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Surviving the NICU: Advice from a Preemie Mom

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Tips and Advice to Make it Through Life with a Preemie after the NICU

One of the greatest fears of any expectant parent, is going into premature labor.  Being a new parent is stressful enough, but having to cope with the stress of a medically fragile child is unimaginable.  Latisha is a married mother of two children, ages 12 and 8, both of whom were born premature and spent time in the NICU.  She is also employed full time as a Electrical Engineer.

We decided to interview Latisha to gain insight into the lives of NICU and preemie parents, how to better support preemie parents, and ways preemie parents can balance the stress of balancing their work lives with parenthood.

1. Tell us a little bit about your kids. How early were they? Birth statistics? Complications? Predicted outcomes?

According to the CDC, preterm birth is when a baby is born before 37 weeks of pregnancy have been completed. In 2016, preterm birth affected about 1 of every 10 infants born in the United States.

I happen to be a mother that has had the opportunity to have had two preterm deliveries, 4 years apart, due to an incompetent cervix. This means my cervix couldn’t handle the weight of the baby.

The first delivery caught us completely off guard.  The second time we were prepared and had a plan. Both deliveries had the same results healthy, vibrate, stubborn kids.

However, getting to this point included some struggles.

My daughter currently, age 12, was born at 24 weeks and 5 days, weighing a whooping 1lb 8oz. and she was 12 inches long. She is what’s known as a micro- preemie.

A micro-preemie is a baby who is born weighing less than 1 pound, 12 ounces (800 grams) or before 26 weeks gestation.

She spent 4 months in the Neonatal Intensive Care Unit (NICU) in a children’s hospital, where she underwent three surgeries before she was 4 months old, several blood transfusions, and a variety of tests.

When she was finally able to come home, she still weighed less than 5lbs and wore preemie clothes as well as diapers.

My son, who is 8 years old, was born 32 weeks and 5 days, weighing 4lbs 10oz. The doctor stated he was on his way to being a 10lb baby. Compared to his sister at birth, my son seemed like a full term baby to us. He only spent 6 weeks in the NICU.

Despite all of their struggles in the beginning, the only evidence of my children’s prematurity is them having to wear glasses.

2. What are some of the emotions you experienced as a new Mom with a premature infant in the NICU? How did you cope with these emotions?

I experienced a wide range of emotions being a new Mom with a premature infant in the NICU.  The most frequent emotion I experienced was guilt.  I kept blaming myself for my inability to do the first job of motherhood, carrying my child to term.

Nothing can prepare you for delivering a child and having to leave them behind.  The worst feeling in the world is being rolled out of the hospital, getting into a vehicle, and going home to a room with an empty crib.

I was able to cope with my emotions through prayer and talking to women that had experienced the same thing that I had.  Once you open up and start talking to people, you realize you are not alone.  My best friend, Tiana, was a preemie and Social Worker, so I talked to her a lot as well as her mother.

I also focused on what things I could do for my baby, such as pumping, and decorating their incubator.  The biggest thing was washing, ironing, and folding their clothes, and receiving blankets.

We also were able to read to them and eventually hold them. The ability to have my body temperature keep my baby warm made me feel alive.  This is known as Kangaroo care.

3. Did your emotional experience change the second time around? If so, how?

The second time around, once we reached the 28 week goal, my emotional experience changed. I wasn’t as worried about what potentially could happen, because the rate of survival increases dramatically after 28 weeks.

When he came at 32 weeks the delivery felt like a full term delivery. Granted it only lasted 30 minutes once I was in active delivery. But that was enough!! I still cannot conceptually understand why women would want to have multiple full term deliveries.

After I delivered, my doctor apologized for my inability to go full term.  However, I was happy that I had a baby that made it to 32 weeks and 5 days.

I was able to feel him move around and kick as well as listen to his heartbeat on an at home monitor.  I wasn’t able to experience that with his sister, except for once, and then she came the next day. But this time I was able to experience that plus waddling. I still missed out on the sleepless nights and water retain-age.

4. How did you incorporate self-care while being employed full time and having a child in the NICU? What specific things did you do to take care of yourself?

