Things I Wish I was Warned About

Having a baby admitted into the NICU is never a calm event. Instead, it is often kick-started with an extreme emergency with unknown outcomes. Unfortunately, despite the unit's best efforts to make every family welcome, the reality is that every staff member's first and top priority is the health, growth, and well-being of the babies. While on the Labor & Delivery, and Mother & Infant units, the reality is that every staff member's first and top priority is the health, recovery, and well-being of the mothers. Though these worlds are connected, they don't seem to overlap outside of a delivery room handoff once the baby is born. This means that new moms are not told what to expect before they are actively being buzzed into the NICU unit. At least this was the experience that I had when my baby was born, and in the event that other hospitals work the same way, I wanted to create a post that covered a few things I wish I had thought to ask about, or really wish someone had come and told me about before finding out by experience.

Please note that some of these may vary depending on your baby's gestational age when born, as well as your hospital's NICU setup and policies.

1. Your baby will not be in a regular crib. Instead, they will be in an enclosed, clear bed that looks like a fish tank with portholes, called an Isolette. Isolettes are a huge part of a baby's survival until they can regulate their own temperature and for our littlest ones, they even provide humidity to help along their skin's development.
   

2. Isolettes look like baby coffins when they are covered with blankets. This was a shock the first time I saw my baby's bed covered. During the visit before, her bed was uncovered and she was receiving a bilirubin treatment with UV light. The second time I visited her, her bed was covered in several receiving blankets that looked like funeral shrouds- I had an anxiety attack where I stood. I thought something had happened to her, and they had covered her until we got there. After I pulled myself together after being reassured repeatedly by my husband, I was able to ask my daughter's nurse why her bed was covered. The answer- to block out all of the light to protect her developing eyes and her brain. Overstimulation to a micro-preemie can cause brain bleeds. Check with your baby's nurse and see if you can bring in your own quilt or blanket to cover the isolette with- this will help bring a sense of control and home to a new place.
   

3. You can't hold or even touch your baby right away. This one is very dependent on what gestational age your baby was born at, but for Micro Preemies this is often the case, as their skin is still very, very delicate and could be injured with overhandling. It was over a week before I could touch my baby, and 39 days before I was able to hold my baby for the first time. (this can also vary on hospital policy)
   

4. There will be a TON of monitors, IVs, IV pumps, machines, and many, many beeps. Walking into what looks to be the control center out of a science fiction movie, and realizing all of it is to keep your baby alive is beyond overwhelming. You will be afraid that if you move the wrong way, or accidentally touch something it will be catastrophic. I strongly encourage you to talk with your baby's nurses and learn about each and every monitor, IV, pump, machine, and beep and what it does or what it means. Doing this will help make them less intimidating, and be the first step in being the absolute best advocate you can be for your kiddo.
   

5. Your baby won't be able to wear clothes right away. This is another item that is dependent on your baby's gestational age, as well as a medical situation. If your baby is in a closed isolette this means that they can not regulate their body temperature on their own yet and need assistance. They will not be able to wear clothes until they can regulate their own body temperature. When they do reach this awesome milestone, be sure that the clothes you bring in are practical for the hospital. Check out my Registry Must Haves post, under NICU must-haves for suggestions.
   

6. Scent Hearts & Crocheted Octopi are huge comfort and bonding opportunities for you and your baby. Scent hearts are sewn fabric hearts that you can keep on your person (suggested against the skin if possible) and then place into your baby's isolette near or under their head. The heart will carry your smell and your baby will feel calmer. The crocheted octopi are literal crocheted octopus stuffed animals. They are given to the babies to give them something that mimics the umbilical cord that they will grab ahold of, thus providing a safer and better alternative than the babies grabbing their life-saving cords, wires, and tubes. Ask your baby's nurse if they have any available for you to have, as these items are often donated to NIUCs. My daughter's octopi were made by a dear friend of mine.
   

