Surviving the NICU: Life as a Preemie Mommy

Preemie Motherhood - 2

This article is the first in a series of guest posts. I have invited a few select friends and family members to contribute to my blog. I have chosen them based on two things: 1) I personally go to them for help; and 2) I am fascinated by their unique parenting challenges, because I want to hear how they make “okayest” work for them.

Allow me to introduce you to my sister-in-law, “Dee”, who, along with her 2-year-old daughter, Em, is currently living with us. Em, my niece, was born 3 1/2 months early and survived. Em, a former micropreemie, now weighs 27 pounds and can hold her own against her three cousins (who have managed to outweigh her). We have four children under the age of four living in this house. The chaos, mess, noise, and diapers are out of control, but every time I see Em giggle, hug a cousin, or say “oops” with a lisp, my heart soars. She is the Girl Who Lived. Here is a little window into the world of preemie motherhood.

When Melissa asked me to be a guest writer for her blog, I thought about what “okayest” moments I’ve had parenting my daughter, Em. I could go on for days about different situations we’ve had, but being a mom of a 1.5 lb baby tops all of my other mommy moments. Parenting in a NICU is incredibly difficult, especially when you never saw it coming. There are no perfect moments. There are no lovely, glowing pictures of you snuggling your newborn. It is chaotic, heartbreaking, and eye-opening to watch your tiny baby struggle to live, while you struggle to keep your sanity. Each and every day is about surviving and being okay.

Em’s (glossed over) Birth Story:

At 25-weeks gestation, I noticed a small amount of spotting. I’ve heard it’s not terribly uncommon, but I had my husband take me to the hospital just to make sure. As my doctor was checking me, his expression turned from unconcerned to uncomfortable. He told me that I was 2 cm dilated, and needed to be rushed to a hospital with a level three NICU, so that they could put a stitch in my cervix.

While in the ambulance, I asked the EMT how many premature babies he had delivered. He responded with: “Two. But neither made it, since we aren’t equipped to keep smaller babies alive.” I was stunned and furious. Who says that to a patient that is 25-weeks pregnant and on a two hour trek to the hospital?!

By the time we arrived, I was 4 cm and having contractions. They were able to give me medication to keep Em in the womb for another week, which saved her nearly a month in the NICU.

On the seventh day, I woke up bleeding and contracting, and spent the next five hours begging my nurse to get my doctor to help me. She would come in every half an hour or so to tell me that I was fine, and that I was not in labor. I cried. I pleaded. It took my mother and husband yelling at nurses down the hallways to get someone to come in. By the time my doctor showed up, my daughter was having her legs crushed in the birth canal. I was told I needed a stat c-section. Then an ultrasound showed that there was no time, and she needed to be born breech, immediately. My tiny little baby was born with bruised, black legs, because of my nurse’s negligence. Had she been head first, my time as a mom would have ended that morning.

This is the day Em was born, at 26 weeks gestation, when her eyes were still fused shut like a kitten's.

This is the day Em was born, at 26 weeks gestation, when her eyes were still fused shut like a kitten’s.

Em went through nine weeks of crazy ups and downs. We went through more than I can even write, but here are some of the things I’ve learned along the way.

Being a preemie mommy means:

-…you were (more than likely) unaware that your little one was going to come into this world so soon, and are BEYOND unprepared. And it’s okay that you are! You will learn by watching your baby change each hour of each day (and from the occasional google search that turns out to be helpful, and then is just down-right terrifying).

-…mourning a pregnancy that ended too soon. You will feel gypped. You may have to go to your baby shower while your baby is in the NICU. You don’t get to look super pregnant and take fun maternity pictures. If you’re like me and waited until the second trimester to tell anyone, you’re going to feel like you’ve been pregnant for five minutes.

-…not getting to touch or hold your own baby for days or even weeks.

This is the first time Dee was able to hold her own baby. She had to wait two agonizing weeks for this touch.

This is the first time Dee was able to hold her own baby. She had to wait two agonizing weeks for this touch.

-…being discharged and having to go home without your baby. This was one of the worst nights of my life. The guilt, the pain, the uncontrollable need to just be with your baby…. As hard as the first night is, it gets less painful as visits become routine. Eventually, you will be able to walk out of the hospital with your sweet little preemie and it’ll be a day you’ll never forget.

