Alexa Bigwarfe's Experience of Twin-To-Twin Transfusion, Infant Loss, and Transformation Through Writing
Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Release Date: 08/26/2021
Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 124:Maximizing Communication With Your Child With Guest Rosemarie Griffin In this episode, guest Rosemarie Griffin discusses ways to maximize your communication with your child and ways to help them grow their communication skills. Links: Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud...
info_outline Demystifying the IEP With Guest Beth LiesenfeldThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 123: Demystifying the IEP With Guest Beth Liesenfeld In this episode, we discuss OT in the schools and understanding all the parts of the IEP, to make everything work for each child. Links: Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)...
info_outline Partnering With Care Professionals With Guest Craig ParksThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 122: Partnering With Care Professionals With Guest Craig Parks In this episode, guest Craig Parks discusses the best ways to partner with care professionals. Links: Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock...
info_outline Divorce and Special Needs ParentingThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 121: Divorce and Special Needs Parenting In this episode, Jessica speaks candidly about going through and coping with divorce during the pandemic, while raising children with special needs. Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock...
info_outline Betsy Stover's Experience With Medical TraumaThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 120: Betsy Stover's Experience With Medical Trauma In this episode, Betsy Stover, the lovely podcast host of Why Mommy Drinks, discusses her experience with helping her child cope with medical trauma. Her youngest son, Odie, went through two open heart surgeries, one at 2 and one at 5. He coped really well at age 2. However, the doctors didn't listen to him or show him respect after this second surgery and did not explain any medical procedures to him or provide any form of pain management. Betsy discusses how she, her husband, and her son coped with living through and observing...
info_outline I Hate Potty TrainingThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 119: I Hate Potty Training In this episode, Jessica discusses the trials and tribulations of potty training children. Spoiler alert: She hates it! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License...
info_outline All Out of MoneyThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 118: All Out of Money In this episode, Jessica discusses the financial toll being chronically ill and raising children with special needs can take, as well as ways to find funding for needed expenses. Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)...
info_outline Thriving Through The HolidaysThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 117: Thriving Through The Holidays In this episode, Dr. Koonce discusses the best ways to thrive through the holidays with children who have special needs. She also discusses helpful at-home ABA strategies. It is important to prepare for the holidays with your special needs kids for many reasons, including loss of routine, change in structure, trying to set a new routine for a short time, having other people living in or visiting in our space, more planning for things that are new, eating schedules, bathing schedules, navigating face masks, and fatigue. She recommends that you as a...
info_outline The Impossibility of Finding TherapiesThriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 116: The Impossibility of Finding Therapies In this episode, Jessica discusses how hard it can be to slog through therapies, therapists, insurance, funded programs, and the like to try, and fail, to find the proper therapies for your kids. Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0...
info_outline Navigating Insurance - Again!Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Episode 115: Navigating Insurance - Again! In this episode, Jessica discusses the trials and tribulations of finding therapies that will take your insurance, as well as finding funding to finance different therapies. Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)...
info_outlineEpisode 104: Alexa Bigwarfe's Experience of Twin-To-Twin Transfusion, Infant Loss, and Transformation Through Writing
In this episode, Alexa Bigwarfe discusses her experience with twin-to-twin transfusion syndrome and child loss. During her third pregnancy, she should have been followed as a high risk pregnancy with a maternal fetal medicine doctors, although the OB who was following her did not do her due diligence and missed the twin-to-twin transfusion. At the 12 week scan, her doctor nonchalantly mentioned twin-to-twin, but didn’t seem concerned. The doctor skipped the 16 week ultrasound altogether. At the 20 week ultrasound, they found the transfusion and immediately transferred her to labor and delivery. At the hospital, she saw an MFM, who provided her options for management of the transfusion. She was hospitalized three times during her pregnancy to do an amniocentesis. During her last hospitalization, she was bedridden in the hospital to be monitored for a month. Her twins were born 9.5 weeks early, as she naturally went into labor. Katherine passed away after two days. Her surviving twin was growth restricted in the womb and spent 3 months in the NICU. After the fact, Alexa found that there could have been other treatments provided for her children, but her doctors either didn’t know or didn’t offer those treatments.
The NICU stay was very hard for Alexa because she had to pass the spot where he other daughter passed away. Her other daughter had some touch-and-go moments, but was otherwise lucky in her health that she didn’t have lung, eye, or bowel issues. Meanwhile, Alexa was also caring for a 2 and 4 year old. Milk flow was low due to stress and trauma and Alexa had to pump every 2 hours around the clock to maintain her milk flow. Her daughter had issues with reflux, had trouble with suck-breathe-swallow, and needed a few minor surgeries. She was still a low weight due to feeding difficulties, so she had a g-tube placed. She had a hole in her heart when she was born, and it closed on its own by 18 months.
Alexa initially coped by compartmentalizing, and put her grief aside to take care of her other children. Afterward, she coped by using writing, support groups, blogging, Facebook groups, and connecting with other moms.
To write a book, start with an outline. Interview other people who have gone through the process to get other perspectives as well. Spend some time figuring out how you want to publish. Hire someone to do the things you aren’t good at. Get educated on all the different steps.
Ditch The Fear And Just Write It
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Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple