Today seemed to be nothing but bad news. And I'm really not sure if it was just different doctors, or if it was bad news.
First the NICU doctor questioned my hepatitis B status, which I though had already been confirmed during my hospital stay immediately following the birth. I have already signed a release for the doctor to send the information to the hospital, but apparently making it in my chart doesn't automatically make it in my babies chart. So I've been given instructions to contact my doctor again and have him fax the information to the hospital.
2nd the NICU doctor said there was no gag/ or not enough to proceed with a swallow test as had been planned for Friday and that we need to consider G-Tube insertion. And that she wasn't seeing any of the progress the other doctors had seen the previous week. She's a different doctor than we had been seeing the previous weeks. Also Tuesday is when the hospital has discharge planning (for all patients). She was also not willing to consider training for NG tube placement for us so we could place the NG tube, and go home with NG tube to see if we could recover better at home first with the NG tube. (G-Tube placement would require another 3-4 weeks stay for placement healing and training to take place.) She did mention that we would have to have a joint meeting to discuss the options. This is very discouraging to me, and will continue to discuss it further with her and the other doctors in the practice, as well as the GI doctor, and other therapists we will be seeing. She did mention that we would be seeing an occupational therapist that will give us range of motion exercises to do with him when we visit and at home. Also, we will be meeting with a speech and language therapist (as they are the ones that deal with feeding issues).
3rd I met with the neurologist about the EEG. I'm not sure I remember everything, but I'll give it my best shot. I didn't as many questions as I was feeling a little overwhelmed with everything already. The EEG showed little communication between the right and left sides of the brain, and no seizure activity, but lots of "angry" activity. He doesn't recommend another EEG at least for a few months, and he recommends continuing the medicine for a few months. He mentioned we may have cerebral palsy, but to what degree we won't know for a while. Again this was a different neurologist and I couldn't think of any questions to ask at the time.
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."
5 comments:
Your family will continue to be in our prayers. Let us know if there's anything we can do.
Praying daily for you and the babies. You are strong and they are strong and all of you will be just fine. Healing takes time.
Did you bank his cord? http://www.cordblood.com/cord_blood_banking_with_cbr/realpeople_realstories/ryan/index.asp
or did a family memeber?
i'm pulling for him. i think he will be just fine and i know that god wouldnt give you more than you can handle. you are a strong woman lydia - keep strong!
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