Tuesday, May 27, 2008

Our Moment

When we learned we were going to have an extremely premature delivery we knew we were in for a rough ride. Once we arrived in the NICU we were under the impression that our baby would learn to breathe, eat and grow and we were going to take her home around her due date- obviously this was not the case for us....then we learned that she would need more support...a few tubes for a couple of years...then she would go on to lead a normal life. We are learning that the affects of prematurity last far beyond the NICU or a few years with breathing support...


All parents who have kids with special needs have their moment. Whether it be in a doctors office when a diagnosis is given or the living room when they realize their child is needs beyond that of a normal child. Remember the scene in Mr. Holland's Opus when the mom drops a pot on the kitchen floor next to her toddler and he doesn't startle a bit? (they soon learn he is deaf...) we had a similar moment this weekend.


We took Faith to a graduation party this past weekend for a friend we met in the hospital who is fighting cancer. Faith did pretty good at the party and looked as though she had a good time. She did not "shut down" as she typically does when we venture out to the outside world which we took as a good sign. When we came back it was time to put Faith to bed. We knew this would be difficult- every time Faith goes anywhere (to a doctor appointment, outside on a walk, etc.) she does not settle down. In fact she gets wild! I remember after her first birthday party she didn't sleep for a week! This night her not settling down was different. I left her side to go prepare her formula when glanced at her in the video monitor and saw her banging her head against the crib mattress. It wasn't just the banging that bothered me- it was the repetitive motion, the way she was inconsolable when we picked her up, the way she was in a world of her own. We've been around enough babies to know what Faith was doing was not typical.

Brian and I have both knew something was going on neurologically with Faith for a while now- it's something we've never really talked about until that night. Several health professionals have also commented- her pediatrician noted her poor reflexes and asked if she has ever had an eeg or head ultra sound, her OT has picked up on her repetitive behavior like spinning wheels (they call this "stimming....")

When a baby is born prematurely their nervous systems are not fully in tact. While other babies's nervous system develop in the comfort a their mother's womb, preemies are forced to develop these organs in the outside world. As you can imagine this is a shock to the system for such a tiny, under developed baby. This results in sensory issues and that's what we see in Faith. The sensory scale has a wide spectrum- one end severe autism, the other some minor sensory sensitivities We are not sure where Faith fits on this scale, but we do know she has some form of sensory processing disorder. When she gets over stimulated she doesn't know how to take in all of the information, organize it, and make sense of it. Instead her body goes into hyper defensive mode. She is also extremely hyper sensitive to textures and touch. She does not like to cuddle, does not make eye contact (this can be due to her vision loss) and doesn't get typical baby games like peek-a-boo.

That night Faith wasn't the only restless person in the house. My mind raced with what if's and what nows.... we can deal with ventilators and feeding tubes but this stuff scared us. The thought of how long term this could be was over whelming, the fear of not being able to give her all she needs consumed us. How are we going to do this?

The following morning Brian appeared from Faith's room beaming like a proud father at a high school graduation, "I was sensitive to Faith';s sensory need last night," he said "I figured out a new way to suction her where I don't need any light."

Ahh...ok.... I sighed with relief..how are we going to do this? Like everything else we've encountered-one step at a time.

And we are going to do just fine.

:)




8 comments:

Ann said...

I wish I could give you guys a {{{hug}}}. Without question, the cognitive/emotional issues are so much more difficult than the medical issues to come to terms with. It's a whole other set of dreams that have been squashed and that hurts. While you will "dream new dreams" for Faith, you do get tired of always having to "give" a little here and a little there on your dreams for your child. But, I can assure you that, at the end of the day, you come to accept (if you haven't already) that as long as your child feels loved ... any other dreams that may come true are a bonus.

Much love,
Ann
aka Jack's mom

Kristie said...

Your post is awesome. You are wonderful parents. You are right you will learn each day you will learn more and more about Faith and her needs.

Anonymous said...

Ok we are going to try this again!

I have to agree with what Ann (Jack's mom) wrote! You all have been through more ups and downs, triumphs and disappointments, baby steps and giant steps that many people will ever do in a lifetime , if at all!

Faith is a special child in many ways other than medical. She is so special because many thought she woudldn't make it this far at all.

She has shown MANY that you have to believe and trust. She has a will to strive and work hard...I wonder where she gets that from! HA-HA

I miss "my baby" and I think back when I first met her and how she smiled and cuddled close to us....boy does she love kisses! =)

She has grown in many ways and though this next chapter will have some "mountains" I have NO DOUBT that you will get through them day at a time...even though you, I am sure at times, feel like its one thing after another, you WILL prevail over anything thrown your way.

Faith is SO BLESSED that God picked you guys for her and vise-versa!

Ann is right any other dreams that come true are a bonus..and there will be many more..you will see.

We love you very much adn I wish I was there to hold all of you! =)

Aunt Susan and Texas gang
XO XO XOXOXO extra for ya!

Alicia said...

I have been reading your blog for a while and am touched by your family's story. Like you, I live in Colorado and also have a special needs daughter with a trach and a g-tube, who is now 14 1/2 months old. Your entries have given me hope that not only are there other people out there like us, but that we can make it one day at a time with God's help.

I would love to hear from you so we can swap stories and maybe even meet some day. My name is Alicia and my e-mail is
anjcortez@hotmail.com.

Please know that I am praying for Faith and you and Brian everyday.

Anonymous said...

Just checking in today with my sweet girl =) AND you and Brian!

All is good here and getting ready for a 12 day vacation to teh beach before Steve goes to bootcamp. I will give you his address and if you didnt mind please write him a couple of times. THIS is a new officer bootcamp and VERY intense and will need encouragment. I KNOW I can count on you. =)

Give my girl a hug and a kiss and a squeeze !

Love you
Aunt Susan and gang
XO XO XOXO

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