What they don’t tell you – From day one with a premature baby.

What they don’t tell you – From day one with a premature baby.

One of the most important pieces of advice when you’re expecting is to have a plan, but not to have your heart set on that plan. I was prepared for many possibilities, however, delivering our first child at 27 weeks while out of town for the weekend was not one of them.

Delivering a preterm baby is life-altering. I’m not sure the feeling of guilt will ever leave my being and I’m also awaiting the day that I don’t mourn a “normal” pregnancy. The grief is real…according to “Dr. Google” and other moms (parents) who have given birth to premature babies. Prematurity.org even has a term for it- “Ambiguous Loss”. The more I research the topic and read comments on Preemie Support Groups, the more I realize that I am not alone and, in fact, what I’m going through is normal. Awareness of PTSD in NICU parents is slowly growing, but the communication of what to expect, along with professional prevention and treatment plans are virtually non-existent. Thank goodness for support groups and social media that help create premature birth safe zones.

I am blessed and cursed with the ability (well I really have no say in the matter) to turn my emotions off in a time of crisis. While great under pressure, when that pressure is gone, the fallout emotions tend to present themselves at the most inopportune times, whether days, months, or years later. I didn’t begin the true grieving process and to feel strong emotions that come with such an intense entrance to motherhood until my daughter, B, was about 2 years old. I still have not fully dealt with the all of those feelings and in fact, as the years go on and our bond grows stronger, her story becomes harder, if not impossible, for me to tell.

As I try and navigate these periods of depression, grief, and guilt, I’ve been able to recognize similarities and sort certain thoughts. It is my goal to try and shed some light so that other preemie parents may feel less alone and so that friends and family of preemie parents may develop a better understanding of what their loved ones may be going through from their NICU stay and beyond. Everyone’s story is different with varying degrees of fight for survival, possibly loss, and health conditions, but here are a few things that I experienced that no one tells you when you give birth to a premature baby.

1- You may feel helpless and useless. Your world will become overstimulated with watching your baby struggle to survive it’s entrance into the world, incubators, wires, tubes, beeping, plastic wrap to protect your baby’s delicate skin, phototherapy lights, TPN, PICC lines, antibiotics, possibly surgery, blood transfusions, doctors and nurses on rotation, and pumping. You may feel like you’re in an alternate reality and there isn’t anything that you can do about it, but wait and observe like a spectator. You are still the most important person in your baby’s life, however, your baby is in the care of medical professionals and without them, you’re useless. These feelings of vulnerability may continue after the NICU phase and into the first few years of your child’s life as you navigate the effects of premature birth and conditions that your child may have as a result of. Just because your baby graduates from the NICU, it doesn’t mean that the trauma and medical care ends there. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

What they don’t tell you- From day one with a premature baby. On feeling helpless and useless. Totally vulnerable on Day 3 when we got the news that B had fallen terribly ill and was in septic shock.

 

2- You may long for some sort of attachment to your baby. When you’re thrown into motherhood prematurely, your body and mind may be left playing catch up. You might not be able to hold your baby right away and because of this, among many other reasons, you may be left longing for some sort of attachment with your baby. Hands through incubator holes can only take you so far along the path to bonding. I knew I loved my daughter and had to protect her, however I didn’t feel any sort of real attachment for the longest time. In fact, it wasn’t until my daughter was roughly 8 months old that I finally started to feel a sense of bonding and comfort. I think back to my routine during B’s NICU stay and if it were now, I would have been there for every single everything that I could. I would be hard pressed to leave her side. But back then it was different. When we got the call for blood and plasma transfusions in the middle of the night during that first week, I woke up to the call, gave my permission, and went back to sleep awaiting my next pumping session. How terrible I feel now that I didn’t get in my car to hold her little hand through that! What was wrong with me?! (I’ll be getting to that guilt part though.) Before then it was adrenaline pushing me to do the right thing through the shock. I loved her, but she felt like a stranger even though she grew inside my body for 6 months! Now I can’t live without her. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

What they don’t tell you- From day one with a premature baby. Containment holds with one hand on head and one hand on feet help to calm and habituate a premature baby to positive and loving touch.

 

What they don’t tell you- From day one with a premature baby. When not doing Kangaroo Care, this is how they napped together.

Often, a preemature baby will be swept away immediately if in distress, most likely because oxygen is required. The NICU team may try to intubate as soon as possible to lessen the chances of brain damage due to a lack of oxygen to the brain. It could be days or weeks before you hold your baby for the first time. Those perfect welcome baby photos of a proud beaming dad (or partner), exhausted mom, and sweet swaddled babe, soon become an impossible dream. Unless you have that taken away from you, it is hard to understand and empathize with someone who is going through or has gone through that. Not only are there effects on the baby, but the parents as well.

What they don’t tell you- From day one with a premature baby. My first hold on Day 2. Many parents have to wait far longer than a day to hold their preemie baby. We were lucky.

 

What they don’t tell you- From day one with a premature baby. Our first family photo on Day 1. Far from what we imagined it would be.

