Traveling with a medically-complex child can be stressful, overwhelming and daunting. Christy Wilkens, a mom of six, including a special needs child, shares how her family has conquered plane trips overseas and domestically, as well as road trips with their children in tow.
In this episode, we chat about:
When did you feel safe and secure enough to embark on travel with a special needs child?
What things did you do, or specialists did you consult to make you feel that way?
How do you balance safety for your child with the well-being of your family to travel?
Airplane or car tips you use to make travel easier?
For flying, what are things you communicate to the gate agent and flight attendants to ensure a smooth flight?
What helped make your overseas trip with a special needs child a positive, less stressful experience?
What are your must-have travel items?
For those traveling this summer who see a family with a special needs child, is there anything they can do to encourage that family, or something that might be of assistance?
What’s your best advice to a parent wanting to travel with their medically complex child?
Christy Wilkens is a mom to medically complex kids and a NICU nurse in training. She is the author of Awakening at Lourdes: How an Unanswered Prayer Healed Our Family and Restored Our Faith and writes and speaks about disability, faith, and the power of community. She lives near Austin, Texas with her husband Todd and their six children.
Helpful products:
Safe Place Travel Bed. Inflatable bed for kids who have outgrown portable cribs. Can use it on top of a bed, but we use it on the floor with a foam mattress topper, or an inflatable mattress pad for airplane trips. Super affordable (by special needs equipment standards). Ours is four years old and going strong.
Special Tomato EIO Pushchair or Jogger. Foldable stroller with extra positioning support (for kids up to 90 pounds/50 inches).
CARES Child Aviation Restraint System. Provides additional chest harness to be used in-flight, in addition to the lap belt. Designed for kids 22-44 pounds but can be approved for larger children, with prior FAA notice. (This link includes info about how to get approval, and example letter templates to file your request.)
Ride Safer Travel Vest. For kids who need mild to moderate support, this wearable child restraint system can take the place of a car seat. Harness connects directly to the car's seat belt and provides additional security.
Seat Belt Medical Alert. Has a pocket inside to tuck a one-page document offering EMS (or anyone else!) a quick reference about identifying info, diagnoses, medical needs, and providers.
Medication Organizer. Keeps pills in their original containers which can help smooth things over through TSA security.
Connect with Christy:
Instagram: https://www.instagram.com/csawilkens
Facebook: https://www.facebook.com/faithfulnotsuccessful
Website: https://www.christywilkens.com
Buy her book:
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license
Your diagnosis doesn’t have to determine your outcome. As we conclude our four-part series on pre-eclampsia, Parijat Deshpande, a somatic trauma professional, shares how to heal from trauma.
In this episode, we chat about:
What is a somatic trauma professional and what led you to that profession?
How does your book, Pregnancy Brain, empower parents, especially those who are high-risk or find themselves in the NICU?
If a woman finds herself in a high-risk pregnancy, is there anything she can do to minimize the trauma she may endure either during delivery, or post-birth?
Why are you so passionate about serving the BIPOC community?
You've said you want pregnant women to know they aren't at the mercy of statistics. Those statistics can often feel overwhelming and limiting to a NICU mom, particularly one who has been diagnosed with pre-eclampsia. How can a mom process those emotions, address them and move forward in her pregnancy?
If a woman suspects she has pre-eclampsia or is diagnosed with it, what should she be asking her doctor?
Many women fear a pregnancy post- pre-eclampsia. Two part question: 1) if she chooses not to have another baby, how can she heal from the trauma her first pregnancy may have triggered? and 2) if she chooses to move forward with another pregnancy how does she do it without being debilitated by fear and anxiety?
What's your best advice to a woman diagnosed with a high-risk pregnancy, like pre-eclampsia?
Parijat Deshpande is an author, speaker and the CEO of a global, boutique company dedicated to reducing pregnancy complications and ending preterm birth. On a mission to end the high-risk pregnancy crisis, she has served and supported hundreds of women through her programs, one-on-one work and bestselling book, Pregnancy Brain: A Mind-Body Approach to Stress Management During a High-Risk Pregnancy.
