This week we chat with Kelli Kelley, a 2x NICU parent who is also the founder and CEO of Hand to Hold, a national nonprofit organization dedicated to providing emotional support, education, and community to parents who have had children in the Neonatal Intensive Care Unit (NICU) or the loss of a baby.

Quick Call Outs from the Episode:

• Our challenges don’t end at the NICU
• Kelli shares how at first, she was reluctant to even step foot in the NICU after her son was born, but she was encouraged because she knew that he would know her voice and her presence
• It does take time to find your “sea legs”, or “NICU legs”
• We all have our NICU story, and many of those begin with a difficult and traumatic delivery, and can then be followed by difficult, challenging, ongoing medical journeys.
• No matter if your time there is 2 days, 2 weeks, 2 months, or beyond… you need support
• When you go home a new journey begins
• By talking about the experience with your kids, and advocating for them, they can come to learn to advocate for themselves and to see how far they have come!
• Kelli spent 4 months in the NICU with her son, and 1 week with her daughter. They had very different journeys, and in some ways, the second time was even more difficult.
• Reminder about Early Intervention - the earlier parents in the NICU understand their child’s risk factors, the earlier parents can access support
• Post-Covid, people understand how difficult isolating for health reasons can be on mental health. It keeps the conversation open.
• Hand to Hold provides support in every NICU in Austin where they are located, as well as other hospitals in TX. 
• They also:
  • have a podcast for parents, and a podcast for professionals
  • host a free virtual conference in the fall for parents and for professionals
  • offer several support groups
  • have a brand new app
  • have great resources en Español

Let's keep in touch!
You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

WE LOVE OUR NICU NURSES - Sarah has been a nurse in the Neonatal ICU (NICU) since 2005. The NICU she works at is a Level III - 40 Bed Unit in Miami. She serves as the Charge Nurse as well as the Clinical Coordinator. Sarah is married and has 2 daughters, ages 5 and 6.

Quick Call Outs from the Episode:

• A Clinical Coordinator oversees the care of all of the patients in the NICU as well as the work of the nurses assigned to them.
• Nurses, babies, and families form bonds through the difficult and overwhelming time that they are going through while in the NICU, sometimes those bonds continue beyond the NICU.
• As you prepare to leave the NICU, don’t forget to take care of yourself, acknowledge the emotions you’re going through, and remember that having a support team can really be helpful.
• Journaling while in the NICU is also helpful, if you’re experiencing one of those days where your baby has a setback, then looking though the journal to see how far they have come can really help.
• Not every day in the NICU is a “good day” or a “bad day” where progress is made or setbacks are experienced. Sometimes “nothing” happens and you can take that as a win too. 
• After the NICU, talk about your experiences and share what your life looks like with your baby at home. Talk to friends, family, and maybe even join a support group!
• You may need to isolate physically due to having a medically fragile baby, but by talking and sharing with others,  it can help prevent you from isolating emotionally. 
• It's ok to remain cautious as your baby grows and becomes stronger. You can be empowered to set boundaries when you feel like you may need to take a more protective approach as your child is exposed to situations where they may be around others who are sick. 
• We can't control everything - and your baby is going to get sick... But you can be creative. Carry hand sanitizer, have masks on hand if you start to feel like you’d be most comfortable having others wear a mask while they hold your child for a season, get together outdoors when possible so that you don't feel like you can't socialize with others and still gather together.
• If you think of any questions for Sarah, you can connect with her through her email ([email protected]).

Let's keep in touch!
 You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

On our first episode of the year, we speak with Tammy Balaban, an Occupational Therapist in NYC. She has over 15 years of experience working in various settings including schools, homes, and clinics both privately and through Early Intervention. Tammy is passionate about helping babies and their families. She’s been called a "toyologist" by parents, who love her creative approach to using a wide variety of toys in her therapy. 