 

What they don’t tell you- From day one with a premature baby. Our second family photo on Day 6. Thank you to my Father-in-Law who’s never without his camera.

 

3- You’ll have to behave as though you have a newborn (which you do), however, outside the hospital you physically don’t. You don’t get to be at home with your baby. You have to say goodbye to him/her through little arm holes of an incubator and carry on your parenthood life sans baby outside of the hospital for an unknown period of time. You’ll phone at certain time intervals to check in like you’ve left them with a babysitter for the night. If you are able to produce breastmilk, there are no nighttime feedings, there are only alarms reminding you that it’s that time to pump again. You’re attached to that breast pump at regular 3 hours intervals as if needing to nurse a hungry baby, however, there is no baby to physically make contact with and boost supply. You’ll have to bear the site of parents with babies out in public and may long for the day when that can be you. It can be so depressing and draining. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

4- The joy of certain things may be sucked right out. Certain things that shouldeither happen normally or as part of a transition just aren’t the same when you’re in the NICU. Bathing, breastfeeding, changing diapers, haircuts, cuddling, etc are just not as joyous as they would be at home.

What they don’t tell you- From day one with a premature baby. So excited to be able to change her diaper for the first time!

 

What they don’t tell you- From day one with a premature baby. First “bath”.

 

What they don’t tell you- From day one with a premature baby. Reading bedtime stories.

Breastfeeding– If a NICU mom is able to and wants to breastfeed, the process of breastfeeding in the NICU can be traumatic. What for many women is a routine bonding experience or just a task of feeding their baby as they scroll through their Instagram feed, is far from that when you have a premature baby. This is not to say that breastfeeding is without complication or pain for other moms. The joy is sucked out when you have to strip down your baby, weigh them on a scale that

What they don’t tell you- From day one with a premature baby. Working on breastfeeding. Weight before and after feed.

you can only hope will be available when your child is hungry (you have to search through the pods for 1 of 2 or 3 scales for the entire NICU), try and get into a comfortable position (while juggling breathing tubes, an NG tube, wires- Oh the wires!, and nipple shields), pray to whatever you can that your baby actually consumes milk before they desat so many times that a nurse tells you that “we’ll have to try again next feed”, and weigh your baby post-feed with the hope they hit the desired threshold while not burning too many calories to be considered ready to go home. I loved my lactation consultants, but that breastfeeding experience for a first time mom with no experience is horrific. Not to mention how exhausting it is for your preemie baby.

What they don’t tell you- From day one with a premature baby. How Dad gets to help feed for the first little while. Breastmilk from a syringe through an NG tube.

What they don’t tell you- From day one with a premature baby. What I returned to one afternoon- B’s first haircut to attempt placement of a PICC line in her head as the arms and legs were repeatedly unsuccessful.

Haircuts- How many parents get their phones ready to record their child’s first haircut? It becomes a public event! When you have a preemie baby, your baby’s first hair cut may be to shave a spot in their head for a PICC line or for something surgical. You’ll make the best of it and store the memory away as a first hair cut. Then when your child goes for a haircut as an older child, you’ll remember it all over again like it was yesterday and may breakdown.

It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

5- You may become jealous and feel hate or bitterness like you didn’t know you could. This is one of the most common comments that I read when researching PTSD with NICU moms. After having a premature baby, you may become jealous of your friends and other women in general who are carrying past your point of delivery and who deliver full-term healthy babies. You don’t want to feel that way and you may be shocked at what thoughts circulate through your mind or even flow from your mouth, but you do. You may also experience disgust towards those who don’t take their pregnancies seriously or those who complain about how they just want to deliver their baby already towards the end of their third trimester. Friendships may become strained because of this as well. Parents of preemies may skip New Moms Groups and other parents groups because they cannot handle having to socialize with a group of people who don’t “get it.” They cannot handle hearing comments that aren’t meant to be, but are offensive to a parent of a preemie. As the years go on, if there has been a diagnosis of some sort or condition to live with due to prematurity, these feelings may be amplified towards those who “don’t get it” and the gap to distance yourself may keep growing. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

What they don’t tell you- From day one with a premature baby.

6- You may experience guilt like no other. This is one of the worst parts, if not the worst part for me. As the mother who carried my daughter, I felt like all I had to do was keep her safe to allow her to grow and develop for 9 months and I couldn’t do that- I had one job. There was something with my body that failed her and we’ll never know why it did, but it did. Those thoughts of “did I do this?” or “should I have done this?” will never leave. They become more distant thoughts as time goes on, but every once and a while they return to make it all real again just in case you had forgotten. If anything goes wrong for your premature baby or there is further diagnosis due to prematurity, the guilt may amplify even more. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone. 

7- You may have to fight the “preemie immune system battle” on a regular basis. This could get ugly and you have to shake it off knowing that you’re being the best advocate for your child. People can be ignorant to the fact that a preemie’s immune system isn’t like a regular baby or child’s immune system and that actions need to be taken accordingly especially during cold and flu season or in social situations. You may be called names and witness many eye rolls. In all fairness, you can’t expect everyone to “get it” no matter how much it may stress you out and upset you. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

What they don’t tell you- From day one with a premature baby. Home time!

