“The pain that you’ve been feeling can’t compare to the joy that’s coming.” -Romans 8:18
As I write this, my daughter Scarlett is sleeping on my chest. She just turned four months old and although she’s been home for nine weeks, her NICU experience still haunts us. We incessantly check to make sure she’s breathing, haven’t let her leave the house except to go to doctor’s appointments (it’s flu season, y’all), weigh her almost daily to make sure she’s putting on weight, worry about her meeting milestones (she’s already several months behind her chronological age), and are scared to death she’s going to catch something and end up back in the hospital.
One day, she will no longer be considered a preemie–but she will always be our rainbow miracle baby. So, let’s talk about our emotional 73 day NICU experience.
Foreword: You’re reading this article for one of two reasons. One, you have a baby in the NICU (neonatal intensive care unit) or know someone with a baby in the NICU and are reading other’s stories to better understand your road ahead.
The second reason is that you follow Wherever I May Roam Blog or know me personally and are curious to finally find out about our NICU experience. I hope it’s the latter. If not, know that I am praying for you and your sweet baby.
Our NICU Experience: Pregnancy
I found out that I was pregnant at the end of April. My husband, Blake, and I had been trying, but we were still surprised–and so very excited! When I found out we were having a girl, I was even more excited. I couldn’t wait to start buying clothes for her and dreamed of the future dance classes she would take.
Pregnancy was pretty great. I had headaches for a while, what I’m sure was SPD (symphysis pubis dysfunction), and I LIVED on Tums. During the second trimester, I developed a cold. Aside from that, there was nothing out of the ordinary.
Oh, I actually had morning sickness one time and puked in a Target bathroom–but nothing that would predict having a baby 13 weeks early.
Since my parents live in Florida, Blake and I frequent Walt Disney World. It was only fitting that we take our pregnancy announcement pictures at Magic Kingdom in front of the castle (and on the hub grass!). I made a onesie that read “our greatest adventure begins January 2019”. How wrong that onesie would be…
Fun Fact: I was actually at Walt Disney World two weeks before giving birth. I went with my friend Rachael for Mickey’s Not So Scary Halloween party and we made a weekend out of it. We walked around 20 miles and aside from sore feet, I had no problems.
How We Got There
On Monday, October 8th, I woke up around 4 AM with the worst headache of my life. I was miserable, but since I went through a phase a few weeks earlier where I had a headache almost every day, I didn’t think much of it.
Around 10 PM, Blake (a Pediatric ICU NP) decided to take my blood pressure, since the headache hadn’t gone away. It was stroke level.
We called my doctor and she told us to head to the hospital. I thought that I would go in, get checked out, see that our blood pressure machine was wrong, and be home in time for my glucose test that was scheduled for the next morning. But, I was wrong.
I was pumped full of blood pressure medicine and magnesium. It was awful–I was drowsy and really out of it. Even with all of the medication, my blood pressure was still extremely high. The next morning, my doctor came by.
She told us that I had developed preeclampsia and my body couldn’t handle the pregnancy anymore. It was no longer safe the baby or me. She started antenatal steroids to help the baby’s lungs develop. We needed 48 hours for the steroids to fully kick in and I prayed that we would have enough time.
Since I was only 27 weeks, we were terrified. There was still a whole trimester to go and so much growing left to do. I prayed and trusted that God knew what he was doing, although it was hard.
Wednesday evening (almost 48 hours exactly after receiving the first antenatal steroid shot), my doctor came in and said it’s time to deliver this baby. I was so groggy that I don’t remember much, but I do remember going back into the operating room and that I couldn’t stop shaking.
On October 10th at 5:31 PM, our sweet Scarlett was born weighing two pounds exactly.
Our NICU Experience Begins
Scarlett was immediately whisked off to the NICU. She was intubated (put on a breathing tube), connected to lots of wires, and started on several medications.
I remember waking up in the recovery room very much still out of it. And that’s really it from one of the biggest days of my life.
Later that evening, Blake and my Mom got to see Scarlett. They took pictures for me. She was so tiny and heartbreaking, laying in an isolette with a breathing tube in.
The next 24 hours are a blur. I only remember being miserable; due to the magnesium, I still wasn’t allowed out of bed. Finally, more than a day after Scarlett was born, a sweet nurse named April let me go up to the NICU and see my baby.
As soon as we entered her room, I started crying. There was my sweet baby girl! I immediately fell in love with her. The nurse told me to put my finger in her hand and I sat there talking to her for the first time while she held my finger. I will forever cherish that moment.
