Today’s share post about comes from our Preemie Parent Mentor, Amy. You can connect with Amy here for micro-preemie parent support – she’s here to act as a listening ear or to help you through a challenging period in your micropreemie’s life.
I am a member of a world that I didn’t even know existed. I did not ask to become a member but I am forever grateful. I am a mom to a micro preemie who was born at 23 weeks gestation. I didn’t even know babies that small could survive. My son was born on April 16, 2011. If he had been born five years earlier, his chances of survival would have greatly decreased as the medical advancements in the preemie area are constantly improving.
My husband and I got pregnant after a series of miscarriages and fertility treatments. We conceived naturally while taking a “break” from fertility treatments and planning our fourth round of IVF. I found out I was pregnant on Chanukah, the Jewish holiday that commemorates a miracle that occurred in Jewish history. My husband and I were sure that this pregnancy was our “miracle.” Little did we know when I got the positive pregnancy test what a miracle our baby would be.
Although it doesn’t happen much anymore, I often replay the day it all began in my mind. I will never forget it. I am an attorney and had a long mediation that lasted late into the evening that day. I was 22 weeks pregnant. I came home from work and my husband wasn’t home. He was visiting his father in the hospital who was in ICU and would soon pass away two weeks after our son was born. I ate dinner that night and went to take my prenatal vitamins. All of the sudden, I felt water dripping down my leg. It wouldn’t stop. I called my doctor and he assured me that I was only 22 weeks pregnant and it was highly unlikely my water had broken. He told to go to the hospital just to be sure.
It was confirmed very quickly – my membranes had completely ruptured. My doctor looked at me and said how sorry he was. He told us that most likely our baby wouldn’t survive, and if he did, there was a good chance he would have serious physical and mental disabilities.
I spent nine days in the hospital, laying almost upside down with my water completely broken on strict bed rest….waiting. At 23 weeks and 2 days, I came down with a fever and was rushed into an emergency c-section. I remember waiting in the hallway to go in for the c-section with my husband and the Neonatologist who would attend the delivery. We were discussing our options regarding resuscitation and what we wanted to do – a conversation no parent ever dreams they will have.
Our first son was born that night weighing 1lb, 3oz. He took a quick breath upon delivery, was intubated, and sent straight to the NICU. We didn’t even have a name for him – we were in such a state of shock. We named him the following day, Justin. When he was born the doctor said they got him out “just in time” since I had an infection and he wouldn’t have survived much longer inside my uterus. Justin seemed like an appropriate name and we liked it.
I was able to go see Justin in the NICU the following day, which was my husband’s birthday. My mom stood beside me and I almost fell into her arms when I first laid eyes on him. He was the tiniest little being I’d ever seen. He was hooked up to so many wires. It was frightening. The first couple of weeks in the NICU were scary – so many ups and downs.
Justin really struggled with his premature lungs. He was ventilated for 11 weeks and was off and on several different types of ventilators before he was finally able to move on to CPAP and then to an oxygen canula. We dealt with many common micro preemie health issues and somehow avoided a few. Justin spent almost four months in the NICU until he came home on oxygen and an apnea monitor. I was by his side in the NICU every day. I pumped breast milk every three hours night and day. I was a bit compulsive as I felt so powerless and it was the only thing I felt I had some control over and was something I could do to help him.
When Justin was two weeks old, his grandpa Steve passed away in the hospital right down the street from the NICU. The night Grandpa Steve died, the nurses reported to us that Justin’s blood pressure dropped dangerously low. They were able to stabilize him and he improved a couple hours later. We traveled as a family from one hospital to another to see Justin all while experiencing heartbreaking grief. There’s no doubt there’s a part of Grandpa Steve in Justin. He has many of the same lovable and quirky mannerisms as him – it’s undeniable.
Those four months of our lives in the NICU are a bit of a blur now. Four years later, the experience is etched in my mind forever and has changed me to my core. Justin is doing great and has no permanent disabilities except for some slight developmental delays. Over the past few years we’ve done speech, occupational, and physical therapy at different times depending on his needs at the time. Sometimes it’s hard to have a child who needs therapies but I always remind myself of how very far we have come. Throughout our stay in the NICU, the doctors always told us worse case scenario and that was challenging to hear. I tried to stay in the day and take it one thing at a time. We didn’t know if our “miracle” baby would survive let alone thrive as a beautiful, curious, smart and sweet little boy whose magical energy is infectious. We now know first hand what a miracle looks like and we get to see him every single day.
We are eternally grateful.
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