What to Expect, When You Weren’t Expecting A NICU Baby

So, let’s say you were expecting a baby you just weren’t expecting a preemie baby or a baby who would need to stay in a neonatal intensive care unit or NICU. But here you are so, now what? Well, I’ve been there, so I have compiled the sum of my firsthand experience, research, and observations into this guide. However, I must tell you that I am not a doctor or a medical professional of any sort. I am merely a mother whose child was born at 28 weeks gestation weighing just under 3 lbs, spending a whopping 65 days in a level 3 NICU. Jack was never ventilated or on extra oxygen. He was given a little pressure using room air, and a CPAP machine, for additional help breathing. At two weeks old, he suffered from a staph infection; but he kept fighting and growing. Jack also had bilateral IVH, grades 1 & 2, which both resolved on their own. 

Part One: Surviving the NICU

I like that word surviving because with survival comes guilt and if you spend any amount of time watching your child and the children of others battling for their lives in a NICU, you come away feeling like a survivor after your baby comes home with you. You might even experience symptoms of post-trauma when you leave the NICU. I had a lot of support from family and friends when we were in the NICU. I was given a lot of really great advice from nurses and others which I will share with you below, but this list also includes guidance I wish I’d been given at the time.

1. Don’t beat yourself up. So, you just had a baby only three hours ago and the gut-wrenching realization that they will be staying in the NICU for at least a couple of months is really setting in. This is not the time to be wasting precious energy blaming yourself. You must continue to sleep and eat, as well as the multitude of other things that are now required of you as a new parent, specifically a new NICU parent. It’s okay to cry, frequently, hysterically, but you must cry and multitask so pour tears and pump colostrum in tandem.

2. Just because you cannot hold your baby, doesn’t mean you cannot bond with them. Preemie babies experience a freakish amount of overstimulation while in the NICU. So any time they can spend in their incubator sleeping peacefully and quietly is good. Many very pre-term babies cannot withstand much physical contact at all at first. However, you can talk to them. Even if it’s through the sealed doors of their incubator. Offer them words of encouragement and remind them how much their fight means to you and how proud you are of them. Tell them what home will be like. Tell them anything but try to whisper. Please note I am not discouraging kangaroo care or skin to skin time with your little one, please do it as much as the staff will permit and then some.

3. Pumping sucks, literally, but you are going to be doing a lot of it, so make room in your freezer. Also, invest in a little igloo cooler for transporting frozen milk. Especially if you live far away from the hospital. You’ll be muling milk for your little one in-between creating it and harvesting it. It’s insane how much pumping you will be required to do, and all the food and liquid you will have to force yourself to ingest during this extremely stressful period. Also, sign your preemie up to receive donor milk in case of an emergency if the hospital asks you. Don’t let your pride stand in the way of this critical piece of paper. If something happens to you and your baby needs milk you don’t want there to be any delay in their receiving it because that paper is not already on file.

4. If friends and family members offer to help, let them. You won’t have much time or energy for things like cleaning, cooking, laundry, and errands. Graciously accept any help you are offered. If they are not offering to help, they may not quite understand what you are going through. Be vocal. Do not be ashamed. And speak to your social worker at the hospital and find out about any programs available to the NICU parents and take advantage of whatever you can.

5. Always, be polite, and respectful to the entire hospital staff, even the volunteers. Try always to be calm, collected, and drama free while on the unit. Your baby will get the best possible care from the best possible nurses that way. By best possible care I mean that, of course, all nurses care outright but if you are easy for the nurse to be around then the odds that they will be around your baby consistently are pretty good, and consistency is key when it comes to your babies’ nurses. You want them to know your kid’s behavior so they can recognize changes, etc.

6. Know when to back off. There will be “incidents,” and “episodes” and “spells” and your babies’ incubator will light up, and alarm like a god damn Las Vegas slot machine, and in those terrifying moments, you will need to do something that goes against your natural urge to protect your child. You will need to back up, back off, and let the staff do their job.

7. Trust your gut. If something doesn’t feel right to you, if your baby is acting differently, if they are just not being their usual self, express that concern. Leave a note for the doctor if you must. A parent’s instinct is a vital addition to your child’s bedside. Use it. You are your babies best advocate.

8. Stay positive. Try to focus on the things your baby is doing, not the things they are not doing. Celebrate all their victories, even the little ones. Don’t compare yourself and your baby to others. And try to stay off the internet as much as possible and avoid researching stuff and freaking yourself out. Stay focused and stay present for this NICU journey. Take pictures to document your child’s heroic battle it will help you see the beauty in all the ugliness.

