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This time last year I had a daughter in the NICU and every day was a struggle. I thought wouldn’t it be nice if this time last year I had some tips that would have helped me during my 162 stay in the NICU with my preemie daughter? The answer is YES!
So that is why for the next 5 days, I’m going to share with you tips and resources for surviving the NICU. They are full of helpful and easy ways to care for yourself and your premature baby in the NICU that worked for me.
1. NICU & preemie terminology and their meaning
When your baby is transferred over to the NICU it’s overwhelming.
You will hear words that you have never heard before let alone know what they mean. So here is a list of common words that you will be hearing and what they mean.
Micro preemie- Is a baby born before 26 weeks and typically weighing between 700-800 grams.
NICU- Neonatal Intensive Care Unit
Premature birth – birth of a baby at fewer than 37 weeks gestational age known as a preemie
Apnea- the cessation of breathing Bradycardia- an abnormally slow heart rate
Bililights- special lights used for the treatment of jaundice
Blood gases- when a small amount of blood is taken to test for levels on the amounts of oxygen, carbon dioxide and degree of acidity in the blood.
Sepsis- infection in the blood
Transfusion- giving donated blood to your baby through a vein or artery
When you hear a word that you don’t know don’t be afraid to ask what it means and how it is affecting your baby.
I always carried my journal with me and documented during rounds. It was so overwhelming and there was no way I could remember everything at once. I would then write down any questions or concerns I had and ask at a later time.
This is why I highly recommend journaling in the NICU.
2. Support system in the NICU who they are and why you need them.
I can not stress this enough that you need a support system. It doesn’t matter if your baby is in the NICU for 2 days or 2 months or longer, it is an emotional rollercoaster that you should not have to handle alone.
There are several people in the NICU that you are able to lean on for guidance and support. It is up to you whom you choose.
I remember in the beginning I was in denial of what was going on and had no idea we would be there for months or that I would lose one of my twins. Looking back now that my daughter home with us (and healthy) there is no way I could have been as strong as I was without so many people behind me.
The nurses- I was so unbelievable fortunate that my daughters nurses were the best. Even though she is home I still have a relationship with a few of them and keep them updated on her progress. They are the ones who are going to be with your baby the most. I encourage you to ask them questions about the equipment and how you can help care for your baby during their NICU stay. The more knowledge you have will help you feel less scared.
Social worker- Every family in the NICU is assigned a social worker. The social worker is there to help families get emotional, physical, and financial support during their stay. I personally had a great relationship with our daughters social worker. She was constantly checking on us and was there for any questions we had. In the beginning she helped provide us with lodging information, and who to contact in regarding to financial assistance. I defiantly recommend reaching out to your social worker and forming that connection.
Case Manager- They monitor your babies progress and help organize services and resources during your hospital stay and when your baby is discharged. Our case manager was with us from day one. She followed her progress right along besides us. She provided us with a list of tasks we needed to complete in order to bring our baby home such as CPR class and watching several videos on the health and safety of our baby. Our daughter came home on oxygen so she helped set up our services and submitted the paperwork to our insurance.
Lactation consultant- They are specialized in breastfeeding and are there to support the parents when it comes to the challenges with breastfeeding and pumping for your premature baby. You will be introduced to your lactation consultant right away regardless of what route you decide to go with feeding your baby. They are there to help you with any questions and problems you may have when it comes to breastfeeding or pumping. Our hospital also had several luncheons each month that provided information on a certain topic and the opportunity to meet other families.
Other families- There are so many babies in the NICU so you are bound to run into the same families during your visit. Introduce yourself and ask about their baby. It’s amazing how good it feels to hear that you aren’t the only one who is feeling the way you do. They may offer some advice or support that you are needing.
3. Support system at home and why you need one.
Support at home is just as important as in the NICU and here’s why. You can’t do this alone. It doesn’t matter who you lean on a friend, coworker, aunt, parent, spouse, or partner. In the NICU you have your good days and bad days.
You need someone you can talk to for guidance and to not feel isolated. I felt isolated a lot. I didn’t go out much because I wanted to spend all my time with my daughter and I didn’t want to take the risk of getting sick and not being able to see her.
Some suggestions are meeting a friend for coffee or lunch. You can ask them to meet you at the hospital cafeteria or if feeling up to it leave the hospital for a few hours.
I’m also a member of Facebook groups dedicated to preemies the NICU, and loss in the NICU. It has been a great resource to go to when I need encouragement, advise and support. You will get all of that directly from a mom who is either going through it now or has gone through similar situations as yourself.
Also, be sure to follow my Facebook page where I share tips and advice. I’m always here if you need support.
4. Resource list for after the NICU
Leaving the NICU can be overwhelming and scary. You went from your baby having monitors and a nurse nearby to being home without your safety net. So I wanted to provide a list of resources for help for life after the NICU. You can use this list for guidance, support, and tips.
March of Dimes provides funds to research and programs to help prevent premature birth, birth defects, and infant mortality. They are an advocate for moms and babies. They even have a page where you can share your story and receive support from other mom’s with similar journeys.
Is a non-profit organization started by Jennifer and Nick in memory of their son Graham. They provide resources and support for parents of premature babies. One of the many incredible things this organization does is provide care packages for preemies in the hospital, transition home care packages and remembrance care packages. They also have a page where you can share your preemie story.
Is a non-profit organization run by volunteers who have a passion for helping families of premature babies, sick infants, or infant loss. They provide NICU support as well as bereavement support. Check out their shop where any of the proceeds will go to help support NICU and bereaved families.
Is a non-profit organization started by Kelli Kelley after she delivered her premature son Jackson at only 24 weeks. The purpose of Hand to Hold is to help families before, during and after their NICU stay. As well as support families of infant loss. They provide resources and one-on-one mentoring from someone who has been there.
Of course I’m going to include my own blog on the list because it’s my goal to help other mom’s going through the NICU and life once home. I provide my own personal stories and resources as a mom who delivered premature twins at 25 weeks. Spending a total of 162 days in the NICU as well as suffering infant loss.
Ultimate NICU Resource List
With this resource list concludes my 5 days of NICU resources and tips.
I hope by now you are feeling less overwhelmed and have a plan on how to prepare yourself for the next weeks or months in the NICU.
Let me know in the comments what has helped you during your NICU stay!