Dylan James Perry 3-11-11

So I knew keeping up with my blog might be a little hard after having Dylan, but I guess it's proved to be harder than I thought. 

Dylan was born on March 11, 2011 at 12:07pm via a C-Section.  I was 37 weeks and 1 day.  We were trying to make it to 38 weeks at least to give Dylan time to grow, but I developed Preeclampsia and was in the hospital a few times for my high blood pressure, and the visual disturbances and other things caused by the preeclampsia, and on our fetal measurement scan of Dylan at 37 weeks, we saw that he was measuring a little behind on his weight, and we weren't sure if it was my preeclampsia that was effecting his growth or not, so we just thought it was best to get him out for the safety of both of us.  Dylan was 5lbs 5oz when he was born. 


Normally when I write a blog post,  It's a little bit of the fact's, and a lot of my feelings......  but right now, I can't even seem to find the words to express my feelings. Honestly, I don't really even know how I'm feeling, and maybe that's because I have not allowed myself the time to sit and really think about how I'm feeling, otherwise I don't think I would have made it this far.  So for now I'll stick to the fact's to keep you guys updated, and maybe I'll get to a post that involves my feelings when I'm ready.

Dylan had his first surgery on March 15th, when he was 4 days old.  We went to see Dylan on Monday morning after he was born, and one of the people from Dylan's heart team told us that they wanted to talk to us about Surgery for probably the next day.  We set up a time to talk to them later that afternoon, and before we left they told us that there was a possibility they were thinking about a different surgery called a Hybrid-Norwood, instead of his Norwood to buy him some time to grow since he is so tiny.  When we had talked to Dr. Lamberti a few months ago before Dylan was born, he told us that Dylan was not really a candidate for that surgery because of his "complex anatomy" ......... so I was kinda confused as to why they were considering it.........  but when we met with them later in the evening, it was just one person, Erin, who is a part of the surgical team.   She told us that she had talked to Dr. Lamberti and that he wasn't intimidated by Dylan's weight and that we were going to go ahead with the Norwood the next day.  We spent an hour and a half going over all of the risks, the procedures, and everything that comes with the Norwood, only to have one of the Cardiologist's walk in right before we were going to sign the papers, and tell us that she talked to Dr. Lamberti, and that we are NOT doing the Norwood......... that we were going to do the Hybrid- Norwood instead, except for we were not doing the stent. Normally in the Hybrid-Norwood,  they put bands around his Pulmonary Arteries and put a stent in to keep his patent ductus open until he's ready for surgery, but because of Dylan's complex anatomy, he is not really a candidate for the stent,  so they did the bands instead and are keeping him on the PGE medicine that keeps his ductus open.  A side effect of the PGE is apnea, where dylan stops breathing, or just forgets to breath.  They seem to have gotten that under control right now, and he has not had any apnea episodes in the last 24 hours. 



Right now, that is where we are at.  The plan for the next 4-6 weeks is just to give Dylan time to grow and get stronger before his Norwood.  So we plan to be in the hospital with him for at least 3 months :(
We also found out that Dylan is on the "higher risk" side of the statistics for the Norwood because of what the surgeon calls his "complex anatomy" and also because he has what they call Sinusoids in his left ventricle which apparently makes surgery a little more difficult. 
All we can do right now is just to be there for him and let him know that we love him and we are with him every step of the way.  He had a really good day yesterday with his feedings and his breathing, so we are hoping that it will continue that way, and he'll be able to grow nice and strong for his next battle in 4-6 weeks.

We want to thank everybody for their love and support and prayers and thoughts.  We wouldn't be able to make it through this without everybody's support.  It means more to us than you know!!  Thank you!!

 <3