The NICU

This is a letter I wrote to the hospital about our NICU experience.  Being in a NICU, or Neonatal Intensive Care Unit, is not something typical of children with Down Syndrome, rather was a part of our journey due to Alexi's premature birth.  We traveled over an hour each way to see our precious little girl, every day until she came home.  This lasted about 9 1/2 weeks, and took about 5 hours of each day.  Because we were doing it to see our little girl, it hardly seemed to negatively effect us at all.  We grew a new appreciation for our city, and even saw the new Batman movie being filmed on our way in and out most days.  Best of all, was getting her updates when we got there each day.  Sure some days had setbacks, but most were truly amazing.  Anyway, I thought I would share the letter I wrote the hospital, as it is the least I can do to spread the word of how great they are at West Penn Hospital.  Enjoy.

(Above: Alexi with one of her favorite nurses, Carmen)

"To whom it may concern,
Before I start this letter, I think you should know a couple things.  I have never been pleased with a hospital experience in my life, and I do not write letter like this very often (in fact, this is a first for me.)

When our doctor at St Claire hospital, let us know that my wife, Kerith, was going into labor, they told us they could deliver the baby, but the best place in Pittsburgh to be was West Penn Hospital.  We had never considered West Penn as our hospital and knew nothing of it.  We did, however, trust that there must be some reason one hospital would forfeit us to another, so we took their word for it.
                We hopped in the ambulance and off to West Penn we went.  When we arrived we were taken right upstairs to our room and testing was performed right away.  As the doctors and nurses were tending to my wife, I was mentally preparing myself for the fear of the unknown that we have always encountered in previous hospital experiences.  I was concerned for both my wife and daughter, and knew it would be quite some time before anything was explained to us.
                It turned out, I was mistaken.  A nurse took the time to explain to us, what tests were being done, and what the next steps were in deciding the right path to birth would be.  I thought that this was one special nurse, who sympathized with us, and appreciated her explaining to us what was going on.
                Then I was proven to be mistaken again, a doctor soon came in and began to explain even more to us.  This trend continued throughout our whole experience at West Penn Hospital.  This was a big change from anything we’ve encountered in the past and made our traumatic situation, much easier to bear.  This was not, however, the only difference.  The entire staff of nurses, doctors, and everyone else we encountered was made up of truly special people.  Everyone we talked to seemed to empathize with our situation, and take the time to make us as comfortable as possible.  Some of the people we encountered even sympathized and shared stories of their past experiences, similar to ours, to give us confidence that giving birth 10 weeks early was going to be ok.
                I am no “writer” and really can’t put into words how amazing the entire staff was to work with in the premature labor and delivery area .  I just know that the scariest moment of our lives was made tremendously easier by these wonderful people and we will never forget it.
                The letter really could end there, if it wasn’t for one thing.  I haven’t even begun to discuss the staff in the NICU.  I was very pleased with our care in the delivery area, and assumed it was just a special team of people, that would go unequalled by any other group we encounter.
                AGAIN, I was wrong.  Right from the very beginning, the nurses and doctors alike from the NICU gave us such confidence in their knowledge and experience that we knew our little girl was in great hands.  The decision made just minutes after the birth of our daughter, by doctor Karamchandani, to let us know our little girl had a very good chance of having down syndrome, was a great, head on approach that gave us the opportunity to begin preparing ourselves right away for a new path of experiences we hadn’t expected.  This type of up front attitude gave us an unbelievable amount of confidence and trust in this hospital.  When it came time to check out and leave our little girl almost 50 miles away from home with a group of “complete strangers,” it felt more like leaving her with family.  Doctor “K” was not the only one who gave us this feeling, every doctor and nurse we’ve encountered along the way has given us great reason to trust in the care our daughter was receiving. 
                I feel it is necessary to explain that being considered a “part of the team” means a great deal to us as parents.  We felt like we were rookie members of an allstar staff.  We received great compassion and care that we would have never expected.  Just as important, was the way we were strictly held to certain expectations as well.  From scrubbing in properly, to having to prove our identity, we felt very safe knowing these and many other rules were enforced to help ensure the wellbeing of our child and those around her.
                I really could go on for days about the amazing, special, kind, knowledgeable, devoted, and truly unique staff that West Penn Hospital surrounded us with, but it would still never let you know just how amazed a skeptical, stubborn, analytical guy like me is, with what I’ve experienced.
                My baby girl, Alexi, is still in the NICU as I write this and was supposed to come home 2 days ago, but West Penn’s testing before letting her leave helped us find that she was not ready to go home.  As hard as this was to deal with, I am glad she is still in, quite possibly, the best place on earth for her.

(I wrote this letter but my wife and I both feel whole heartedly the same about everything mentioned.)

Thank you,
Kevin Roche (speaking on behalf of Kerith and Alexi  Roche, too)"