With hosts Mark Steines & Cristina Ferrare
Our little Everly made another TV appearance spreading awareness for EA on Hallmark’s daytime talkshow HOME & FAMILY!
We had a blast on the show with it’s fun and causal setting (the set is an actual house on the Universal backlot!) and the hosts made us feel right at home. Although this time we found ourselves chasing Everly around set…wow she is growing so fast! We are beyond honored that they wanted to share our story, as well as, the amazing work the Boston EA team is doing. Rusty skyped in to talk about the Foker technique wearing his John Deere cap and all!
If you missed the show, here is our segment on EA. Be sure to watch to the end when Everly sees the cat for adoption!
Here are some shots of us on set!!!
We’re back in Boston for a series of follow-up procedures, but more importantly, to find out how she’s healed in that time…
It’s surreal to be back. To think we once called this place ‘home’ for 5 months is almost difficult to grasp. There was so much uncertainty and so much fear, and yet it seems so long ago, but we have to remind ourselves it was just last year. But I will say this, it’s always great seeing a familiar face. We made such incredible friends here, and reuniting with our entire staff of doctors and nurses who were with us every step of the way has been truly heart-warming.
Today, we arrived in the pre-op room at about 6am this morning, and just after a short visit with some of our favorite faces in the 7 North NICU. I was nervous about being back this time since Everly is a bit older and more aware. However, the silver-lining is that I didn’t have to revisit watching her head through the hallway into the double doors all alone. This time, I got to go with, and be there holding her hand until she was soundly sleeping. I was more at peace as I knew she was in the best hands possible with her team of doctors. She’s so brave…
They performed an endoscopy on both her trachea and esophagus in which the doctors stick a camera down her throat to exam how she looks, and the results were INCREDIBLE!!! Both her trachea and esophagus looked so completely normal that it was hard to tell that she ever had surgery to begin with. Smiling cheek to cheek, the doctors stated “she has a SUPERMODEL esophagus”. The “Gisele Bundchen of EA” as they put it!!!
On top of that, they decided to remove her feeding tube because it’s no longer necessary! To see her for the first time ever without her feeding button is life changing. It’s been the goal since day 1 and now we’ve reached it. We are so blessed and feel like the luckiest parents ever. This is a huge milestone for all of us including her doctors to see if everyone’s efforts paid off and they sure have in a big way!
Recovering from the OR
With & Without Mic-key button!
One year ago today, our Little Everly was undergoing the first of many surgeries to change her life forever. It was the beginning of growing her full esophagus and a day we will remember like we do our wedding day. I still can feel her cradled in my arms sleeping not knowing what the day had in store for her. I didn’t want to let her go. She was just too little to have to go through so much and it felt so unfair. I desperately wanted to trade places with her.
The energy in the NICU was filled with so much HOPE & FAITH. Doctors and nurses were all there to show support and wish this little baby off on a save journey into the operating room. The moment that is burned forever in my soul is when we had to part ways and watch as she was carted down the long hallway through the big double doors and out of our sight. All I could think about was wanting to be by her side to make sure she never felt alone during any of this, but I couldn’t and it was heart wrenching. We had to trust in God and her amazing doctors. Her true heroes! We thank God everyday for the genius minds of Dr. Foker, Dr. Jennings and the entire EA team who have literally given our little girl the full life she is living today.
1 year ago today off to surgery – Foker 1
Now looking back a year later and how magnificent Everly is growing, learning, and eating I realized she may have been little, but she has always been mighty! We head to Boston this upcoming week for her check up appointments on her esophagus to see how well the healing process has gone. She will be put under anesthesia and we will back at that same hallway where she once again will be carted through the double doors and out of our sight. The process never gets easier, but this time I know the spirit of this little girl and she really is EVERSTRONG.
1 year from Foker 1
It’s been fun-filled day of celebrating a MIRACLE of a milestone – Everly is ONE!!! Today marks the beginning of this wonderful journey and we celebrate everyday you have blessed our lives. Our hearts are fuller since you have arrived. We love you forEVERLY!
Stay tuned on how this little one celebrated her 1 YEAR BIRTHDAY!!! Our feet our tired from all the fun and there are pictures to come. We are looking forward to sharing with all of you that have supported, prayed and followed Everly’s story.
Thank you to my wonderful husband for putting together this BEAUTIFUL video that captures the emotions of Everly’s first year. He pulled at everyone of my heartstrings with this.
Valentine’s Day has taken a whole new meaning in our lives. It will never again just be about flowers, pink hearts and romantic dinners. For us, Valentine’s Day marks the beginning of our journey to Boston.
We left one year ago today at 29 weeks pregnant with contractions every 5 minutes and on the longest plane ride of my life (and I have been on many long plane rides!). There was so much fear of the unknown ahead of us. A new city, a new life and heavy worry for the baby growing inside. But I had an incredible amount of strength knowing I was embarking on this life-changing journey with the most amazing husband by my side. That’s what I love most about our love; it always seems to take us on some kind of incredible, once-in-a-lifetime adventure. After we safely landed in Boston during a blizzard, the only thing I was certain of was that it was time to let go. That however we were going to get through the unknown times ahead, we were going to get through them with LOVE.
Our love is EVERGREEN!
To celebrate this Valentine’s Day with our beautiful Everly – kissing and loving every moment we spend with her – makes my heart sing with happiness! We are just blessed to have come through this so connected and with a baby who never stops surprising us! I think about those long days spent sitting, holding, watching her lying in the hospital, and I remember so clearly the LOVE that surrounded her and the LOVE from everyone rooting for her. We truly believe that’s what helped heal and nurture her into the happy little girl she is today!!!
