Friday, November 30, 2012

The Roller Coaster Continues..

Just when you think you can breathe (no pun intended) in NICU something else happens.

Sunni is doing excellent in most areas; most recently BREATHING!  As of yesterday she is on cpap!  This is a huge deal!  HUGE!  One doc suggested that some day she may have to be trached----Sunni proved them wrong.  She is doing so good on cpap that she will probably be on a nose cannula or maybe even nothing by the end of next week! :))  Praise God!

So my last blog left off on Monday with the plan on being extubated the following day.  So I went in Tuesday morning with that HIGH hope.  I was so excited!  I had planned on videoing it and taking lost of pictures. Well... she had just got back from having the upper GI test.  She has had this once before and it ended in the same result.  None of the barium passes through and she ends of gagging and barfing it up ALL day long.  It is horrible to watch.  HORRIBLE!

During rounds they explained that none of the barium passed through her bowel and that she was going to have to have surgery.  They believe that she has pyloric stenosis.  Food from your stomach passes through your pylorus into your small intestine.  In pyloric stenosis the muscle is thickened and will not let that food pass.  Sunni has all those symptoms but they did an ultrasound and the muscle does not look as thick as it typically does with other cases.  At that point they decided surgery was needed to correct this and told me it would be Thursday or Friday.  AND since she was going to have surgery they were not going to extubate her since she would have to be put right back on the vent for surgery.  I was very upset.

I called Shawn and let him know and he immediately made plans to drive down Wednesday so that he could be here for surgery.  They originally told me the surgery by Sunni's standards would be a piece of cake.  So Wedneday Shawn drove down and Sunni had a terrible day.  She is now off on both drips so she is awake and alert and she was very aware of that vent tube.  She gagged and spit of all day Tuesday and Wednesday.  Other than that not much happened.  We waited around for surgery to set a time for surgery and never heard a thing.

Thursday morning Shawn made it up there and she was extubated!  They didnt even call and tell us.  And they had already made rounds and did NOT want to do surgery. They wanted to try a medication first that would supposedly relax the muscle and let food pass.  I think it was called atrophy.  I could be wrong though.  At that point I felt like throwing a fit that would top any fit my 3 year old has ever thrown.  Shawn just drove 600 miles for you to decide medication was an option?  Are you serious?  Why hasnt this been tried before?  She hasn't eaten in 53 days.  And this is just now brought to the table?  I was still made about not getting to be there for the extubation as well. GRRR

So they explained to us how risky this surgery would be.  She has already been through so much they needed to give her time to rest and heal.  If they do the surgery she will more than likely lose her spleen the surgeon said.  All the scar tissue would be a risk.  And the main issue being that if it is truly pyloric stenosis and since her muscle is not thick like they typically see they could damage it all together.  I did not ask exactly what that meant but I have a pretty good idea.  The surgeon was very clear the surgery is not wanted, a last resort, very risky and dangerous.

WELL GUESS WHAT!!  Today they say they HAVE to do surgery because that medicine they wanted to try is in a shortage across the US.  Our luck.  That is all I have for now.  Shawn and I have a very difficult decision to make.  As far as the docs are concerned this is our only option.  I feel like there has to be a way of knowing that she does or does not have pyloric stenosis without cutting her open first.

The longer she is on TPN the more likely her liver will be damaged.  Please pray for our decision making along with the doctors.  Pray that if anything can be done other than surgery that it comes to light.  Pray that if she does have to have this surgery that it is much more successful and easier than they are predicting.

CPAP!  Yay!  aka  Elephant Mask

Sooo Beautiful!  

I love these bracelets!


  1. Whitney,

    I'm so Proud of you and Shawn. Sunni is a Special child deliver to Special Parents! I know this is really hard on the both of you not to mention your boys but there are alot of prayers lifting you all up.

    Just pray about the surgery and I know you might not know anyone in the Houston area but try to get a prayer ring around Sunni.

    I wish there was more that I could do for you all then donating to the auction and bidding on items. Wishing you all the Best and may God give you comfort, peace and wisdom.


  2. Were here Whitney and Shawn... were praying, so many people are praying. Love little Sunni Nicole.

  3. I'm so sorry to hear about your little one fighting more than one battle! Our son also had pyloric stenosis and it was horrible. At one point he went about 5 days without any nutrition before we got it figured out and he had surgery. I was fit to be tied!!! I'm not all up to date on your daughter's journey or her state of health, but if surgery was a safe option, I would choose that over waiting for a medication to do its thing! Poor baby! Here is the story of our journey of CDH and pyloric stenosis. I was pretty fed up and worn down by the time I wrote my blog entries so pardon my snippiness. ;)

  4. Oh what a touching story you and your special baby is. A strong baby to be held. Please dont stop trying and we prayed a lot that everything will be alright.

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