Every year on November 1st, I try and think of some small, meaningful way to help others understand why prematurity and the families it affects is actually much closer to our lives than we may think.
One in ten babies is born prematurely, before 37 weeks gestation. That means that in a standard school classroom, at least two kids in there will have been born prematurely. When you are standing in line at the grocery store, someone in that line has been affected. And, when you have those large holiday gatherings, someone in your own circle has met prematurity head on. We have to change this statistic. We have to do better in this country and around the world.
This year, when I woke up on November 1st, I had tons of prematurity “facts” running through my head and I wanted to share them. I not only wanted to share them with families that I know who have experienced the prematurity journey, I also want to share them with those who do not know about prematurity. I want us to really ask ourselves what we can do to make a difference. I would love nothing more than in my lifetime, to hear that premature birth is a rare occurrence rather than a common one.
When my babies were born 8 years ago at 24 weeks, it turned our world upside down and inside out. Each day when I went in to see our babies, there was a process. There was a process for scrubbing in, pumping breast milk, and there was a process to even hold our fragile babies. It was mentally and physically exhausting and each day my heart felt as if pieces of it were being ripped from my chest. But there were also miracles. I witnessed eyes that were fused shut start to open, and watched carefully as nurses taught me how to care for our babies so that for a few minutes each day, I felt like a mom. I met medical professionals that quite honestly, I didn’t realize even existed. I needed awareness!
Throughout November, I will share one fact each day about prematurity to raise awareness. It is my hope that one day, prematurity in our country will only be a marker in history books, left to look back upon and celebrate how far we have come and how much we have achieved.
Did you know that according to March of Dimes, 1 in 10 babies are born before 37 weeks gestation in the US?
This means more than 380,000 babies are born prematurely each year! This year’s report card put out by March of Dimes shows an increase for the second year in a row of premature births. Texas received a “D”.
Did you know that a baby’s eyesight starts to develop around 16 weeks gestation but does not fully mature until up to a month after a baby is born at term (38 to 40 weeks). When a baby is born prematurely, they are at great risk of developing Retinopathy of Prematurity (ROP), a potentially blinding disorder for babies born at very low birth rates (under 2 1/2 pounds) in which the retina can detach from the back of the eye due to abnormal blood vessels that formed.
World-renowned singer, songwriter, and musician, Stevie Wonder fell victim to ROP which is what caused his blindness as an infant.
Babies born before 32 weeks are not able to regulate their body temperature so they are placed into temperature controlled beds known in the NICU as an isolette.
Usually, around 32 to 34 weeks, babies are ready to wear clothes for the first time. That means parents of babies like mine, that were born at 24 weeks, will have to wait about 8 to 10 weeks before they can dress their baby for the first time!
We waited 66 days before we heard the words “Lola is ready to wear clothes!”
Babies in the NICU are weighed in grams, breast milk/formula is measured by milliliters, and their diapers are weighed for urine output.
When babies are born prematurely, the number one question on a parents mind is “When will my baby come home?”
There is NO way for the medical team to predict this because every baby is so different but in general and on average, the Neonatologist will tell parents to expect to be there until their original due date. The earlier a baby is born, the likelihood that they will stay past the mother’s original due date increases.
Lola and Landry were born at 24 weeks and 5 days gestation. They were born on August 30th. Lola stayed until December 24th (1 week past my due date) and Landry stayed until January 7th (almost 3 weeks past my due date).
I vividly remember entering the NICU and meeting Lola and Landry’s nurses for the first time. Within minutes they were teaching us about the importance of observing our babies and understanding cues they might be giving us. Mike and I were taught right away about the numbers being displayed on their monitors and what the target ranges were for our babies. The staff explained that if those numbers went too far outside of those ranges it indicated stress. I remember one of our nurses gently lifting a flap of Landry’s isolette cover that was protecting him from light and noise in the NICU. It was at that moment that he extended his little hand straight out and I said: “Look, he is waving to me.” Our sweet nurse, in a very caring and loving way, explained that he was actually displaying a stress cue. She took my hand and showed me how to bring his hand and arm back to his chest to help calm him. It was THE BEST feeling to know that I had just calmed my baby for the first time!