Quick Call Outs from the Episode:

• As a NICU family, getting started in with therapy can be an additional emotional journey, especially since you are most likely still processing
• Your Early Intervention team really invests in your child and their overall progress, they are a great resource for you on your child’s journey!
• What is a “toyologist”? Tammy researches toys to understand how playing with them can therapeutically help a child and foster their development. =)
• Some toys we talked about
  • Fisher-Price Laugh & Learn Smart Stages Piggy Bank
  • Sneaky Snacky Squirrel
  • Zingo
• Connect with other parents, some groups we love:
  • Hand to Hold
  • dearNICUmama
  • NICU Alumni Parent Support Group
• Be encouraged, even if you don’t see immediate progress in your child as they begin Early Intervention, when you look back to what they were doing when they started and compare them to themselves, you will see them making gains.
• You can connect with Tammy through her email ([email protected]).

Let's keep in touch!
 You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

Our goal for this podcast has been to talk with parents and families who have “been there” so they can share about their NICU experience, as well as experts who have some kind of connection to the NICU field… Cynthia’s experience and career path actually check both boxes so this episode is kind of a hybrid. We talk about her personal experiences and how she navigated the NICU and post-NICU journey within her family, and also about her point of view as a Mental Health Therapist in the field.

Quick Call Outs from the Episode:

• There is grief in letting go of the expectation of having a “typical pregnancy” and “typical birth experience”
• Cynthia shares that in the early days after the NICU she experienced Postpartum Depression, she didn’t feel prepared and her survival mechanism was to operate on “auto pilot”
• The NICU is a traumatic experience, and afterwards you may experience triggers
• We don’t choose what will cause a trigger - and when you’re just out of the NICU those triggers can be louder than when there is distance from that experience
• It’s helpful to deal with them as they present themselves, acknowledging them and naming them
• As they present themselves, tease them out. What is coming from trauma? What is hormonal? What is something that is just part of your personality?
• The NICU doesn’t leave you, but there is a big community of support for you after you leave. Sometimes you need to tap into that community, or you need to speak to a professional and receive social support.
• Cynthia has found that as a result of her NICU experience, she sometimes navigates feelings of defensiveness and combativeness towards medical professionals because she pushes back and asks questions. She sees that with the NICU families she works with as well.
• Andrea asks - What if we reframe that perspective and instead, consider that as a result of our NICU experiences, we become greater advocates for our children when working with medical professionals which is why we are asking follow up questions and insisting on having a greater understanding of our child’s ongoing care
• Cynthia takes a minute to give one more reminder to acknowledge and name your triggers - ignoring them PAUSES your PROGRESS. Love that advice!
• Self care is important; mark self care part of your parenting
• Resources we love:
  • Hand to Hold
  • dearNICUmama
  • NICU Alumni Parent Support Group

You can also connect with Cynthia via her email ([email protected]).

Let's keep in touch!
You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

Brooke Arevalo, is an Early Intervention Advocate raising 5 beautiful children in sunny San Diego.  Her children range from ages 1-9, with her oldest being the only girl. Three of her children were premature, and 4 of them have gone (or are going through) the Early Intervention program. Her family relocated from New York City to San Diego during covid, so she has gone through this process in both states. She is currently a Director of Finance for a tech startup, and in her free time she loves to surf and cycle!

Quick Call Outs from the Episode:

• In the beginning after the NICU, it was surprising to see the amount of time that was focussed on feeding. It required a lot of planning ahead of time especially when coordinating outings.
• As a NICU Alumni family, you may already know to expect some differences in your child’s developmental trajectory.
  • Watch them and consider if something may be an "actual red flag", or may just be a matter of waiting to see if they will "get there on their own time”. 
  • It's a balance, and you can always discuss concerns over what you're observing.
• Advocate for your child - share your concerns, and know that you can push back and appeal a decision if your child is determined ineligible for Early Intervention services.
• During Early Intervention, your child will receive progress reports which at times can be hard to read through. 
• Over time,  as you compare them to themselves and to where they started, you will see the progress, and that hopefully, they are growing, learning, and thriving.
• A resource that was helpful to Brooke
  • CDC Milestones
  • CDC Milestone Tracker App
• It can be hard, but it is worth it. 
• Celebrate along the way!
• Getting support early is key.

