Tuesday, November 6, 2012

1 Month Young!

Wow how this month has flown yet drug by!  Already November 6th!  I am not sure where the time went;  yet, it seems like we have been living in the hospital far longer than 1 month.  Crazy!  We got a few 1 month photos today.  I was sad because her eyes were not open and she still is not wearing clothes but that is ok.  I bought the stickers a long time ago that you put on the babies onsie--not totally sure she would make it a whole month.  I was sad we did not have a onsie to put the sticker on but so thankful we have a baby to prop it beside.  (See pics underneath........)  Gosh, I love her!

I wish I had better news to tell you, but I do not.  Sunni is still not doing too well.  She has been in pain and really uncomfortable the last two days.  They went up on her drips yesterday and again today.  She has also required her as needed doses pretty frequently as well.  Anytime she is moved or messed with she requires more oxygen on the vent, she desats, gets sweaty, turns colors, and of course screams her silent screams.  I hate it.  HATE IT!

She is super swollen and has been ever since she got out of surgery for the chest tube the other day.  There is more fluid going in her than what is coming out.  They played with/adjusted her TPN today so maybe that will help.  They can not give her any Lasix (a diuretic) because it will take out her electrolytes which are already too low.  She is so swollen she does not look like her sweet little self.

Today she had GI testing done.  Basically they put dye stuff down her tummy tube and take a series of Xrays to see where it goes.  That was at 10 this morning and they Xrays are still showing that it has not gone anywhere.  I am not sure what that means yet because we haven't talked to the doc but I have common sense to know that is not what it should be doing.  I will report more on this tomorrow.

My poor swollen baby :(

So Precious

1 Month Today!!



No clothes, no eyes.  Oh well.  Still sweet!

First time on tummy.  She likes it!


  1. Praying SO hard. My heart aches for all of you! Fight Sunni Fight!!

  2. Dear Whitney and family. We are still here praying and following Sunni's journey. I'm sorry it's so hard. Samuel at 1 month also hadn't worn clothes, or been held, and he hardly ever opened his eyes. Reading your post reminds me of how helpless and heart-wrenching that time was. There is nothing you can do except live in the moment, love her lots, keep engaged in what her medical team is doing for her. Holding your CDH-mama heart close to my CDH-mama heart, Whitney.