Wishful thinking?

A few months ago I came across "The Heterotaxy Network" on facebook.  Its been an amazing support group for all heterotaxy families (remember there aren't that many cases out there since its a rarity).  Through some posts I came across a mother named Necia.  She's from the Chicagoland area and has a daughter, Hallie, who is 6 years old with Heterotaxy.  She is currently at Children's recovering from surgery. You can learn about Hallie at helpinghallie@groups.facebook.com.  Necia came to look for me at the NICU this morning.  As she was leaving the floor as I was heading in.  It was so wonderful to meet another heterotaxy mother who has already undergone a lot that we're just beginning.  It was nice to hear things to look out for, and just have support.  Although she's a total stranger, I felt an instant connection to her.   There's still so much more I have to learn about Heterotaxy.  Right now, I'm just thankful Zoe's story isn't as complex as other Heterotaxy kids.

So today was brutal on me....seriously one of the toughest days in the NICU for me.  Thank goodness for one of Zoe's daytime nurses, Lindsay.  She really takes out time to explain everything for me, not once but sometimes three times.  Zoe's Anderson tube isn't really getting any stomach bile out unless its pulled out by the nurses.  The pediatric surgeons wanted to have radiology take an x-ray of her stomach to see where the tube was, and also to see if there was another blockage in her intestines.  We headed down to the x-ray room.  They had to put another tube down her nose and then add contrast (more or less a dye) in the tube so the radiologist could watch the dye and see where it went.  Zoe is really calm, she rarely cries (she'll sit in a pee pee diaper for hours, she just loves to be held).  I've never heard my daughter scream bloody murder like she did.  Tears ran down my face, I couldn't watch the doctor place the tube down her nose.  I asked if all this screaming was going to cause her heart to be in distress (logically I knew the answer to this already, but I was scared).  It was a very long hour in x-ray.  The good news is that there was no blockage where the surgery was (in her small intestines).  Now they are currently waiting a few more hours before they do another x-ray to see if it has gone through the large intestines and then head towards the bowl.

After the x-ray was done, Lindsey let me carry her up to the NICU in my arms.  I just followed Linsdey with the transporter and IV bags.  Zoe instantly calmed down and went to sleep.  I didn't want to leave her the rest of the afternoon.

So we won't know exactly when she'll start eating.  Now it could be a few more days or next week.  Not the news I wanted to hear either, because now her stay at Children's is longer, but I just have to take one day at a time.

Now on the contrary to what I heard 2 days ago from the cardiologist.  Now they are thinking she may not need open heart surgery.   The cardiologist drew a picture for me to help me understand what was going on with the VSD hole and her tricuspid valve.  Long story short, we really won't know until later on.  However, they suspect it won't cause her any problems.  She may very well just have a hole in her heart for the rest of her life.  The tricuspid valve is helping shunting blood flow.  If it continues to do so, and the hole doesn't get any bigger, they will not do anything because the body is compensating for that hole.  I guess Zoe will show us signs if the hole is causing her distress.  She'll sweat, won't gain weight, won't finish bottles, breathe fast, nails may change colors.  So its a wait and see.  Not exactly the best news, but it makes us stay a little bit more optimistic and hopeful that maybe our little miracle baby will continue to show God's miracles.

Here are some sneak peek photos from last night's session with Kelly Vanderploeg Photography (http://www.kellyvanderploegphotography.com)