There is so much that I want to pour into the lives of mothers who are currently enduring the NICU journey and those who may be on their way into the unknown. I feel a big responsibility to share what I have learned- we didn't get any type of heads up or crash course in prematurity UNTIL were hit head on with the untimely circumstance. The first 3 weeks were the toughest I would say as I was dealing with healing from my emergency c-section and seeing my tiny 1lb 2.9oz baby fighting for his life outside of my womb. We were introduced to medical terms, beeps alarms, questions, back and forth trips to the NICU, surgery, a transport to a children's hospital, sleepless nights and MORE!
So, here some tips that I hope will help you navigate through the NICU storm!
1. Ask questions...lots of them! No question is too big or small- remember, you are NEW to this and by the time your little one breaks out of the NICU you will be a pro!
- What's the plan of care for my baby?
- How is their sugar level?
- How is their blood pressure?
- Are there any major concerns that we should know about?
- What would require a blood transfusion?
- Is my baby on caffeine? If so, why? How long do you expect them to be on it?
- How is their lung fuction?
- Are they tolerating their feedings? What's the feeding protocol?
2. Here are a few common issues that occur in preemies and some full term babies who need to be sent to the NICU:
- Unable to suck, swallow and breathe
- ROP (Retinopathy of Prematurity)
- Hernias (Inguinal & umbilical)
- Brain Bleeds (Grades 1-4)
- Pulmonary Hypertension
- Trouble feeding orally (by breast or bottle)
- Mainting their own body temperature
- Controlling blood sugar levels
- CLD/BPD (Chronic Lung Disease & Bronchopulmonary Dysplasia)
3. If your baby is oxygen a daily question to ask is:
- What's my babies saturation level?
NOTE: There are different types of oxygen support that a baby requires depending on how developed their lungs are. They may be intubated- which means a tube is inserted down their throat and connected to a ventilator (conventional or oscillator) If your baby is intubated and their lungs begin to function much better, they will then be extubated- which means the breathing tube will be taken out of their throat. At this point they will then be placed on a form of cpap or high flow oxygen. If your baby is on any forms of these machines that's awesome, it means that they are doing some breathing on their own with a bit of assistance. Try not to get discouraged if it takes your baby a while to advance from being intubated to any other form of oxygen. Lung function in preemies takes time and while some babies excel faster doesn't mean that your little one won't.
4. The NICU can be a noisy and busy place.
- Create a peaceful atmosphere in your little ones room or pod- you can do this by speaking in low tones, playing soft music (worship and classical music).
- Hang words of affirmation, pictures, positive quotes on or near your little one's incubator/room/pod.
- Keep any negativity OUTSIDE OF THE DOOR! Trust me, staying positive is key! It is vital to you and your babies health.
- Because premature babies are still developing, too much stimulation and activity surrounding their space can cause them to become overwhelmed.
- Any time the Doctor had something "BIG" to tell us or wasn't favorable I asked that we speak outside of his room or in their office. This helps maintain the sense of peace your want to have for your baby's space.
- I strongly encourage you to create a peaceful atmosphere even if you are in a room full of other babies without strict privacy.
- Try not to dwell on the negative things, remember, your baby is fighting for their life and doing the best they can.
5. Get to know the staff!
- As you come and go, speak and be kind to all personnel staff you encounter in the NICU. After all, these people are all in direct connection with getting your baby on the road to good health and being able to go home and thrive.
- Find out who the Charge Nurse is, the Neonatologist/Residents, Respiratory Therapist, Receptionist, Nurses, Social Worker, Physical/Occupational Therapist! You are a part of your babies medical team, you are their parent their advocate.
- Remember, your role isn't necessarily to become "friends" with the medical staff, BUT being cordial and letting them know your expecations is perfectly OK!
6. If you are unsure of ANYTHING, ASK!
(I can't stress this one enough!)
- If you have a concern that needs to be adressed due to the way your baby is being taken care of SPEAK UP! Talk to the Charge Nurse, if they don't do anything ask to speak with the Nurse Manager or Supervisor.
- Also inform your baby's social worker or case manager. It is so so so important that everyone stays on the same team.
- The ultimate goal is to be able to bring your baby home once they are healthy enough.
- Don't be afraid to ASK questions and ASK why if you don't understand something. NOTE: I'm not suggesting that you behave in a rebllious manner or challenge every word the Doctor or Nurse says, more so I want you to know that there is nothng wrong or inappropriate with knowing the details of your childs medical condition and how to support them during this journey. Trust me, having a premature child is scary enough but what would be even scarier is if you knew nothing about what was going on daily with your baby.
7. Ignorance is not bliss in the NICU!
While I know some things we may not want to know or even ask the Doctor out of fear of their answer, you will have to find a way to tackle that fear anyway. Not knowing isn't an option. Ignorance is not bliss in the NICU!