Emily’s Story

Site created on December 7, 2021

A little back story...... Seth was born on Aug. 19th 2020. Everything checked out ok and he was cleared to go home. For some weird reason I kept asking if he was ok. Nothing out of the ordinary at all, but I just had this feeling in my gut. 


5 days later we raced Seth to the ER only to find out they needed to air lift him to Children’s in Minneapolis. The next days that followed were a blur.  He had to wait a few days for his organs to regain full function before having a surgery to save his life. He had an  “interrupted aortic  arch.” Basically there was a gap in the aorta and a valve that was keeping him alive, was closing.  (We all have this valve that closes 2-5 days after birth) but when Seths started closing, that meant no blood to the lower part of his body.  They performed the surgery and it went VERY well.

Before surgery, the surgeon came in and told us that isn’t the Only issue with his heart. He also has  congenitively 
corrected transposition of the great vessels. This means that his right and left ventricles are on the wrong side (switched) and his vessels are also switched.  His heart functions 
because  of this but the right ventricle is working so much harder than it was designed to (since right now the right ventricle is doing the job of the strong left ventricle and pumping  blood through the entire body.) 
The next surgery he has will be one that is an 8 on the complexity scale. He has a large hole between the ventricles that needs to be closed up, a band they placed on the pulmonary artery that needs to be taken off as well. The next part of the surgery is to baffle the blood so that the right ventricle isn’t pumping through the whole body, making it tired.  


We are out in CA! He will be having the “double switch” surgery on Dec.9th. We have the best of the best and when we felt unsure about where to go or what to do, once we let go of the worry of it all, God aligned this surgeon and lead us here. We are at Stanford Children’s hospital in Palo Alto. Dr. Frank Hanley has a complex knowledge of this super rare condition and this specific surgery. We are beyond thankful for the surgical team we found! And also for everyone in our lives who walk with us, pray with us, and give continually of themselves! 

Newest Update

April 27, 2022

Journal entry by Emily Long —

Hey all! Just wanted to give everyone an update on our sweet Seth boy.  He is just the sweetest and most fun kid! He is energetic and in to EVERYTHING!!!   He is starting to talk a lot more and even will sing songs with actual words! Sounds silly to be excited about since he is over a year and a half, however the 3 months that we were in the hospital, we didn’t work on any words (however he mastered the word “No” while
There hahahahaha!)

About 4 weeks ago, we needed to change out Seths feeding tube. He was gagging a ton and threw up when we wouldn’t expect it and just not seeming right. Once they took it out and changed it, he was SO GOOD! He started eating a bit more foods and the gagging had mostly subsided.  We started adding fat into his diet right after this, so it was perfect timing. We are now at 75 percent fats added to his diet and our next appointment is suppose to be May 13th. 
Yesterday I noticed that he had been gagging a lot more and just not eating the foods he was really starting to like. I really had this huge feeling that the tube is the issue again AND it is just really holding him back from moving forward with eating. So today I messaged the cardiologist and told him my concerns and asked that since he is drinking most of his “formula” and eating other things if we could get the tube pulled. He said that I can go ahead and pull the tube and then schedule an x-ray and office visit on Friday! Instead of waiting until mid May!!!!! I was so excited! Nervous and excited! I called my son Noah up to help Seth hold still so that I could take the dressing off and I slowly pulled the tube out!  It is so amazing to see his FULL FACE again!!! I gave him the bottle he was asking for and then decided to try foods and he ate! Not a ton but some!  I could tell instantly that it felt better for him! And NO MORE STRESSFUL DRESSING CHANGES! Our prayer is that THIS IS IT with the feeding tube. That he will eat more and more foods and begin to gain the weight he needs. He is hanging close to the 20 pound mark so he isn’t losing but really want him to gain even if slowly:) 

Thank you all for your prayers, support, messages, cards, and encouragement!!!!  I will keep everyone posted as things progress:) 

Lately, more than normal, I have had just an overwhelming sense of gratitude and awe of the Lord and Who He is. Life is beautiful even when it’s hard and when I came out of this trial, the Joy I have felt is extreme! I cherish this! The word says that though the sorrows may last for the night, joy comes in the morning. It is morning for the Long family and we feel the joy! 
I pray often for so many of you and have loved lifting your  needs up in prayer. So I say again, please don’t hesitate to reach out for prayer or help! We are here and are available♥️

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