-…having to decide different courses of action, whether they are invasive, risky, or down right experimental. Em was part of the NEWNO study, which is a double-blind study to test whether or not giving a particular gas to preemies helps them breathe on their own faster. It was a scary decision to make, but to us, everything that was being done to save Em was first tested on preemies that were part of studies like this one. She can know that she made a difference to future preemies.

-…realizing that you and your child are capable of more strength, endurance, and hope than you can imagine. It may not seem like it, now, but trust me. You will see.

The Unique Positives:

-You will get to know your baby sooner than most parents do. You will see their personality shine through from day one, and (let’s be honest) it is interesting to watch a baby develop before your very eyes. When Em was born, her eyes were still fused shut, like a kitten. When she was about two weeks old, we walked up to her incubator to find these odd paper sunglasses on her, and her nurse told us that early in the morning, her eyes opened. I wish we could have seen it, but we put pictures of us in her incubator, so at least she still saw us.

-You will see that your preemie is a warrior. They will go through things that adults can’t handle, and their strength will amaze you. One of Em’s scariest NICU experiences was when a PICC line (an intravenous catheter that is threaded from the arm/leg/head to the heart for prolonged medication) site became infected. For several days I watched the slightly concerning bump on her foot turn into a black, marble-sized wound, that the nurses just would not take seriously. It wasn’t until she started running a fever of 103 degrees with her heart rate at 220 bpm, that they took action. They took off my 2.5 lb infants clothes and made her stay in an open bassinet for hours just to bring her temperature down. Once her fever was under control (days later), they told us that they needed to do a spinal tap to check for a deeper infection. After they performed it (and we cried harder than she did), we went home, for the night. At 3 am, I received a call from the doctor that they didn’t get enough fluid to test, and that she needed consent right now to perform a SECOND spinal tap, while she was all alone. As you can imagine, spinal taps are PAINFUL, and she was only given a small amount of Tylenol to ease the pain. These tests bring grown men to their knees, and yet these preemies often go through some of the scariest things alone. By the time we got there, she was bundled back up and sleeping soundly. It was if she hadn’t just had two giant needles jabbed into her frail back, just hours earlier. I don’t think I would have been in her position.

-You have more milestones to celebrate! Daily weight-checks to see if they’ve gained a few grams, being able to finally put some cute little clothes on your tiny baby, graduating to an open bassinet, and for some preemies, getting to take an ambulance ride to go from a level three NICU to a hospital with a level two!

Life at Home:

Here is the joyful day of Em's homecoming, after almost 3 months in the NICU.

Here is the joyful but intimidating day of Em’s homecoming, after almost 3 months in the NICU.

-The first night at home, you will be thinking: “WAIT. No monitors?! How will I know what her sats are? What if she has bradies (bradycardic episodes)?! How will I know?!?!” The idea of going from medical care 24/7 to being totally on your own is terrifying. Chances are, there will be a lot of unnecessary phone calls to the NICU because you think something is wrong, but DO NOT stop calling just because you think you’re being overly concerned. Had we given in to the many doctors that told us we were just young parents, and were still having some PTSD from Em’s prematurity, she would have never been diagnosed with epilepsy when she was, and she very well may not be here today, had we not followed our parental instincts.

-As time goes on, you start seeing your baby as a normal, healthy baby. No wires, no needles, no bandages, just your wonderful munchkin. Other people, however, don’t always know how to treat you and your preemie, now that you’re home. Which brings me to my next thought.

What NOT to Say to a Preemie Mommy:

1. “At least you’re not 40 weeks! Being this pregnant sucks!”

Say this to a preemie mommy, and she’ll want to punch you in the left ovary. We would give ANYTHING just to have been pregnant long enough to deliver a healthy baby. Bite your tongue!

2. “I wish I didn’t have to breastfeed!” or “You DON’T breastfeed?”

Preemie mommies can’t always lactate, which makes us feel inadequate and guilty for robbing our sickly babies of something that is so good for them. Even if you don’t want to breastfeed, it stinks not to have a choice.

3. “How is your baby having a GOOD day?! It’s so sick!”

Preemies can have good days. Even if it’s just gaining ten grams or coming down on their oxygen levels, it’s progress and that leads to hope. If you aren’t going to be positive/sympathetic, don’t say anything! We could use someone to just listen to us.

4. “Don’t worry, she’ll be fine.”

Yeah? Where did you get your doctorate of neonatology? Not only is this infuriating because no one knows if your baby will be fine or not, but it makes you sound passive about a very upsetting situation.

