Monday, January 23, 2012

It's getting more real

I just made all of my appointments with the high risk OB department at MUSC.  At my last regular Ob appointment I was diagnosed with gestational diabetes so now I have to see a dietician in addition to everything else going on.  At least it is something manageable that I can control.  Next week I will have a follow-up ultrasound so we can see what organs are in her chest cavity right now.  Hopefully nothing else has moved up and she still has a moderate defect.  That in addition to me taking care of myself to keep her in as close to her due date as possible is going to help give her the best chance.

As it stands right now we are getting mentally prepared for the struggles that Lily will face and the pain in watching her struggle and having no control or ability to take her struggles from her.  I am encouraged by the success stories that I have been hearing including that of our own nephew and am trying my hardest to avoid anything negative.  Please if you can keep us and our daughter in your prayers.

Tuesday, January 10, 2012

Where we began

In August 2011, we found out we were expecting (unexpectedly) again.  Our first daughter was getting ready to turn two and once we got over the initial surprise, we were excited for Izzy to have a sibling.  We had the anatomy ultrasound on November 22, 2011 and found out we were having another girl.  However, 5 minutes later our world would be turned upside down.  We found out our new baby girl would be born with a Congenital Diaphragmatic Hernia (CDH).  We were completely devastated.  As a family we had already previously dealt with this diagnosis as our nephew was born with the same condition.  He, thankfully, is doing well today so we weren't completely hopeless.

CDH results when part or all of the diaphragm fails to form.  This allows the abdominal contents to enter the chest cavity which can impede on lung development (and sometimes heart development).  The severity is determined by what is in the chest.  Our biggest concern when she is born will be her lung functioning but there will be other issues as well.  I will expand on everything is later entries.

After telling some of our family, we started trying to come up with a plan.  We went to visit a surgeon in Florida and also with the team in Charleston at MUSC (where we live).  After much debate, crying, soul searching and agony, we decided to have her at MUSC.  This is where we began....hopefully this story will have a happy ending.