8- You may develop a whole new level of respect for nurses (and the rest of your child’s medical team) and possibly be anxious to leave the NICU. Leaving the NICU was hard, not just because it was terrifying to be finally going home with this still oh-so-tiny-baby who’s life is now solely in your hands, but because you may feel like you’re leaving a second family- a second family who “gets it” and lives through this struggle with you as your support team. B spent just as much time during the day being cared for by a rotation of nurses as she did with me. Even when with me (and her dad), she was still being monitored by a nurse. They are the faces to whom you greet in the morning and say goodnight to at night. They are the ones who are being trusted to guide you into this parenthood detour while taking the best care of your newborn baby who is fighting for their life. They’re the ones who you converse with on the inside while the rest of the world is carrying on on the outside. So you may feel it’s terrifying to have to leave without that support system you’ve grown so accustomed to. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

9- It may get harder before it gets easier. The emotional rollercoaster of a preemie parent is a wild ride. It took me a long time to feel anything. Now I feel all the feels and cry often. Navigating a world with Cerebral Palsy, I cry a heck of a lot more. Not because I wish things were different, but because I cannot shake the feelings helplessness, uselessness, and guilt. It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

What they don’t tell you- From day one with a premature baby. Ready for the ride home to Edmonton in the Stork Incubator with the NICU support team.

10- BUT At the end of it all, you will feel more joy than sorrow. I hope you do. I firmly believe that we’re dealt what we can handle and that people are in our lives for a reason. B was brought into this world this way for a reason and someone knew that we could offer her exactly what she needed while allowing her doing the same for us. So if you have a friend or family member who has a premature child, be patient with them, as there will be good and bad days.

It’s normal to feel this way and it hurts so bad for a long time, but you’re not alone.

~Love Mercedes

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13 Comments

  1. Carole Anne
    April 17, 2017 / 2:54 pm

    Wow. I have tears in my eyes. I never knew all the emotions and challenges of moms with preemies…. this what tough to write I’m sure but I admire your courage. I hope you are all doing well. I will definitely share this if I know a mom with a preemie in the future. Xoxo

  2. Carole Anne
    April 17, 2017 / 2:55 pm

    Wow. I have tears in my eyes. I never knew all the emotions and challenges of moms with preemies…. this was tough to write I’m sure but I admire your courage. I hope you are all doing well. I will definitely share this if I know a mom with a preemie in the future. Xoxo

    • liveitallin
      April 17, 2017 / 10:22 pm

      Thank you for the kind words. I took me a long time to write and find the right words, but it needed to be done. We are doing well.

  3. Loni
    April 17, 2017 / 9:32 pm

    I cant thank you enough for posting.

    • liveitallin
      April 17, 2017 / 10:11 pm

      You’re so welcome.

  4. Sarah
    April 18, 2017 / 3:50 pm

    So well written and so much truth. My son was born at 31 weeks and has CP. I completely relate to it all. Xx

    • liveitallin
      April 18, 2017 / 8:56 pm

      Having to navigate a world of CP after a premature birth is another world of it’s own too. Thank you for the comment. 🙂

  5. M
    April 18, 2017 / 8:23 pm

    Loved it! My daughter came early as well and there were so many things you wrote that hit home. Leaving the hospital without her felt wrong, waking yourself to pump in the night just reminded me of how different our first few weeks were from what I had imagined.
    One positive I got from it was that when she did come home and woke in the night, I felt lucky to get up and feed her. 7 years later and I still look at her and just swell with happiness that things turned out the way they did.

    • liveitallin
      April 18, 2017 / 8:54 pm

      What a great comment! You are so right. Getting up with them once they’re home is so wonderful. Very lucky feeling.

  6. Heather
    April 19, 2017 / 12:20 am

    I don’t know how I found this, but I’m so glad I did. I’m sitting here holding my 31 weeker, who’s now home after spending 70 days in the Nicu. Everything you wrote hit home and brought me to tears. Thank you for sharing your story

    • liveitallin
      April 21, 2017 / 8:58 pm

      Thank you so much for the comment Heather. Congratulations on getting to go home. What a huge step in your lives. So glad that my story could make those emotions real for you. Take care and preemie power to your precious 31 weeker.

  7. Jess
    June 1, 2017 / 8:33 am

    I never comment on these types of things. I met you at St. Albert center and fell in love with your blog (I have done countless activities with my kids from it). June is my twins birthday month. They will be three in 21 days! They were two 9 weeks early. Reading through this post has brought me to tears. Remembering where they started and how far they have come. And knowing others have similar journeys. I don’t have any preemie friends and all my friends with “normal” pregnancies have no idea. I was grateful I found this today. Thank you.

    • liveitallin
      June 5, 2017 / 7:45 pm

      Hi Jess, Thank you so much for the comment. <3 I rarely comment on things either but really appreciate yours! It was such a wonderful way to start my day! If you ever need to talk about preemie stuff...I'm always here to lend an ear.

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