Before I go into my update from today’s follow up with Dr. Kalan, I want to talk about Niki. I have been so happy to share our story with the hundreds of people that are following us, supporting us, and praying for us, but no matter how hard I try I can never hope to fully communicate (or even comprehend myself) what Niki has endured through this journey. I do my best to describe my emotions and what I can infer Niki is feeling, but I know I only scratch the surface of the physical and emotional pain she has bravely faced. There is no doubt in my mind where Wyatt has inherited his spirit and tenacity, it is from Niki. The way she has continually put on her brave face and continued to fight for Wyatt is just incredible and I don’t want anyone to think the procedures we have had so far have been easy, because Niki would never let you know just how painful and stressful it has been. This battle has strengthened our relationship more than I thought possible and I know that there are only 2 people in this world I will ever love more than Niki and that is Wyatt and Fiona.

Speaking of Niki’s strength, last night we had a bit of a scare and she handled it so well. Without going in to all of the details, she hadn’t felt “right” yesterday afternoon and was diligently paying attention to her body for any signs of pre-term labor brought on by the shunt placement Wednesday. Her feeling of something being not quite right continued through the evening and at 9pm we decided to text Dr. Kalan for her opinion. She immediately called us back and listened to Niki’s symptoms. She advised it was probably nothing, but thought we should come across the street to the hospital to be checked out for our peace of mind. Everything was fine. They put the babies on monitors and drew labs on Niki which we got back today. It was pretty scary, but I am so glad we played it safe.

This afternoon we had our follow-up with Dr. Kalan to see how Wyatt was responding to the shunt. He is doing so well! The ascites (fluid in his abdomen) is gone. The edema (swelling of his skin) is almost completely resolved, and the small amount of fluid left in his chest is better than expected. By definition, he is no longer hydropic! Additionally, his amniotic fluid has began to reduce to more normal levels, Niki’s BP is well under control, she has no detectable protein in her urine, and her liver enzymes have returned to normal! When Dr. Kalan came into the room, she had already reviewed some of the ultrasound pictures. She said that she had started out as a skeptic, feeling what we were doing was a “heroic measure,” but now she is a believer. God gets the glory for bringing us to Cleveland and guiding the hands of the amazing doctors that have gotten us to where we are today. We are breathing easier today (as is Wyatt who we could see taking practice breaths on the ultrasound), but we still have hard decisions left to make regarding his CDH care and Wyatt still has one big fight left to fight.

Getting Wyatt to where he is today is a major victory and we are overwhelmed with hope and positive vibes that Wyatt is going to beat all of the odds, but one thing Niki and I know for certain is how this journey has changed our life trajectory. No matter how things turn out, we are so thankful that someone, Dr. Cass took a chance on Wyatt and decided to help him fight for his life. The sad truth, however, is that our story is not unique. Just like us, so many parents with CDH babies, hydropic babies, and babies with other congenital problems are told that there is NO chance. We are told to watch and wait for our babies to die, or given the option to terminate the pregnancy. Niki and I have vowed to each other, to Wyatt, and to God to make it our mission to advocate for these babies and these parents.

Niki has already thrown down the gauntlet on Facebook, sharing Wyatt’s before and after intervention pictures. Let me be clear in our mission by saying that we do not claim that all of these babies can be saved, but we believe that they all have a chance. There is no reason why we should have had to come across the country for answers and procedures that UAB had the technology to provide. We want to challenge the status quo and make sure that these unborn babies are given the same opportunity as someone outside of the womb and we want to help families find these answers and miracle workers. I say this all with massive respect for the medical community. With all of the doctors we have seen, we have found that most doctors are either replicators or innovators. Replicators learn from textbooks and the techniques of others. They can be amazingly skilled doctors, but I think they can also be close minded to what has not yet been done or what has not been proven as “evidence based medicine.” Innovators, on the other hand, think outside the box and develop the techniques and ideas that will influence care for the future generations. Dr. Cass is an innovator and we just have to get the “replicators” out there to watch and listen to what he is doing. 

Please continue to pray that Wyatt’s shunt stays in place and keeps on draining, please pray for Wisdom for Niki and I as we try to decide what is next, and please pray for the babies and families that are fighting similar fights, that they might find their “Dr. Cass” or find a family like us that can help show them the way.