Aha! Moment

Last night, I was reading about another EA/TEF baby’s crazy medical journey when I had an Aha! moment. “Oh my gosh! My water broke at 26 weeks! Lucas has been through 24 surgeries!!! Our last 22 months have been more stressful and filled with fear than most people will ever experience in their entire lifetime!” This may sound crazy, but I’ve never really looked back & sat to think about all we have gone through with Lucas. We always take each day as a new start and continue looking forward to a brighter future. When I took a moment to reminisce, it brought tears to my eyes.

Tears of joy that Lucas is such an amazing fighter! He is doing better than ever. Tears of sadness that we had to complete this journey. Tears of happiness that Bryan took the time to research all of our options and recommended we go to Boston Children’s Hospital. Dr. Manfredi & the entire EA Team have vastly improved Lucas’ life. Tears of exhaustion from the many times we’ve layed in Lucas’ hospital room praying he would get well enough to go home. Tears of appreciation for knowing the Lord was always by our side. Though Jesus did not give us an easy journey, we have always felt his presence and turned to him for answers when making life changing decisions. It is most amazing that whenever we are stressed or fearful, we can give up our worries to the Lord and he works to fill our hearts with an inner peace. In fact, Lucas’ journey has brought us even closer to the Lord. Amazing!

I think Bryan & I have stayed grounded and haven’t had nervous breakdowns because we have a phenomenal support team. From the bottom of our hearts, thank you to all of our friends and family members who have prayed for Lucas, brought us a meal, ran an errand for us, offered us a room to stay in while Lucas was in the hospital, cared for Skyler (our dog), babysat, or sent a text/email/voicemail to express your support. THANK YOU!!!

Happy Birthday, Bryan!!!

Happy Birthday, Bryan/Dada!!! From the moment I met you (10 years ago), we formed an instant bond. As the months & years have gone by, my love for you has continued to grow. I always think I could not imagine loving you any more and then something happens which somehow allows me to fall even deeper in love with you. Through the ups and downs that life has thrown our way, you always offer me endless amounts of love & support. Thank you for loving me unconditionally.

You are…My rock when I need support. My best friend. The most handsome, funniest, & wisest man I have ever met. The love of my life! The most amazing father to Lucas!!! I am truly blessed to call you my husband.

The Doctors

If you ever wanted to see Dr. Russell Jennings (EA Director/Surgeon at Boston Children’s Hospital) speak about Esophageal Atresia, I recommend setting your TV to record “The Doctors” TV show on this Wednesday, January 14. Dr. Jennings is one of the most intelligent yet humble and laid back surgeons we have ever met. Dr. Jennings prefers to be called “Rusty” not Dr. Jennings or Dr. Russell. Rusty is the lead director in charge of managing Lucas’ care at Boston Children’s Hospital. Simply put, Dr. Manfredi (our surgeon) reports to Rusty.

 

Below is a summary of Everly’s journey which will be highlighted during the segment. Everly had a type A form of EA which is also known as Long Gap EA:

“Our daughter Everly was born with long gap EA last March. We spent 5 months at Boston Children’s Hospital repairing her gap with the Foker Technique. Though a very long and hard road, we are happy to say that she is doing amazing today. We were grateful to have Everly’s story documented by the show THE DOCTORS. Our segment is going to air this upcoming Wednesday, January 14th (check your local listings for showtimes). We are thrilled to bring a spotlight to EA and get awareness out about the Foker Technique, especially during EA/TEF Awareness Month!!! Here is Everly’s blog post about our time on the show.” https://littleeverly.wordpress.com/2014/12/11/a-star-is-born/

Our Little Model

Look who made the Christmas card for the Hospitality Homes Nonprofit Organization…Yes! Lucas is the cute kiddo on the upper right hand side of the card. Hospitality Homes sent the card out to all of the donors, patients, and hosts. Back in November, we told our Hospitality Homes Rep that they could use any pictures or stories from our blog on any of their advertising material. In fact, we completely forgot about the conversation. We hope Lucas’ adorable happy face can help bring in a few extra donations to offer more patients free housing when they travel to a hospital in Boston, MA! Thank you again Hospitality Homes!

http://hosp.org/

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EA/TEF Awareness Month

January is Esophageal Atresia / Tracheoesophageal Fistula (EA/TEF) Awareness Month.

Definition
Esophageal Atresia (EA) is a birth defect (congenital anomaly) in which the esophagus, which connects the mouth to the stomach, is shortened and closed off (dead ended) at some point along its length. This defect almost always occurs in conjunction with Tracheoesophageal Fistula (TEF), a condition in which the esophagus is improperly attached to the trachea, the “windpipe” that carries air into the lungs. It is believed that these defects occur around the fourth week of pregnancy when the digestive tract is forming. There is no known cause for the defects. This affects approximately 1 in 4,500 babies.

Description
The digestive tract is unnecessary for fetal growth, since all nutrition comes from the mother through the placenta and umbilical cord. During fetal development, the esophagus and trachea arise from the same original tissue, forming into two side-by-side passageways, the esophagus leading from the throat to the stomach and digestive tract, and the trachea leading from the larynx to the lungs and respiratory system. Normally, the two tubes form separately (differentiate); however, in the case of EA/TEF, they do not differentiate, which results in various malformed configurations.

Complications
Postoperative complications may include difficulty swallowing, since the esophagus may not contract efficiently, strictures (scar tissue build up) at the surgery site, and gastrointestinal reflux, in which the acidic contents of stomach back up into the lower part of the esophagus, possibly causing ulcers.

Lucas’ Journey
Lucas has an EA/TEF Type C configuration which is Esophageal Atresia with Tracheoesophageal Fistula, in which the upper segment of the esophagus ends in a blind pouch (EA) and the lower segment of the esophagus is attached to the trachea (TEF). 86.5% of cases are this type. Below is a diagram of the different types of configurations.

Before the 20 week pregnancy ultrasound, we had never even heard of EA/TEF. Now, there is not a day that goes by that we don’t think of Lucas’ EA/TEF condition. Our lives are forever changed. But, we wouldn’t have it any other way. We know Lucas is our special blessing from the Lord. Our father knew we would do everything in our power to ensure Lucas has the best medical attention and care. As long as Lucas is smiling & continuing to make progress, then Bryan & I are happy.

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