The Long Update, part 6, fin?

Zoey does have bicoronal synostosis, midface hypoplasia and SOME syndactyly of the hands and feet. 

Her synadactyly is not as severe as it is for many other children in this situation.  She was born with some slight fusion in a couple of places on her hands, and with was suppose to be a 6^th finger on her right hand.  This finger did not come to fruition, and when she was born the blackish object did not have any real blood supply.  On Wednesday afternoon it was removed by the plastics team (a team of plastic surgeons that work on infants and toddlers).  There was no real bleeding and you can barely tell today that there was something there.  As for her feet, the synadactyly is a little bit more severe than the hands, but not bad.  She was born with a 6^th toe on her left foot, and that will all be addressed during  a surgery after she is about a year old.  I mention that the synadactyly is not that bad because what I could see from the x-rays were that the appendages and joints (bones) themselves were not fused.  Again, this is from what I could tell.  It seems to be more a matter of separating only the skin.

As an initial assessment regarding the bicoronal synostosis and midface hypoplasia, we have spoken with the neurosurgeon (Dr. Ridder) and the craniofacial surgeon (Dr. Rhodes) that will be working together in about 9 months on Zoey.  This surgery will be a bit intense, but our little one will be fine.  Dr. Rhodes is the craniofacial surgeon who assigned herself (yep you heard that right) to Zoey’s case.  She came by yesterday and spoke to us to let us know that we will have a care coordinator that we can call about ANYTHING, and that they will be working with all of the doctors who are watching over little Zoey’s case as a team. Dr. Rhodes has been awesome about everything, and she has constantly been there to answer our questions and to fill some of the gaps.  It is good to know that we have such a huge level of support here at the hospital.  We already know that some of the people we have been talking to over the last few days will be working with Zoey for a long time.  They will have the pleasure of watching Zoey grow up as well, perhaps even into adulthood.  We had a brief meeting with our coordinator and she gave us some really good information on all of this that I will try to scan and send out at some point for all of you.

Regarding the fistula, pending that there are no major complications, they may have to widen her rectum a little, but the rectoplasty (a reconstructive surgery of the anus and rectum when they will place the rectum in the proper location) will be done by plastics in about three months since she is able to eat and fill diapers with little difficulty right now.

Our final milestone that will allow Zoey to be discharged from the NICU (as well as the first milestone for the rest of her life) is encouraging her to feed by mouth, whether through bottle or breast, and to digest properly.  We will be able to come home to continue working on all of this, but the easiest way to monitor Zoey’s brain growth and pressure on her skull is to observe her jaw movement while feeding.  The most important thing that we can do is to shower our beautiful daughter with love and support.  There is no doubt in our minds and hearts that this little girl will melt hearts everywhere she goes.  I also knew the moment that I saw my wife reach down and pull her up, that I was madly in love with this little girl.  She is perfect, beautiful, so strong and so full of love… and I would take the world on for her. 

I AM A DAD, I am scared out of my mind, this was hard to live, easier to write, easier to read, but will haunt my ever-fond memories of my beloved daughter.