7. There is a team of people working on your child's case. For my daughter, we had two sets of people we saw regularly. The first was the rounding team (they did medical rounds on the babies every day). This team was composed of the Attendings (the Main doctors), Fellows (doctors who are working on specializing in the field), Residents (a doctor who is still actively training in the field), Medical Students (individuals still in medical school), Nurses, Dietitian, Pharmacist, and any specialist who was needed at the time. This group met every day to discuss immediate care plans which included- reviewing new labs and imaging that was done, ordering new labs and imaging as needed, discussing current nutrients, medications, and supplements, and making changes, as needed, to support growth and development based off of growth measurements (weight, height & head circumference). The second team was the therapy team. This team was composed of the Occupational Therapist, Physical Therapist, Speech & Language Therapist and the Respiratory Therapist. They came in at varying intervals of the stay depending on their specialty and the needs of my daughter. Every single person on your baby's team is invaluable, and worth listening to and getting to know.
   

8. You have a voice in your child's care. Just like every member of your child's Rounds Team and Therapy team is invaluable and worth listening to, SO ARE YOU. That baby lying in the isolette came from you. You are literally wired to be in tune with your baby and their needs. That doesn't go away because they are in the NICU. I strongly encourage you to figure out what Rounds and Therapies look like in your NICU and participate. For rounds, It might be extremely intimidating at first, all these well-educated individuals having fast-paced discussions in what can only be described as NICUeese, a language brand new and barely understandable. But continue to advocate for yourself and your baby. If they are going too fast for you to grasp everything, interrupt and ask for clarity. Take notes, do research, and go back the next day with questions or at the very least an understanding of what they are doing. Eventually, you will learn the language so fluently you will have no problem keeping up, making suggestions, and being a vital and educated decision-maker for your baby. The only way to do this though is if you make a deliberate effort to learn and participate. Show up in person as often as you can. If you can't physically be there request they call you during them, and if they can't do that, then request someone call you to update you on how they went and what decisions were made later in the day. You, as your child's parent, have a legal right to know what is going on with your child medically, as well as a say.
   

9. Family Meetings are a thing. If you, at any point feel you are not being heard, no one is taking the time to explain anything to you or you feel there is a disconnect between members of your child's care team, you have the right to request a family meeting. Often you would do this by putting in a request with the NICU Social Worker. Be prepared to articulate why you want the meeting called, as well as who you would like to have attended this meeting. The social worker will coordinate a meeting time and the meeting will be held. Be prepared to present your grievance, ask your questions, or simply lead the meeting to get the information you are after. During my daughter's stay, we had three family meetings over her 245 total days in the NICU. The first one was to have a longer discussion about her progress and create a plan going forward. The second meeting was to realign the team, as things seemed to have derailed as different specialties were focused on different things and didn't seem to be communicating. The final meeting was to discuss the pros and cons of a g-tube placement. Each meeting was vital to the progression of our daughter's development and worth every minute.
   

10. Spending every waking moment at the NICU is an unhealthy thing for both you and your baby. I will get mixed responses to this, but hear me out. I know how hard it is to walk out those doors, walk to your car, and leave your baby with strangers. I know how stressful it is to leave your ringer on full volume while you are away, and the sheer terror every time it rings. I know the fear as you rush down the road after a phone call that brings bad news. I know the desire to sit and stare at your baby, or stare at the monitors just to reassure yourself that your little one is going to be okay. I know what it is like to wonder if your baby is going to make it through the night. I know. I promise. And because I know, I don't make this claim lightly. You need to leave the NICU, leave the hospital, and find a way to take a break. If you do not implement boundaries around your time at the NICU you are going to burn yourself out, increase your anxiety, and impede your own healing, both physically and mentally. Not only that, if you are always in your baby's room, you run the risk of keeping your baby awake, and/or overstimulating them. Newborns need lots of sleep when they are born, preemies need tons of sleep when they are born. Being in their room with lights on, doing something on your phone, watching TV, having conversations with medical staff, and constantly peeking under their blanket to look at them, will all affect your baby's health and development. I am not saying don't spend time with your baby, that is also ill-advised from a bonding, growth, and development perspective, what I am strongly suggesting is to be strategic about your time with your baby and the NICU. I realize how challenging this idea is to the mama brain so I wrote a separate post with the steps I used to help come up with a functional daily schedule to use while my daughter was in the NICU.

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