Inside the Children&#8217;s Hospital

' Letting go of Breastfeeding Comparisons' episode with Chelsea Bea

Quabbin Birth Services

The Milk MakIng Minutes Podcast

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Episode 165 | Kelsey's Story - A daughter with gastroparesis and hereditary spherocytosis Apr 12, 2023

Show notes

Katie, along with co-host Serheen Noor-Ali from Hello Sleuth interview Kelsey Ward, mom to Scarlett who was diagnosed with gastroparesis and hereditary spherocytosis as an infant. Kelsey shares the ups and downs of what it means to be a medical mom and how Scarlett's diagnosis strengthened her marriage. Body confidence is something near to Kelsey's heart. She shares about how she empowers Scarlett to be proud of her g-tube and scars. This episode is packed with great dialogue and you will get at insight from both Kelsey and Serheen on navigating medical parenthood.

[3:40] Kelsey introduces herself and her family

[4:04] Finding out she had a blood disorder

[4:31] Scarlett was losing weight at 2 months old

[6:10] Gastric emptying scan revealed answers

[6:56] G-tube placement

[7:29] G-J tube placement

[7:57] Pyloroplasty surgery success

[9:27] Behind on developmental milestones

[11:24] Connecting with parents on social media

[12:20] Feeding Therapy 101

[13:21] Swallowing vs Textural

[15:10] Sibling bond and integration

[16:00] Balancing information sharing with her siblings

[17:26] Medical supplies and home integration

[18:46] Finding your family's new normal

[21:09] Post discharge to do lists

[21:39] Post g-tube replacement

[22:58] Hospital shower woes

[24:55] Prioritizing yourself

[26:02] Celebrating everything

[27:46] Perspective on body image

[29:12] Lack of accessibility

[31:00] Everybody is different

[33:12] Sharing about

[34:13] Do what works for your family

[36:12] Social Media boundaries

Connect with Kelsey

Link to Present not Perfect's store front here.

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Give medicine to your child without it becoming a wrestling match
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Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

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Episode 164 | [Repost] How to Talk with Kids About Child Abuse with Jane Donovan Apr 10, 2023

Show notes

April is Child Abuse awareness month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse.

Today's guest expert is my mother, Jane Donovan, who is a child abuse advocate. She is here to provide tangible ways to make this concept less scary and to empower kids and parents. We want to leave you feeling confident about how to teach kids about child abuse.

In this episode, we talk about…

[3:50] Jane's background and her passion for advocacy

[8:48] Using puppets to talk to kids about child abuse

[15:04] Good touches versus confusing touches

[15:54] Empowering children to tell an adult about abuse

[17:31] Respecting personal space

[21:08] Feedback about the puppet program

[22:35] Reporting child abuse

[25:42] Engaging in conversations with kids about child abuse

[31:06] A safety sheet to create with your children

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you'll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Episode 163 | Emma's Story - A daughter with Trisomy 18 Apr 05, 2023

Show notes

Katie interviews Emma Springer, mother to Sage who was born with Trisomy 18. Emma shares her journey to parenthood and how they learned of Sage's diagnosis. Prior to Sage being born, Emma was a pediatric nurse. Emma shares the struggles she went through in Sage's first few months to find care options. She opens up about how being on social media can be so empowering but also shares some of the challenges go along with it. Through Emma, you will get to know the joy that Sage carries with her each and every day.

Katie dedicates this episode to her dear friend Anna and family who lost baby Jack to Trisomy 18.

[5:50] Introductions

[7:12] Meeting her husband at College

[7:41] Enrolled in nursing school

[9:08] Opting out of first trimester screening

[9:51] Navigating Covid in early pregnancy

[10:27] Two blood vessel cord and cysts on the brain at 20 week ultrasound

[11:45] The combination of symptoms were concerning

[12:54] Blood test results coming back with high probability of Trisomy 18

[14:57] Being alone for the appointments was very isolating

[16:24] First time being a patient

[18:16] Getting the call about the diagnosis just before an echocardiogram for baby Sage

[22:00] Learning about Trisomy 18 during clinical rotations

[25:00] Telling her family about the diagnosis

[27:11] Cardiac interventions

[29:58] Hope for the future

[31:29] Respiratory support changed her life

[34:20] Finding things in common with other families

[37:29] Connecting with other parents changed the trajectory of their course

[39:56] Social media causing fast movement with advancements for treatment

[41:30] Recognizing your boundaries

[46:00] Sage loves being around people

[49:30] Hospitalizations

[51:20] Growing advocacy skills

[52:48] Compartmentalizing emotions

[55:11] Looking behind the curtain isn't always pretty

[57:45] Springer Family Foundation Resources

Connect with Emma

Springer Family Foundation

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When you download our starter kit, you'll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

Child life specialists, get affordable PDUs on-demand here.