Although I was no way near “recovered”, all I wanted to do was go home, shower, and try to get a handle on everything. I really couldn’t wrap my mind around what was going on. On Saturday, October 13th, I was discharged from the hospital. Blake and I loaded up the car and drove away from the hospital, crying and listening to Eric Church’s “Some of It”, without our new baby girl.
We didn’t know it then, but we would make that drive for 73 days. Even at our lowest and when we felt like we had nothing else to give, we made the 18-minute drive to see our sweet Scarlett.
Adjusting To Life In The NICU
During Scarlett’s first few days in the NICU, I kept asking “how long should I be here each day?”. The answer was always “as much as you want to” or “as much as you can”. I wanted a specific answer, but I never got one.
At first, we knew Scarlett was still adjusting to life outside of the womb so we would swing by for 30 minutes to two hours. I would inevitably pump and we would read a book, put our hand on Scarlett, or just talk to her.
As Scarlett’s time in the NICU progressed, we started staying much longer. I would head up around noon and stay until 5, and then later until 8 or 9 PM. Even on days when I spent 10 hours in the NICU it never felt like enough. Why did I have to rush home and go to bed? Couldn’t I just stay for one more feeding? What kind of mom was I to leave my baby when she needed me most? This is what floated around in my head our entire time in the NICU.
Have you ever heard of NICU guilt? Well it’s real and it’s a real bitch. Every moment you aren’t with your baby in the NICU, you feel guilty. When you walk out of the NICU to go home, you feel guilty. When you go to the store to buy groceries and aren’t sitting with your baby in the NICU, you feel guilty.
At night, when you go to bed instead of sleeping in the NICU, you feel guilty. It’s a never-ending cycle. Everything you do outside of the NICU makes you feel guilty. That’s how I felt Scarlett’s entire time in the NICU.
Scarlett spent 73 days in the NICU. It was the most difficult 73 days of my life.
While Scarlett was in the NICU, I exclusively pumped. I never enjoyed it, but it was all I could do for her. I put a lot of pressure on myself to produce, which just stressed me out more.
In the beginning, I was pumping eight times a day–every three hours around the clock. After two weeks, I had a breakdown and after talking with the unit’s lactation consultant, started giving myself a six-hour break at night to sleep. But, that just meant I had less time to squeeze in my eight pumps during the day. It was exhausting–all I did was pump.
I finally got to hold Scarlett (doing skin to skin) on day five (Blake didn’t get to until day 33) and it was magical. Once we routinely started doing skin to skin with Scarlett, I would plan my visits around which nurse would be there. Some nurses would let you hold your baby for an hour exactly while others would let you do it for the full two hours in between feedings. Sad, but I wanted to spend as much time physically connecting with her as I could.
Although I had just had major surgery (a C-section) and preeclampsia, I didn’t have the time that I needed to recover. There was no downtime–I was running back and forth between home and the hospital, pumping all hours of the day, checking in with my doctor, and trying to make sense of all that was going on. I wish that I could have spent a few days taking it easy and recovering, but that doesn’t happen when you have a child in the NICU.
Truthfully, our NICU experience put a strain on my marriage. Granted, I have a fantastic husband. Maybe even the world’s best husband. He goes out of his way to take care of me and would do anything in the world for me. But, those 73 days took a toll on us.
Blake was busy juggling 13 hour work days in the PICU, graduate school, and clinicals on top of having a baby in the NICU. But I just saw that he wasn’t spending as much time with Scarlett as I was nor five hours of his day pumping. He just didn’t get what I was going through.
Other relationships in my life suffered, too. I was absolutely exhausted and completely rundown. I didn’t want to talk to anyone and I found it easier to isolate myself than to open up and let people know what I was going through. My two best friends would text me to check on Scarlett, but they didn’t let that be all that we talked about–which I am incredibly thankful for.
My Mom and Dad were kind enough to put everything that they had on hold and stay with us for a few weeks after Scarlett was born. I know I was rude and hateful without meaning to be, but there was just so much going on and above all, I was angry that my baby was having to fight for her life and scared that she might not ever come home.
The first few weeks, we didn’t know if she was going to survive. Those kind of emotions take a toll on you.
Scarlett’s Issues In The NICU
If you’ve never spent time in a NICU let me paint a picture of ours for you. At the perfect moment, it’s a “quiet” unit divided into four areas, where each has around five small rooms with glass sliding doors and two nurses sitting in the middle at a long table.
Since there are multiple babies, you always hear a monitor beeping letting you know that a baby has finished feeding, a dropping heart rate, or isn’t breathing, among other things. You pretty much constantly hear machines beeping and you pray it isn’t your baby’s.
During Scarlett’s first several weeks in the NICU, we would sit in her room and hear constant beeping from the monitor, signaling that she had quit breathing, her heart rate was dropping, or her oxygen level had fallen. Scarlett had apnea of prematurity.
