Having a premature baby is hard enough on your family emotionally, now you’re overwhelmed with your baby in the NICU (neonatal intensive care unit) which is an emotional rollercoaster. For me personally I found the guilt of having my baby prematurely and needing the NICU was really difficult to overcome. Not to mention all the other challenges of being in the NICU as well. Here are some tips of surviving your baby’s NICU stay.
1. Understanding the NICU schedule/workflow
As a former ICU nurse it was easier for me to pick up on the nurses workflow and how the NICU nurses scheduling worked, but I did need to explain this to my husband who is a non medical person.
The nurses put our baby on a care time schedule, where every three hours they would do what is called cluster care, meaning they would wake the baby up to change his diaper, take his temperature, feed him, get labs, etc. Once done, the baby is then left to fall back asleep and they close the isolette for a temperature controlled and safe environment.
If you want to hold your baby or do kangaroo care, usually the nurse suggests for you to hold your baby during the entire sleeping window in between care times. Knowing your care time schedule helps you to plan the day and visitors if they want to see the baby while they are awake. But for the most part during those early stages, it’s best to keep a quiet and calm environment for baby to sleep in between care times seeing this is when they do a lot of growth and development.
2. Knowing your care team
There will be so many people helping to care for your baby, and it can be confusing as to who is who. You will see your nurses the most, they are the ones who provide most all of the hands on care to your baby, and they are a wealth of information. They are not only great teachers, but can help communicate with the doctors and help advocate for your baby.
There will most likely be a team of providers overseeing your baby’s care, and you will most likely see them gather as a team during rounds. It can be confusing and overwhelming to see so many doctors gathered around your tiny baby.
There will be the attending physician who is the head honcho of the team and they have the final say in the care. Usually the resident or fellow (doctors in training), or may be an advanced practice provider aka APP (NP or PA) who is presenting information to the attending, and suggesting a plan, the attending then may make a different suggestion or approves the plan of care. So out of the two people talking, why are there so many providers? There is usually only one resident or APP assigned to your baby, and the rest have different babies they are caring for, but they all gather to learn and discuss each case.
If your baby is on oxygen and requires a ventilator (breathing tube) you will see the respiratory therapist or RT. They are responsible for the ventilator machine and any other machines such as bipap or high flow nasal cannula oxygen. In most hospitals the RT also gives any breathing treatments in the ICU settings as well.
Because your baby was born premature you will most likely also be seeing occupational and physical therapists who will come assess your baby. The physical therapist usually assesses if your baby’s physical development. The occupational therapists help to assess your preemies ability to eat, which in order to get home is really important. They help with feed training with your premie. The actual sucking reflex doesn’t develop until week 34-35 in a baby, so in the mean time your baby will be fed via an Intravenous fluids through a central line or putting breastmilk through a feeding tube that goes directly to your baby’s stomach.
Other health care teams may be involved in your baby’s care depending on the situation, your primary care team may request a consult, meaning they ask a specialized team of providers to see your baby if it is indicated. This is similar to seeing a special service while outpatient, like going to your cardiologist for your heart, or a dermatologist for skin. These teams then discuss plans with the primary team who will then proceed with the plan.
You will also most definitely see a lactation specialist while in the NICU as well, not only to help with feed training and getting your premie to latch when they are showing they are ready, but also to help with pumping breastmilk for your premie if breastfeeding is your goal. If you are like me and had your baby before that 34-35 week mark where they develop that sucking reflex, then you will need to use a breast pump to get your milk to come in and to supply milk for your preemie. All of which is no easy feat, and the lactation specialists are wonderful supports to help you.
3. Helping care for your baby while in the NICU
Even though your baby is tiny, and it may be intimidating to try and help with their care, it is really beneficial for your baby for you to provide as much care as allowed. Your voice, smell, and touch are comforting to your baby, and they will know when you are there. Changing your baby instead of having a stranger change them helps reduce their anxiety and helps with their sense of security. You can always ask for help, or ask the nurses to show you or talk you through how to do something if it’s your first time.
Even being present, talking to your baby, or giving them a “hand hold”, meaning placing your hand on their chest/belly, and on their head while the nurse takes their vitals or draws labs helps to calm your baby’s nervous system. As well as the classic shhhing sound to mimic the womb helps.
