Advocate for your preemies; even if you don't have medical experience, you are the expert in your child.

Trust Your Instincts as a Parent of Preemie Twins

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“Here you go, honey.  Everything you need to know about the NICU is in here,” the kind nurse explained, handing me a thick, white binder.

24 hours prior, I had given birth via c-section to my first set of twins at 32 weeks after a distressing, eventful pregnancy.  My brain was still a foggy mess from all the medications that had been pumped into my system in the operating room and I hadn’t even held my babies yet.

Advocate for your preemies; even if you don't have medical experience, you are the expert in your child.

My newborn boy/girl twins were whisked away to the NICU so quickly that I only got to lay eyes on them for a few mere seconds, not quite long enough to imprint their tiny faces into my memory

When I was finally able to see my babies, my husband led me into the NICU.  My eyes searched the various bassinets and my heart felt heavy when it became painfully obvious I didn’t know which children were mine.

I felt helpless.  Shouldn’t a mother be able to recognize her own babies? Their cries? Their faces? Their scent?  Something, anything?  And who was taking care of them anyway, while I spent their entire first night and day of life tossing my cookies up into a bedpan?

This is when the nurse had handed me “the NICU manual”.  She introduced herself to me and added, “I’ll be caring for your babies tonight.”  Go ahead and add an overwhelming sense of guilt to all the other emotions I was experiencing.

She continued, “When you get back to your room later, if you’re not too tired, go ahead and look the manual over and let us know if you have any questions.”

Instead, I went back to my room and sobbed for hours. This is not exactly how I had envisioned my entry into motherhood.

During my pregnancy, I had imagined giving birth to full-term twins and bringing them home with me when I checked out of the hospital.  I had fantasies of breast feeding them round the clock and handling motherhood like a boss.

However, every evening as I exited the NICU, I watched new mothers leave the hospital in wheelchairs with their bundles of joy clutched tightly in their arms….while I left empty-handed and heavy-hearted.

Advocate for your preemies; even if you don't have medical experience, you are the expert in your child.

During the day, I would spend every waking minute at the NICU, yet when I was away from my children at night, I felt detached.  I still didn’t FEEL like I was the mother of newborn twins.

It wasn’t until one week later when I found myself disagreeing with one of the NICU nurses about my son’s reflux issues that it finally happened.  My instincts took over and my inner “Mama Bear” emerged out of nowhere.

“I really feel like you’re pushing him too quickly. He’s not ready to increase his feedings yet,” I argued.

“He’s ready. He’ll be just fine,” she tried to persuade me as she rushed off to take care of another baby.

I followed her and begged, “Please, just listen to me. Can we go back to the lower amount and just give him some more time?”

She turned and looked at me. “I’ve been a nurse for 20 years, honey. He’ll be fine.”

I stared at my precious baby boy lying in his bassinet, completely depending on me to do what was right for him, and something snapped.

With authority in my voice, I said, “I understand you’ve been a nurse for 20 years. And I trust that you do your job well. But my gut is telling me that he is not ready for more.

He gags with every feeding, he pukes it up immediately….it is too much for him. It absolutely kills me that he has to be in here with tubes and wires coming out of every orifice, that I wasn’t the one to give him his first feeding or change his first diaper….and that medical staff are making decisions about my children without consulting my husband or me first.”

Advocate for your preemies; even if you don't have medical experience, you are the expert in your child.

I continued, “I am his mother and I am making the decisions for him and for my daughter. I will speak with  his doctor tomorrow when he’s here but until then, please decrease my son’s feedings back to the lower amount.”

The nurse smiled warmly and gently touched my arm.  “Baby,” she said. “You are going to make a wonderful mother.”

With tears in my eyes, I replied, “I already am.”

And that is the exact moment I came charging head-first into parenthood, finally understanding that I was not just an observer in my children’s medical care but I was their mother, their advocate…the one who gave them life, the one who would walk the ends of the earth for them and had every right to be involved in all the decisions that were being made for them.

Ultimately, that thick, white NICU manual helped educate me on all the terms, procedures and tests that are associated with a premature baby.  However, just like with full-term babies, there is no manual in existence that can prepare you for parenthood and all the emotions that go along with it.

There is no doubt that the NICU nurses and doctors are wonderful and amazingly skilled.  They will teach you how to change a poopy diaper on your fragile 2-pound baby and how to remain calm when your preemie forgets to breathe.  Some may even help you attach nipple shields to your breasts to help your babies latch on, should you choose to breast feed.

Advocate for your preemies; even if you don't have medical experience, you are the expert in your child.

And you’ll deal with 10 different nurses in a 2-week period and various doctors will rotate on and off…all the while you’re a constant in the NICU, trying to make sense of all the opposing suggestions from each of them.   One nurse will tell you that your preemies are ready for bottle feedings while the next nurse totally disagrees.  It’s enough to make your head spin at times.

The most important piece of information I can share with you, as I learned, is to TRUST YOUR GUT.  If you’re not comfortable with something, speak your mind, share your suggestions, have a discussion with the medical staff.   Make sure you understand and feel satisfied with every detail of every procedure and test, as well all medications being given to your babies.  Do not be afraid to ask questions, share concerns or have a difference of opinion on what is best.