Sometimes she would have an episode and would recover quickly on her own, but other times she required stimulation, at which point a nurse would come rushing in to help. All we wanted to do was spend time with our baby, but we spent the majority of our time visiting watching the monitor. It’s enough to drive you insane–the noise itself and the worry that comes along with it.
For a while, we thought that Scarlett was going to require a blood transfusion. She had anemia of prematurity and apparently a lot of preemies undergo a blood transfusion sometime during their NICU stay. With the help of medication (and probably some prayer), she didn’t end up needing one.
More Issues In The NICU
Since she was born so early, Scarlett had respiratory distress and had to work really hard to breathe. She was on oxygen for around seven weeks. I will never forget the excitement Blake and I felt when we walked into her room and saw her whole face, without a breathing tube, for the first time. Her nose was absolutely beautiful!
Another big challenge for Scarlett was learning to bottle feed. Babies don’t develop the suck, swallow, and breathe reflex until late in the third trimester, so Scarlett was tube fed for the majority of her time in the NICU. She struggled with a bottle at first. She would drink three or four milliliters and be exhausted, gasping for breath. It took a lot of practice, but Scarlett built up enough endurance to take a whole one-ounce feeding.
Since weight gain is so important for preemies, fortifier was added to her milk to increase her caloric intake. It’s heavily concentrated, which was hard on her belly, and we were thrilled when her doctor allowed us to take her off of it–several weeks after coming home.
Scarlett had a lot of problems, but things could have been much worse. I thank God every day for allowing Scarlett to avoid major health complications.
Issues With The NICU
On top of all of that, we had problems with our NICU itself, too. Granted, we had a much better NICU experience than a lot of other people. I have heard horror stories and am blessed for some of the wonderful nurses that took care of Scarlett (HUGE thanks to Jo and Helen!). But, it was rough.
The biggest issue was communication. We would call and check on Scarlett first thing in the morning–5:30 AM (when I finished pumping) or 6:30 AM (if Blake went to work). A few nurses did a great job of giving us a report from the night before, but most of them would just say “she had a good night” or “she now weighs…”.
We would then spend all afternoon/early evening in the NICU (where we would occasionally see and talk to a doctor, but most often not) and call before going to bed, at 10:30 or 11 PM.
Between all of that, I felt like we were in constant contact with the NICU. Still, there were things we weren’t told. Scarlett had a finger issue for a while. It would get perfectly stiff and you really had to work it out to get the joint to bend. One day, they did an X-Ray of Scarlett’s finger but didn’t tell us. We only found out because a Nurse Practitioner mentioned it in passing several days later.
Scarlett failed her hearing test in one ear, twice, and we had no clue about either hearing test until the same Nurse Practitioner mentioned it in passing. Luckily, we had run into her and she had told us about it because shortly after, another hospital called to make our appointment to get her hearing rechecked. We wouldn’t have known what they were talking about otherwise.
And More Issues With The NICU
Scarlett was “sick” and put on IV fluids four times during her ten-week stay–four times in what I think would be the most sterile unit in the hospital. Our poor baby was stuck with a needle, on top of everything else she had going on, and her tiny, underdeveloped body was pumped full of hard medications for infections four separate times.
The first time, she was taken off IV fluids too early which resulted in her being put right back on them several days later (time number two). The third was a few weeks later and the fourth was right before going home, which I can’t even begin to tell you about because I am still fuming about the situation. All four times, nothing grew from the sample they took. We have not a clue what the underlying issue was.
Another problem is that we regularly received conflicting information. One nurse would tell us one thing regarding a situation and the next shift, another nurse would tell us something completely different. We had to do a lot of research on our own.
Although our NICU had 24/7 visiting hours, there was no structure. There was no set time for rounds when a doctor would come around and most days the nurses didn’t even know when they were stopping by. It would have been nice to have a set time to talk to a doctor if we wanted to.
Compile all of these issues on top of everything else going on and you can see why our NICU experience took such a toll on us, physically, emotionally, and mentally.
Adjusting To Life At Home
On December 22nd, Scarlett was discharged from the NICU–just in time for Christmas. She got to go outside for the first time in her 73 days of life. While we were thrilled to bring her home, it wasn’t all sunshine and rainbows.
Blake and I were scared. After relying on a monitor for 73 days to know when Scarlett was breathing and when she was struggling, we were terrified. One of us did not leave her side for several weeks after we got home. Yes, that meant dragging her into the bathroom with us, too.
While Scarlett could drink from a bottle, she was by no means a pro. We had to continue sideline feeding her once we got home. She would also grunt, groan, and bare down, making feeding incredibly unpleasant for everyone.