Holding the bottle for the first time! Best valentine’s gift ❤
P.S. I also want to wish our dear friends, Izac and Laura, a special Valentine’s Day for taking us into their home a year ago today. They took us in, without hesitation, and let us stay with them when it was THEIR FIRST VALENTINE’S DAY TOGETHER AS NEWLYWEDS. They will always have a special place in our hearts and thank you for showing what true friendship really is. Love you both, and can’t wait for our next reunion!!!
11 Months is already here! We’re in a bit of denial that her one year milestone is just around the corner. This little preemie is closing in on her age “gap”, and is right up with the rest of the 11 months olds! Nothing is gonna stop this independent little lady!
Here she is…
….Figuring out puzzles
…Cruising the furniture
…and always exploring new foods with her 8 teeth!!
Everyday we get to see Everly grow leaps and bounds is truly a blessing. We always remind ourselves of where we were 11 months ago, and how lucky we are to be back home here today!
WOW! What a WONDERFUL day filled with so much love and support for Everly’s debut on THE DOCTORS. When we started this journey and the show asked to follow our story I couldn’t possibly think about allowing cameras to be there during the most difficult time in our lives. I am so happy we found the strength to do so, because from the outpour of LOVE and unbelievable kind emails, posts, texts, calls we have received today, it’s clear that this story was meant to be told to help other families that are or have gone through something similar to find HOPE & STRENGTH!
Our story and those that have babies with EA know that this is more than a 2 segment show. It is a very long and difficult process and without the genius mind of Dr. Foker, Dr. Jennings (Rusty), the entire EA and NICU staff at Boston Children’s Hospital our babies would not stand a fighting chance.
I will cherish all of the stories from other EA/TEF families I have received these past couple of days. We all are connected through this experience and it’s this connection that helps us get through the journey.
For those of you that missed the episode you can watch clips from the show online at – http://www.thedoctorstv.com/videos/surgery-to-save-baby-born-with-esophageal-defect
If you watch the clips in this order it will be like watching our full segment together: 1) surgery saves baby born with EA 2)Surgery for EA 3) Baby thriving 4) Video message from Boston Children’s Hospital.
Due to timing on the show a very special surprise message from Boston Children’s Hospital was cut out of the segment. Please take a moment to watch this video as all of these people were Everly’s angels while we were there. It includes the EA team (Dr. Manfredi, Dori Gallagher, Dr. Clendinin), our amazing friends Izac and Laura Chyou that took us in without a second thought and went on this crazy journey with us and Heather and Jay Clecker who gave us hope with their son Elliot’s amazing story – http://www.thedoctorstv.com/videos/message-from-boston-children-s-hospital#.VLbGBWMz5qc.email
Check out Everly at her own viewing party! It’s surreal watching what was our life at the same time bouncing a happy smiley Everly on my knee.
Thanks again for following our journey on TV and on this blog! It has been everyone’s love and support that carried us through this time.
Everly’s segment on THE DOCTORS is airing this upcoming
WEDNESDAY, JANUARY 14.
“surgery saves a baby with a rare birth defect” = EVERLY’S STORY
Check your local listings for showtimes. We would love for everyone to see it!
January is Esophageal Atresia Awareness Month, so thrilled we can help put a spotlight on EA.
Hitting some new milestones: lots of clapping, opening and closing everything, babbling up a storm, 4 new top teeth and standing!!! Crusing and walking are just around the corner.
She is as HAPPY as can be!
This post comes after Santa has arrived, the champagne has been popped and the Christmas tree and lights are all packed away. Finally, a moment to reflect on this holiday season along with the bitter and mostly sweet moments of 2014.
Last year at this time it was hard to find any jolly in the season with the constant worry about what lay ahead for the little bean growing inside of me. We knew whatever happened it was going to change our lives forever. To have Everly here, HEALTHY and HAPPY was all the blessings we needed this season, and better than any gift under the tree.
We always wondered what it would be like to have our own little one here for the holidays. The best way to describe it is MEANINGFUL. Yes, it’s fun to get in the spirit of Santa and all the merriment that goes into celebrating, but there is nothing better than seeing your baby passed around between family showering her with love. It warms me to see my parents with another grandchild, my niece and nephew with their first cousin, and my brothers and sister in laws enjoying the perks of being uncle and auntie. And for Nick and I, it’s the beginning of a real family in that we get to start our own silly traditions, while enjoying these times like when we were kids.
Thank you 2014 for bringing us Everly. She’s blessed our lives in ways we never imagined, but she’s also taught us to remain strong no matter how large the obstacles may seem. Thank you 2014. You will always be the year that changed the person I am, while giving me the little baby I always wanted.
Our holiday highlights:
CHRISTMAS ROAD TRIP
Our very own National Lampoon’s Christmas Vacation. Nick and I on a road trip to Door County, Wisconsin with a 9 month old, 5 year old, 9 year old, a mini-daschund and a car packed to the brim! Our road side adventures were filled with sing-a-longs, car games, constant pee breaks, cheese curds at Culvers, sneaking Puddy (the mini-daschund) into Target and Archer (the 5 year old) shouting that he doesn’t like “redults” (aka adults) as we are always in charge. How we all made it with our sanity was a Christmas Miracle in itself!
LOVE ~ LAUGHTER ~ HAPPINESS
HAPPY NEW YEAR & CHEERS TO 2015