Thursday, March 1, 2012

one week.

today we have been in this room, in the picu, for one week.  my things have accumulated in one corner of the room, where i am living out of bags in the most organized way i possibly can.  i know the doctors and nurses names, and we have developed a repoire.  i recognize the other parents who are living here.  i have accepted this as my home for a time.
shilo has mostly been stable for a few days now.  her sats and temps jump around, but they are easily restored to where they should be.  yesterday she started holding my finger again.  tears ran down my face as her little hand wrapped around my finger.  i want to scoop her up and make it all better.  i want to tell the doctors and nurses that she really just needs her mama.  but instead i organize and reorganize our room.  it's the only thing in my life i feel like i have control over at the moment. 
we will have a surgery consult today.  shilo has not had a bowel movement in a few days, and bile has begun to come up through her ng tube.  this points to a blockage.  she has been given suppositories, laxitives, and enemas with absolutely no results.  her little belly is so swollen it's pushing up on her diaphragm and causing it to be harder for her to take good breaths.  they had to increase the pressure on her vent as a result, to help her lungs inflate better.  some people with Ds have something called hirschsprung's disease.  the belly issues could point to that so we will be doing some investigations.
she is still pretty swollen, although for the first time in days she is peeing out as much as she's taking in.  her weight upon admittance was 8 pounds 8 ounces.  yesterday she weighed 11 pounds.  it's all water and stool.  i don't even know how to begin to describe how swollen she looks.
as hard as this all is, i have been overwhelmed, in an amazing way, with the people surrounding us.  we have tons of friends back home who are stepping in and taking turns caring for abigail while jason is at work.  i have had enough visitors to help keep me sane amidst all the beeping.  i was given a kindle to use while here.  i have been gifted snacks, gift cards, and meals.  magazines, books, and things to create with.  i have been sent messages of prayers, kind words, and encouragement.  these things make it possible to sit here day in and day out, and hang on to hope.  they let me know that jason, abigail, and i aren't the only ones crying out to God for our sweet girly.
so thank you to all of you.  please don't stop praying for our little peanut. 
a few decorations (i've added more flowers to the head of the bed), a picture to let the doctors know who she relly is, and a sweet little girl in there.


  1. Lots of love and prayers. Remember to take care of you. Don't forget that.

  2. Praying for you and your family. Shilo is so lucky to have such great parents looking out for her.

    Did Shilo ever have normal bowel movements or has this been an issue from day one? Just wondering as kids with Hirschsprung's usually have problems from the get go. Have they talked about a lower GI to see if there's a stricture?

    Hope Shilo starts to pee out that extra fluid and start pooping so she can be on the road home soon!

  3. Continued prayer for your sweet Shilo. My heart breaks a little when I read this post. I'm a mother, I read your words and I can only imagine how painful it must be to watch your baby fight and not be able to take that illness from her. I know you'd trade places with her in a heartbeat, we are mothers and our heart's beat to love our babies.

    It makes me smile to read that you have wonderful people around you. I hope you and your family continue to be showered with love and blessings. Stay strong and know that your family has made it's way into this stranger's heart....and I'll keep praying till all is well again!