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Episode 162 | Kayla's Story - A daughter with Ollier's Disease Mar 29, 2023

Show notes

On todays episode of the podcast, Katie along with co-host Mijha Godfrey from Jambo Books, interview Kayla Gunderson, who's daughter was diagnosed with Ollier's disease. You will get to hear how Kayla navigated her daughter's diagnosis just weeks after giving birth to her son and her valuable perspective as a nurse and former Child Life Specialist. We talk about navigating grief, the support of her spouse and loved ones and what Claire has taught Kayla along this journey.

[4:47] Mijha shares about Jambo books

[7:00] Kayla introduces herself

[9:40] Small bumps on her daughter's finger

[10:27] Full body rash from amoxicillin reaction

[12;23] Playing phone tag with the doctor

[12:44] Mention of Ollier's Disease

[15:29] Emotions run high after receiving a diagnosis of Ollier's disease

[16:50] Blaming yourself

[19:12] Understanding Ollier's disease

[20:40] Expressing her feelings at her postpartum appointment

[22:17] Ollier's is a rare disease

[23:18] The delivery of information can make or break you

[24:07] Mijha shares how she learned of her daughter's condition

[26:00] X-rays revealed she had endchondromas in her hands and feet

[27:59] The grief process

[29:41] Supporting those walking down the same road by sharing Claire's story

[31:06] Being grateful for the timing of the diagnosis to be together as a family

[31:50] The support of family

[33:25] Genetics appointments and advocating for an earlier time

[34:22] Relationships and connections are important

[35:35] Understanding her own fragility

[37:00] Giving others the avenue to support you

[39:38] Coming to terms with the birth of her last baby

[41:10] Motivation and inspiration

[42:30] Listening to podcasts is healing

Connect with Kayla

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Parents, download our free parent starter kit.

When you download our starter kit, you'll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Episode 161 | Dana's Story - Micropreemie Twins Born at Home Mar 22, 2023

Show notes

Katie along with Co-host Cortney Given, host of the podcast Mindset for Medical Moms , interviews Dana who had micro-preemie twins at home. She bravely shares her story and how she and her husband acted quickly with the unexpected home birth. Dana shares how she navigated the long NICU stay and the moments to come afterward. You will get a glimpse into their life today and what it looks like to manage their medical care. Dana's journey to advocacy and letting others into your life during challenging seasons as a medical parent is something that is talked about enough in this important conversation on today's episode of the podcast.

[10:50} Introductions

[11:47] Fertility struggles reveals PCOS diagnosis

[13:04] Finding out she was having twins

[13:55] Ultrasound revealed possible complications

[14:30] Delivering the babies at home

[15:57] How giving medical history is a whole process

[17:41] Lower back pain just before bedtime

[18:56] Dana delivers at home

[19:55] James begins to breathe

[20:34] Vera was born breech

[21:44] Not cutting the umbilical cords saved their lives

[23:42] Babies rushed to level 4 NICU

[25:44] A humbling experience

[26:39] Being released 3 hours after giving birth

[28:02] No explanation of early delivery

[30:08] The support of family

[32:10] Allowing others to support you as a medical parent

[34:16] Learning to be an advocate

[38:00] It's ok to snooze support groups

[40:30] James and Vera today

[41:21] Mild Cerebral Palsy diagnosis

[44:51] Giving people the benefit of the doubt

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you'll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Episode 160 | Jodi's Story - HELLP Syndrome and a Premature Birth Mar 15, 2023

Show notes

Katie has a co-host, Serheen Noor Ali from Hello Sleuth on today's episode where we hear Jodi's story of developing HELLP Syndrome and having a premature birth. Jodi walks us through her birth story along with those first moments meeting her daughter. She speaks to the joy we find in the unexpected and will leave you inspired to embrace where you are today. You will get to know Jodi's heart behind the creation of Fllrish.

