Six months ago today, my world was flipped violently upside down. After 32 incredibly torturous weeks, Sequel made her debut. Instead of worrying about what she’d wear home or which font I’d use on her birth announcement, I was faced with a much bigger concern: Her life.
You cannot possibly comprehend the true meaning of fragility until you watch a room full of incredibly tiny babies fight for their lives. Its significance becomes even more prominent when one of those babies is your own. I only briefly recounted my NICU experience, and it has taken me this long to come to terms with how horrific an experience it truly was.
It is a memory that will live with me forever. I could not be more thankful for Sequel’s progress, and looking at her now, you’d never even know that wires once hung off of her tiny body. I’ll never forget it, though. It was like a physical manifestation of the lines that tied her to life. One slip, and she’d be gone. I still hear the monitors beeping erratically. Every skipped heartbeat and breath was like a knife to my soul. The constant fear was unbearable.
I missed out on so much that most new moms take for granted. I wasn’t there every time she needed me. When my sweet girl cried, it was a nurse who was at her side. I can’t describe the guilt. I was so torn. At the time, I rationalized it by telling myself she had someone there—even if it wasn’t me. Piggle has no one. I had to devote myself where it was needed most.
Do I regret it? No….and yes. I don’t regret that I chose to care for Piggle. His whole life had just been turned on its ass, and he desperately needed me. I know I was right in choosing him over her—regardless of how much it hurt. What I do regret is not being there when Sequel required it most. I couldn’t be the voice she needed me to be.
I’ve heard so many amazing stories about NICU families and their phenomenal experiences, and I am so happy for them. Ours, though, was not one of them.
I don’t know if it was my age or appearance. It could have been the stoic front I displayed to keep all hell from breaking loose…and it could very well have been for no reason at all, but the fact of the matter is, dealing with the people that cared for my daughter was almost more traumatic than her being in the hospital.
From day one, it was a constant battle regarding Sequel’s care. From their refusal to allow Kangaroo Care (which I very quickly won) to pushing formula feeding on us, the fights were never-ending. It got so bad that I was made to sign an AMA (against medical advice) form when I refused to give her anything but expressed breast milk.
Regardless of signing it without hesitation, they went ahead and gave her a formula feed. Within hours, she was violently ill. She regressed drastically and began having As and Bs (Apnea and Bradycardia) again. She also developed an all-over body rash. The rash on her bum was so bad that she was bleeding.
When a nurse told me what had happened, I was livid. I had made it clear that she was not to have anything but what I provided, and had they listened, sweet Sequel never would have gone through that. They can’t have known that she’d be allergic to cow proteins, but they risked her life by going against my wishes.
After that scare, they adhered to my requests to the letter, but Sequel wasn’t gaining weight the way they wanted her to. While she was gaining, it wasn’t at a rate they’d normally see in a formula-fed preemie. And that is where the real struggles began. I argued that she was exclusively breastfed and would, therefore, gain on a different scale. There was no reason for her to gain at the rate she would in-utero, and she was thriving regardless of the slow incline.
I’d also mentioned to them that she had a severe lip tie, and suggested that it was lending to her inability to latch properly—on breast or bottle. They shrugged me off as though I were talking out of my ass. Clearly, a mere mother, not a medically trained professional, couldn’t possibly know what she was talking about.
For the 3 weeks that Sequel was in the NICU, she struggled to get enough to eat. I watched as they force-fed her bottles. I was helpless. Short of snatching her out of the incubator and running for the door, my hands were tied. That is why the guilt still plagues me. How incredibly traumatizing it must have been for her!
The day they let her come home, they sat me down with her doctor, nurse, and a lactation consultant. All three of them pushed the formula topic on me at once. I was cornered. They offered me two options: Feed her a specialized non-dairy formula or have her stay in the NICU until she gained what they wanted her to. They stated that she would never make it on breast milk alone. She’d fail to thrive and likely wind up back in the hospital. I had no choice. I wanted her home. I caved.
That day, she had one formula feed. Just one. And then we went home. I don’t know what the point of it was. Maybe they were just trying to show me who was in charge—put me in my place…I’ll never know, but one feed is all it was. Before leaving the hospital, I needed to sign her discharge papers. On the bottom of the pile was a bright blue form. A contract, stating that, upon signing, I would be agreeing to continue Sequel’s formula feeds, supplementing with breast milk only once a day, and absolutely no nursing. WHAT?!
Now they didn’t even want me to nurse her when her ‘once-a-day’ breast milk ration came about?! Insanity. I managed to hide my emotions, and I handed the signed stack of papers back to the attending nurse—including the anti-boob contract. I was given a copy of all of them, and away Sequel and I went.
As I walked out the door, I ‘accidentally’ dropped my copy of the contract on the floor. I would have none of it. Sequel was all mine, and it was my turn to call the shots.
The very next day, I called a dentist who specializes in treating lip and tongue ties. A week later, he saw us and confirmed what I already knew: Sequel had a grade 4 lip tie and two grade 3 tongue ties. He lasered them on the spot. Nursing was a struggle from the time we came home until the day her mouth healed, but I never gave up. I was determined to breastfeed before she was born, and the NICU simply made it a damn certainty that I’d make it work.
There were many times when I needed to hand express into Sequel’s mouth, and in one very down moment shortly after her surgery, I gave her a few sips from a cup, but I did it. I nursed a baby that the hospital was certain would never thrive.
Before my experience in NICU-Hell, I was under the impression that all doctors were pro-breastfeeding. As it turns out, they are pro-breastmilk and pro-whatever makes their job easier. I fought my ass off to get where we are, and it definitely wasn’t easy, but I wouldn’t have had it any other way. I wish there was more support for preemie moms. I wish I could be a cheerleader for every single one. Hopefully, one day, someone will wake up and realize that formula is not always the best choice for premature babies.
If you or someone you know is fighting this battle, please tell them they are not alone, and it can be done! Don’t give up!
We fucking did it! TAKE THAT!