A Day to remember...

Yesterday we went to Domino Farms in Ann Arbor to meet with Evan's hand surgeon.  FINALLY!  It was a nice ride there but I was a bit anxious.  I tried to keep the conversation light, so Aaron and I talked about all kinds of things, the weather, work, possibly looking at buying a house in the spring, etc.  Before I knew it, we were there.  I'm not exactly sure what else they do there, but I saw all kinds of animals as we pulled into the parking lot.  There were long horned bulls, striped cows from Scotland, and even some alpacas.  It was neat see them all grazing all around the building.  I wish I had taken my camera, I definitely will next time we go there.  The wait wasn't too long.  We got some x-rays and then we waited a bit more.  When we went in to see the doctor, the nurse was super nice.  She took a look at Evan's hand and said, "Oh, that's not too bad."  She said that they see cases like Evan's at least once a month.  That made me less nervous just knowing that Evan wouldn't be a first for them.  The PA came in first and then went to get the doctor.  When Dr. Chung came in he was very serious looking.  He asked some questions and took a look at Evan's hand.  He said it wasn't too bad, but it WAS going to be tricky to fix due to the location of the bands.  He said that we will wait until Evan is a few months older before we do his first surgery, there will be more to come as he grows.  When we do, he will have the band on his left leg released, some of the bands on his hand, and also the band on his right big toe.  Then someone came in to take photographs of Evan's hand so the Dr. can take a look and figure out what exactly he will have to do to repair Evan's fingers.  I am NOT looking forward to ANY of these surgeries, but I know that they are necessary to keep Evan growing and developing the right way.  I am nervous and a bit scared of what the recovery will entail on my part. I am not sure what to expect as far as the healing process and what we will need to do to take care of Evan properly so he heals the best he can.  It will definitely be interesting to say the least.  I will update more as we get more information, right now it is just waiting for them to schedule the surgery, it should be in November or December.



Alpacas~Taken with my phone

When we left the building and walked to our car, this is what we saw.  The alpacas had made their way to our side of the building and were grazing on the hill right in front of where we were parked.  It was kinda cool. :)

The Next Chapter

   My prayers were answered that Tuesday morning, and I was so wrong about what I was actually capable of doing. Aaron went back to work a few weeks ago and it is finally starting to feel like we are a real family.   I am a fully functioning member of society.  I can take care of Evan better than anyone else in the world can.  I am eating healthier because of my heart condition and am monitoring myself well.  It has been 1 month since our nightmare ended and I was released from the hospital. It's been an interesting ride to say the least.  I have an appointment to see the cardiologist in a few weeks to see how I am doing.  I hope he decides to do some tests to see how well my heart is now.  It will be nice to see if my hard work has paid off. :) 

     Evan is doing great. He is growing like a weed and changing every single day.  I have decided to take a picture of him every day until he is a year old.  I wanted to take pictures so I don't miss out on anything. We went to the orthopedic surgeon @ U of M the other day and she says that Evan is just fine.  As of right now he does NOT need surgery on his legs.  We couldn't be happier.  She doesn't deal with  the cosmetic part of ABS, so she is referring us to a hand surgeon that she works with to check out his hand.   Now we are just waiting for their phone call.




One day old




Two weeks old




Almost 6 weeks old


  

Evan's Story

   

When Evan was born he was perfect in every way.  Our  pregnancy, labor and delivery were absolutely perfect.  I thought, “This can’t be any more perfect!”  After my “baby high” wore off at the birth center, I noticed there was something a bit different about Evan’s right hand.  I kept thinking that he had somehow got himself tangled in his umbilical cord because there were little "strings" hanging from his fingers.

     The midwives did a great job of hiding it during our initial snuggle time so I didn’t notice it and freak out.  He has what’s called Amniotic Band Syndrome. We also discovered that the ABS had caused Evan to have somewhat of a club foot/leg as well. 





      I was nervous at first because I had no idea what to expect when we took him home.  Would he have to have surgery?  Would they amputate his fingers?  Would they have to break his leg?  Would he be ok?  I went crazy doing all kinds of research to get as much information as I could.  Amniotic Band Syndrome is not very common, but not uncommon at the same time.  “It occurs in about 1 in 1,200 live births, but is also believed to be the cause of 178 in 10,000 miscarriages.  Up to 50% of cases have other congenital anomalies including cleft lip, cleft palate, and clubfoot deformity.”  The Amniotic Band Syndrome link has some good information that you should check out as well. :)

            We made an appointment with Evan’s pediatrician right away.  She referred us to an orthopedic doctor @ the Brighton Health Center (A branch of U of M Children’s Hospital).  We go see them May 3^rd for our first consultation.  Hopefully they will tell us that Evan will only need minimal surgery and possibly a brace to straighten out his leg.  I guess we will just have to wait and see. :)

          

5 days old