Friday, November 12, 2010

updates

You Might Be in the NICU too Long When...




* Staff members from other units come in and ask you questions because they think you work there.



* The gruffest, burliest guard knows you by name and actually becomes rather friendly.



* You wear your yellow sterile gown all the way to the main entrance of the hospital because you're so used to it.



* You have a favorite sink to scrub in.



* You can fill the nurses in on different elements of your daughter's care.



* People stop asking when you're going home.



* The guys who run the shuttle know your story and you know theirs!



* You look at the board with pictures of former NICU babies and can't wait to have your daughter's picture on it!

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Thursday, November 11, 2010 10:46 PM, EST

She's the Daughter of a Teacher...Poor Girl!



Let the developmental therapy commence! School is officially in session for sweet Abby girl. I doubt if she'll even get weekends off. I'm a slave-driver like that. :)





It has been a goal of mine since the beginning to get Abby to take a pacifier. Since we know Abby will have to have a g-tube because of the danger of aspiration, I was very concerned about how the lack of oral stimulation would affect her long-term eating and speaking abilities. I convinced the NPs to send in a speech-language pathologist (SLP) to teach me some techniques. I know it sounds weird that a SLP would be working with a 3 week old baby, but it's true!



I learned some "games" to play with Abby and we tried three different pacifiers before we found the one that Abby really loves. Of course, it's the one that they no longer manufacture and the SLP doesn't have anymore of...so we're not going to lose it!!



I'll tell you--Abby's doing really well with it! She is able to keep it in for good chunks of time now, and can even pull it in herself when I touch it to her mouth. When she wants to, she can hold tight to it when I try to take it from her. These are all really important pieces of oral stimulation, so I'm very pleased.



Probably what I'm most excited about is that Abby is now connecting the pacifier with something to soothe her. Fits of silent rage can be tamed with a few sucks of the pacifier now. When she starts to get takhypnic (What, you don't know what that is? Come on, it's rapid breathing, of course!) :) I give her the pacifier and she slows her rate! What's more is that it appears that she can maintain a steady rate with the pacifier. This is majorly important if she wants to get off of the vent...and we want her to!



Occupational Therapy also came in a few days ago and taught me all sorts of range of motion exercises to do with Abby. I do the whole routine once a day and work extra hard on her wrists and hands throughout the day. (Abby is a clencher and she tends to tuck her thumbs in, so we're trying to train her to open her hands correctly. She'll have braces soon, but the more we work with her on it, the better!) I have noticed a bit of an improvement with the clenching, as she is opening her hands up on her own more often. She doesn't seem to mind the exercises at all, unless I do a body part too fast. It's funny how just not being slow enough can make her get agitated.



Am I proud of my daughter's progress? You betcha! We know that we can't perform miracles (but God can!) and will never compare her to Caleb's development, but I also don't think we should just sit back and see what happens. I want to give Abby every chance I can, and these little baby steps are going to turn into leaps and bounds! Go Abby, go!





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Friday, November 12, 2010 8:24 PM, EST

This was shared with me by my cousin Sarah, who is the mom of a preemie. The original story is about preemies, but you'll see that I have adapted it to fit our situation a bit better.



~*~How CCMS Moms Are Chosen~*~

(Erma Bombeck)



Did you ever wonder how the mothers of CCMS babies 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 take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew.

Forrest, Marjorie, daughter. Patron Saint, Celia.

Finally, he passes a name to an angel and smiles.

"Give her a baby with CCMS." The angel looks shocked. "Why this one, God?

She's so happy."

"Exactly," smiles God.

"Could I give a CCMS baby a mother who knows no laughter? That

would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea

of self-pity and despair.

Once the shock and resentment wear off, she'll handle it.

I watched her today. She has that sense of self and independence so

rare and so necessary in a mother.

You see, the child I'm going to give her has a world of its own.

She has to make her baby live in her world, and that's not going to be easy."

"Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know 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 witness to a miracle and 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 she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in

the air.

God smiles. "A mirror will suffice."







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