I can recall a specific morning, about two weeks into our journey, that Lola’s heart rate was well above her target range. Her Neonatologist was providing the necessary medical intervention but it was suggested that I try something in the NICU called encircle holding. This is where you place one hand at the top of the baby’s head and the other cupping both of their feet to create a firm boundary. I was then encouraged to talk softly to Lola to see if that would help calm her. I have no idea why but the first story that popped into my head was “The little blue truck” by Alice Schertle. I watched as her heart rate went from the high 190’s to 180’s until it finally settled in around 145, her target heart rate. Talking to and telling Lola and Landry stories became a staple in the cares I did each day. I am still so thankful that I had staff that encouraged me to actively participate even on the days I was scared to even try.
Babies born prematurely are developing outside of the womb where gravity is working against them. In the first several weeks (usually until the baby reaches about 34 weeks and approximately 1600 grams) there are special positioning aides that are used. Some of these typical aides include:
- Gel pillow – minimizes cranial molding
- Snuggle Ups – promotes flexion and orientation to mid-line (hands to mouth)
- Bendy bumper – provides boundaries that the infant is used to having in the mother’s womb
- Dandle Roo – provides support around the baby’s entire body
- Freddie Frogs – supports an infant maintaining their position
- Prone Positioner – promotes proper muscle development
In the NICU, babies will have developmental therapists that ensure premature babies are getting the proper support. Mike and I felt so blessed to be in a NICU that had some incredibly amazing therapists. Each day, they would come in and make sure that both of our babies were being placed in or on the appropriate developmental aides. They spent time explaining why each developmental aid was so important. It was during these visits that I learned how important developmental therapy was going to be in achieving overall wellness for Lola and Landry.
** A special thank you to Kristen Taylor, OTR, CNT, NTMC ~ Senior Occupational Therapist, Certified Neonatal Therapist who was kind enough to provide us with our positioning facts.
Did you realize there are different levels of NICU’s? There are four levels of neonatal intensive care units which will provide different types of medical interventions.
Level I – Basic or primary care
• Well newborn nurseries
Level II – Special Care Nursery
• Provide care to neonates > 32 weeks gestational age and weigh > 1,500 g.
• Provide continuous airway pressure (CPAP)
• Provide mechanical ventilation for up to 24 hours
• Provide convalescent care to neonates that have been in a tertiary neonatal unit
Level III – Neonatal Intensive Care
• Provide comprehensive care for neonates > 32 weeks gestation and weigh >1,500 g
• Provide high-frequency ventilation and inhaled nitric oxide
• Onsite accessibility to pediatric subspecialists
Level IV – Regionalized Neonatal Intensive Care Unit
• Provide level III care
• Provide ECMO therapy
• Repair complex cardiac abnormalities requiring cardiopulmonary bypass
Lola and Landry remained at a level III NICU for the duration of their NICU journey, however, there were discussions of transferring them to a level IV for several different medical complications like their large PDA’s, a grade IV brain bleed that possibly needed a shunt and additional respiratory support for Lola if we could not get her of the high-frequency ventilator.
A common problem with babies born prematurely is a heart problem known as Patent Ductus Arteriosus (PDA). This is a condition in which abnormal blood flow occurs between the two main arteries of the heart. Statistics show that PDA occurs more often in premature infants ( 8 of every 1000 births) whereas it is less common in full-term babies (2 of every 1000 births). Both of our micro preemies had moderate to large PDA’s.
PDA’s are sometimes treated with medicine, however, if the PDA continues to cause additional issues for the baby, a procedure called PDA ligation will need to be done to close the PDA, prevent further complications, and reverse the effects of increased blood volume. For PDA’s that close late (after NICU discharge) closure via a cardiac catheterization (using coil embolization) can be done if needed.
