Overcoming Infant Loss and the NICU with Priscilla

Priscilla is a survivor of infant loss and the mother of a NICU graduate. Her wish is for all women to experience complication free births. We met via social media where we’ve been following each other for years. She posted something for NICU Awareness Month and I asked her if she would share her family’s story and she agreed.

Overcoming Infant Loss and the NICU

Her first baby, her daughter, only lived a few hours after being born unexpectedly preterm at 22-weeks gestation. William, her second baby, was born full term at 40-weeks gestation and experienced meconium aspiration during his birth. He went on to spend 2-months in the NICU recovering from this and persistent pulmonary hypertension. Today he’s a healthy, happy and thriving 4-year-old.

Nothing tops the kinship you feel when you connect with someone who’s had the same or similar childbirth experience. Reading her story brought back so many of my own memories of progesterone shots and nights in the NICU. I can relate to the triumph of achieving a full-term pregnancy, after a preterm birth, only to have it end in a second equally complicated delivery.

We share this story in solidarity to highlight the experiences of families that have also coped with infant loss, preterm birth and having a baby in the NICU.

How did you handle being pregnant after the loss of your first baby, a preemie? 

Honestly, not that well. I knew from the moment I lost my first baby that I needed some serious mental health care. Though I went untreated since I didn’t have stable insurance or general access to any practitioners. So when I got pregnant again, I was extremely nervous and anxious all the time. I had flashbacks to my loss, especially whenever I had to go to the doctor and do ultrasounds. And I allowed my PTSD to kind of consume me at times. I became hell-bent on being able to control every single aspect of the birth.

I had a great OB/GYN but I disliked the hospital she delivered at, they had a higher c-section rate and were not very flexible on allowing mothers freedom and choice during childbirth. So I found a Doula thinking she might be able to help, but she was part of a group of doulas and midwives who were very pushy about natural birth and home birth. They swore that I could do this birth at home with a new midwife and I was coerced into leaving my OB/GYN and it did not turn out well. During labor, my son got stuck and we had to have an emergency transfer. Thank goodness, because he aspirated meconium and had persistent pulmonary hypertension (PPHN), which the midwife would not have been prepared to manage during a homebirth.

Did you have a high-risk pregnancy? Did you have to take special medication to ensure your second baby wouldn’t come early? 

Yes, from what I was told, when you have a loss, you will always be considered “high-risk” in subsequent pregnancies. The issue was that no one really knew why I lost my first baby. The main theories were that it was either a hormonal issue or that I had an “incompetent cervix.” So rather than actually do any testing on my hormone levels or anything, they just decided to go full-on prevention.

I had a regular OB/GYN and a perinatologist as well. My cervix was checked via transvaginal ultrasound every week from about the 3rd month of pregnancy up until I had an emergency cerclage placed at around 21 weeks. I lost my daughter at 22 weeks gestation, so when they noticed my cervix was getting shorter and funneling at 21 weeks, they were concerned it might happen again. I also had weekly progesterone shots for most of my pregnancy, which was not fun at all.

Were you aware your baby might be admitted to the NICU prior to the birth? 

Honestly, once we reached the 37-week mark, I did not think we would have any problems. I was confident that the worst was behind us since the issue before had been premature/preterm birth.

Do you remember your first day in the NICU?

With my daughter, who only lived a few hours: Everything was a blur. I was sleep deprived and still coming off Demerol and whatever else they gave me (my anxiety was at an all-time high, they had trouble distinguishing my heartbeat from my daughter’s when I first got to the hospital). It was small, crowded, pale blue lighting. Beeping sounds. I was terrified, and I only sat there for a short while seeing my incredibly tiny daughter in her isolette. It was awful.

With my son, who was in the NICU for 2 months: I didn’t get to see my son during his first two days in the NICU because I had a rough birth (fourth-degree tearing) and they kept me in the hospital for 2 days. But I remember when I finally got there. My husband wheeled me to the room in a wheelchair and I stood up to see my son. It was daytime. He was asleep, in a private, spacious room (he was in the more critical NICU area). He was intubated, tons of wires and tubes and things all around him.

