Each year around this time of the month, I become very sensitive and reflective. Every day (and not just on World Prematurity Awareness Day) I count my blessings knowing that we have a very happy and for the most part, healthy child.
This was not always the reality though.
Little One was born on November 11th, 2008. She was supposed to be due in February of 2009.
She was born at 28 weeks, 4 days, weighing 980 grams.
Prematurity Awareness is important to me
Prior to giving birth to Little One, I had no awareness of anything related to premature births and all the realities that go with having a preemie in the NICU. Some may refer to my passion for bringing awareness to premature births, high risk pregnancies, and life in the NICU as my “shtick”. I actually prefer to call it lending support to something important to me.
When you have a baby so tiny and so fragile that you don’t know if they will survive one day to the next, it’s hard not to feel passionately about supporting others who are going through what your family has experienced.
Back in 2008, I had the support from fellow preemie parents as well as from the staff at Mount Sinai. Though seven years isn’t really a long time ago, things have certainly changed in that time. I’ve found more and more preemie parent groups and communities online that weren’t in place when I gave birth to Little One. Truth be told, those early days in the NICU for me felt like my loneliest days. I knew that I was surrounded by people who cared and were trying to help, but inside I felt terrified. I knew the doctors, nurses, RTs and everyone else were doing an amazing job and were dedicated to having Little One thrive and grow, and be able to finally come home with us. Still, despite my faith in God and in modern medicine, there was always that “what if?” that floated around in my thoughts. 
Having a preemie is an emotional roller-coaster
I realize that having a baby in general is an emotional roller-coaster and that parents have those “what if?” thoughts even with a healthy baby. The one big difference is that there are so many other things to consider when you do have a preemie. For example, the doctors told my parents that they could not visit or touch Little One unless they quit smoking because her lungs were so fragile. We also had to tell people to wash their hands and change out of their “street clothes”. For many, it seemed a bit extreme and that we were going a bit overboard, but if you realize how fragile a preemie’s immune system is, you’ll recognize the importance of all those precautions.
For the first few months that Little One was home with us, everyone was excited to meet her. We were advised to keep visits to a minimum because it also happened to be RSV season. Around this time, parents all over Facebook were arguing over vaccination and whether or not to vaccinate their children.
After a lot of research and talking to the doctors and nurses, I learned that passive transfer of maternal antibodies occurs after the 28th week of gestation. This means that premature infants born after 28 weeks of gestation will have maternally derived antibodies, but at lower concentrations and for a shorter duration than full-term newborns. Premature infants of less than 28 weeks gestation are not expected to have significant amounts of maternal antibody. This means that premature infants may experience increased frequency and severity of vaccine preventable illnesses and should be protected from vaccine preventable disease through timely immunization. In a nutshell, preemies may get sick with vaccine preventable illnesses easier and more frequently than babies born at term. These illnesses can kill a baby born that prematurely.
This also meant not being able to join Moms and Tots groups or story time, or attend public events until Little One was a bit older and a bit bigger. I was on auto-pilot back then and it wasn’t until Little One was older that I realized how isolated I actually felt back then.
I remember the odd looks on people’s faces when I said no to them when they asked if they could hold Little One. We brought her home when she was 72 days old (chronological age). She was still so tiny. Eventually, when she was bigger and healthier, people got to hold her and cuddle with her. It was just in the early days her immune system was still so fragile. I’d like to think that most people understood. I know for some we were considered a bit extreme and needed to be more laissez-faire. There’s absolutely nothing laissez-faire about parenting when you have gone through life in the NICU and knowing the reality of how quickly your child’s health can turn.
Feeling inadequate
When I got pregnant, I had a specific birthing plan. I wanted a midwife and I wanted a home water birth. For obvious reasons, with a high risk pregnancy and ending up on bed rest for several weeks (and still ending up delivering at 28 weeks), I was unable to have the birthing plan I wanted. At that point, I was happy to know that the specialists at Mount Sinai were the best at what they did and that when baby decided to arrive, everyone would be ready.
Apart from not having the birthing plan I wanted, I also did not get to exclusively breastfeed. That was the one thing I really wanted for Little One. I didn’t want her to ever take a bottle or have formula. I quickly discovered that what I wanted wasn’t really practical for my preemie. I pumped and pumped and froze my milk so the nurses could fortify Little One’s feed. Initially, she was fed via NG-Tube. Later on she was able to take her fortified breast milk from a bottle. In the beginning, I was not able to nurse her because nursing consumed too much energy for a baby so little. She also didn’t have the suck-swallow-breathe technique perfected and would send all the alarms off when she would de-sat. It was stressful times in the beginning.
During this time, many of my peers were having babies too. All over Facebook there were posts from moms who were adamant that breastfeeding babies was the best for babies and there were posts about how terrible it was to formula feed babies. Though I wholeheartedly agree that breastfeeding babies is best for babies (for passive and long-lasting immunity, bond between mother and baby, etc), I also knew that preemies did require some fortification in their feed to help them grow and thrive. I nursed Little One until she was almost two years old. She self-weaned just shy of her second birthday.
One of the things we learned in the NICU was that “the preemie digestive tract is not yet fully developed. Feeding the immature gut can cause bloating, distention, vomiting, and in severe cases Necrotizing Enterocolitis (NEC), a devastating diagnosis where the intestines and digestive tract becomes inflamed and tissue begins to die.” (source: http://handtohold.org/resources/helpful-articles/nourishing-your-premature-baby-in-the-nicu/)
I made sure to pump shortly after delivering Little One so that she could get the colostrum that she needed. The medical team told me that the first milk is so important for newborns and has protective properties to protect the preemie’s gut. This said, though breast milk is the best source of nutrition for a preemie, it’s not enough. As much as I was opposed to having to fortify Little One’s breast milk, after much reading of my own and discussing with the doctors and nurses, I realized that this was in my child’s benefit.