Lola and Landry both had moderate PDA’s that did not require surgical intervention. They were both discharged to a cardiologist who continued to monitor their PDA’s. Eight months post NICU, both of their PDA’s finally closed.
I am certain that talks about my babies PDA’s were discussed long before my first memory but the day it really “sank in” was a couple of months into our NICU journey. I came in promptly at 8:15 because that is when Lola and Landry’s Neonatologist rounded on them and she would give me a full report of the last 24 hours and what the goals for the day were. On this particular day, she was firm in her report. Lola had been on a high-frequency ventilator for quite some time and was still not making any good progress. We had not been able to ween her settings at all and her lung x-rays looked really bad. As Lola’s doctor began to talk, my heart picked up its pace and my hands began to sweat. She mentioned in that conversation that it may be Lola’s PDA that is contributing to them not being able to ween her settings down. She also went on to say that if the high ventilator settings continued and the medication they were trying did not improve her situation, we may be looking at transferring her to a NICU that could perform a heart surgery known as PDA ligation. I remember being terrified to think that a baby that small, undergoing any type of surgery, much less something for her heart, was completely overwhelming. Thankfully, Lola did not have to need PDA ligation surgery, but many pre-term babies are not this fortunate and PDA ligation is a common procedure for these infants.
** A special thank you to Dr. Yvette Johnson, MD, MPH, Medical Director, N.E.S.T. Follow-Up Center, Neonatal-Perinatal Medicine for reviewing and editing today’s facts.
I think a lot about how completely different my pregnancies were. I carried our first born until I was 42 weeks and had to be induced. It was the epitome of a perfect pregnancy…I worked out, I didn’t have gestational diabetes or high blood pressure. My body performed exactly as it was supposed to.
With Lola and Landry, we struggled in every aspect. We struggled to even conceive, I ended up with a significant blood clot in my uterus, we lost Lola’s heartbeat and then without any warning, I found myself in labor and delivery.
A full NICU team was standing in my room preparing to whisk my babies away to the NICU where they would stay for 118 days and 140 days respectively. The question of “what did I do to cause this” is what so many mothers of preterm infants ask over and over again. Many of us know what causes our babies to be born early and others of us are never given that answer…it is just something that happens.
As a mom that delivered at 24 weeks, I chased the “why” this happened for 4 years until my OB/GYN said that I was in the 40% that has no exact cause. Here are some interesting statistics on preterm labor…
- Premature labor occurs in about 12% of all pregnancies.
- In 4 out of 10 preterm labor cases, there is not an exact known cause.
- 1 out of every 4 preterm births is a planned c-section because the mother might have severe medical problems that need to be addressed or because their baby is not developing properly.
- The health conditions of the mother are also a factor: infections, having high blood pressure, or having a high fever during a pregnancy can all create preterm labor.
- Low or high maternal age is directly associated with preterm labor.
Low Birth Weight – less than 2500 grams (about 5 1/2 lbs), Very Low Birth Weight (VLBW) – less than 1500 grams (about 3 lbs 5 oz), Extremely Low Birth Weight (ELBW) – less than 1000 grams (about 2 lbs 3 oz).
I delivered micro-preemie twins weighing 1 pound, 9 ounces and 1 pound 10 ounces which falls into the extremely low birth weight (elbw) category. It is hard to put into words how tiny these babies were. Their footprints were the size of my thumbs, their entire hand would hold my finger, and their weight was the equivalent of a large honey crisp apple. It was a true miracle to watch them transform from such small and frail babies to being nearly 8 pounds at discharge!
I don’t think I will ever forget the day that I arrived to the NICU and I was able to hold our daughter for the first time. It was an impromptu plan that was a pivotal moment for me as a NICU mom and I truly believe what gave me the burning desire to learn how to advocate for these very small babies we had.