Let's keep in touch!
You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

Liz is an expert in all things Early Intervention (EI) - especially as it relates to services in NYC… but she has a wealth of knowledge to share that can be helpful to all of our NICU Alumni families, no matter where you are.

After gaining some experience working in Early Intervention she fell in love and never looked back. She has now dedicated herself to supporting families in EI programs for over 12 years.

Quick Call Outs from the Episode:

• Early Intervention (EI) is a federally mandated program available across all 50 states. This program services children from ages 0-3. 
• EI delivers evaluations and services to support a child’s ongoing development.
• Although EI is available in all 50 states, how it’s delivered may look different in your home state.
• THE FIRST STEP to get the evaluation process started, is to open a referral with the EI Agency in your state - that can come from a doctor, a teacher, or directly from you.
• A child is evaluated across multiple areas to determine what services, if any, they will receive.
• If your child is determined ineligible for services, and you feel this does not reflect their development, you can request another evaluation.
• Liz reminds us, as the parent, you are the expert about your child!
• EI is completely voluntary and confidential. The results of the evaluations are treated like medical records.
• If you’re hesitant about Early Intervention, since it can be a lengthy onboarding process, Liz recommends to at least have the evaluation done, so that you can decide next steps.
• You can also start slow with the amount of services your child receives, however we strongly feel that the sooner you start, the better, and the more services your child can receive, the better!
• Since a NICU experience can be traumatic and triggering, consider joining a support group, whether it’s led by a Social Worker, or peers (PS - NICU Alumni hosts a parent support group in South Florida).
• Group Support is available through many venues, such as: online forums, virtual, in person, etc… go at your own pace and give yourself grace!
• Connecting with a Developmental Pediatrician, someone who can follow your child's progress, can be another great addition to your child's healthcare team.
• New York specific resources
  • OPWDD for medicaid waiver 
  • Information about NYC Early Intervention
  • Bank Street Playgroup contact information

You can connect with Liz though her email ([email protected]).

Let's keep in touch!
You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

Deb Malkoff-Cohen is a Registered Dietitian (RD), Certified Dietitian-Nutritionist (CDN), and Certified Diabetes Educator (CDE), with a Masters in Clinical Nutrition from NYU. She is the founder and owner of Nutrition by DMC, a nutritional consultation service for children living in and around New York City. Known for her innovative approach to spooning nutritional knowledge into small bellies, Deb is passionate about helping kids achieve physical and emotional health.

Quick Call Outs from the Episode:

• From a nutrition standpoint, the main objective in the NICU is for your baby to be healthy enough and stable enough to come home.
• Once you’re home, you may not know when to start to advance your child, and you may not know what goals and priorities to set for making progress when it comes to feeding.
• It is helpful to get a consultation with a Dietician or with an Occupational Therapist who specializes in feeding. Meeting with them even just once can help relieve a lot of stress around feeding.
• Know that you are not a failure if your child ends up needing to get a G-tube.
• When transitioning to solids, make food taste good! Add the butter! Other flavors to consider: oregano, nutmeg, cinnamon, hot sauce(!!)
• Deb’s recommendations:
  • Yumi Food Delivery
  • Beaba Baby Food Processor
  • WeeSprout Glass Baby Food Storage Jars - Set of 12
  • Superior Glass Food Storage Containers - Set of 6
  • Deb's favorite G-tube formula for 1yo+ is by Kate Farms, they are vegan, dairy free, and qualify to be covered by insurance
  • Another good G-tube food option for 1yo+ by Real Food Blends, they also qualify to be covered by insurance

We do not receive any incentive or compensation when we make these recommendations. You can can connect with Deb via email ([email protected]), on Instagram or through her website.

Let's keep in touch!
You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

Felecia Hatcher currently serves as CEO at Black Ambition; a bold organization founded by Pharrell Williams that catapults and invests in ideas and companies led by Black and Latinx entrepreneurs, scaling business ventures in media and entertainment, consumer products and services, healthcare, technology, and Web 3.