5. “Yeah, my kid was in the hospital with the flu for a few days. It’s tough!”

There are many parents out there that have had kids in the hospital, and many for reasons far worse than prematurity. But if your kid is in the hospital for poison ivy, don’t compare.

6. “At least you didn’t have to deliver a big baby!”

(Insert the hundreds of “at least you”’s that preemie parents can throw back at you.)

7. “She looks awful!”

She may not look well, because she is small and sick, but come on, now.

8. “She’s a preemie and you took her outside in this weather?!”

I’ve got more doctors numbers in my phone than I have friends/family. If I need medical advice on my kid, I won’t be asking you.

9. When your GYN nurse asks (without looking at your chart) “Did you feel the baby move, today?”

And cue sobbing. Running into people that don’t know you delivered early is tough. I have no advice for this one. It’s just awkward and sad.

10. “I’ve heard that the odds of a preemie doing ____ are ____%”

I’ve heard that the odds of being killed from falling out of bed are 1 in 2 million, so I’d start sleeping on the floor, if I was you. I hear statistics from every doctor and nurse that crosses my path. Don’t be negative, or try to be “realistic” about it. Just be supportive.

A Few Things to Remember:

-It’s okay to have fun outside of the NICU. I’ve had my share of guilt about going grocery shopping, seeing a movie, or just getting some dang sleep, but it’s necessary! You really do have to take care of yourself! Your baby has plenty of people taking care of him/her, so get take a little time each day to do something for you, even if it’s only for five minutes.

-Don’t take people’s crap in the NICU! I had a good share of family members that needed to just get the boot, either from being upsetting or negative. Your baby wants a happy mommy, and he/she won’t get that if mom is stressed out by a visitor that isn’t being supportive. Don’t be afraid to ask them to give you some space!

-The NICU stay will end eventually. It will seem like you will never escape the monitors, doctors and the sickening smell of Purell, but in a few weeks/months, you will hopefully be home with your little one.

There is no such thing as a perfect parent, but it seems like an even more unattainable status when you’re the mommy of a preemie. You don’t have to have it all together. You don’t have to pretend like you didn’t just cry in Target because a woman was pushing around her newborn, and you can’t even find a preemie shirt that will fit your baby (which, by the way, you’ll want ones with snaps that go down the front!). If you follow your instincts, get some sleep every once in a while, and just do your best, you will be okay.

Here is Em on her second birthday. Look how strong and big she is! Photo courtesy Mr. Okayest (Em's uncle)

Here is Em on her second birthday. Look how strong and big she is! Photo courtesy Mr. Okayest (Em’s uncle)

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8 thoughts on “Surviving the NICU: Life as a Preemie Mommy

  1. So well written. All the helpful details & precious reality that took each of you on a journey of ups & downs. My heart is so so happy for each of you. We prayed & bawled with every update from Melissa when she was born & in NICU & then with the seizures. Our oldest has epilepsy & that alone is horrifying, so I can’t imagine all the other things on top of it!!! You’re pretty amazing! I’ll always pray for sweet Emily. Ok now I need to go get tissues! ❤

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    • Thank you, Renee! I’m so sorry to hear about your son. Epilepsy is terrifying. I would give anything to take that burden from Em. And I’m so sorry for everything that YOU have been through! You are a serious fighter, girl!

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  2. I loved this post more than words can say! My girls were born at 26.5 weeks, a whopping 2 lbs, 2 oz and 2 lbs, 4 oz. Every item you posted brought back so many memories. Much to my amazement – my girls will be five years old next week. It’s been five whole years and I still can hear/smell/feel so many details about our NICU time. Thank you for posting the part about feeling gyped that things didn’t go as planned. It took me a long time to admit that to anyone, but I was heartbroken to miss out on so many experiences that other mommy’s may accidently take for granted – and let’s not even get started on the guilt that comes from delivering babies early and watching them fight for every ounce. Thank you so much for sharing your experiences and congratulations on your precious baby girl.

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    • Thank you! I’m glad to hear that your preemies are doing well! And it’s definitely hard to admit to feeling gypped. No one wants to come off as being selfish in such a terrible situation, but it’s the truth! Mourning the loss of a healthy pregnancy is natural, in these circumstances.

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  3. A great piece. And well put your list of things not to say to the mother of a preemie. I’ll add one thing I loved ( and still love) probably best to hear about my preemie twins– “they look so healthy!”

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