Dear Friends and Family of Mary Cate,
First off we want to thank all of you so much for your love, thoughts, messages and most importantly prayers. We have been so overwhelmed by the kindness, we don't even have proper words to express our gratitude. The prayers have been paying off as well, our last email was Thursday night and we didn't have much information. Most of the doctors had not seen this syndrome before; they didn't really know exactly what to expect or how to start treatment. We only knew Mary Cate would be going through many, many tests to check her major organs to check for more anomalies. We are happy to report that so far our little angel has passed these tests with flying colors. The scans of her heart and kidneys were clear, the X-rays of her spine were clear and most importantly the ultrasound of her head showed no swelling or fluid on the brain (this was the BEST NEWS!). From the time she was born on Thursday morning until very late thursday evening they had kept her from eating, so it was sad to watch her so hungry and fussy, but she has definitely made up for it since then!! Our little chunky monkey loves to eat and wakes up every 3 hours on the dot, she does not like to miss a meal. She lost a little weight since birth, but she is still over 8lbs and still looks like a sumo wrestler in the NICU compared to all the little 3lb preemies!! At 22 inches long, we are also told she is the longest baby ever seen here! We hope she keeps the weight up, with all the surgeries she has ahead of her we would like to keep her as healthy as possible :)
We have met with numerous doctors thus far, but will still need to meet with quite a few specialists at Children's (neurosurgeons, cranial-maxillary-facial surgeons, orthopedic surgeons are who we know of so far….so ANY recommendations are welcome). The plan for tomorrow (Monday) is that Mary Cate and her daddy will take her first field trip/ambulance ride to Children's from Northwestern and she will have an upper GI done to make sure there are no intestinal issues (which we are hoping/expecting to be normal considering how great she has been eating and going to the bathroom!). As long as the results come back with passing grades, we then plan to have a meeting with all the docs we can to get all of our appointments scheduled for the next few weeks. And then the WE WILL ALL GET TO GO HOME!!! :)
We have a little more information of Aperts Syndrome, but still much more to learn. They still have to run the blood test out of a speciality lab in Nebraska and we may not have final results for 3-4 weeks, but the geneticist seemed to be very certain that this was the syndrome that Mary Cate was born with. As we are slowly learning, it is a very rare syndrome (only a few dozen born per year in the US), and in our case the geneticist thinks it was a spontaneous genetic mutation at conception, and since we had chosen during the pregnancy to have no genetic testing, we had no idea this was the case. Due to her breech positioning during the entire pregnancy none of the 2D ultrasounds were able to pick up any abnormalities, and though we had planned to go have a 3D ultrasound done (and this almost guaranteed would have seen the abnormalities) on numerous occasions, due to other major events that were going on over the last few months in our lives, time got away and we never got them done. We truly feel that we were not meant to know ahead of time what was going on, and were able to enjoy a healthy and happy pregnancy. Though we are still somewhat in shock, and the last 84 hours seem to have been a time warp, we are doing our best to grasp the situation, keep our faith, and prepare ourselves for the challenge lying ahead. We plan to provide Mary Cate with an amazing life, and we are beyond excited to introduce her to all of the phenomenal people we have in our lives that have already fallen in love with her!
Mary Cate is the sweetest and most adorable angel we have ever seen. She is alert and relaxed when she is awake, and she is also a great sleeper (let's hope she stays that way :)). She makes the sweetest faces while sleeping and has even given some pretty gorgeous smiles. The first smile went to her Uncle Joey...it must be those dimples. :) She loves to save up dirty diapers for daddy and nuzzle right into his neck when she sleeps. In the early morning, while daddy sleeps, mommy sneaks down to the NICU for some extra one on one cuddle time and we both fall asleep together…it is WONDERFUL!
We REALLY, REALLY hope to take her home tomorrow so we can all be together in the same room and house and enjoy lots of family time, and the holidays together. We heard that Santa even sent some extra special elves who spent the day at our house and turned it into a beautiful Christmas wonderland. Mary Cate cannot wait to see her first Christmas Tree!
That is all we have so far, again we cannot thank you enough for all of the prayers. We need them, and we feel them, and THEY ARE WORKING! We have a long road ahead with many surgeries to go and most likely the first to be a neurosurgery at 2-3 months of age. This will all be very strange after working for months in pediatric neurosurgery while we lived in Europe. It will not be easy to watch Mary Cate go through the surgeries, but we know we will be getting the best care possible at Children's Memorial. We are committed and eager to provide her with the best possible life.
We are also hoping that if any of you know someone or has heard of someone's, brother's, aunt's, cousins friend (I mean we do live on the southside…) that has this syndrome or knows about this syndrome or has great recs for these types of surgeons at Children's we are open and happy to hear and reach out to anyone we can!
Below is a poem that someone sent to us, and I have read it at least a hundred times. It has kept me calm and reminded me that we were chosen to be Mary Cate's parents for a reason and, even though this has created a change in our life plans, we are excited and ready for the challenges ahead and the change in destination.
Goodnight from, hopefully, our last night at NMH NICU….
Love,
Chris, Kerry & Mary Cate :) (please enjoy our first official family photo)
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability to try to help people understand it, to imagine how it would feel. Its like this
When you are going to have a baby, its like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, Welcome to Holland.
HOLLAND?! you say. What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've land in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
Its just a different place. Its slower-paced than Italy, less flashy than Italy. But, after you've been there for a while you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, Yes, thats where I was supposed to go. That's what I had planned.
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