[5:40] Full circle of relationships

[6:07] The crash course of becoming a medical parent

[7:14] Special needs mother's quitting the workforce

[9:30] Thinking ahead about Kindergarten

[10:27] Jodi's husband went on his last business trip

[11:21] HELLP Syndrome diagnosis

[12:45] The calm reassurance from her provider

[13:42] The birth plan

[14:50] The onset of symptoms of HELLP

[17:11] Not seeing her daughter for 2 days as she needed to recover

[18:16] The meaning behind Jenna's middle name

[20:44] Telling her doctor their was a problem

[24:00] How life and death is transformative

[26:32] Husbands and fathers getting more credit

[28:29] Beginning to process what happened allowed Jodi to have maternal feelings

[31:03] Their own growth trajectory

[34:12] Deeper joy to be found in the journey

[36:29] Putting one front of the other and checking your feelings

[39:20] Not coming home with your child is difficult

[40:37] The creation of Fllrish

[42:25] De-stigmatizing learning differences

44:32 Resources for parents

Connect with Jodi

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When you download our starter kit, you'll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Episode 159 | Ryan's Story - A son with Muscular Dystrophy (Becker's) Mar 08, 2023

Show notes

On today's episode of the podcast, Katie interviews Ryan who's son has Becker's Muscular Dystrophy. Ryan tells the story of the road to diagnosis for his son Jack and how their family coped along the way. Hear about what fueled Ryan to start an organization to help fund research to change the lives of children and adults with Muscular Dystrophy. This episode is filled with inspiration, hope and the raw perspective of a father advocating for his son.

[4:20] Ryan Introduces himself

[7:24] They noticed Jack was toe walking at 3 years old

[9:20] Braces helped Jack walk flat footed

[11:11] Noticing a difference in Jack's muscles

[12:30] Elevated protein levels indicate there is an issue

[13:36] Muscular Dystrophy diagnosis for Jack and other family members

[15:30] How Ryan coped with the diagnosis

[18:50] Learning very quickly who your people are

[20:00] Trust and rely on those who reach out to help

[21:06] A family friend explains Jack's condition to his children

[23:00] The regret of past decisions

[25:09] Jack's older sister's positive impact

[27:39] The gift of the sibling relationship

[28:56] Creating an organization to find a solution

[30:20] As simple as a blood test

[31:55] Curing Muscular Dystrophy with gene therapy

[35:00] How a connection lead to the beginning of the research

[37:54] Going down a rabbit hole

[39:53] Accepting that we don't have all the answers

[40:49] The level of bravery

[42:11] He teaches me more than I will ever teach him

[44:20] Stay tuned for published research

Connect with Ryan

Facebook

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When you download our starter kit, you'll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Episode 158 | Kristen's Story - Licensed Family Therapist - Anxiety in Children Mar 01, 2023

Show notes

On today's episode, Katie meets with Kristen McNeely, a Licensed family therapist who is in expert on Anxiety in Children. Kristen shares the importance of how we respond to anxiety as parents and caregivers, helping children understand what anxiety is and how we can help them navigate their feelings. This episode is full of ways to support your child through anxious moments and knowing when to get them help.

[4:12] Kristen introduces herself

[5:45] Seeing more behavior disorders that are manifesting as anxiety

[7:15] Your child's anxiety is not your fault

[7:45] The way we respond to their anxiety is important

[10:19] Understanding what anxiety is

[12:15] Accommodating vs Supporting

[14:42] Being systematic in your approach

[15:45] Our children are people too

[18:20] Getting a call about her son at school

[19:18] Wearing a professional hat as a parent

[20:23] Shifting your perspective

[21:20] Every situation is not an indicator of a problem

Connect with Kristen

Freeing your Child from Anxiety by Tamar Chansky

SPACE

Books Kristen Recommends

Breaking Free of Anxiety and OCD Eli Lebowitz

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

When you download our starter kit, you'll learn how to:

Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Episode 157 | Crystal Polk - Social Worker + Caregiver Expert Feb 22, 2023

Show notes

podcast, Katie interviews Crystal Polk, a Social Worker and Licensed Therapist speaks about the dual role parents of medically complex children hold as caregiver and parent. Crystal specializes in working with families who have children with special or medical needs. She gives parents practical things they can do today to start on the path of healing.

[3:30] Crystal introduces herself

[6:00] Identifying the differences between caregiving and parenting

[8:30] Acknowledging the stages of grief

[9:40] Grieving what you once imagined

[11:03] Delegation, being heard and frustration are common themes

[14:08] Healing unprocessed trauma using EMDR

[16:19] Lean into mindfulness

[17:53] Giving your self the the gift of consistency

[21:13] Type of support families receive varies from state to state

[22:24] Parents are demanding positive changes

[25:04] Getting the word out about parent caregiver support

Connect with Crystal

Unseen Caregiver Documentary

Crystal recommends using Psychology Today to search for a qualified therapist. View Crystal and other therapists here.

Crystal is LEND Certified. Read more about the LEND program here.

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.