The levels of protein, iron, calcium, phosphorus, and Vitamin D found in human milk alone will not be adequate to make up for the deficits created by the preterm birth. In order to meet these needs, the human milk must be fortified.” (source same as above)
Though I pumped religiously, froze breast milk for nurses to give to Little One when I wasn’t in the hospital, and though I nursed her as much as I was able to (the nurses let me nurse her twice a day because she got too tired), even though I knew it wasn’t aimed at me, I was hurt by the words on Facebook posts I saw on people’s timelines about how mothers who gave their babies a bottle or mothers who gave their babies formula were terrible mothers. As much as I am pro-breastfeeding, I couldn’t help but feel awful for all the moms out there who couldn’t breastfeed their babies. I knew moms whose babies would not latch or who rejected the breast. I knew moms with low breast milk production. This does not make them terrible or inadequate moms. Having a new baby (especially one who is sick and in the NICU) is stressful enough and seeing all of this on Facebook actually made me avoid Facebook. Plus, I was too busy with life in the NICU and taking care of my newborn preemie. I only went on to post quick updates and photos for my family and friends who were wondering about how Little One was doing.
Other realities of taking a preemie home from the hospital
There were the weekly visits to Sick Kids Hospital in Toronto, and the Preemie Pathways nurse’s weekly visits to our home. There were also regular visits to Sudbury for Little One at the Neonatal Follow-Up Clinic with her team that included her Pediatrician, Occupational Therapist, Physiotherapist and Speech Language Pathologist.
These are all things I never even would have thought about before getting pregnant. It’s not something most parents think they would have to know about. I used to think that one just conceived, had a pregnancy that lasted nine months, had a baby. It was such a shocking awakening for me.
I know we survived and that Little One is now thriving and is a happy, intelligent, funny, sweet seven year old. I just want to impart some of our experiences with parents who have premature babies and let them know they are not alone. I really did feel alone at times.
Some people often wonder why every November 17th I speak and write about World Prematurity Day and preemie awareness. “Little One is seven years old now. She’s fine now. There’s no reason you should still be rehashing her early days and how you felt about her being a preemie.”
If I can help spread the word about Prematurity Awareness and Prematurity Awareness Day through writing blog posts about our experience, sharing on social media, supporting families in person or online, lending support in form of fundraising, hosting a benefit concert or by making donations on behalf of our family, that’s the least I can do. I know I really appreciated all the support I received from friends, family, the doctors, nurses, and staff at Mount Sinai Hospital, the Linden Fund, and my fellow preemie parents with babies who were in the NICU with Little One.
Thank you for sharing. We were fortunate enough not to experience prematurity or illness in our two children when they were babies. Your story has made me more aware of what so many other parents experience. I hope it will make me more understanding and supportive if I meet anyone going through those challenges.
Thanks for your story. I´m mom of a preemie as well. Our babygirl was born this year in june. In 27+2 week of pregnancy. It was incredibly hard time. There was high risk to have an OP because of PDA and other things you mentioned. We are lucky, because nothing bad happened and she seems to be healthy and her development is not delayed. I´m glad to read a story with happy end. Thanks for it.
Oh! Look how small your little one was. These photos are precious. I’m so happy to see she is healthy and happy now. So many babies are born prematurely. Supporting families when they are born early is so important.
Ladena, every time I look at these photos, I keep thinking, “My goodness, was she ever tiny!?” Without a doubt, that was the scariest time of my life. Now she’s a feisty, spirited, determined child! Haha!
I cannot even imagine.Thanks for sharing the intimate details. Again, you are so strong. I cannot even imagine.
Ahh! Thanks so much, Kyla! There were times that were definitely challenging in the early days. Thankfully she is doing well now 🙂
So thankful that the NICU was able to care for LO when she was truly little! She’s a brilliant young girl and I love hearing what she’s up to next on FB. <3 what a crazy week for you, to have both the birth of your daughter and awareness week happening just days from each other, wow!
Thank you for sharing your powerful story. I am so glad that you got the support you needed and that you now have a happy and healthy 7 year old.
Thanks so much, Merry! To be honest, my online community is what helped keep me sane during this time. So much support 🙂
Thank you so much for sharing your story! It’s shared stories that help people to understand. I’m so happy that she made it through those difficult early days.!
So true, Heather! It really does help knowing that others have gone through similar experiences or are going through similar experiences.
Bless her heart and bless yours. I cannot even imagine what it is like to have a baby born that early. Good on you for offering those support who are going through similar experience as you went through.
Thanks so much, Janie!
Little One truly was a tiny, little one when she first arrived! I would have felt terrified too. I’m so thankful that our medical advances make lives for preemies so much better (and even possible).
So true, Julie! There is a woman I know in her 60s who was a preemie and she keeps telling me about how back then, the odds of survival for premature babies was very low. Amazing how much our medical advances have changed and have improved the lives of preemies. It really is incredible.
Both of our boys were premature one by 7 weeks and one at 5 weeks. You worry so much but the thing is the doctors and nurses are there to help your child and you through it all. Be patient and listen. Visit your child and what they allow you to do with your child do it. As sometimes you can not hold them because of all the things that are on them. But if you can go see them talk to them. They will hear your voice.