Now What? A Guide to Families with Preemies

On July 3, 2013, Andrew and I were informed that I was carrying mono-amniotic twins. I remember sitting in my physician’s office and hearing the inevitable. Only 50% of mono-mono twins make it to viability. High-Risk pregnancy. Bed-Rest. Hospitalization beginning at 24 weeks. Constant Monitoring. We’re lucky if you carry to 30 weeks. And then, the word: NICU.

Prior to this pregnancy, I wasn’t familiar with a Neonatal Intensive Care Unit or premature babies. Therefore, I was terrified of what was to come and what this journey would entail. Will we make it? Will our babies survive? What does a NICU look like? How will I be able to leave my babies? How small will they be? Will they be okay?

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On the other side of this journey, I wish I would have known then what I know now. This is why I am creating a resource for families and parents of premature babies.

For parental resources, you can find more information under prematurity on the menu. This post is specifically written for family members and friends of preemie parents. Below you will find helpful tips on how to be there for your friend and/ or loved one and how to understand the boundaries in such circumstances. Let me preface this information by saying that Andrew and I were so incredibly grateful for our family, friends, and those whom we had never met before during this time. We were very blessed that everyone was so understanding, patient, gracious, and generous to our family during this time.

I hope that you will find the below tips helpful as a family member or friend of parents that are enduring a NICU stay with their child(ren).

Tip #1:  Every Preemie is Different. Every Experience is Different. But, it’s ALL Difficult.
It is true that NICU parents share a bond with one another. We can relate to one another on a level that others outside the NICU can not understand. While we can relate, we are all still different. Our babies are different. Their needs are not the same. In our NICU journey, I made friendships that would have been passed by if it weren’t for our babies. Through these friendships I learned that not all preemie babies and NICU experiences are the same. For example, there is a difference between a baby born at 34 weeks compared to a baby born at 29 weeks, just as there is a difference in a baby that is born at 26 weeks. Just be careful when you are discussing prematurity with parents of preemie/s. As a mom to 11-week premature girls who endured a 90+ day NICU stay, prematurity is a delicate subject for me, but one that I am passionate about. Simply remember that every baby is different, every experience is different, and no story is the same. The illustration above is from a resource that was shared with me in the NICU. It shows you the different stages of severity for premature babies. Tommy’s.org is a wonderful resource that I recommend to parents, family, and friends of premature babies.

Tip #2: The NICU: A place where “normal” doesn’t exist.
Everything about our entry into parenthood was not “normal”. I was rushed into an operating room at 29-weeks… my husband leaving his car unlocked (with the keys in the ignition…and running) on Manning Drive just to make it in time to kiss me as they wheeled me into the operating room to have our girls. Want to know another interesting fact? They were delivered via emergency c-section with me still wearing my t-shirt and hair in a messy bun. It all happened that fast.

This is all to say that a preemie’s birth is not the same as a full-term baby. While any new birth is a joyous celebration, a preemie birth is just as scary and crucial at the same time.The NICU is a really hard place to be, and has many rules and regulations that you have to follow. The day after our girls were born was one of our hardest days. The first 24 hours were crucial for them. It was the first time I got to see them. Andrew and I met with 4 or 5 different doctors throughout the entire day, from 5 am to 10pm. While it is hard to comprehend, do not treat this as a normal birth. There’s no other word for it besides grace. Show the parents that you understand and are patient. As proud parents, of course we wanted to show everyone our daughters. We wanted normal. We wanted the waiting room full of family and friends, a celebration, and balloons at the house when we came home two days later. In the NICU, it isn’t normal. It’s hard. It’s really, really hard. For 90+ days I had to leave my babies in the hospital every day. At the end of the day, I was so emotionally and physically spent. I didn’t have much left to give to anyone else. As a friend and family member, the best gift you can give is your understanding, patience, grace, and space. There will come a time when you can celebrate, and that will be the most amazing feeling. Wait for that day. Pray for that day. One day, everyone will find normal again.

3. Please Don’t Judge Me for my 650+ Containers of Hand Sanitizer.
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After coming home, don’t expect for normal to happen automatically. It takes time. A lot of time. Trust me, all I desired was for the day I could take the girls ‘out and about’, meet my friends for lunch, and pass the girls off to family without making them scrub down like they are prepping for brain surgery. For three months, we became regimented to use hand sanitizer every time we went to touch our babies. Touch your phone? Hand sanitizer. Go to a different baby? Hand sanitizer. This was our normal. So, when your friend or relative goes psychotic on you and showers you with Purell, don’t judge. Also, please allow the parents to offer to hold/ touch their babies. Especially if you have little children! This is huge!! This was really hard for me because I never like telling people “no”.  Just remember where the parents have been and why they are so extremely cautious. Remember that they have held their tiny baby among tubes, wires, and the sound of monitors. Remember that they have had to send their baby to surgery. Remember that they have had to watch their baby learn how to breathe on their own without support. Remember that they don’t want to send their baby back to the tubes, wires, monitors, and incubators. There will come a day when they aren’t quite as crazy about the hand sanitizer or Lysol. Until that day, respect the stop sign. You can purchase them here.

4. Cold/ RSV Season.
Are you catching a recurring theme here? Understanding, patience, and grace. Cold/ RSV season is very stressful for parents of preemies. RSV season runs from October — April.  For most infants, the RSV causes an illness like a common cold. Not for preemies! For babies born preterm,  RSV can lead to a severe infection which can cause pneumonia or bronchitis. These conditions can lead to serious complications, re-hospitalization and in some cases, death. Check out RSV 101: What Every NICU Parent Needs to Know from Hand to Hold, another wonderful resource for parents of preemies.

Born 11-weeks premature, our girls were brought into RSV season and came home in the middle of the season. THIS is why we had to go into isolation with our girls, and only allowed a select few into our home. It was recommended by our pediatrician to wait until the girls were 3+months gestational age (end of April) to allow more flexibility in terms of taking the girls places. This may be true for other families! The last thing that parents of preemies need in an already strong season of anxiety, is added pressure. After keeping the NICU restricted to family only, it was really hard not to share the girls with others when we came home. Thankfully, everyone was very understanding and patient during the time we had to keep the girls away. Therefore, not only during the NICU do you need to extend grace, space, understanding, and patience, but also when the family arrives home. It may be a while until you can see, hold, or touch the babies. We still have family members that have yet to meet our girls, and they are 6.5 months old (May, 2014). As mentioned before, there will come a time when all will be normal again. The germ-a-phoebe will always live inside of a preemie Mama, so don’t be offended if you are showered in Purell before you touch the babies. It still happens!

5.  You’re Home! We’ll stop by in a few months…
This was by far the most challenging journey that Andrew and I have ever taken, both together and individually. As a NICU mom, the last thing I needed was pressure.  Andrew and I were already under pressure as parents to babies in the NICU, and we additionally added more pressure to ourselves. Every minute we were not in the NICU with the girls we felt guilty for not being by their side. We are not alone. Many parents that are battling having a child/ren in the NICU are under tremendous pressure. Oddly, there were times when we felt more anxiety and pressure after we came home. For three months, we had doctors and nurses at our beck and call. If we felt as though something was the matter, they were always there to our rescue. We were familiar with the sounds of alarms and seeing their heartbeat/ breaths per minute on a monitor. At home, we didn’t have any of those. Also, during our time in the NICU and through the holiday season, it was almost as if life had been put on pause. When we returned home, reality set in for our family. We were outside where germs would hunt for our premature daughters, 24/7 care for two babies began, maintaining a home with two babies, bills, outside relationships… you name it, reality hit us square in the face. Like other families, it took us a while to get re-adjusted and find our normal. After three months at home, we are just now beginning to somewhat find our stride. We are still crazy and it’s a circus around here 99.9% of the time, but we are happily at the point where we feel somewhat “normal”. Therefore, don’t have the expectation that a family returning home from the NICU will be ready for a house full of visitors. We were blessed with family and friends that would simply leave a meal right outside of our front door!

Overall, the best gift you can give your family and friends in the NICU is understanding, patience, grace, and space. I remember the days when I had so many encouraging text/ calls from family and friends. I never got around to answering every single one, but they extended grace towards me and kept sending them anyway. Through this journey, the best gift we received was the unwavering support, encouraging words, and all the many prayers that were lifted on behalf of our girls from family and friends. This is all that NICU parents need.

Show ’em the love!

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2 thoughts on “Now What? A Guide to Families with Preemies

  1. yoga alliance says:

    First of all I want to say awesome blog! I had a quick
    question that I’d like to ask if you don’t mind.
    I was curious to know how you center yourself and clear your head
    before writing. I’ve had a difficult time clearing my mind
    in getting my thoughts out. I do enjoy writing but it just seems like
    the first 10 to 15 minutes are generally lost simply just trying to figure out how
    to begin. Any recommendations or hints? Kudos!

    • marykwhite says:

      Hi there! Thanks so much!! My mind is usually spinning nonstop, I can hardly get it to shut off when I go to sleep! I am always thinking of different topics for the blog. Sometimes, I will just blog about an event or tell a story that has happened to us that I’m willing to share with others! As the girls are getting older, I have noticed that my favorite time to knock out a blog post or have time to myself is early in the morning. I usually wake up around 5am, and have some time for prayer/ reflection, drink a cup of coffee, and then just work out my thoughts! Best of luck to you!

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