I remember the day vividly, the day I found out my friend Holly was giving birth to her son Madden at 26 weeks. Our Instagram community rallied around her and her family, sending encouragement and praying harder than we would imagine praying for someone most of us had never met in person. I am just so thankful for Holly’s willingness to share her story with us today, about what it’s like to have a micro-preemie, a term used micro preemie is a baby who is born weighing at or less than 1 pound, 12 ounces or 26 weeks gestation.
Holly, thank you for sharing your story with us and know how grateful we are to see sweet Madden flourishing today.
They rolled me in a wheelchair into the NICU to get a glimpse of our tiny fighter. I had seen incubators on TV, but never in person before. A mom sees me in the hall and notices me in my hospital gown and wheelchair and says, “it will get better.” I never saw her but I held on to her words.
They had warned me days before he was born all the things that could go wrong, medical words I’ve never heard. Horrible sounding words, Cerebral Palsy, Brain bleeds, ventilators, blood transfusions, surfactant, NEC. Then the odds. They told me that due to inter-uterine growth restriction, my 26 weeker boy, who had a very ill mother, had 60% chance of survival. They told me this as the magnesium sulfate pour through my veins to keep us both alive. He had to live, he had to beat these odds. He was a miracle to us before he came fighting into this world at a whopping 1 pound, 12 ounces. We had loved him since he was a tiny frozen embryo. I remember when he was born. It was not the happy moment we had all envisioned. It was a very critical emergency, very late at night when the call was made that I could die by morning if they continued to keep me pregnant. I cried when they told me I’d have to deliver.
I got a glimpse of my tiny baby, who resembled a baby bird more than he did a baby. He was so small. They told me he had cried but it sounded almost like a kitten. He was whisked away, intubated and given surfactant for his lungs. He was put in an incubator where he would spend the next few months, truly fighting, growing and amazing all of us.
The next few months would be the rollercoaster we were promised. Some days I truly felt the staff didn’t know if we would take him home. Yet slowly, Madden grew bigger, was weaned of the ventilator, feeding tube, and oxygen. He fought serious infections such as necrotizing enterocolitis (NEC). He had multiple blood transfusions. He’d come off the ventilator only to need it again and again.
What nobody told me about having a micro preemie was the NICU nurses and doctor will become your family and best support. They will pray with you and weep with you. They will lift you up when you are weak. They are truly angels on earth nurturing these helpless small babies.
They never tell you that when you bring your baby home you won’t need to read any books or manuals that you will know your child backwards and forwards from your extremely long stay (117 days for us!) and they will even come on a schedule.
That every ounce and pound will be celebrated. We even celebrated maddens 100th day of life, even with a full beard of cotton and cane! We made the best memories in that NICU room.
They say the beeping will haunt you, but to me that sound will always be his heart and lungs were still working against all odds.
My son is now a very normal healthy 3 year old. He wears glasses, is small for his age , and has asthma but all things may be attributed to his prematurity or hereditary. He may outgrow these issues as well. He has a spirit as big as life and watching this miracle every day is not lost on us.
The best advice I’d give to a new micro preemie mom is to never give up on your baby. Be there as much as possible to do skin to skin, sing, and advocate for your baby. Sometimes all I could do was hold his hand. I think that may have made all the difference.
It’s truly the most amazing thing I hope you never have to see.
Holly is from Ohio, is a full-time working mom doing tactical operations in a large bank, and proudly is the mother to her son Madden who was her IVF and micropreemie miracle boy. You can connect with her on Instagram at @m_is_for_miracle.
PPS – If you’re ever looking for a devotional on living life while in a waiting season, check out the devotional I co-authored called ‘In the Wait’!
PPPS – Check out the other contributions from this series, including What It’s Like: to experience multiple IVF cycles, raise a child with special needs, use an egg donor, be a DIY-er and home style blogger , be a NICU nurse, Live fully in singleness while still hoping for marriage, suffer with endometriosis. experience depression, and start a company. Stay tuned for many other amazing topics to come every Tuesday and Friday here!