October 16, 2012

I just want to cuddle

   Today was kind of a rough day.  Sadie is sick for the first time in her life, nothing major just a really bad cough.  A cough that kept her (and me) up all night.  It wasn't rough because of the lack of sleep.  It was rough in an emotional kind of way. 
   First reason is because I am always very aware of her respirations.  I count them, listen for the them, make sure they sound the way they are suppose to.  Why am I so aware of them?  Because that is one of the top causes of death in kiddo's like her.  So even though I don't dwell on it, it's always on the back of my mind.  But that is not the reason for my emotional day. 
   My reason is is that I just want to cuddle her, especially when she is sick.  For some reason, Sadie does not like to be held.  It has been like that since day one.  The medical world really encourages kangaroo care, especially for those micro and tiny babies that should technically be inside the womb still.  Kangaroo care is when mom and baby are skin to skin.  It does amazing things for the baby's heart rate and respirations, basically, the all around well being of the child.  Dr's and nurses very highly encourage it not only for those reasons but because these little babies can't nurse and they need that closeness, heartbeat and warmth from mom.  It's a bonding time for both of them.  I wanted nothing more then to bond in this way with this precious little baby of mine.  I wanted so badly for her to nurse.  I loved doing that with my other two girls.  It never dawned on me in a million years that I would have a baby that didn't want to nurse (or eat at all for that matter).  So when this issue came to light, I wanted to do as much kangaroo care as possible, in hopes that that would encourage her to nurse, that it would trigger some kind of a natural reaction in her brain.  Everyday I would go to the NICU, set up my curtains around her isolette, get me ready, get her ready, get my chair ready, get into position.  The first day she loved it, she layed on my chest for hours and hours.  I was in heaven!  The next day I tried, she did ok for a few hours.  The third day she only tolerated it for maybe an hour or so.  The next day and the next day and the next day, not at all.  That was the end of the kangaroo care.  I tried a couple more times in the NICU and then again at home.  She hated it!  But not only did she hate the kangaroo care.  She hated being held.  What kind of a baby did not like to be held?  I cried and cried and cried.  All I wanted to do was hold this angelic little baby that has been given to me.  Sadie had other plans though.
    I've come to except this, I still don't like it (I hate it with a passion!), but I have to except the fact that she is her own little being who has STRONG preferences.  Why should I expect her to be any different then my other two girls, they also have very strong preferences.  I don't understand it, but I try to.  I try to rationalize it the best that I can.  Even the best of my rationalizations do not make it any easier.  Maybe her ears and the loss of hearing make her dizzy or something.  Maybe her brain being underdeveloped makes her feel unbalanced when being held.  Maybe if her cranial nerves are screwed up, then maybe the rest of her nerves are screwed up too, and it hurts to be held.  Maybe since her core muscles are weak she doesn't feel like her chest has enough support to hold her body up and she feels like she is crushing hers lungs and can't breath.  Maybe because her neck muscles are weak it hurts to be held because her head falls all over the place.  Maybe since her body jerks every once in awhile because of her neurological issues it scares her and she feels unsafe.
   I can some up with a million "maybe" reasons.  I will probably never know her reason and if I do find out will it change anything?  Maybe, maybe not.  It wouldn't change the fact that it still SUCKS that she hates to be held.
   Today, I just wanted to cuddle her.  Make her feel better.  I tried.  It made her feel worse.  So I laid her down next to me and she squirmed and squirmed her way closer to me until she could touch me and then fell sound asleep.   That's her way of cuddling with me.  I cried cause I couldn't do it my way, but then I cried because she found a way to comfort me and cuddle me in her own way.  I love this little girl.

*FYI     She will let us hold her occasionally and she is getting better about it as she is getting older.  However, it is only in the up and down position, and never in the cradle position.

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