No one can prepare you for the events that will ultimately change your life as you once knew it.
During my second pregnancy (my first pregnancy ended in a miscarriage) more than six-and-a-half years ago, all the icky things that seemed to be going wrong had finally faded after 20 weeks.
We were grateful and so excited to tell our family and friends we would be welcoming a baby girl in the weeks to come. Little did we know, on January 14, 2010 our baby girl would make a very early arrival.
When a doctor looks at you and tells you, “I need to take your baby,” your response is — No!
Yes, 25 weeks may be viable, but this baby cannot be ready to come out!
Within minutes, you find yourself signing papers with one hand, an IV is placed in the other, an epidural is given, and all you can think to do is repeat, ”please let her be OK, please let her be OK.”
You are whisked away to an operating room. You see your doctor again and a curtain goes up.
She asks if you can feel a poke and she begins to cut. No one is talking. You are beside yourself, what in the world is going on? Your last memory of this moment is of you screaming, “She isn’t crying, why isn’t she crying!”
And that is it. That is how my delivery story went. There were no smiles and no happy tears. Just fear, and so much confusion.
After delivery, my husband went with our baby girl to the NICU and I was brought to the high-risk floor. The neonatologist who helped bring our baby into the world arrived. She informed me the next few days would be very critical and our 1 pound, 8 ounce, 12.25-inch baby girl was stable. But she was “very sick.”
She handed me literature on what to expect when your child is born at 25 weeks gestation. I asked what we should do next and she said, “You can be cautiously optimistic.” And with that, she left the room.
I was allowed to see our feisty little warrior 12 hours after her abrupt arrival. Our Emma Claire was the tiniest little thing we had ever laid our eyes on. You could barely see her from under all of the chords and wires. Her face was the size of an Oreo cookie that was masked by the tube from the ventilator.
All we could hear was the beeping and dinging from the machines and the sound of the ventilator keeping our baby girl alive. It hurt our hearts so much and in that moment we realized our lives would never be the same. With that, the NICU rollercoaster began.
The days were long, scary and so overwhelming. Each hour brought something new. In the NICU, Emma’s days consisted of X-rays, ultrasounds, eye exams, daily blood draws, blood transfusions, multiple infections, possible infections, PICC lines, intubation, CPAP, medicine, medicine, and more medicine, IV’s, DSATs, feeding tubes, brain bleeds, kidney function concerns, blood pressure issues, a hole in her heart, a new hole in her heart, and the list goes on…
But those days were also filled with so much love. Snuggling, breathing her in, seeing her eyes for the first time, hearing her cry, picking up her head, staring into her bright blue eyes, weight gain, bottle feeds, smiles, play time, holding her, and watching so many people love and support our tiny baby.
There were days I clung to her bed begging to keep her as the floor fell out from under us, but thankfully the dust would settle and we were filled with gratitude that we were able to keep her one more day.
During our three-and-a-half month stay, we met a few families that had also had 24/25 weekers.
They would later name us the Preemie Posse. They were our support on a daily basis. They “got it.” They were living our life. We laughed, cried, celebrated successes and the little things. Stood on the edge of the cliff hand-in-hand, and hugged tight when two of our friends each lost one of their twins.
They were there every day, for many months ahead. The doctors, nurses, therapists and medical staff became part of our daily world; they were our support, our educators and most of all, they did everything in their power to help us bring our baby home.
Outside of those locked doors, we also had the most amazing family and friends to support us. They sent message, gifts, words of encouragement and love, prayers, positive vibes and oh so much more. We are eternally grateful.
Each day, we lived in fear of what the next hour may bring. And we never gave up hope. Hope that she would survive. Hope that she would one day leave that popsicle stand. Hope that we would not fail her.
We were inching towards the day we would bring Emma home when a slew of new things popped up, but other things began to resolve. We prepared to bring our 7 pound baby home. Leaving was bittersweet. It was all we had known for the last 104 days, but we put on a brave face and took our Emma Claire home.
Emma’s first two years at home were filled with four different therapies a week. To ensure she was healthy and making progress, we had appointments with a variety of specialists. We celebrated every little thing she did. Finding her feet at nine months old, the first time she reached for a toy with purpose. The first time she would bear weight on her hands, knees, feet. The first time she ate baby food. The first time she made a purposeful sound. The day she sat, the day she crawled and the day she walked.
Feeling like we were somewhat coming out of a fog, we tossed around the idea of adding to our family. We did a lot of research, met with specialists and weighed our odds of having a baby after a placental abruption.
My next pregnancy was a high-risk pregnancy, but it was calm and a very happy time. At 33 weeks, a few minor things arose and due to Emma’s delivery, it was important they take my baby early. We returned to the NICU with another beautiful baby girl, our 33 weeker was huge, 5 pounds, 4 ounces and 18 inches long. Finley Kate was born and she was crying when she arrived! The NICU rollercoaster continued and this time, we had a two-and-a-half year-old at home. Thankfully, this stay was only three and a half weeks long.
Finley was probably Emma’s best medicine. Emma would make her belly laugh and smile from ear to ear. It was love at first sight for them. We are so thankful we never gave up hope and stayed optimistic because Finley has completed our family.
Our Emma Claire is now six-and-a-half years-old and in the first grade. We have continued private occupational therapy to assist her with fine motor skills and sensory weaknesses. We continue to seek out resources, programs and activities to help strengthen her tone, improve her balance and allow her to be successful in an academic environment to the best of her abilities. We try to be her best advocates.
Emma loves school and animals, enjoys playing basketball, T-ball, reading books, and riding her bike. We know Emma will always have to work hard. Therapy of some sort will most likely always be part of her life. School will continue to bring its challenges. But we will remain optimistic, provide her with many tools and support her every step of the way.
We had no idea Emma could be the child she is today. We loved hard, worked hard, fought hard. We reached out for help when it was so hard to ask for it. We believed she could, we tried to be optimistic when our backs were against the wall. We celebrated the little things. We prayed, we begged, we embraced one another, we never lost hope — and we never will.
Remember to celebrate the little things: breathe your children in, be their best advocate, listen for their laughter, accept help, know you are not alone, memorize their smiles, hold them tight, be optimistic and never lose Hope.