Tuesday, February 12, 2013

Raygen's 1st Week 2011

Since this week is CHD week I wanted to share Raygen's Norwood story.  This was the first time I held Raygen right after she was born.  I got to hold her about 10 minutes before they took her to prepare her to transport to Seattle Children's. 
 Raygen in her Carbon Dioxide Tent.  Raygen had a hard time regulating her Oxygen so she spent about 4 days in her little tent prior to her surgery.  We were not able to hold her for long periods of time because she needed to be in the tent. 

 Here is Raygen after her surgery.  Her chest was open for about 5 days.  During this time she slept mostly.  Of course we couldn't hold her, but we did talk to her, rub her head, and hold her hands.  We rarely left her side.
 One of those precious moments with her eyes open.  She is amazing.
 Raygen after her chest closure.


 After Raygen's chest was closed and she was taken off the ventilator and we were moved to the floor.  She was about a month old.
 Zoie and my dad holding Raygen for the 1st time after her Norwood.
After we were on the floor for a few days it was discovered that both Raygen's vocal cords were paralyzed.  Raygen ended up being rushed to ICU about a week on the floor with very high CO2 levels.  That was the closest we came to loosing our girl.  Raygen ended up having to have a trach till her vocal cords recovered. 
We got one tough girl!!
Here is Raygen's Christmas pictures.  I can't believe she will be two on March 23rd. 
In honor of her birthday I have designed a shirt at Cafe Press and hope to show you all soon and offer you the chance to purchase one.
Remember if you know someone who has CHD or has a CHD child give them a big hug this week.
 
1 in every 100 babies are born with CHD.