Tuesday, January 29, 2013

The Plan

We finally have a -plan-.  I kind of feel like we have has a planless plan for a while now.  I know that does not make sense but you get the point, right?

Sunni has been doing pretty good for the most part.  She has been throwing up a LOT though.  Saturday was a record high of 10-12 times just on the day shift.  It was miserable for her and heartbreaking to watch for me.  I hate it!  The amount of times she throws up all depends on if her g-tube is draining properly which is does some days and does not other days.  I keep Shawn updated and it was/is aggravating for both of us to feel like there is something they can do about it to make it start working again so that she will not throw up as much.  You can plainly see that is hurts her.  It is bile.  We all know how bad bile burns.  It even burns her skin where it gets on her cheeks.

Well---they say there is nothing they can do to fix the gtube since it has not been long enough since it was placed.  They did do another GI test on Friday to see if they could see what the problem was or if there was one at all but it showed it to be fine.  They put in 60cc's of contrast through the gtube and into her stomach and were able to pull 40cc's back out.  The rest *supposedly* went through.  If you have follwed Sunni's Story closely you know that nothing has gone through and past her stomach before.  I was shocked to hear this.  The contrast was in her intestines the next morning seen by xray.  I dont know think all 20cc's went through because she did throw up that afternoon.  This finding excited me!  I have hope that she will not *always* have to be fed into her intestines.

One of our night nurses somehow got the gtube bag to start working Sunday night so her throwing up has lessened HALLELUJAH!  Today she only threw up like 3 times.  She had a really good day--it made me happy.  When Sunni is happy, mommy can be happy.

Monday we got one of our favorite dr's back on service.  He will be on for two weeks so I think it will be a good two weeks.  He is really agressive and proactive.  I really trust him.  He is very straight forward and I like that.  He is not the kind to just set back and ride things out--he likes to see change.  So today he met with surgery and GI and they devised a plan. Finally.

Getting a GJ tube is the next step.  She can not get a GJ tube until 8 weeks after her last at the very earliest and her Gtube spot has to be totally healed.  It has to be a hole that is part of the body.  They will start looking and checking on this in 2 weeks (which will be the 8 weeks after last surgery).  The surgeon would actually prefer it to be 3 months (yes, MONTHS) after her last surgery which was December 17th.  So I am just going to assume that she will not be getting a GJ tube until around March 17.  I do not want to set myself up for disappointment.

So assuming March 17th is the surgery date and  assuming it will take a few weeks to heal and make sure that she is doing ok (eating, gaining weight, pooping etc)....I am just going to guesstimate we will be here til April.  I know this is what needs to be done but it is really heartbreaking to think about being away from home that much longer.

I can not believe Sunni will be 6 months (or more) when she finally gets to come home.  I remember reading a CDH blog about a little boy named Jude when I was pregnant and I was so sad for he and his family for being 6.5 months before getting to go home.  I guess I never considered that Sunni's Story might be written that way as well.  I still talk to Jude's mom from time to time on fb.  These CDH mom's are so strong.  As I read their blogs and hear how strong they sound I wonder if they are secretly feeling as defeated as I do some days.  No one understands until they have been there and done it.  No one understands what these babies endure and will endure for the rest of their lives.  Even when we get home life will never be the same.  I tried not to turn this blog into a pity party but just pray for me.  I am really struggling with this.  I just really miss my boys, husband, and family.

And to leave you on a sweet note..........

Peek-A-Boo Momma!

She has the CUTEST yawn.  It is a sweet sound.

Her legs are getting really bruised from her daily shot of  Lovenox.  Poor baby.

Really, Mom?  Hehehe

Daddy asked if I was happy---So Mommy sent this pic and  asked him what he thought.

Best lil Sister

A Gift from God


  1. Please let me know if you ever come across a CDH mama who doesn't feel defeated by it. I would LOVE to talk to her!
    Some day down the road, though, (and I can promise you this) you will look back on all of these shenanigans and it will all be a blur. Lil' Miss will be all settled in at home, and her somewhat rocky start will be something that sticks with you forever but only creeps into your mind every so often (for me, it's bedtime after everyone is asleep).
    I know that seems light years away, but you'll get there. Big hugs and big prayers.

    And I am dying for that pink bow :-)

  2. Whitney, yes to what Abby said. For sure I felt defeated so many times. And for sure you will one day get to the place where Sunni's early struggles are a foggy memory. I would not have believed that when we were in it. But Sam will be 2 on Friday and he has spent 6 months in hospital... that's 25% of his life and yet it sooo doesn't define him or us.

    Maybe I told you this before but I used to give myself from the parking lot to the ICU - down a couple of long hallways and through the main lobby of the hospital - to be really, really mad. In my head I would rail against the whole CDH machine. Then I opened the doors to the ICU and put my big girl pants on. It's okay for you to struggle - who wouldn't?! And it's okay to be sad and mad and oh-my-word I cannot imagine how much you are missing home and your boys. AND you can do this thing, Whitney. I know it.

    Praying for you.

    p.s. Samuel had 3 months of Enoxiparin injections as well. I remember those little bruises. Sam's nurses actually started a chart to show where the last shots were given so that they could alternate spots. :( Hang in there.

  3. Whitney....
    Prior to reading this Blog post, I said a silent prayer for little Sunni last night. That her vomiting issues would simply be some virus or bug which will swiftly subside. Being a CDH survivor myself, I feel such an incredible kindred connection to these children!! ;)
    Sorry, but I did not have time to read this Blog post in full.... I needed my sleep!! So now I read it.... ;-D
    Oh, I did not realize that you were still in the hospital!! No fun!! Hugs to you!! ;)
    I understand your feelings. Completely. I am certain that my Mom could have related to every single emotion while I was in the hospital. I, too, have an older sibling. ;)