Since I pumped for both kids, I tried to maintain a semi-healthy diet. And to relax I would get my hair, nails and feet done. Plus, in my free time, I’ve always have enjoyed reading fiction novels.

5. What was the most helpful and least helpful thing that people did while your baby was in the NICU?

My daughter was born in between my junior and senior year in undergrad. I was in the hospital deferring labor on the first day I was supposed to be starting my third internship. From the hospital bed, I turned down my internship and explained my situation to my scholarship advisor.  She approved to the funding to pay for two summer school classes and I secured a research opportunity on campus.

The Dean’s administrative assistant allowed me access to her office and freezer, so I could pump and store my breast milk.

And for my son, my Department Head’s Administrative Assistant as well as the Human Resources Representative found me a room with access to a sink, so I could have privacy at work to pump.

I think the least helpful thing that I experienced was…

having someone who delivered their child at 38 weeks try to compare their experience with mine. I am sure they experienced emotional turmoil but unless you’ve walked out of a hospital without your child or walked in and saw your baby laying in an incubator with an IV line sticking out of their head, it makes it hard for me to be compassionate to their claim.

6. What are the most helpful items to have to make NICU life easier for you and the baby?

Some helpful items to have to make life at the NICU more bearable would have to be a teddy bear at the other end of the incubator that contains the parents smell, and a photo of parents, siblings, and family members so the child can become familiar with whom their actual family is.

They will be handled by a variety of doctors, nurses, and volunteers that for them to be able to identify their parents helps, even from the beginning.

For the parents, hopefully, the NICU has video camera capability so you and family may have access to view the baby even if you’re unable to be there at that moment.  Also, don’t be afraid to read a book, recite a nursery rhyme, or sing a lullaby to your child.

7. What were your must have items to help your care for your preemie right after their discharge from the hospital?

Besides the normal hygiene, diapers, socks, hats, and baby monitors, I would have to say comfortable blankets, clothes that actually fit the baby, and most importantly spare preemie pacifiers.

8. How did you manage breastfeeding? What are some tips you would give to a preemie Mom who wants to breastfeed their NICU baby?

My daughter was unable to breastfeed until she was about 6 weeks old, 30 weeks gestational. By then I had weaned down my supply and was preparing to stop pumping.  Even though I had only pumped for 6 weeks my breastmilk supply lasted until she was 6 months old.  She was barely consuming 1cc of breastmilk when she was born.

For my son, since he was further along gestationally he was able to breastfeed right away.  That was an amazing feeling. Again, he received breastmilk until he was 6 months old.

The best advice I would give to a mom who wants to breastfeed her NICU baby is to do it. Don’t give up even if it may frustrate you at times or make you unsure of yourself. It’s one more thing that allows you to be a mother for your baby even when they can’t 100% be there with you.  Plus, all the benefits the baby receives from breastmilk is worthwhile.

9. What are some techniques you used to help build the bond between you and your baby while they were in the NICU?

With my daughter being born so early, we were unable to hold her at birth. The best the doctors were able to do was to show us her inside of the incubator before they rolled her out of the room down the hallway to CHKD where she resided until her estimated due date.

At first we were only allowed to reach our hand inside one of the openings to briefly touch or allow her to wrap her hand around one of our fingers, because she was unable to maintain her body temperature.  Eventually, she graduated, and we were able to hold her skin to skin. That’s a technique known as Kangaroo Care.

Then the next stage was being able to change her diaper.  Most parents to full term babies don’t look forward to that task. But to parents that are not afforded the opportunity it’s a rock, paper, scissors shoot for who gets to do it first.

Next, milestone was giving her a bath and change her clothes. This is done all while being supervised closely by a nurse to make sure her breathing didn’t drop or her body temperature didn’t get too low. Plus you have to put all the monitoring sensors back on, in all the correct places.

Finally, as parents, we were allowed to feed our baby a bottle. Again, the NICU nurse is there to make sure the baby successfully sucks, swallows and breaths while consuming their meal.

10. Looking back on your journey, is there anything that you would do differently?

Looking back, I would have breastfeed/pumped for the entire first year. I wouldn’t have given up.

11. What is one piece of advice that you would give to new NICU parents and/or parents of premature babies?

Prayer changes things. No matter what your religion or belief is, there is a higher power out there that is always ready to listen and provide strength when needed.