I remember thinking he must be cold because he had no clothing on, just his diaper. I remember thinking he looked swollen (he was). I could see a tiny tear in the corner of his eye. It was incredibly painful to see him and to know I was not at all allowed to touch him. I was devastated.

Were you able to hold your baby right away or did it take a few days?

The first few days, I was only allowed to occasionally touch his hand lightly with one finger. After a couple days, I was allowed to help with things like diaper changes. It took a full week before he was finally extubated. When he was, it was very late in the evening. I’d been taking turns with my husband staying the night.

Our nurse was this incredible chipper woman, and sometimes I hated her for it because I was so upset but at that moment, when she said we could finally hold him, I could not thank her enough. My husband held him first, for just about a minute. Then I got to hold my son, and we did kangaroo care for about an hour I think. The entire world fell away and at that moment, it was just me and my little baby, holding on to me, so incredibly warm and soft. It was the happiest moment of my life to simply get to hold him.

How did you handle the emotional aspect of having a baby in the NICU after losing your last baby?

It was hard. Honestly, everything happened so fast with William (my son) that I was experiencing a whole new kind of trauma, adding to my previous trauma. I hated being in a hospital and hated being in a NICU again and was terrified beyond comprehension that I would lose another baby. But once that fear began to subside, I handled it as best as I could. I think my brain eventually learned to compartmentalize the traumas (at least temporarily) so that I wouldn’t be a mess all day every day.

Did you have a primary nurse or a consistent rotation of nurses?

For the first couple of weeks, he mostly had about 2-3 dedicated nurses (day and night shifts). When he got placed in a different room, where he was no longer as critical, he had a larger variety of nurses caring for him. It wasn’t until his last week or two that I found out I could request a dedicated nurse and I had 2 that stuck around the most toward the end.

What kind of support did you have for your postpartum recovery and NICU? Help with meals, driving to the hospital, etc. 

My parents were my biggest supporters, especially my mother. They took turns watching over our son when I or my husband couldn’t be there. They also helped with things like laundry and meals.

My husband isn’t the best at handling emergency situations. He tends to retreat into himself, so it was nice to have my folks around (although he did drive me most of the time and reminded me to eat meals and shower and such).

I handled most of the interactions with the doctors. I had a lot of friends checking in on me online which was nice (and at least 1 or 2 took me out for a meal so I could feel normal for just a little bit). My brother also spent a lot of time watching over my son in the NICU the first couple of weeks (but then he had to bow out when he got sick).

What was your most challenging experience in the NICU and how did you manage it? 

Convincing the hospital my son was ready to go home. He was very sick the first couple of weeks, but afterward, it was his recovery process that presented the biggest challenge. He had to be weaned off a large number of meds, including Fentanyl. They gave him morphine to wean him off that, and then something else to wean him off the morphine. But eventually, my son wasn’t on medication, and the only thing holding him there was that he wasn’t drinking a certain number of ounces at every single bottle feeding. He also had to have an NG tube during feeds, which I knew must be incredibly uncomfortable for him.

The doctors kept saying it might be another couple of months before he could come home. I felt this was ridiculous. Not everyone wants to eat the same amount each and every time and only at regularly scheduled times. I’m a strong believer in feeding babies on demand. And so I asked a few times if he could feed without the tube in place and they would say OK but then they would still put the tube in after.

I eventually called a meeting with all of his doctors and begged that he have 2-3 days without the tube to see if he could learn to feed without it, and still gain weight. Some of the doctors were reluctant, but eventually, they gave in. And wouldn’t you know it? We got to go home 3 days later. He was hungry as heck after the first day, and I’m sure his throat and nose were feeling better sans tube. It was at that moment that I learned that I had to be and will forever need to be my son’s biggest advocate.

When you went home did you feel ready and prepared?

I felt beyond prepared and also not at all prepared. I was terrified that something bad would happen, that he would stop breathing or something would happen while he slept. I became so accustomed to knowing all his vitals through the machines he was attached to that letting those go was extremely nerve-wracking. But I also felt ready to finally start mothering on my own, in my home, to finally start to enjoy my baby for the first time ever.

