The Battle of the Boob

nicu snuggles 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.

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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.

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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!

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Comments

  1. What a powerful post! I’m so glad your little one is thriving now. It blows my mind that they were trying to force formula.
    Laura B recently posted…Winner of doTERRA Essential Oil GiveawayMy Profile

    • She really is amazing! They aren’t even adjusting her age anymore. She’s meeting milestones far ahead of her actual-aged peers. I couldn’t be prouder or her—or myself! I just KNOW breastfeeding played a part in that! A lot of the things that happened in the hospital, both prenatally and post partum, are shocking. I can’t believe those kinds of things happen in hospitals!

  2. With my little one coming at 29 weeks, I was so fortunate for our NICU up here in AK. Kangaroo care was encouraged, and while they wanted some supplemental formula for weight gain, breastmilk and nursing were always supported. The nurses always made sure I hade bottles, pump parts, use of hospital pump. One nurse, on a very gloomy day for me, even sat me down and strongly encouraged that I nurse him for the first time, at 33 weeks. He did wonderfully. Sure, other mom’s reported different situations that were negative, but I am so thankful that our two months in the NICU were facilitated by wonderful people.

    I am so sorry for the garbage you had to endure, and commend your for making it right for your little one. Some of the things you talk about are some of the weirdest crap I have ever heard, and I have heard a lot in my day.

    Good job mama, and her name is so beautiful.

  3. I must say your blogs usually have me in hysteric s, but this one not so much! The more I read the more frustrated I felt. I cannot believe that they were forcing formula as well as the dumb contract, as well as the guilt you were feeling, no mother should ever be put through that EVER! Good for you for challinging them and coming out on top! You have beautiful healthy children! I hope that other moms who are facing these challenges get to read this, you are an inspiration!

    • Thank-you! It really was a crazy experience. I wouldn’t wish it on anyone. The nicu is a scary enoigh place without the added pressures I faced. Unfortunately for them, they didn’t know who they were dealing with ;) . I’m just sad for all the other families that are likely subjected to this treatment. Who knows how I would have reacted had Sequel been my first and I’d been less educated. I’m heartbroken for the new mamas who aren’t given the right information!

  4. reading this really makes me wish that I was more informed about breastfeeding vs formula with my son. I knew breast was best but never knew that formula could be deadly. My son was born at 32 weeeks and got Necrotizing Enterocolitis while in the NICU. I pumped like a mad woman and had plenty of milk at the hospital for him but found out one of the nights I didnt go to the hospital (I had 2 older children) he was given formula all night. his condition spiraled downward and he passed away 4 days later. During the weeks after I did a ton of research and found that the formula feeds this infection since it doesnt have the antibodies that breastmilk does. I wish there was more information for moms so that everyone could be fully informed

    • Oh love! I am so so so sorry for your loss. Did they ever explain why they gave it to him when you had provided them with milk? Either way, my heart is broken for you! You’re so right! More information needs to be provided to all new moms. Nicu or not. We are at our most vulnerable right after having a baby, and it is so unfair that we are not given all the pieces of the puzzle.

  5. Kim Dube says:

    You sound like a pedophile

  6. Unless you were also on a dairy-free diet, there is no way you can accuse the nurses giving formula to your child as the reason for her rash, because your BM would also be carrying that protein. I went through the same with my LO.

    As for your assertion that they gave her formula without your permission, I call BS. EVERYTHING that they do they have to tell you about, including what they feed. They have a LEGAL obligation to follow the parents’ directions.

  7. I know how, as a mom, you want the best for your baby, but you have to remember who went to university to get their varying degrees in nursing and medicine – the nurses and doctors. When it comes to personal beliefs (breast vs bottle or cloth vs disposable) sure, stand your ground. But when there is a medical reason for them doing things you need to stand back and let them do their work.

    A baby born 7 weeks early is on that cusp of maybe or maybe not knowing how to suck. A soother helps to develop those muscles in preemies. Here’s the link to a Google search that has a plethora on medical publications that say just that.

    http://ow.ly/uRAEy

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