When you are faced with a medical challenge for your baby, the best thing you can do is equip yourself with knowledge. The reality is doctors are limited to their training but there are so many alternative options available for you and your baby. However, it can be stressful, overwhelming, and filled with doom and gloom as you begin to research the outcomes. We are here for you!
We started a closed Facebook Group linked to the Lucas John Foundation page that discusses all of the alternative and natural treatments we have learned about over the past three years. If you are searching for options, please join us as we all learn together. The research is all posted in the GUIDES TAB.
NICU stays can vary from preterm birth, which makes up a large portion, to very complex and diverse medical conditions.
From our two-week NICU stay, we encountered parents who had been there for three months and those transitioning in daily from premature birth, heart issues, genetics/rare disease, and many unknown diagnoses.
The question is where do you start when researching?
NICU catches most of us by surprise and is an unplanned turn of events. Who do we listen to and what do we discard? We have found parent forums to be the most consistent reliable resource. Real-life on the battlefield parents dealing with the exact disease or medical complication as you. Facebook offers closed support groups on almost every medical condition. Join a few and ask questions and read their files. You will not always want to stay in all of them as your story changes over time, but know that almost every therapy we have implemented is derived from another parent or specialized practitioner referral. It has been a true blessing to connect with families who have experience.
When Lucas was diagnosed with his rare genetic condition, NKH, we read all the clinical outcomes and doctor reports. To be honest it was not hopeful. We decided immediately to fight for him. We prayed as a family and decided to trust God to lead us through this circumstance and believe somehow or some way there is a viable solution to heal and manage this medical diagnosis.
As we searched testimonies of parents who have children with the same medical diagnoses, we found a wealth of information. One mom would mention a certain therapy and in the comments, another would mention the therapies they use, and as you learn you will accumulate these options and decide what is a workable option for your family.
The best education advice we can give is to journal from day one in the NICU. We started a family Google Keep, this is a free app available on your mobile and computer systems, which allowed all of us to collaborate in one document the notes of things we learned or significant things that happened during the NICU stay. We even kept a timeline so we could refer back to when something significant happened medically or changes were made during our stay. This journal has been invaluable in starting this foundation. While we were in NICU noted anything that would improve the situation for families experiencing a NICU stay. Anytime there was something good or bad it was noted in the timeline.
We will add some great resources to our Facebook Group to get you started. Almost every clinical study or medical journal outcome we read was filled with the worst-case scenario. As we developed our research skills we found learning from other parents is the best resource available and not agenda-driven, or limited to academics knowledge. We found our hope learning from parents just like you looking for help, hope, and most of all solutions to improve quality of life.
We will update always update recommended resources as we find educational tools that we either have used personally or as a referral from another parent. Our babies are special and resilient. They will surprise you and fight harder than you can imagine. Don’t fall into despair but rather gather hope and fight alongside them.