Wednesday, April 9, 2008

First Bottle

Today I went to the hospital to visit William in the AM as my MOMS Club group has been so wonderful to setup a schedule for me so I can go up to the hospital each day and evening.  William and I just snuggled in the chair in his little "room" with the curtain pulled around us and we napped together.  There is nothing this side of heaven quite like snuggling with your children.  After our nap OT came by and worked on our exercises, some Tummy time and neck control sitting up, and some standing.  

This afternoon I scrambled to find someone to watch Micah and Tommy (during Tommy's nap) so I could return to the hospital for when Speech was going to come by and give him his first bottle at 2pm.  She found a bottle at Target that is similar to the paci that he allows in his mouth, and this is the bottle we were going to try.  Thankfully the wonderful Mother of my Husband could leave work to come watch Micah and Tommy so I could head back to the hospital to see how the bottle went, and learn how to do it myself.  He did so wonderful with his first Bottle, he took 10cc (about 2 tsp) ALOT for a first bottle, on someone that's never had food by mouth before.  He would give little sucks, then swallows, then rest, and then repeat again.  After about 5-7 cc, speech let me try to give him some more.  He tried again for me and took 5-3 cc more.  His current feeding is 60 cc so that was 1/6th his feeding, and REALLY GOOD for a first try.  It was a lot of work for him and he just passed out after we were done.  The nurse finished the feeding gavaged (ng tube), and I rushed back home so my mother in law could return to work, and the stack of papers/people waiting for her.  

Also, while there the doctor also got to see him swallow some of his feeding, and cheer him on.  Also, because I was there I got a chance to ask speech and Dr Lucena if I could try to give him another feeding in the evening when I'm able to visit him (at the 11pm feeding).  They said that would be fine, and I'm going to offer him about 10cc in a bottle this evening.  Also, for consistency we are going to only have either me or the speech lady give him feedings for now, and after he's more comfortable, then we can have other people offer him feedings also (other people would first be the nurses, the other consistent family members that are able to visit too.)  Also the plan for now is to give him feedings at 11pm and 11am so he has consistent bottles offered at consistent times, at 12 hour intervals.  Speech will do 11am M-F and if I can do it on the weekend we'll do that, or possibly have the nurses try on the weekend if I'm not able to be there at 11am. 


Unknown said...

This is just absolutely wonderful news. Thank you so much for keeping up your blog. I think of you so much and pray for William. I don't know how you are handling must be so tired. But I know how great it is that he took from a bottle. Keep up the good work William!

Lori said...

This is great news! Praise God.

Anonymous said...

Fabulous news! God is good. He's giving William the strength he needs!

Liz said...

You are lucky to have a wonderful family and support system around you to help you. I live in Fort Worth so its hard on a budget and with 2 small kids to get out there to be there for you. What I am really trying to say I guess is to thank all your friends for jumping up and helping were I your sister cannot. Thank you, ladies for helping her and my nephews in all this you are a blessing to her, and I appriecate all you are doing to help my sister.

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."