I’ve never felt like the mother of a preemie.
Our second daughter was born just 5 weeks earlier than her expected arrival. Well, 5 weeks and a few days.
She was healthy. For the most part.
Sure, her palate was missing. All of it. Soft and hard. Both sides.
But she was healthy. Breathing. Not in immediate danger of losing her grip on her new life.
We had feeding challenges. Her O2 sats were monitored constantly.
Diagnosed with Pierre Robin Sequence, she underwent two surgeries in the first 21 days of her life. One major, the other to place a PEG feeding tube so she could go home.
We decided on a PEG feeding tube because to take her home with an NG tube (a feeding tube which goes in through the nose) would be impossible. If it came out, two people were required to replace it. At the time, her father worked as a restaurant manager. We had a toddler. Two dogs. I pumped exclusively. A PEG was infinitely easier.
At least I thought a PEG would be easier. The first night home, I slept in her room. The Kangaroo pump kept alarming. I didn’t sleep well. She didn’t eat well. We were both very grumpy. But eventually we got the hang of it and I became an expert at everything she needed. I once wrote up instructions for my former in-laws on her care. JUST the pump. Two entire pages. To write up her care for a full day would have been nothing short of a novel, I’m sure.
I remember those days. Blurry as they were, I remember them. Pumping. Setting up her feed. Cleaning pump supplies. Chocolate. Cuddling with my toddler. Waiting for the pump to beep. Stopping the beep. Pumping. Glaring at the dogs because NOW they need to go out. Taking them out. Setting up her feed. Cleaning pump supplies. Chocolate. Cuddling with my toddler. Waiting for the pump to beep. Stopping the beep. Pumping… you get the idea.
But not once did I feel as if I fit in at a preemie community. Most preemie moms I ran into had babies born at 27 weeks or earlier. With SERIOUS health problems. I didn’t belong. So I didn’t use them for support.
Shame on me.
Our reason for being a preemie mama may be different. Our babies may face different health challenges. But we? We ALL face the same fears. The same frustration. The same thoughts of “This? IS NOT WHAT I SIGNED UP FOR but I’m doing it anyway.”
I remember breaking down in the dining room one night. I wanted to never go back to the hospital. I wanted to leave her there. I was DONE.
But the next morning? I got up and went. Because that was my baby girl. And nothing would keep me from her.
One morning I even sprained my ankle just getting up from pumping. Know what I did? Wrapped it up. Packed a ton of Tylenol and Ibuprofen. Told her father that if things got really bad, there was a “grown up hospital across the street.”
Preemie mamas are by far the toughest damn women on the planet. Before becoming one, I never knew if I could do it. But I did. And I’m stronger for it. So are you. You may not feel as if you can relate to another preemie mama but I promise you, she is feeling exactly like you. She is scared. She is riddled with anxiety. But she’s doing it anyway. So are you. Reach out. Talk. Be a companion. Don’t ever go it alone.
