My daughter, who will be four years old this July, was a micro-preemie, which means she weighed less than 1.4 lbs when she was born.
When we were dumped into this journey of raising a preemie – and I say dumped because
you usually have no time to prepare – we quickly realized how important it was to be familiar with hospital/NICU lingo.
For the first day or two, until we started to understand the terms, it was like learning a new language: Brady, pic-line, bpm, blood oxygen level,
ng-tube and pda valve, just to name a few. There were alarms, monitors,
cords and IV lines everywhere you turn and it can be scary and daunting, but if you just take it one day at a time, you will make it through.
While I’m not a professional by any means, I am a parent who has firsthand knowledge of what it’s like to be on that roller coaster of a ride called the NICU, as well as the benefit of perspective and hindsight.
Now that I’ve had the chance to look back and analyze some of our experiences, I wanted to share what I’ve learned with other parents who are in similar situations.
So in no particular order, because they are ALL EQUALLY IMPORTANT, here are some important things you should know when raising a preemie, you know…things you wish you heard THE DAY your preemie was born!
1. Take good notes.
I say take good notes because no matter how sure you are that you won’t forget anything, YOU WILL. You are going to
have a lot of information coming your way and you don’t want to forget
something important. Now I don’t mean feverishly taking notes while the
doctor is talking to you, but if you think there’s something important being said… write it down. If you have a question you want to ask the next time the doctor does rounds, write it down so you don’t forget.
Here’s another reason to take good notes: If you are at home
with your preemie and he or she starts getting sick or something isn’t quite
right, you should write it down. That way, when you get to the hospital or doctor’s office and they start asking questions about what medicine you gave, how much, what time and so on, you’ll be prepared with all the
information that they need. It will make you look and feel like you have it
together! Instead of the alternative – “uh…I don’t know….uh I don’t
remember.” You are only as good as your notes!
2. Have a good relationship with your pediatrician.
Have a good pediatrician by your side, this will be a life saver!
They can and will be one of your child’s key players and advocates in this
journey. You want to be able to call your pediatrician and ask them a
question and feel like they genuinely care, not like you are bothering them.
Your pediatrician should ultimately want what is best for YOUR child and be on the same page as YOU. If you don’t feel like you’re on the same page, ask around or look for a different doctor. That being said, I do NOT suggest jumping from doctor to doctor frequently or you will not be able to build a strong doctor/patient/parent relationship.
3. Take care of yourself.
It is so important to take care of yourself physically,
mentally and emotionally when you have a child in the hospital for an extended
period of time. Take care of
yourself physically by making sure you are drinking enough water, eating breakfast-lunch-and
dinner and getting enough sleep.
Your mental and emotional state can play off each other, and your physical state can affect you mentally and emotionally as well. Writing in a journal at the end of the day can help with how you are
feeling; when you put it to paper, sometimes you are able to release what you
have been holding on to inside.
Another helpful thing I found was getting out of the hospital room, even if just for a coffee break or to take a short walk and get some fresh air and a new perspective. The better you are feeling, the better you will be for your child.
4. Get contact info for doctors, specialists and so on.
When a doctor or specialist sees your child, ask for business card or e-mail address. When you store it in your phone, you might also want to consider writing their numbers down on a piece of paper that’s not stored digitally. You may have already started a file with all your hospital papers, if so, write the info down just in case something happens to your phone.
You may be wondering, “why do I need this info?” Well, if you ever need to call them when your child is older for a second opinion, or ask a question, you’ll be glad you have it. Also, sometimes when you are filling out paperwork for your child, you’ll be asked for a phone number of a specialist that you saw in the past.
Just like it is important to keep good notes…it is also
important to keep your contact information straight.
5. Have a good relationship with your nurses.
Your nurses will be your life lines when you are visiting with your baby and need someone to talk to and learn from. I had great
primary nurses working with my daughter who taught me so much. I still
remember talking with the nurses about our families while I was holding my daughter on my chest. They were so nice and instrumental
in preparing me for this journey, telling me to be strong and that I am my daughter’s voice and strongest advocate.
It is great to have primary nurses because that means whenever they are working, they will be assigned to your baby. You can always ask to
be assigned a primary nurse and they will tell you if there is any nurses open
to taking on a patient. I recommend it because then you get to know your nurse, and most importantly, they get to know you as well.
“It is important to advocate for your preemie, be their
voice and always have their best interests at heart.”
Let me know what you think in the comments below!