slight bleed next to the brain, but no treatment required)
12.  3rd EEG showed angry activity and little activity between right and left halfs.  
13.  MRI showed clot and confirmed clinical picture, but no new news.  
14.  No Gag/Limited Gag, requires G-Tube and Fundoplication surgery
15.  2nd Surgeon recommends waiting till 3000 Grams/6# 9oz.
16.  So we wait for weight gain, and begin pumping and feeding hind milk.  Weight gain prior to this not as good as expected.  Feedings are increased volume of milk given
17.  I invested in paci stock and bought several different styles of pacis, and found one that William tolerated better.
18.  Speech tried a style bottle that mimics the paci that he likes
19.  Two oral feeds a day begun
20.  And today Oral feeds increased to 3 times a day.
21.  If feeding continues to improve it is possible surgery may be avoided completely.

So the new news for Sunday is William is now being fed orally at 11am, 5pm and 11pm. Sunday he took 20 cc at each feeding.  11am was 20-25 min, 5pm was 15 min and 11pm was 10 min.  This is great news.  When I left Sunday evening I did ask for the nurse to check with Dr Lucena to see if they could also do a feeding at 5am because it really seemed to help him remember how to do the suck swallow breath thing by doing it every 6 hours instead of just every 12 hours.  

Also when I spoke to Dr Lucena Sunday, I asked him what's going on now, are we still planning on doing the surgery at 3000 grams or does the bottle feeding change that, and if so what the plan.  Of course everything depends on William and the progress he's making and continues to make, but the 3000 grams isn't a hard and fast rule, as long as it appears feeding are going to take weeks and not months to progress to full feeds, he can continue to work on feedings and AVOID the surgery!!! He just needs to now increase his strength and stamina.  He's taking 60cc for each feeding and about 1/3 of that orally 3 times a day.  This needs to increase to taking 60cc 8 times a day
Posted by ~Lydia~ at 11:27 PM

1 comment:

Ladybug said...

Praise God! It is amazing to watch Him work, isn't it? You are continually in my thoughts and prayers.

April 14, 2008 at 4:45 PM

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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."