My micro preemie turns 10 today!
Each year her birthday hits me in a different way. I cried the majority of the day on her 1st birthday. Her 2nd through 4th birthdays seemed a lot more full of fun and games as far as I can remember but we did not have parties. Her 5th birthday was also very emotional. Her 6th and 7th were slightly laid back and her 8th and 9th were filled with fear of COVID. And here we are today… her 10th birthday.
Joy was born at 23 weeks gestation, weighing only 1 pound and 4 ounces. She was just 11 ¼ inches long. This was not a surprise. We were well aware of the fact that she would be born early. In fact, we were told a number of times that she would not survive because she would be born before viability because of my advanced case of placenta percreta. I hemorrhaged for the first of four times at 17 weeks pregnant and that sent me on a dark path both in and out (mostly in) the hospital trying to not only survive, but also save my baby.
I did not know she was a girl until after the second hemorrhage almost took my life. I was 19 weeks pregnant. After many units of blood and an ultrasound, the technician said “your daughter is perfect and other than an accelerated heartbeat, she seems to be unaware that you almost lost your life and hers too”.
1- I am having a girl! After 3 boys!
2- I need to do everything in my power to keep her unaware and alive.
I did that.
It was not easy.
There was a lot of pain (both physical and emotional), two more hemorrhages, over 40 units of blood in total, time away from my boys, a constant fear of death and my boys losing their mother, and a three-hour surgery where my placenta needed to be surgically separated from both my bowels and bladder (including a hysterectomy) that I’m told is a miracle that I survived because of all of the blood loss. This is just what happened in the months leading up to Joy’s early delivery.
My poor baby girl spent 121 days in the NICU fighting for her own life after I was able to save us both. She experienced more medical interventions in four months than most healthy adults will experience throughout their entire life. She had dozens of blood transfusions, a hole near her heart, feeding tubes and breathing tubes for months, and several infections- one that nearly took her life and made us realize how dangerous tiny viruses and bacteria are for compromised preterm babies. This was just during her time in the NICU.
Her discharge was a welcomed step in the right direction but did not make life easier. Joy came home on oxygen and that required a lot of work for us all. At first she had a daily visiting nurse, then it was every two days and was weaned to weekly visits by the time she was 6 months post discharge. She continued to stop breathing, choke and aspirate so I had to move into the nursery for 8 months so that I could always be there when one of these things happened. They happened many times. I got very good at noticing her behavior before (or at the beginning) of an episode so I could use my hospital grade suction to go down her nose and throat to help clear her and then flip her over and massage her to stimulate her breathing again. It scared me to death every time and is why I did not leave her side- ever. In fact, if I had to do something without her, I would have her former NICU nurse come to the house to babysit her.
Joy was rehospitalized for the first time at 9 months old with pneumonia that began as a common cold she picked up from a cousin. There is no such thing as a common cold for a micro preemie. These infections settle in their lower respiratory tract and become pneumonia within days. This almost took her life again because after spending two weeks in the PICU (pediatric intensive care unit) she spiked a fever and began to turn blue- the day before we were going home no less. It turns out that Joy picked up the Rhinovirus (another “common cold”) from a nurse who was caring for her. She had just recovered from the Human metapneumovirus (another “common cold”) and this secondary respiratory virus back to back with the previous one was too much for her to handle and she was back on full breathing assistance again. This hospital stay was a few days short of 4 weeks. Similar infections caused her to have pneumonia a total of 8 times in 6 years. That is insane but the reality of a micro preemie’s life after the NICU. Besides visiting nurses, Joy had daily OT, PT, and other services in our home because the world was too full of germs for her frail and battered lungs to handle.
This was our life for about three years. Joy’s three big brothers would have to change their clothes and scrub their bodies after returning from school or sports. They were never able to have playdates in our home since we could not risk one child entering with a “common cold” or “just a runny nose” as some parents with healthy children would say. We did not participate or attend indoor events for years and had to limit visitors to our house to keep away the respiratory germs that could put Joy back in the hospital and possibly take her life. I will not get into the emotional toll we all have paid for this but I will say that the boys experienced the most of it. I thank God every day that they had each other to play with.
Although Joy’s lungs have made improvements, she is left with a great deal of scar tissue on both lungs due to the length of time the breathing tube was pushing her lungs open and shut to keep her alive as she and her lungs were growing. This has caused her to have a lung condition called Bronchopulmonary Dysplasia. In summary, her lungs are mostly scar tissue and scar tissue cannot properly expel mucus so every respiratory infection is dangerous for her because it can turn into a fatal pneumonia. I would rather my family have the most disgusting stomach bug that requires clean-up of all types of vomit and diarrhea than for anyone to bring a cold into our home. Not many moms say that. Joy still gets very short winded, wheezes when she laughs and requires inhaled steroids twice a day to keep her lung inflammation down in case she catches a cold- but she is a rock star who loves to play soccer and dance. Her recital is this weekend. She also loves to draw and sing.
There is not enough time to share our entire pregnancy story in this blog post. You can read more about our journey in other posts on my website or in my books. I am writing today to share that Joy’s birthday is not just another day for me. Each birthday is a MONUMENTAL day that I never dreamed of when I was pregnant with her or being told she would never walk or live a “normal” life while she was in the NICU.
Joy lives her best life every day and it is normal for her and our family.
She is unique in so many ways. Her difficult beginning will not stop her from doing anything and only be the driving force behind her successes.
It has been a long 10 years for us all. I am so thankful that she will not remember her time in the NICU or multiple residences in the PICU. She barely remembers her interventions other than the speech and OT that outlasted the rest.
I will never forget all of the prayers said for Joy, people who helped us by cooking, taking care of my boys, and being a friend to our family in our time of need. We were in need for a long time. Our family is still healing and growing every day.
So how will we spend Joy’s 10th birthday?
Well… Joy had her FIRST EVERY friend birthday party last weekend at a local pottery store where she had 15 girls from school and dance together to celebrate her. It was very special. We were never able to do that for her due to her lungs and the threat of her catching a cold. Although the fear of COVID 19 is very much in the front of our minds, we were able to safely give her a long awaited birthday party to celebrate her life.
I woke up at 5 am, the time she was born, to find her next to me in bed and I cried. I am crying now while I type this during my lunchtime at work.
This is a big day for us both.
We made it.
We will keep doing our best to honor how lucky we both are to be alive by helping NICU babies and families every chance we get.
We were both given a gift on May 12, 2012 and we will ALWAYS be grateful for that gift.
Happy 10th Birthday to my Joy 🙂
She is a superhero.