Sometimes it would take an hour and all of us would be exhausted…and then we had to do it all over again two hours later. Continually putting on weight is extremely important for preemies, so we had no choice but to fight through it.
When she came home, Scarlett would only sleep while being held. I would go to bed from 11 PM to 4 AM while Blake stayed up with her, and then he would go to bed at 4 AM when I would take over. It was hard on both of us.
In case you didn’t know, a preemie doesn’t get to come home because they’re “fixed”. They have just met a specific weight requirement, gone a set period without having any apnea, and take all of their meals from a bottle.
A preemie is still premature until around the age of two. They will have two ages: an actual age (calculated from the day they’re born) and a corrected age (derived from their due date).
For the next two years, Scarlett will be developmentally 13 weeks younger than her actual age. So while she is four months old now, she’s only beginning to work on her newborn milestones at the corrected age of one month. It’s confusing, I know!
Life After The NICU
I am happy to report that Scarlett is doing fantastic! She is four months old, weighs nine and a half pounds, and is growing every day. Scarlett is checking off her newborn milestones and the doctor says she is a rockstar. She still struggles to sleep at night, but we’re working on it.
After much debate, I am no longer pumping (celebration emoji!). I thought that pumping would get better when Scarlett came home, but it only got harder. I started producing less and less and struggled to juggle her and pumping at the same time.
We debated trying to breastfeed, but since catch up growth is so vital to preemies and we wouldn’t be able to monitor how much she was eating plus I would lose the little bit of sleep I was getting, we decided not to.
Scarlett was also having some belly problems. After talking with our doctor, we decided to try Enfamil Gentlease Neuropro formula. It has worked wonders! She still has some issues, but they are not nearly as bad as they were. Plus, the formula is helping Scarlett pack on weight–she’s quite the little chunk.
It took some work, but Blake and I are back on the same page. We’re incredibly happy and settling into a routine that works for us. Even though Blake is back to work, school, and doing clinicals, he still gets up and feeds her during the night, helps with bath time, washes bottles, does the dishes, helps clean the house, offers to pick up dinner, and stays up with Scarlett when she’s having a rough night so I can sleep. I told you he was fantastic!
At times, I am still overwhelmed with having a newborn, but I’m also working on myself. I’m trying to get my positive attitude back and let go of some of the issues that our NICU experience created. I put a lot of pressure on myself those 73 days and it’s going to take a while to undo.
My NICU Advice
If you are going through your own NICU experience, the biggest piece of advice that I can give you is to be your child’s advocate. Yes, the hospital staff is there to help your child but you have the biggest voice and you should let it be heard.
Ask questions, follow up, stay informed, and ask more questions. If you have a problem with something, voice your concern. Fight for your child.
Take the NICU day by day. Some days will be great and you’ll feel like you have a handle on everything that’s going on and the next you will feel beat down and won’t be able to stop crying. That’s normal and it’s to be expected. The NICU is a rollercoaster of emotions and every day won’t be perfect–but all days won’t be terrible, either.
Find a way to cope with your feelings. Maybe you need to speak with a therapist (I did when Scarlett came home), go to the gym, or take a yoga class. I wrote my feelings down in a journal. It made me feel better and it was a great way to document our NICU experience.
If you need a day to rest your body or mind, take it. You can’t be there for your child if you aren’t well. I didn’t and I wish that I would have. Take some time for yourself and don’t feel guilty about it. It’s okay!
Find a routine that works for you. You might want to spend all day in the NICU. But if you have to juggle work, other children, or regular life (grocery shopping, cleaning, getting the nursery ready), it’s okay. You might only be able to visit your baby for 20 minutes a day or every other day. Any time is better than none.
Our Emotional NICU Experience
Our 73 days in the NICU were the most challenging, most emotional, and most isolating days of my life. I cannot imagine going through it again. I truly believe the antenatal steroids Scarlett received saved her life. Well that, and the power of prayer.
If you are going through your own NICU experience, know that it will come to an end. It’s hard to see that right now, but it will. You will get to take your baby home, feed them in their nursery, and bathe them in the bathtub. You will be able to sit on your couch and look at your baby simultaneously. I pray for strength during your time in the NICU. You can do it!
I couldn’t write this article without including a thank you to all who reached out to us during this crazy time. Blake and I received an outpouring of love, support, and generosity after Scarlett was born–and we are so very thankful. Every prayer and positive thought helped get us through our NICU experience.
If you know someone with a child in the NICU, send them a text to let them know you’re thinking about them. It will mean more than you know. And if you want to help out, get them a gift card to a restaurant that offers takeout. After spending all day in the NICU, the last thing you want to do is come home and cook.
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