A little background about Cyler

When we were about 17 weeks along an ultrasound found that our baby had a large omphalocele.  The doctors were "cautiously optimistic".  We were soo scared.  We began frantically searching on the internet for information...anything.  Following ultrasounds showed that our baby had heart defects (originally diagnosed as tetrology of fallot)  as well as the omphalocele.  I was hospitalized at 32 weeks and underwent daily ultrasounds where our baby had to perform certain things in order to "pass".  We were told by one of the doctors that our baby had "at best a fifty percent chance of survival".  We refused to give up hope.



Night before Cyler's heart surgery



April 7,2008 Cyler Joseph Lee Nelson was born via c-section at 36 weeks and 6 days.  That night the surgeon performed surgery on Cyler to try and put is abdominal contents into his body.  Cyler had some complications post op with his blood pressure.  He was unable to successfully be weaned from the vent and within about 2 weeks his sutures opened up revealing is abdominal organs.  This had to heal on its own and took quite a while. Cyler continued to have respiratory issues and it was decided that it would be best to repair the large VSD in his heart  he was only 2 months old.  They could only reduce the size of the VSD not completely close it because it was soooo large.  The doctors believe that it will continue to close on its own.



Following open heart surgery Cyler continued to have severe respiratory issues. He was diagnosed with bronchomalacia on the left side and the left lung pretty much stayed collapsed.  So then came the trach. Cyler was three months.

  



His health gradually improved over the next three months, his lung seemed to open up.  Cyler got his Gtube in September and finally came home the end of October. He was almost 7 mos old and it was just in time for the holidays. 



1st minutes home



Cyler has done very well at home.  Within about six months of coming home he was off the vent all day long.  Shortly after his second birthday Cyler began weaning from the vent at night (he decided that it would only take about a week).  He did great right away and now we only have one ventilator for emergency purposes. 

We are currently in the process of downsizing his trach for decannulation.  He began with a 4.5 and every two weeks were are going one size smaller till we get to a 3.0.  We are then to begin capping his trach.   He has a 4.0 right now and is doing great. 

The surgeon hasn't yet decided when the best time will be to perform the closure surgery on the omphalocele and he is still 100% tube fed.  All of that being said, Cyler is a bright, happy, and energetic 2 1/2 year old.  We are soo blessed to have him as our son.  His smile can and does brighten even the gloomiest of days.