Kayla Mae Olmstead

Kayla was born with Left-sided Congenital Diaphragmatic Hernia (LCDH). When she was born she was in the NICU for a total of 55 days. She reherniated two years later, had her repair surgery in May 2011 and spent 11 days in hospital recovering. She is a tough little girl and we are truly blessed to have her here.

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CDH SUCKS!

The past few x-rays Kayla has had have been iffy- so our doctor wanted us to come back and have another done after she turned 2.  Unfortunately this x-ray was even worse.  Kayla will have surgery on May 5th.  Her diaphragm is stretching to a point where the stitches are coming undone.  She is growing, and the patch can't handle it.  I guess it's safe to say I don't really understand what is happening, all I know is the Doctor said she needs to have surgery because if left untouched, she will reherniate.

I was in shock when he first told us... and I wish I had a picture to show you the x-rays.  He showed us the one taken on Wednesday and the one prior to that about 6 months ago.  Her patch side diaphragm has a massive curve to it.  Her normal side has that natural curve to it, but the patch side, is looks like a sling shot thingy when you are about to shoot a rock or something at someone.  That is what the curve or rounded tip I am talking about....Her one about 6 months ago was a whole rib below the one she just got.  This patch is stretching at a crazy rate, I can only imagine how many stitches have come undone.. and when I mentioned the puking fiesta Kayla had several months back... the look on his face was the look of concern... he didn't say anything, so I am just speculating.. but I think this vomiting thing was related to this patch thing...

Anyway - Kayla's surgery will be on the 5th of May... 27 days away.  I'm extremely stressed, depressed and overwhelmed.  The thought of having to see Kayla with tubes and needles and drugs again frightens me and most certainly saddens me.  She is going to have no clue what is going on, all it will look like is that Mommy is making her get all these painful things done to her for no reason as she feels and looks just fine.

I feel absolutely helpless... The only thing I can do to make myself feel "ok-ish" is to buy her things that I think will make her comfortable in the hospital.  I plan to make her some hospital gowns- trust I'm not crafty enough to really make one, I'm just going to buy some cute nightgowns with Minnie Mouse or Dora on them, cut the back and have my mother in law sew the ribbons on for the closure in the back.  I am going to buy her some slippers, and a bunch of other things she loves.

I honestly have no clue what to do.  I don't know what to expect, and I certainly don't know how to keep a crazy girl calm so she won't rip stitches out on her tummy... So please CDH mommys and daddys if you have any ideas for me, please share them. I'm at a loss...And part of me feels like this is my fault.. this whole CDH crap.. and now my daughter has to undergo a third surgery.

I feel absolutely helpless :(

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1 comments:

Jennifer Tenney said...

Hugs Kate! I am so sorry Kayla has to have another surgery. I know she will do wonderfully through it, but I know that I would still be terrified and sad and depressed and everything you said as well (Dakota has a stretched patch as well so we will see what it looks like at the next x-ray). On all the CDH blogs I have followed, every time the baby reherniates, the surgery seems to go very smooth and they are out of the hospital within a week. For ideas on how 2-3 year olds handle it I would recommend reading Claire's blog williamsfamilytn.blogspot.com and sofia's www.sofiascdhstory.com. No matter what though, it still sucks! Above all, HUGS!!!!!!

Jennifer
jennifertrafton@hotmail.com

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