Surviving the NICU: My Story

4 years ago

I've experienced nothing more helplessly frightening than giving birth to premature infants. I felt like I held my breath from the moment I rolled into the operating room until the moment we drove away from the NICU with three occupied car seats (honestly, I didn't let go of that breath for a long time after that). Trust is something that's normally earned, but with premature birth, trust becomes an instant requirement.

Nick Hall, the founder of Graham's Foundationand a fellow NICU parent, has provided tips for new parents who are facing time in the NICU after a premature birth.

Read and print out your Crib Sheet WIth NICU Tips Now..

So Where Do You Fit In?

Hall starts off by explaining how you're an important member of your child's or children's NICU team. As you spend more time in the unit, talk with your nurses, therapists, doctors and other staffers about more than health and care. Getting to know the staff will show you that they care, that they aren't just about business and moving babies in and out. Knowing that they care will ease your mind and help you find your comfort zone. You'll be at your strongest when you aren't intimidated, and your preemie needs you to be strong.

Find Balance in Knowing the Right Amount for You

Being thrown into NICU life is overwhelming, but I agree with the old adage, "Knowledge is power." As your preemie's parent and guardian, you will be asked to make decisions from the moment you first meet. You can't make decisions without knowing your choices, so be informed. Maybe you don't need to know that your baby's hematocrit is low because neonates before a certain gestation don't rapidly create enough red blood cells to replenish the frequent blood tests preemies need, causing your baby to struggle and need more intervention with breathing and heart rate. Maybe you just want to know that your preemie is struggling with more apnea/bradycardia/desaturation events because he or she needs a transfusion. There's a difference between thirsting for the reason behind every tick and tock and knowing simple cause and effect. My bottom line is know enough to keep you comfortable, but know something.

Emotional Roller Coasters

While I don't think it's possible to simply let go of guilt, the reality is that the emotions of a NICU parent are vast and various. I don't think it's possible to squelch guilt if that's what you're feeling, but that useless, dangerous emotion is best shelved until later. Use your emotions and brain power during your time in the NICU for forward thinking as often as you can and take time to talk with friends, a religious figure or your doctor when you have some down time. A surprise outlet I found were our NICU nurses -- many of them were former NICU mothers themselves, and their combined experiences as NICU mothers and nurses was a priceless resource.

Bonding Time

Many families can't freely touch their babies let alone hold them, and when you've either experienced newborn care with older children or you've merely witnessed the hands-on bonding of other parents, it feels absolutely unnatural to sit beside a plastic box with your baby inside. As Hall says in the crib sheet, the good news is even the tiniest, sickest babies still need care, and your NICU will welcome your eagerness to step in. Change diapers, check temperatures, hold the feeding tube as tiny amounts of breast milk or formula are administered, or simply cup your hands at the baby's feet and head for containment therapy. The staff may look busy and in a routine that shouldn't be interrupted, but you're still the parent, and they want you to feel like a parent.

There are continuing arguments, studies and specific-case details that may have your NICU team recommending you wait to participate or heavily limit your kangaroo care. Because every NICU, every NICU nurse, every neonatologist and every baby are different, request kangaroo care often. Our team set restrictions for us early on. For weeks, each of my triplets could only be held once every three days. The rotation allowed me or my husband to hold one baby each day, and we felt lucky. It took some time before I realized our luck (or the fact that we were complacent and not argumentative about the decision) wasn't important. Getting each baby into loving arms as often as safely possible was the most important thing. Our nurses later admitted to being too restrictive with care and not putting enough faith in the healing, loving touch of parents and our babies' strength.

The more you interact with your baby, the more you'll see his or her personality shining past the wires, tubes and plastic walls. Your voice will soothe, your stories will be heard, your hands will be welcome, and your scent will be craved. Your baby wants you more than anything else. Do what you can to meet that basic need.

For the Times You Can't Be There

When I couldn't be in the NICU, I always knew I could call. I made more than one 3 a.m. phone call during our 67-day stay just to check in and see how everyone was doing as I set up my breast pump parts, ready to make my "off-duty" deposit.

Everybody is different, and for some -- like my husband -- spending hours upon hours in NICU is understandably difficult. Aside from hospital claustrophobia, things need to get done, such as career, family time, housework, and groceries. Time away from the unit is necessary, but time spent in the unit is time spent with your child. How is that unhealthy?

Spending 10-14 hours each day was feasible and was healthy for me. People tried telling me otherwise, but as a healthy adult, that choice was mine to make. Two years later, I still don't regret it. It's your decision, too.

Celebrations Abound

NICU milestones can be the same as those shared by all parents -– the first outfit, the first outfit in the next size up, the first bath, etc. –- but there are many unique to NICU parents. For instance, celebrate eating. I cheered for the first 1 mL (1/30 oz.) of milk each baby tolerated, given to them by a tube that ran into their mouths and down to their stomachs. I remember celebrating successful burps coaxed by me or my husband, impressively wet diapers and the decreasing frequency of heel sticks. If something changes in a positive direction, celebrate!

Take Care of Yourself Too

The only thing I can think to add to Hall's advice is a hearty, "YES!" You can't care for anyone else if you aren't cared for first. Accept what people offer, and don't be afraid to ask for more help. What's the worst they can say? No? Chances are you've heard worse than, "No," but chances are greater they or someone else will be happy to step in.

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