A Crazy Night!

Sometimes I wonder how or if I will be able to keep my sanity through all of this!  Last night JJ had a minor meltdown and decided to rebel by pulling on the oxygen tubing that is hooked up to Easton's trach.  While I was busy disciplining him, I failed to realize the trach had been pulled out!!  Easton started to turn funny shades of red and purple before I could get to the emergency replacement trach.  Luckily, it was close by!  When I went to put it in, there was no inner canula (the rigid part that fits inside the trach to guide it in)!  It had been cleaned at the hospital last week and they didn't put it back together correctly!!  Trying to put a floppy trach in a distressed infant is not my idea of fun!

The night got better when I decided to "just check" Easton's G tube to make sure the balloon was still properly inflated.  After all of the previous G tube drama, we didn't want any more to fall out.  Sure enough, instead of drawing back water out of the balloon port, I got formula!  I replaced the G tube, only to find a massive blow out of the balloon!  Something is definitely wrong with this picture!  We are seeing the doctor today and will ask that Easton have a pH probe done to check the acid level of his stomach.  If it is very low (very acidic) it could be part of his breathing problem and his bowel problems.  It hurts this little guy so much to poop!  He gets excoriated and bleeding rash all the time even though we are diligent with changing his diaper and putting on $40 butt cream...yes, it's really $40! 

Does the drama ever end??!!

Welcome!

Our family is finally entering the wave of the future...blogging! This seems to be a good way to share Easton's journey with others. The support that our family has received from so many people has been overwhelming! We would like to continue to share our story with others...and we continue to welcome all of your prayers! God has chosen us to follow a path that has definitely had its challenges, but we have grown so much and hope that Easton's story will provide strength and hope for others going through challenging times.

Easton was born with a very rare condition known as Acromelic Frontonasal Dysplasia. We found out about Easton's condition at a routine ultrasound at 20 weeks gestation. Pregnancy had been normal up to that point. I remember the days surrounding the news like it was yesterday. We initially found out at the OB/GYN's office. During the U/S I had commented that his toes looked funny...a big toe way out to the side. Then the tech said she didn't think she could give us a 3D image because his hands were by his face. In retrospect, she must have been feeling stressed about what she was seeing. Dan and I went to the waiting room and pondered our pictures before we saw the doctor. When she finally walked into our room, we both knew immediately something was terribly wrong before she even said a word. The next day we went to MFM for more detailed imaging. I have never cried so hard in my entire life! The doctor reassured us that kids are resilient and everything would be OK. He was right! As overwhelming as all of this has been, we are completely blessed to have Easton as our son! We had so many ultrasounds over the next 4 months and we were able to get to know our little peanut quite well. He entered the world in a hurry on June 28, 2009.
Easton was intubated on day of life #2, after failing CPAP. He had a tracheostomy 2 days later. He stayed in NICU for 40 days...then home! The challenges in the first weeks of life were crazy. We didn't know what to expect. I remeber absolutely rejoicing when he opened his eyes for the first time on his one week birthday...there was a time when Dan and I had questioned if he even had eyes since they were fused shut so tightly. Not many people have to worry about such basic things with their babies, but it sure makes you appreciate EVERY LITTLE THING!! From that day on Easton has continued to amaze us. He is so strong, yet so laid back! He is advancing so quickly and not far off from reaching all of the normal developmental milestones. We have quite a road ahead of us and look forward to sharing it with you!