With my 2nd second set of twins, I insisted that they only be allowed to sleep on their backs (not their tummies) while in the NICU because I remembered how much my husband and I struggled getting our 1st set of twins to sleep on their backs upon coming home after they had only slept on their tummies during their 4-week NICU stay.  Sure, some of the nurses weren’t exactly thrilled but, in the end, I didn’t care about what made their job easier.  I needed them to do what was best for my babies.

It’s not about being besties with your favorite NICU nurse.  Yes, we all want the nurses and doctors to like us and not to dread all interaction with us.  But, at the same time, you may have to ruffle some feathers in order to get the quality care and service your babies deserve.  This doesn’t mean you have to walk around like a certifiable witch, it just means that a dash of respectful assertiveness and a sprinkle of tactful sensitivity will serve you and your babies well.

Remember, you are an essential and valuable partner with the NICU team, in terms of caring for your newborn preemies.   Your babies are depending on you, as their parent, to advocate for them.  It may be awkward at first as you venture into this uncharted territory but, soon enough, you’ll get the hang of it.  And you will be a much stronger, more assertive parent than you ever thought you could be.

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.

Helene is a 40-something, married, stay-at-home mother to two sets of twins.  With the first set of twins born in October 2004 and the second set of twins arriving just two years later in March 2007, she maintains that having a wicked sense of humor is key in raising multiple multiples.  

To follow along on Helene’s real-life, tell-all adventures of parenting twins x 2, please visit her blog at I’m Living Proof that God has a Sense of Humor.

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20 thoughts on “Trust Your Instincts as a Parent of Preemie Twins”

  1. Wonderful story! I love your honesty in how to approach an awkward situation with staff. People are not informed or educated in knowing that we are in control of how the medical field treats us. It is so important to know you don’t have to agree with everything you are told, especially after childbirth! Thank you for sharing such positive and needed advice in a very delicate and touchy childbirth situation.

  2. Helene, what an awesome article! I wish I had your gift with words! I can remember feeling many of the things you mentioned in the beginning, because my babies were shuttled off quickly to the NICU as well…for that first week I felt kind of adrift, like I wasn’t really a mother yet. After I was discharged from the hospital I got the flu (yep, couldn’t make this up!) and I couldn’t even go to the hospital for several days because I didn’t want to expose the babies to my germs. I still remember the bittersweet victory of FINALLY pumping a whole bottle of breast milk for them, only to be told that the nurses had to throw it out because I was sick. Those were some emotional days, but we made it through…and once the babies were home, we settled right into normal life…which as you know is totally not normal at all!

    1. Thanks Sara! I would’ve cried for days if I had to throw out my breast milk!!

      And now look at us….don’t those newborn years seem like ages ago???

  3. Most definitely go with your gut! Mommy knows best.
    Now, I also asked friends who had babies (especially around the same time as I did) but every baby is different.

    Another word of advice would be, do what you do. Don’t let anyone knock you for setting a routine, feeding your kids a certain way, etc. I had someone who wanted to pick apart everything I did. Don’t let anyone tell you how to do something. My motto is: I may not get it right the first time or do it like you did, but it’s my way and it works for me.

    1. Missy, you are so right! I had plenty of people giving me unsolicited advice but none of them had twins so they had NO idea what I was experiencing! Great advice!!

    2. Agreed! I listen politely to advice and then promptly forget everything that doesn’t apply or feel right. Sometimes something that works for one of my girls is totally the wrong answer for her identical twin.

    1. This is such a good point. We’re focusing on preemies and on multiples and on moms, but all new parents are in the same boat.

  4. Ah your story made me cry. How powerful. It is amazing thing when our “mother self” emerges! And it only gets stronger from there :o)

  5. Great post – didn’t know the story about the milk. Glad you spoke up. My first babies were in the NICU about 10 or 11 days and the beginning was much like you described. I was so sick for about 24 hours. The warmth of the NICU made me nauseas so I didn’t want to go in. The next morning I cried because I was laying in my hospital bed and didn’t know what my babies looked like. Then Mike came in with photos he had printed and had their names printed on one photo for each of them. I was so happy that he had done that. I don’t think he had any idea that I didn’t know what they looked like or was upset about it, but I studied those pictures every time I was in my room. But all that time was like a blur to me. I don’t know that I would have had the thought or the courage to speak up. My 6-month long mommy fog had begun. :)

    1. Thanks Kimberly! That was so sweet of Mike to bring you the pictures! Tim did the same thing that first night and I remember feeling so foreign to them as I stared at their pics.

      “Mommy fog”….that’s such a great term to describe that feeling!!!

    2. “Mommy fog” is exactly it. Although I was the Energizer Bunny in mommy fog once the C-section recovery was over. It was bizarre.

  6. Your story brought me back to my twin’s premature birth. I felt so lost and terrified in the beginning. I didn’t feel like I was there mother yet since I wasn’t the one taking care of them. I never learned how to find my voice while I was in the NICU, but I wish I had. There was one doctor who wouldn’t call them by their names – they were baby a and baby b. It drove me crazy plus it didn’t help that he acted like it bothered him to explain things to me. So I stopped asking him questions and just went to the nurses. Thanks for sharing your story.

  7. Good for you! As a nurse myself, I tend to forget that the best assessment comes from either the patient or parents concerns. I am so glad that you turned into a momma bear and voiced what you felt where the care should go. Not a lot of people do that and I am glad that you pointed this out. You are your children’s best advocate.

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