Tomorrow, Nov 17th is World Prematurity Day. It is also the day that kicks off Giving Season in Miami, known as Give Miami Day, so it’s going to be a big day!

We thought it would be really special to talk to Felecia during this time as she is someone who is truly a “Social Impact Extraordinaire”, and is someone who has also had a similar shared experience to our NICU Alumni families, being a 2x NICU Grad parent herself.

Quick Notes from the Episode:

• There is community in the NICU, people who you start to get to know who are going through the same shared experience as you
• There are also experts that know your child and see your child every day, so when it’s time to go home, it can feel daunting and can feel like no matter how long your child was in the NICU, you aren’t going to be enough of an expert.
• You know the terminology, you can ask the questions, and you can become an advocate for your child and for yourself. 
• You can ask your medical providers to slow down, let them know when you don’t know what they mean, ask them to give you a minute to write it down and even ask them how to spell it
• “How can I help?”, and, “Are you ok?” can be the hardest questions for us to answer. Felecia recommends having 2 or 3 answers ready to answer those questions. 
• So much is required of us in the hard season of the NICU and then transitioning to home after the NICU. It’s okay to receive help, especially when someone is offering!

You can learn more about Felecia at www.feleciahatcher.com, as well as on Instagram, LinkedIn and at blackambitionprize.com.

Let's keep in touch:
You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

Beth Simonton is the proud mother of 3 children, the youngest of which is her NICU baby. She is also the co-founder and CEO of ICU baby and believes that every parent should have the opportunity to be at their baby’s hospital bedside and she is passionate about removing barriers for NICU parents to be able to accomplish that.

Quick Notes from the Episode:

• When a child comes home from the hospital after a NICU stay, you may expect it to be all done, but you’re really just beginning the next chapter.
• Sometimes you’re ready for the day, prepared for the appointments, fully stocked and loaded, but something happens and you’re still caught off guard; know that there will be hard days, and it’s ok. The next day you can start over. 
• The NICU experience is traumatic, and you carry that with you once you’re home, especially in those first months.
• A good cry in the car is totally normal! I know I can relate to that!
• Many times, the Pediatrician is the first new member of your child’s care team after the NICU, and they are also managing all of your specialists who send them reports.
• When you’re meeting with your Pediatrician take a list of questions! Leverage those meetings, think of that time as your time to “ask an Expert”.
• If the Pediatrician doesn’t know, they can typically connect you with someone who does.
• You can learn more about Beth and ICU baby at www.icubaby.org, as well as on Instagram, Facebook and LinkedIn. Click here for opportunities to volunteer!

Let's keep in touch:
 You can find us on Instagram, Facebook, and our website, www.nicualumni.org.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.

Ali Dunn is the founder of Me Two Books and the author of four children’s books: I Was a Preemie Just Like You, I Needed the NICU Just Like You,  One of Two, a Twin Story about Individuality, and The Career Explorer: An Introduction to Career Development and STEAM Careers. She is also the creator of two e-courses about Career Exploration. Ali is the chief mom officer of identical twins born at 28 weeks. You can learn more about her books at metwobooks.com and connect with her on her blog, Twitter, Instagram or Facebook.

Ali talks about experiencing the NICU with identical twins who, like many multiples in the NICU, did not have identical journeys. She shares what it was like to have them discharged on different days.

Quick Notes from the Episode:

• If you’re a parent of multiples in the NICU, consider the possibility that they may not come home at the same time. It could be helpful to make a loose plan for how to manage being home but also still in the NICU.
• Your child’s Pediatrician will be one of the main medical professionals you interact with, especially when you first come home, so it’s important to ensure that they have some extra knowledge about what NICU families may have concerns about
• A great way to work through your experience during and after the NICU is to write and journal your thoughts
• Reading to your child in the NICU and once you’re home is a sweet way to bond and connect
• Ali wrote a special note to coincide with this episode and you can read it here.

You can also support our mission and help create brighter futures for babies that have graduated from the NICU (who we affectionately refer to as NICU Alumni) and their families by donating here.

The purpose of this podcast is for entertainment only and should not be viewed as medical advice.