We were told in the beginning that it would probably be at least a month before we were able to hold her due to her being so unstable. I was truly devastated when I found out it would be so long before I held either one of them. I also didn’t realize that when the NICU medical team said “hold” they meant a true skin to skin hold known in the NICU as “Kangaroo Care.” Can I just say that still to this day, I still have not felt anything as empowering as holding a 1 pound, 9 ounce baby on my chest and being told that from that day forward, as long as she was medically stable, this is where both of our babies would sleep the best, develop the best, grow the best and give me the most important job in the world!
As soon as a preterm infant is medically stable, the NICU medical team counts on the parents of these babies to begin “kangaroo care”. Kangaroo care (also known as skin to skin) is when a baby is placed on their mother or father’s chest wearing nothing but their diaper. Benefits are maximized when these babies are held for a minimum of one hour. The staff will encourage the hold until the baby either becomes unstable or the parent needs to put them back. There have actually been studies that have shown that when a mother holds her baby skin to skin, it will help increase her milk supply, her body temperature will rise if her baby is too cold just the same as her body temperature will lower if her baby is too warm.
Kangaroo Care is magic – medicine that only the parents can provide!
According to the World Health Organization (WHO), prematurity is not just a lower-income country problem. While more than 60% of preterm births occur in Africa and South Asia, higher-income countries, like the United States, are still listed in the Top 10 Countries in the WORLD with the greatest number of preterm births.
Bonding with a baby in the NICU can feel difficult and overwhelming. It is, however, one of the biggest questions on a parent’s mind. Did you know that there are many ways the NICU encourages bonding? Some of the ways the NICU team encourages bonding is:
- Holding skin to skin (known in the NICU as kangaroo care)
- Reading and singing – These are both great for brain development
- Bathing – Developmental bathing may be an option
- Feeding – Pumping, breastfeeding or bottle feed
- Provide daily cares – includes diaper changes, taking the babies temperature, etc.
- Infant massage – ask a developmental NICU therapist to teach you how to do this
- Scent sharing – mom is encouraged to scent a cloth for 12 hours and then leave it with her baby so they can continue to smell her scent and mom can smell her baby.
It is important for parents of premature infants to remember that bonding is a lifelong process. I am so thankful for our NICU medical team that taught me this. I remember my husband pushing me back in a wheelchair to my hospital room due to an emergency c-section after our first visit to see our babies. With tears rolling down my face, I couldn’t help but focus on all of the barriers I saw when we were in there…the isolettes which enclosed them in their “new home”, the ventilators, all of the medical pumps. I immediately became overwhelmed with wondering how we could possibly bond with these medically fragile babies. However, each day we went to visit, someone in the unit would teach us a way that we could bond with our babies. Each day, I drew closer and closer to them by practicing each and every one of the recommendations above. It is truly how I survived the journey. Our twins are now 8 years old but every night, our bedtime routine still consists of several of the techniques above.
Please ask the NICU medical team on how you can start bonding with your baby this week! It is important to note that all of these suggestions will depend on where a baby is medically so while all of these options may not be possible today, as your baby grows and stabilizes, the NICU team will help you add more of these bonding options to your day.
Natalie Gordon is a full-time Program Facilitator for NICU Helping Hands in Fort Worth, Texas. In 2013, she began working directly with families during their stay in both the antepartum unit and the NICU at Baylor Scott and White All Saints Medical Center, providing bedside support on a daily basis, weekly evening support, educational sessions, and bereavement assistance including materials as needed. Currently, Natalie serves families at Cook Children’s Medical Center in both the NICU and the NEST Clinic, which provides follow up care for NICU graduates.
Since the start of her career with NICU Helping Hands, Natalie has worked alongside NICU staff and administrators to improve the services to families in their care. In addition to the services she provides to local families in the DFW metroplex, Natalie has spoken at various local and national conferences about the parent experience in the NICU. She is part of the National Speaker’s Bureau for the Preemie Parent Alliance.
Natalie has been married to her husband for 15 years and is the mother of Alexis, age 15, and Lola and Landry who were born in 2009 at just 24 weeks gestation. They are now 8 years old!