Parenting Mighty Littles: Parenting from the NICU and Beyond

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When her twins were born at 25 weeks, Lelis simply could not see how they would survive such extreme prematurity. But they did.

In this episode, we hear about her twins’ NICU journey: sepsis, NEC, ROP, BPD — all of the common complications of extreme prematurity. Now, her sons are grown, and she has spent the last nearly 15 years consulting in health advocacy to improve the outcomes of our most fragile babies.

The three things she would say to NICU parents now:

1. You are not alone.

2. Seek out peer support, looking beyond the walls of the hospital.

3. You, as a parent, are important to your baby. You are essential and you have a right to be at the bedside.

Join us for this remarkable conversation with Lelis Vernon and look for the next podcast where she is back talking about her health advocacy work.

When you have a winter baby (I had three!), you can not help but wonder how you can protect your infant from viruses in those first six months. I break it down into two parts:

Part 1: Ways to protect yourself and your newborn during cold and flu season.

My top 5 ways to protect littles from respiratory viral illnesses.

Part 2: What about visitors and crowds?

What about friends & family?

Whether it is grandparents, in-laws, best friends, neighbors, or distant cousins, everyone loves a new baby. Visitors can come out of the woodwork. Having a plan for how YOU want to handle visitors is vital!

Deciding how you want to handle visitors is one of the first “parenting” decisions you will make. And EVERYONE has an opinion — which they will happily share with you. I’ve heard it all. Families who don’t have visitors for 2-3 months after they bring home baby. Families who invite the whole extended family over when their baby is a week old. Families who hang poems outside their front door kindly asking people to go away in a rhyming Dr. Seuss like poem.

Honestly, this decision should be made by what YOU need, as parents. And everyone’s circumstances are different. There are no correct answers. Listen for some of the questions I encourage you to ask yourself when deciding how to handle visitors.

Jimmie and Alexis tell us their RSV story, sharing what they wish they had known before their daughter was hospitalized with RSV.

Check out www.knowingrsv.com for more information and to see more of their story.

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Website: www.mightylittles.com

Madeline Michalik’s first pregnancy ended in unexplained premature birth at 25 weeks. She was told that her lower back pain was normal, and it was not investigated. Shortly thereafter, she was admitted to the labor and delivery unit, dilated to 3-4 cm at 25 weeks. She delivered her daughter 5 days later, at 25 weeks, and spent 91 days in the NICU. During her second pregnancy, her back pain returned and further investigation into the cause identified a shortened cervix. She underwent an emergency cerclage, and was diagnosed with an incompetent cervix. She went on to deliver her second pregnancy full-term. Despite the happy ending of her premature birth and ultimate term delivery of her second pregnancy, the diagnosis “incompetent cervix” stayed with her. The moment the OB called her cervix “incompetent” never left her.

Madeline went on to get a master’s in Communication, writing her thesis on the language around the medical term “incompetent cervix”. In this episode, we talk about both her experience with preterm labor and a NICU stay for her daughter, and her research into medical terminology specifically around “incompetent cervix”.

Join us as we discuss maternal guilt, the importance of medical language, and receive hope that there is life after the NICU.

I will never forget the moment I found out I was losing my first pregnancy. I was 6-8 weeks pregnant. I was thrilled to be pregnant. I had been having spotting for a few days, which all books told me could be normal. I was on call in the NICU, taking care of other people’s babies, and the bleeding was getting worse. I found some time to head over to Labor and Delivery, and one of the High-Risk OBs did an ultrasound. There was not a baby. I was pregnant. There is a placenta and a sac. But no fetal pole or heartbeat. I was told it was a “chemical pregnancy”.

A chemical pregnancy — what? I certainly felt pregnant. Blood tests confirmed pregnancy hormones in my system. I was in love with the idea of being pregnant, grateful for this life growing in me, and anticipating the new role of mom I was gearing up for.

