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.
I couldn’t sleep. It was time to pump again. If I did not pump, I stood to lose the precious supply of breastmilk I struggled to establish. Every three hours I hooked myself up to a yellow hospital grade Medela pump. The plastic horns were cold. Hard. Definitely not the warm natural manner in which I expected to be providing milk to my new baby girl. Never-mind she was in Atlanta about an hour away.
I sat on the couch, in the dark, hooked up to a whirring machine via tubes. 70+ miles away, my daughter was doing the same thing, hooked up to machines, whirring and straining to keep her alive.
‘Cause you can’t jump the track, we’re like cars on a cable And life’s like an hourglass, glued to the table No one can find the rewind button, girl. So cradle your head in your hands And breathe… just breathe, Oh breathe, just breathe
~Anna Nalick, Breathe~
She was a little over 4 weeks early, my second daughter. A late-term preemie but a preemie none the less.
We had no idea she had a cleft palate. Or a recessed jaw. Or a compromised airway. Or a floppy tongue.
No idea she would be in an ambulance less than 24 hours after birth heading toward a NICU in the nearest large city.
No idea we were about to get a crash course in medically fragile infant care.
No idea of the plan to take our lives and turn everything completely upside down.
The plan was to have a baby. Go to the hospital, give birth to a healthy baby, nurse, go home.
Our plan failed. I failed. I wailed. I cleaned. I screamed. I cried. I wanted to leave her at the hospital. She was not mine. The hospital had made a mistake. They could keep her. I could not do this. I couldn’t. I just… I…. I was delusional. In shock. Processing but yet…. not.
Detached. Clinging to a series of routines. Clean, brush, wash, change, pump, meds, yell, scream, argue, repeat.
Stuck at home.
What I wouldn’t have given to have had her stay inside for a few more weeks.
To have known before we had her of the issues we would face.
But we did not.
I do not know if knowing would have changed a damn thing. I think it would have sometimes. But then I realize I cannot change what has been. Only what will be.
There’s a light at each end of this tunnel, You shout ’cause you’re just as far in as you’ll ever be out And these mistakes you’ve made, you’ll just make them again If you only try turning around.
~Anna Nalick, Breathe~
The day we were to learn how to place an NG tube, I sprained my ankle as I got up from pumping on the couch. My husband freaked out along with me. Then I instructed him to bring me an ankle brace and ace bandage, bag up some ibuprofen and tylenol, and grab an ice pack. There was a grown up hospital across from Children’s. If things got worse, I would go, I promised. I never went. The nurses asked why I was limping. When I told them, they chided me. I did not care. I had limped around since arrival. 42 hours of labor wracked my body. I had the shakes, fever, signs of trauma. I kept going. I burned and re-tore. I should have slowed down. Rested. But I could not. My daughter needed me so I threw myself gleefully under the bus, a Cindy Crawford Pepsi ad smile glued to my face.
Because this is what a Mother does. Right? Right?
Everyone told us just get through the first year. The first year is the worst.
What they didn’t mention was the follow up appointments. The speech therapy. The potential for behavioral disorders. Allergies. Orthodontia. Additional surgeries. Ear Tubes. Feeding Tubes. Depression. Developmental delays. Hell.
They also did not mention the joy we would feel when our daughter, at four years old, finally blew out candles on her birthday cake all by herself. I cried.
Or the joy when she finally started talking and could TELL us in her voice instead of with her hands how much she loved us.
Or how much joy would spread across her face as she blew up a balloon after surgery #6 which created a pharyngeal flap to close off excess nasal emission of air previously preventing her from blowing up a balloon.
Or her giggles when she first blew bubbles.
Or how big we would grin as we listened to her teach her 2 year old brother talk.
How good it would feel to as she finally made progress.
How good it would feel to understand 80-95% of her speech instead of 25-50% of her speech.
How good it felt as we both recovered from depression and felt the sun’s warmth on our faces and in our hearts.
How grateful we would eventually be to God for carrying us through such a huge storm.
2 AM and I’m still awake, writing a song If I get it all down on paper, it’s no longer inside of me, Threatening the life it belongs to And I feel like I’m naked in front of the crowd Cause these words are my diary, screaming out loud And I know that you’ll use them, however you want to
~Anna Nalick, Breathe~
When I became pregnant with her brother, I began to blog here. Not so much for others at first, but for me. I needed the support. I needed to vent. I needed to know I was not alone. Writing became a solace for me.
I know I am not alone.
You are not alone.
We are together.
There are thousands of us scattered across the world, just as scared as the next one. But we are not alone. We are not alone.
But you can’t jump the track, we’re like cars on a cable, And life’s like an hourglass, glued to the table No one can find the rewind button now Sing it if you understand. and breathe, just breathe woah breathe, just breathe, Oh breathe, just breathe, Oh breathe, just breathe.
~Anna Nalick, Breathe~
Today I breathe. In. Out. Just as before.
But everything around me, in me, has changed.
I have changed. For the better, I think.
Today I am stronger. I am braver. I am not stuck in that moment. I move forward. Not because I have to but because I want to do so. Because I choose to do so.
I am far from perfect. Far from June Cleaver.
I am me. Unapologetically me and unapologetically me as a mom. I do not worry about what I am doing right or wrong according to others. I don’t worry about what she says or she says or she says. What she says does not matter. All that matters is if my daughter has laughed with me today. Has she felt loved? Has she been hugged? Is she warm? Clothed? Fed?
Our house is a wreck. My kids watch TV. My kids eat junk food occasionally. I do too. We are imperfectly perfectly us.
And for that?
I am grateful.
So I breathe. I exhale. I move forward as an empowered unapologetically me.
The day I gave birth to my daughter four and a half weeks early was the same day I gave birth to a stronger me.
It just took me nearly five years to really figure that part out.