9. Stay away from the public as much as humanly possible (they have germs). Always keep tissues and hand sanitizer in your pockets. Practice frequent and complete handwashing. If you have been out at work all day, or out running errands, do a quick shower and an outfit change before you head to the NICU. Also, disinfect your phone with alcohol wipes or hand sanitizer before you take it up to the NICU.

10. Remember that you are stronger than you think. You can do this, and so can your baby.

Part Two: Life after NICU

Germs and public outings:  Before we brought Jack home from the hospital, we made the decision to limit his exposure to public areas for the first year. No shopping malls, or grocery stores, no parks, restaurants, or coffee shops. Basically, we didn’t take him anywhere but his doctor appointments. We would take him out for walks in his stroller, he loves being outside. Close family members and good friends would come and visit as long as they had their whooping cough vaccination and weren’t displaying any signs of cooties. I even made my nephew wear a mask around his new baby cousin. Especially during cold and flu season. Our choices may seem extreme, or unusual to some people, but we did what felt right for us in our unique situation, and I would encourage you to do the same.

Kangaroo care: When Jack first came home from the hospital, he wouldn’t let me put him down even for a minute without crying out in terror. As he got older and stronger and more confident, he got better but still wanted me to hold him all the time up until he was able to walk and even then, he would need a lot of cuddling. He would sleep on my chest almost exclusively in those early days. I also did a lot of baby wearing and rocking him. In the NICU, you learn a lot about the benefits of what they call “kangaroo care” those benefits continue even after your child comes home with you.

Feeding time: When Jack came home from the Hospital, his appetite increased dramatically. He was always an eager eater in the NICU, but he really started to thrive once he came home. Before we left the NICU Jack was mainly drinking fortified breast milk from a bottle, and his doctors wanted me to limit the breastfeeding to once or twice a day only. As Jack’s demand went up…my milk decreased. Between not being able to put him down, pumping, mixing, washing…and everything else. I just couldn’t keep up. Jack got to where he didn’t even want to try to nurse…he just wanted that bottle. I decided to accept that breastfeeding just wasn’t happening for us…that he wanted to be a bottle baby…and I wanted our schedule to be less chaotic…we needed a little order. So I switched to formula exclusively. It was a hard decision for me to make…I felt defeated. I had planned to breastfeed…but I also planned to carry my baby to term…sometimes things just don’t work out the way we intended. So Jack made the switch, and we were all much happier. We found a nice family rhythm. Jack would have a bottle every 2.5 to 3.5 hours. His formula was Enfamil, Enfacare 22 Cal with Iron.

Weaning: Jack started really getting into solid foods around 6 months actual age. He just wasn’t quite ready before that. Some baby foods I made from scratch but some baby foods he preferred store-bought. He loved my applesauce, banana-avocado, carrot-avocado, but he preferred store-bought sweet potato, green beans, and peas. Jack also loved oatmeal, I would give it with his bottle for his reflux. On top of having reflux as many preemies do, Jack also had an extremely sensitive gag reflex. Sometimes food would make contact with his tongue or his throat in a way that gagged him once, and he would just lose it. Soon he became afraid of gagging. Jack to this day is a very picky eater with a lot of food anxiety that has everything to do with being a NICU baby and a preemie.

Tummy time: Tummy time? You mean tantrum time? As I stated above, in those early days Jack did not like me to put him down even for a minute, and tummy time was no exception. However, he became much more tolerant of it as he grew older and bigger. When he was smaller, he HATED tummy time, he would either have a tantrum or fall asleep. Then he moved on to playing with his toys on the floor and rolling on his back and playing with his feet. You know, typical cute baby stuff. It wasn’t easy to tolerate those tantrums, and you have to time tummy time strategically around feedings. However, tummy time is an excellent time to air out their butt, and I recommend an extraordinarily soft and pleasant feeling blanket that is washable to place directly underneath them and then a puppy pad under the blanket so if your baby pee’s it doesn’t soak thru the blanket into the carpet. It will hit the puppy pad instead. This method works until your little is able to crawl off the baby blanket.

Bedtime: When Jack first came home with, he would only actually sleep, if he slept on me. However, we would regularly put him down in his crib throughout the day so he could get a feel for it. Jack started sleeping thru the night in his own crib, at around four months old. He would have his last bottle between 8-9pm, then a snuggle with me, or dad, or grandma, until about 10pm. After which Jack would go in his crib, and typically sleep from that point until approximately 8am. He would not wake up to eat at night, however, sometimes he would cry out so we would come running in and pick him up, after which he would fall right back to sleep.

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