Chemical pregnancy is the medical term. A term that suggests there is no baby, no pregnancy, nothing to grieve. But there I was, taking care of other people’s babies, as I was facing the loss of my own. I hate that term - chemical pregnancy. It is a loss. I felt a loss. I imagined who that child was, how I would change as I became a mother, and dreamed of what was to be. It was an early pregnancy loss.

Putting on a brave face while having a miscarriage.

Medical language has long used terminology and language that places guilt and shame on the patient. This is particularly pervasive in the world of maternal and infant care. Women are inundated with phrases like incompetent cervix, geriatric pregnancy, spontaneous abortion. Medical phrases that demean their body and place blame on the woman.

This type of shaming medical terminology can be devastating. The language places blame on the patient, as if they are choosing this outcome. Take the medical term “habitual aborter” for example. While it may seem antiquated to us, it still exists in medical writings and texts. A woman surviving the loss of a pregnancy is going through something emotionally painful, and then we label her with the diagnosis of habitual aborter. This diagnosis all but blames her for what she is going through as if she wanted it. Instead, using descriptive medical diagnoses like “recurrent early pregnancy loss” describes what is medically happening without introducing blame and shame for the women.

Here are a few more examples of old medical terminology related to pregnancy and delivery, and more appropriate descriptive terms:

Incompetent cervix —————Early Cervical Opening

Geriatric Pregnancy ————— 35+ Pregnancy

Spontaneous Abortion ————— Pregnancy Loss

Failure to Progress ————— Slowed Labor

Headed back for a C-section with my first baby, after 30 hours of labor and 4 hours of pushing — feeling like I failed.

This problem with terminology is not just limited to women and pregnancy. We see it with judgments related to how a woman is mothering, as well as infants and children.

Funny Looking Kid (FLK) ————— Multiple Congenital Anomalies

Wimpy White Boy —————— Premature Male Infant

Failure to Thrive —————Slow Growth

Breast Is Best ————— Fed is Best

Stay At Home Mom ————— Full Time Care Giver

Premature Male Infant

And finally, we enter into terminology that is even more personal. Labels like disabled, handicapped, and special needs are often used interchangeably. However, people living with a disability and their family members often have strong opinions about what words feel best to them. It is our responsibility to be respectful of the options, and ask them what terms they prefer.

Here are a few suggestions about how to approach words and labels.

1. Be mindful of the impact language has.

2. Seek to use terminology that describes WHAT is happening instead of outdated language placing blame and/or shame on the patient.

3. Use narrative medical language in charting and notes, actively using patient voices.

4. Seek to understand how each diagnosis impacts the individual.

Gretchen is back with Mighty Littles for the second half of her story. Last week, we talked about her birth story; delivering her son by emergency C-section at 23 weeks.

This week, Gretchen talks about her son’s NICU stay and her life after the NICU. Her son Alex was born weighting 580g, and was 11 inches long. She was quoted a 3% chance of survival and 1% chance that he would be “normal”. And yet, Alex had other plans. His biggest issues in the NICU were related to anemia and blood infections.

Gretchen and I also talk about the effect the NICU had on her relationship with Alex’s dad, what is like to coparent during a pandemic, and the guilt that some parents can have when the outcome of prematurity is better than expected.

Gretchen and her son Alex.

Birth has a lot of unknowns. When exactly will you go into labor? What do intense contractions really feel like? Is birth different if my baby is premature? What does it mean for me and my baby if I know my baby is going to go to the NICU?

Birth stories are important. Hearing real birth stories is an important step in feeling prepared for your own birth, and equally important, healing from a delivery that didn’t go as planned. While every birth is unique and different, there are commonalities that births share - and through listening to stories, you can feel empowered and connected with other mothers.

Here at Mighty Littles, we want to share birth stories from mothers whose infants have gone to the NICU, normalizing this experience, and sharing stories that help you with your healing. On this episode, Gretchen relays her birth story, discussing what happened when she went into labor at 22 weeks, away from home, away from family while on a training trip for her job with the coast guard.

Tiny footprint, demonstrating how little you need to be dilated for a breech premature infant to start delivering through the cervix.