After my daughter’s third surgery, she was having a hard time from the operation. Her stats kept dropping, and she was flat-lining. We were told to leave the recovery area and wait in the waiting room. We started praying, they called CHKD’s Chaplin up, and he started praying.  The family inside of the waiting room also started praying with us.

My baby recovered.

12. Tell us about your children now.

I refer to them as A & J, Thing 1 and Thing 2. They are rising 7th and 3rd graders now. They are funny, inquisitive, witty, stubborn, high energy, and dramatic children that fought hard to be here. While they have a love/hate relationship with one another, when necessary, they have one another’s backs.

My daughter enjoys reading vampire dramas, making videos, and playing the piano.

My son enjoys playing basketball and tennis, plus horse-playing with the dog.

13. How did having NICU babies impact your marriage? What did you do to help support the relationship during that time?

Having NICU babies us closer together. We learned to lean on one another to make it through. He never blamed me for my inability to carry the children full term. He never made me feel less of a woman.

If anything, it made him more catering the second time around.  I was put on partial bedrest which meant he had to cook the meals, handle laundry, and take our daughter to play dates and her Christmas school performance.

14. How did you handle seeing other pregnant women carry full term babies? What advice would you give to a mother struggling with this topic?

I think that was one of the hardest things at first. My kids are 3 weeks away from being 4 years apart. It was originally planned to have my cervical cerclage removed the day after my daughter’s birthday. Which meant they would have been exactly 4 years and 1 day apart. I said all of that to say, they are spring babies. A lot of women are typically pregnant during the spring/summer time.

I didn’t experience a lot of things. I only have one pregnant picture from when I was carrying my daughter. And I wanted to do the 3D ultrasound, and I never was able to do that with either children.

Two of my classmates was pregnant also during this time. One baby was due in June and the other in December, my daughter was supposed to be born in September. I was able to see their progression. They allowed me to ask the questions and touch their bellies as they continued to grow.

Today, for the NICU mom…

For mothers going through this today my advice is this. Even though their babies are growing inside of them, your baby is here and is still growing. You get to see, hold, and love on your baby sooner rather than later. Enjoy it.

Eventually, they will be running around playing and growing into independent individuals. So for today, hold them if you can, love them because you must and keep your head up.

No two stories are the same.

15. Did your NICU experience impact you wanting to have more children?

I’ve only even wanted two children. Therefore, having two NICU experiences didn’t impact me wanting more children. When I was pregnant with the second child, on my first appointment I told the doctor, that I didn’t care if they baby was part dog, we needed to figure out my options after delivery because this baby factory is closing.

16. What did you do to prepare knowing your second pregnancy would be a high risk pregnancy?

Pregnancy is typically a time of celebration. For a known high risk pregnancy, announcing it to the family is more like a business meeting. You provide pregnancy milestone goals, different scenarios based on how far along you are, and provide statistics for success. Sometimes you have to remind the family, you are already a parent, and the decisions you are making are the best for you and your baby.

When I went into labor with my daughter, I didn’t have a diaper bag packed or my hospital bag ready.  This time I was prepared. At 24 weeks, we had it packed and ready just in case we would need it sooner than later.

I had to brief my employer about the possibilities of not going full term or being put on bedrest. Plus there were increased maternity appointments and progesterone shots.

17. How did having a premature baby impact your maternity leave?

I am a DoD employee. Since I was put on a reduced work schedule prior to the delivery of my son, I was allowed to receive donated leave from other DoD employees. While he was in the hospital, I was allowed to continue to use the leave to take care of him.

And when he was released from the hospital his breathing still had to be monitored by an apnea machine so I was allowed to use the donated leave while I stayed home with him.

When he was born, OPM only allowed for parents to use FMLA for maternity leave of children or adoption.

Thank you Latisha for sharing your journey.

It is important to remember to utilize your support and practice self-care to help ease some of the stress that you have as parents of premature infants.  Even if it is taking a warm bath, getting your hair done, or going for a walk around the hospital, using your support and taking care of yourself will make the NICU journey a little more bearable.

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Life in the NICU - survival tips from a preemie mom

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