If your baby is stable enough for you to hold, kangaroo care or skin to skin is so beneficial for your preemie and you should advocate for it if it’s what you want to do. Skin to skin helps with your baby’s temperature regulation, calms their nervous system, helps regulate their heart rates and respiratory rates, helps your breast milk come in, and is great for bonding with your preemie. It may not seem like you are doing much when you’re holding your baby, but it’s so beneficial for you both. I treated skin to skin like my job while we were in the NICU, and it was so beneficial for my son. It doesn’t have to only be mom who does skin to skin, dad can do it too!
4. Advocating for your baby and family
This was the hardest part for me. Being a nurse practitioner I didn’t want to come off as too pushy towards the nurses and care team. Trust me when you are disliked as a patient/family it sets a different tone for your entire hospitalization. So I was scared to speak up in fear that it would backlash. Advocating while also working with your care team to get your baby home can be challenging.
First off, most ICU’s like to keep the same nurse assigned to a patient to help with continuity of care, the idea being the nurse knows the patient and family and can build a rapport. Which is great, except when there is a nurse that you may not agree with, or just may not vibe with your family. Being an ICU nurse and now NP, I knew how impactful my presence was to my patients, but being on the other side of it was an eye opener. The nurse assigned to my premie set the tone for the entire next 12 hours, and it literally would make or break my day or night. Being flexible with how different people do things is definitely a necessity, however there may be circumstances where a particular person may not be the ideal fit for your family. In which case, I recommend asking to speak with the charge nurse during the following shift and state your case in the most polite way possible to ask for the nurse not to be assigned to your baby anymore. I have been on both sides, the charge nurse, and now the NICU mom, and in most cases the nurses are understanding and accommodating.
You may have to advocate for your baby in other ways, like with the provider team. Which can be even more challenging. The providers and doctors tend to change on a weekly basis, so the plan one week may change drastically the next week. Speaking up and advocating for your baby is really really important, because you are the only constant, everyone else changes shift to shift, day to day, or week by week. If you know if something works for your baby or something that doesn’t, speak up. I was fortunate enough to be able to stay in the NICU for the entire time my baby was in the hospital, there were things that the nurses would miss in documentation, or occurrences that the doctors didn’t know about. Even just our feeding routine I would have to explain to the doctors every time someone new would see our son. It’s part of parenting, but it’s especially hard with so many doctors standing around with their computers and charts, and you know you all have the same goal. But ultimately you are your baby’s only advocate, they can’t speak for themselves so as a new parent in this stressful situation, you have to find a way to do it.
5. Sleep and Self care
Some NICU’s have built in areas for parents to stay in the NICU with their baby around the clock. I was fortunate enough to be able to stay with our son, he was our first baby so we didn’t have other children requiring us to go home and care for. My prayers will always be with those mama’s and having to leave your baby in the NICU while caring for your other children, my heart goes out to you.
Recovering from delivery, most likely a c-section if you’ve had a premie, is hard enough to get good sleep, now add in a new stressful environment, constant alarming, and being woken up by nurses every three hours. Sleep was so hard to come by in the NICU, being a nurse practitioner who flops between days and nights, and is sleep deprived at baseline helped me with this, but after the c section it was especially difficult. Right after delivery I was waking up every three hours to pump, even after getting discharged myself and moving over to the NICU, we were woken up every time the nurse came in for care times, and eventually feedings, whether it was breast feeding or bottle feeding, and then having the pump afterward. I felt like i only slept for two hours at a time. It was really important for me to get to take a short nap during the day, which most of the time was interrupted by doctors coming in to follow up after rounding in the morning.
My suggestion, if you are pumping/breastfeeding and if your partner is able to do one of the bottles/feedings in the evening, get a good stretch of sleep every evening/night. I would “power pump” for an hour in the evening so then I could skip one pumping session to catch up on sleep, and add an additional 5 minutes to my next pump so I didn’t impact my supply. There are other ways you can do this too, they recommend pumping 8 times per day, so every 3 hours, or you can pump every 2 hours during the day and then spread it out more at night. I personally didn’t like having to pump every 3 hours, I felt like i was constantly hooked up to the wall and not able to be with my baby, so every 2 would have felt like torture.
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