Did you receive a referral to your local regional center and if so, did your son require any speech therapy, occupational therapy, etc? 

We followed up with a number of specialists and he was basically cleared of any problems in the short term. The hospital set up all the appointments for us.

Have you had a child since and if so, how did you cope with being pregnant after having a preemie?

No. Honestly, between my first preemie and loss, and my difficult experience with my son in the NICU for months (and my birth traumas), I don’t feel like I’m in the right space yet to have any more children. I don’t know if I ever will honestly.

Overcoming Infant Loss and the NICU

How are you doing now? How is your little one? 

My son is thriving these days. He’s a few months shy of 4 years now and he’s incredibly chatty, friendly, sweet, energetic. While I’ve physically recovered, my traumas are still there. I work with an EMDR therapist now and it has been effective in calming a lot of my triggers. I hope someday it won’t affect me so much, though I wonder if that will ever actually happen. For the most part, though, I’m good and mostly thankful to have my little one in my life.

Priscilla Blossom is a writer, she lives in Denver, Colorado, with her husband and son. You can find her on Twitter, Facebook, Instagram and Romper, where she regularly publishes about motherhood.

Priscilla’s story highlights a few important things:

Advocating Effectively

The NICU is an ICU for babies. They see a lot of sick infants and have rules, procedures, and protocol for everything. So although it’s a very special time for you, for NICU professionals, they focus on their proven methods to get specific outcomes. As a parent, you have to collaborate with the staff to try things differently. You may also need to speak up more than once to have your voice heard.

Birth and Postpartum Doulas

Doulas are non-medical professionals. We do not diagnose medical conditions or give medical advice. Our role is to provide you with evidence-based information and research to utilize in making your own decisions. We support your birth and parenting choices while providing physical and emotional support. If you find yourself feeling pressured by your “Doula,” this person is not acting within the scope of a Doula. Consider seeking support elsewhere.

Emotional Support

Pregnancy isn’t always linear, and when you’re already high risk, it can lead to anxiety, insecurity and a lack of confidence. A high risk of danger is the definition of “high risk” in the dictionary. Who wouldn’t be constantly waiting for the other shoe to drop?  Even when you feel like you’re okay, subsequent pregnancies can trigger unexpected emotions. Especially when you don’t have answers about why it happened a certain way the previous time around. Find a therapist or join a support group to help you work through unresolved trauma and anxiety.

Grief

No one plans to cope with the loss of a newborn. It’s a wrenching experience, an almost insurmountable feeling when it happens. They say grief commonly comes in five stages, in no particular order: Denial, anger, bargaining, depression, and acceptance. Emotional support from a professional trained to care for families who have lost a newborn is a great decision if you have that option. Joining groups for peer-to-peer support can be a solace as well.

Midwives

Midwives are great for low-risk pregnancies where there’s no history of complications. They are usually reluctant to accept high-risk pregnancies. If you want a midwife present at your birth, choose one who can proivde you with monitrice support. A monitrice will do everything a birth doula does, but she can also do clinical tasks, like checking dilation and heart tones. Then she will go with you to the hospital where you can deliver under the care of an obstetrician.

Postpartum Support

When your baby is in the hospital, it’s a big relief to have someone else handle meals, laundry, and transportation. Especially when you’re also physically recovering from a difficult birth. If you’re fortunate to have family nearby, they will often pitch in to help with anything you need. Find a housekeeper and have your friends put together a Meal Train if your family isn’t local.

Surrendering Control

During pregnancy and childbirth, anything can happen at any moment. You only have control over self-care and care provider choices. So eat well, take care of your body and mind, and choose a caregiver you trust. Beyond those decisions, stay flexible and try not to focus on a specific birth outcome.

Traumatic Birth and PTSD

A traumatic birth is a birth where there was a loss of control or maybe even a feeling of disempowerment. It could be a birth that went perfectly well and something happened to you or baby after the delivery. Studies have shown parents can experience PTSD up to 18-years after infant loss. PTSD is flashbacks, fear, feeling triggered, insomnia and anger, just to name a few symptoms. You are at risk for PTSD after infant loss, preterm birth, a NICU experience, and even an emergency cesarean birth.