What Am I Thankful For

As we continue to tell our story of Fetal Surgery at UCSF we get into post-surgical and recovery topics such as:

-The 1st ultrasound after fetal surgery

-How to help your loved ones in the hospital

-Life on bedrest

-A surprise request to sign a DNR order at the worst possible time

-A THANK YOU to nurses

-The outpouring of support for Maddux (including his namesake)

-My baby is no longer moving/kicking

-Our car gets towed in SF, insult to injury

-The Fetal Surgery PLAYBOOK

In Episode 5, we discuss the amazing experience that is Fetal Surgery to repair Spina Bifida (Myelomeningocele).  This process includes a surgical repair to a fetus at roughly the half-way point of a pregnancy.  The baby is operated on in-utero and then placed back into the uterus to continue the pregnancy for as long as possible until a "second-birth" is needed.  This procedure comes with some major benefits but also several risks to an otherwise healthy mother and her baby.  We share the entire experience leading up the the day of surgery in this episode.

Subtopics include:

-The MOMS trial: https://www.chop.edu/centers-programs/center-fetal-diagnosis-and-treatment/management-myelomeningocele-study 

-A breakdown of some of the positive outcomes of Fetal repair 

-Avoiding the s-word (Shunt)  

-What we were hoping to gain from Fetal Surgery 

-We began to educate our family and friends around the diagnosis, the plan for fetal surgery and potential outcomes 

-Traveling to UCSF: https://fetus.ucsf.edu/spina-bifida/ 

-Navigating career challenges and paid leave 

-Subtle coincidences 

-A fearless mother on the day of surgery

Thank you for listening!

www.thankfulforpod.com

In Episode 4, we continue to unpack the moments and reactions to receiving Maddux's diagnosis of Spina Bifida.  In this episode, we take a deeper dive into how we dealt with our feelings and depression.  How we each managed to pick ourselves up from depression and mourning and see the light that would lead to an important decision.  How would we proceed with this pregnancy?

Other subtopics:

-We believe that families should have the right to choose how they proceed post-diagnosis 

-The 2nd opinion that set us back on track 

-Bedside manner and connection is so important 

-The best advice we have ever received 

-RESEARCH - RESEARCH - RESEARCH 

-What Do You Do Dear? Blog

-#spinabifida #spinabeautiful

-What do families affected by Spina Bifida look like?

-What would happen to our family?

-Meeting with the Jenkins

-Are we really doing this Fetal Surgery thing??

www.thankfulforpod.com

Topics:

Creating the Podcast

Special Needs Parenting Means______?

Listener engagement from Social Media

Update on Maddux’s Return to School

Our son is growing up right before our eyes

Do we drink too much??  (Spoiler: Probably)

@whatamithankfulfor_ on Instagram

www.ThankfulforPod.com

In Episode 3, we discuss the events surrounding Maddux's diagnosis of Spina Bifida.  This diagnosis happened in the first trimester of the pregnancy and forced us to deal with the so many emotions.  Any parent that has faced the diagnosis of a disability or abnormality can relate to our account of the story.

Other subtopics include:   

-Infertility struggles recap  

-Nutrition Response Testing (For Fertility)

-What causes Spina Bifida?     

-Folic Acid/Folate Supplements   

-Don't blame yourself (even though you will!)   

-Genetic Testing   

-Diagnosis Day   

-When doctors recommend abortion   

-The different phases of diagnosis grief

-Get off the mat and do your research!     

-2nd Opinion  

-Decision timetables

-Fetal Surgery https://fetus.ucsf.edu/spina-bifida/   

www.thankfulforpod.com

We discuss the following: -Additional Goals for the Podcast Create awareness towards Local, State and Federal programs that help families with children that have disabilities How we manage to balance Maddux's schedule and needs with our marriage and professional goals -Current Events that have happened since deciding to release the pod Every special needs parent's nightmare! Maddux's horrific accident at school (9/7/21) that landed him the Emergency Room The struggles of trying to get him back to in-person schooling SAFELY How the public school system treats children with disabilities -Halloween - An Adaptive Wheelchair Costume Retrospective Why Maddux's Halloween Costumes are so important to us Blog Post: https://thankfulforpod.wordpress.com/2021/10/25/wheelchaircostume-2/ News coverage and support -Spina Bifida & Dwarfism Awareness Month (October) What does it mean to have a child with Spina Bifida? What does it mean to have a child with Dwarfism? A Dual-Diagnosis -Abortion Story of Matteo: https://apple.news/AbJMiavRSQxew4SwE-QCRig Doctors seem to talk families into abortion during the diagnosis Mentioned: @keep_goin_owen Hope you enjoyed the show, please check out the website: https://www.thankfulforpod.com/

We discuss the excitement and the vulnerability around starting the podcast.

Introductions

Goals for the Pod:

We want to share our amazing journey and celebrate the good times along the way!