Buy Parijat’s book:
https://parijatdeshpande.lpages.co/pregnancybrain/
Connect with Parijat:
Instagram: https://www.instagram.com/healthy.highriskpregnancy/
Facebook: https://www.facebook.com/ParijatDesh/
Twitter: https://twitter.com/parijatdesh
YouTube: https://www.youtube.com/channel/UCCS-y3p6DfELaZd3Fp7nYtA
Website: https://www.parijatdeshpande.com/
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license
As we continue our four-part series on pre-eclampsia, this couple’s story about infertility, guilt, grief and healing will touch you, particularly NICU dads who often feel unseen in their loss.
In this episode, we chat about:
Was your pregnancy considered high-risk from the beginning?
When were you given a preeclampsia diagnosis?
What do you want people to know about your experience with preeclampsia?
How do you honor the life of your baby?
As a couple, what did you learn about your marriage through this experience?
Steve, what message do you have for NICU dads who might find themselves in a similar situation?
What's your best advice to a couple who has received a preeclampsia diagnosis or suffered infant loss?
Steve and Kelly Gurvis have been married for 24 years and have three sons: two living and one beautiful angel baby, Liam Anthony. They run their own businesses and stay active honoring Liam in every way possible. Steve and Kelly reside just outside of Chicago.
Resources mentioned:
Connect with Steve and Kelly:
TikTok: https://www.tiktok.com/@liamslovedesigns
Facebook: https://www.facebook.com/kelly.gurvis
Website: https://etsy.me/3pALhvZ
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license
As we continue our four-part series on pre-eclampsia, this mom’s story of fear, survival and resilience will both empower and encourage you.
In this episode, we chat about:
Was your pregnancy considered high-risk from the beginning?
When were you given a pre-eclampsia diagnosis?
What was your relationship like with your OB/GYN and maternal fetal medicine doctor?
What do you want people to know about your experience with pre-eclampsia?
What were some of the challenges you experienced as a mom in the NICU? What about your baby, both in the NICU and beyond?
What's your best advice to a woman diagnosed with pre-eclampsia?
Dana Adams is currently a Benefits Analyst for the University of California. After the birth of her daughter Kyra, she started a non-profit, 11Eleven45FortyFive. Its mission is to help NICU moms and dads handle any of their disability paperwork which includes but is not limited to calling the doctor’s offices while the parents are tending to the essentials.
Connect with Dana:
Email: 11eleven45fortyfive@gmail.com
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license
Pre-eclampsia affects more than 200,000 pregnancies every year, just in the US alone. Dr. David Berry, a maternal fetal medicine doctor, helps us kick off the first of a four-part series where we dive into the intricacies of this disease by sharing symptoms, signs and treatment options.
In this episode, we chat about:
What is pre-eclampsia and how is it diagnosed?
As a Maternal Fetal Medicine doctor, what percentage of your patients are affected by pre-eclampsia? How does that compare nationally?
Why do we see more women of color, particularly black women, affected at a higher rate than others?
In 2022 The New Yorker published a story about the rise of pre-eclampsia cases during and post-COVID. How much of that is due to better testing/diagnostics and how much is it really rising? And what does that mean for moms-to-be?
What is HELLP syndrome? How difficult is it to accurately diagnose? What should women and their doctors be on the lookout for in the third trimester and after birth?
What are the treatment options for pre-eclampsia?
If a woman suspects she has pre-eclampsia or is diagnosed with it, what should she be asking her doctor?
What's your best advice to a woman diagnosed with pre-eclampsia?
Dr. Berry is a specialist in maternal-fetal medicine, a branch of obstetrics that manages and treats complicated and high-risk pregnancies. He is a native Texan and moved to Austin in 1978. He graduated from the University of Texas followed by his medical training in Galveston, Ft. Worth and Houston. He was the founder of Austin Perinatal Associates in 1997 and has served the women of central Texas with complex pregnancies since that time. He is an expert in pre-eclampsia, critical care obstetrics, cancer in pregnancy and cervical cerclage, and currently is employed under Texas Children’s Hospital as they expand their footprint into central Texas.
New Yorker article:
Connect with Dr. Berry:
Website: https://women.texaschildrens.org/program/maternal-fetal-medicine/locations
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license