Friday, June 7, 2013

Looking Back

Brinkley was discharged from the hospital on Wednesday morning.  We left with no new information and on continuous oxygen.  This means that we are, in a sense, worse than before.  I would rather have my baby at home on 02 rather than living in the hospital though, so I guess it isn't so bad.  

We did find out that he has severe sleep apnea.  After a 2 1/2 hour visit with Dr Shippey yesterday we returned to the hospital last night to be observed in the sleep lab again.  This time he wore the mask and used a cpap machine.  The techs observed him all night and watched his numbers to see what settings work best for him.  We will return to Dr Shippey next week to actually get our machine and start using it at home.

On a bright note, he turned 9 months yesterday and has finally hit twelve pounds.  We saw Dr Everman, our genetic specialist, after leaving the hospital on Wednesday and he says that we are on the right track and covering our bases for now.  Even better is that our Jeremy (my nephew) returned from his year long deployment on Tuesday.  Last night Brinkley got to meet him for the first time!  

We are being referred to an ENT at MUSC to continue working through Brinkley's breathing issues.  We hear that a pediatric ENT is coming to Greenville soon, but right now we don't have one, so we'll be commuting for those visits.

The last year has been a wild ride that I could have never imagined.  This week I looked back at my journal and wanted to share with you where we were a year ago today.  

June 7, 2012

This journey has not been at all like I expected.  I guess that is why I shouldn't be surprised by the latest news.  

We were excited about our 20 week ultrasound.  We would finally have a face and hopefully a name to put with this life growing inside me.  Reese and Bryan were both anticipating a girl.  I purposely chose not to dwell on it so that I wouldn't be disappointed either way.

Bryan kept saying it doesn't matter as long as it's healthy.  But, I know he really wants a baby girl.  It only took a few views on the ultrasound before she confirmed that we will be adding another boy to our family.  

We went into the exam room to meet with Dr Frederick expecting to hear that I needed to continue to work on gaining weight (I've lost a fair amount) and that he looked good.  That's what every family expects, right?  Unfortunately, that was not the case for us.  She did talk about my weight, but that was where the expected ended.  His heart looks healthy and is working properly, but is not positioned correctly.  On top of that, he has a thick fold on the back of the neck.  Not really understanding what this may mean I am listening intently.

She would like us to get a second opinion and a blood test before making any assumptions or decisions.  She referred us to a specialist and ordered her nurse to do lab work.  We are to expect the lab work to take a week (this was last Tuesday).  As with any lab work she has done, I expect a call from the nurse or a copy of the report mailed to me.  When I had a message from Dr Frederick personally just two days later, I knew our journey had just taken a turn.  I called her back and she immediately took my call.  After fifteen minutes of explanation and questions we found out that we are at high risk (1 in 50) for Down Syndrome.  She assured me that this is not a done deal.  It is still one in fifty.  The specialist will do a more in depth ultrasound and amniocentesis for more definitive answers.  

I've had a week now to think about this and all I know for sure is that God is in control and He will be beside us no matter what.  Living with and raising a special needs children has come up multiple times in the last week from unexpected places.  I don't know if this is a way of preparing me for what's to come or not.  I won't know anything else until we see the specialist next Friday.  Until then, I am going to enjoy the quality time that I have with my boys and ask God to give me peace.

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