Friday, December 30, 2011

Happy Holidays

Dear All,

  Not too much new to report from the Lynch Family.  Mary Cate is still eating and sleeping great and enjoying her home and the visits from family and friends.  Christmas was wonderful and MC8 was spoiled rotten by everyone.  She even got to meet Santa!

This may be my favorite picture of the holiday season...Mary Cate meeting her cousins Claire and Nora for the first time...the smiles and love in this picture are infectious :)



Lynch Family Christmas 2011


 MC and Santa


Over the past couple of weeks, Chris and I have been doing a lot of research on doctors.  We reached out to a family in Austin, TX, Rick and Tayrn Skees, who's son Aiden has Apert Syndrome.  We came across their blog while searching the internet for Aperts infromation.  Surprise, surprise, they even have a south side connection, Aiden's grandmother (Tayrn's mom) grew up in Beverly.  His grandparents were even married at Christ the King Church, only a block away from our house!!!  Here is their website/blog:

www.moreskeesplease.com

Aidan Skees is nearly 4 years old and is dealing exceptionally well with Aperts.   Taryn & Ricky have been incredibly helpful and gave us rave reviews of the doctor they are using for Aiden's surgeries, Dr. Jeffrey Fearon in Dallas.  We have already reached out to this doctor and had a phone consultation.  We plan to head down to Dallas in the coming weeks to meet with him in person.  Dr. Fearon currently has 140 active patients with Aperts and seems to be the foremost expert with this syndrome.  He was very thorough and comprehensive in the phone consult we had, and has a different schedule for surgeries than most we have heard (he does first surgery at 9 months of age).

We still plan on going to all of our appointments and meeting with all of our surgeons at Children's Memorial, but we are also committed to finding the best possible doctors and care we can get for Mary Cate, so we can offer her the best possible life.  Dr. Fearon's website has some great information on Aperts if you want to check it out.

http://www.thecraniofacialcenter.org/apert.html

Well, that is all the news we have for now, thanks again for visiting the blog and for your thoughts and prayers.

We wish all of you a safe, happy and healthy 2012!

Much Love,
  Kerry, Chris and "Queen MC"






Monday, December 19, 2011

HOME SWEET HOME...

"Home Sweet Home"...I have said these words so many times over my lifetime, during my college years and especially while living abroad, but never before have these words been so poignant as they were when Chris, myself and MC arrived to our house on Leavitt on Friday afternoon!

We haven't written an update in a week, as there were so many ups and downs and the game plan seemed to be changing minute by minute.  The original plan was that we were supposed to leave the hospital on Monday afternoon as a family, however when daddy was feeding Mary Cate Monday morning, she decided to put on a little show (literally as 10 doctors were rounding on her).  Chris noticed she was very fussy and not eating (which had not been the case over the previous days).  Out of nowhere the monitors started alarming and her heartbeat jumped to about 250 beats per minute, and stayed that way for about 1.5 minutes until one of the fellows ran over and pressed firmly on MC's liver to enact the vagal response and lower the heart rate.  Thankfully this worked quickly, but also gave concern to us and the doctors and we knew right away this would delay her discharge from the NICU.  Within the hour she had more tests on her heart done and they attached a Holter monitor to measure all heart activity for the next 24 hours.    All of this also delayed her field trip to Children's Memorial for the Upper GI test that she had to pass before discharge.

We were devastated to have to leave the hospital (I was officially discharged) on Monday night and have to go home without Mary Cate.  The only saving grace for us at that point was that we had grown to love every nurse that took care of MC in the NICU and we knew that she was in the most loving, caring and gentle hands.  We went home that first night alone, shed a lot of tears, tried to sleep and then were up and back at Northwestern first thing Tuesday morning.

Tuesday she was doing well, but the docs said she was tuckering out on her eating, and needed to still keep her longer to watch all of the intake she was getting (breast milk and formula), at one point that day they told us she may need to go home with an NG (nasogastric) tube to be feed that way every night for the next 6 weeks!  We worked on the feedings with her all day, and by the time we left on Tuesday night she was finally up the minimum requirement that the doctors wanted.  Our wonderful Friend Fr. Tom Hurley came to give MC a special blessing, and we were very grateful for that.


On Wednesday we received the great news that the Holter monitor test results were clear.  Although, this made us a little suspicious that the tachycardia episode was just an excuse to get out of a trip to Lincoln Park.  After all, she is a south sider by birth!  In the late morning, they packed her up in this fancy schmancy bed and she and Chris took their first ambulance ride up to Children's. 


We were THRILLED to get the good results right away that her intestines look great (another issue sometimes seen in Aperts is a malrotated intestinal tract).  Back at NMH the neonatologists recommended that she still stay inpatient for another 48 hours to continue to monitor her feedings and her heart.  Though we were more than bummed to not have her home, we knew it was in her best interest and knew she was in the best of hands.

Thursday was quite uneventful, and finally FRIDAY was here...we went over a lot of discharge paperwork, all of our 15+ (or what seems like 150) appointments with all of the specialists we need to see at Children's over the coming months, and finally they took off all of her leads, and we could finally enjoy a "wireless" baby.

We have spent the weekend at home with Mary Cate snuggling by the Christmas tree, we cannot put into words how amazing the last few days have been!  We look forward to a couple of weeks off of doctors appointments and to just enjoy the holidays as a family.

Thanks again to all of YOU for the thoughts, prayers, gifts, meals, flowers, offers of help, and the many, many doctor recommendations, and reaches out to families with a child with Aperts or a similar syndrome.  We have a lot of emails to sift through and look forward to touch base with all of these docs and families soon.  We have a long road ahead of us, but we know with all of you behind us we will make it through.
We are blessed beyond words and we look forward to everyone getting the chance to meet our beautiful angel!

They Lynch Family wish all of you a happy and healthy holiday season!

xoxo 
  Kerry, Chris & Mary Cate


MC's NICU room for the first 8 days of her life...we cannot emphasize enough how fabulous every Nurse and doctor was that cared for her...



A last snuggle with mom in the NICU

Finally wireless and in clothes!!!



Family picture before we left NMH


First family pic on Leavitt


MC's own beautifully decorated pink Christmas Tree (thanks so much Nancy Fitzgibbons)


Our sweet little candy cane :)

Sunday, December 18, 2011

Update on Mary Cate (from 12/11/2011)

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.




Welcoming Mary Catherine - 12/08/2011

All -

Mary Cate was born at 8:48 AM today, weighing 8 pounds 5 ounces and 22 inches long by c section.  Unfortunately, there were some abnormalities in her hands, feet and cranium and she is currently in the Neonatal Intensive Care Unit.  We spoke with a geneticist and he has given a preliminary diagnosis of Aperts Syndrome.  They are running tests to confirm.  It is totally unknown at this point as to what this will mean for Mary Cate's development.  She could have both physical and cognitive development issues, but the extent of such issues vary case to case and depend on the severity of the syndrome.  There will almost certainly be near term surgery for her skull, hands and feet.

This is obviously very difficult for both of us.   However, we have already made the decision to be positive and optimistic.  We will not feel sorry for ourselves and do not expect that from any of you.  Instead, we will love Mary Cate to the fullest and give her every opportunity at the most normal life possible. .  We are tremendously proud of our new daughter and are thankful to have such a strong support network of family and friends.  As someone close to both Kerry and I just put it: "Mary Cate will be the light of your and everyone's lives".  We couldn't agree more.  

For the time being, we would ask that you hold off on visiting us in person.  We would like to get a handle on the upcoming schedule of tests and procedures before we start having visitors. Thanks to all of you for your prayers, well wishes, and most of all love.  


Kerry and Chris