I am starting a series here called “Preemie-Life”, it will be me providing information on things I have learned and the importance of advocating for your little preemie. You know…things you wish you heard THE DAY your preemie was born! Most of my suggestions and information has to do with raising a micro-preemie (1.4lbs.), but never the less a preemie is a preemie.
When we were dumped into this journey, I say dumped because you usually have no time to prepare, you have to be quick and familiar with hospital/NICU lingo. It could be like learning a new language for a day or two until you start understanding what brady, pic-line, bpm, blood oxygen level, ng-tube, pda valve just to name a few really mean. There is alarms, monitors, cords and iv’s everywhere you turn and it could be scary and daunting at times; but if you just take it one day at a time you will make it through.
My daughter will be 4 years old this July and you may be asking why I waited so long to post about this part of my life if I have information to share with others that are raising micro-preemies too. Like any other parent you are learning as you go and you don’t have all the answers at the time, but when you look back and analyze what you have learned through the process you usually can make better suggestions to families that are going through similar situations.
The difference in the “preemie-life” section of my blog than a blog that is being updated in real time is that I have some perspective, wisdom, knowledge of what’s to come and how hard it really is. A real-time NICU blog has a level of raw emotion to it and uncertainty because you don’t know where the road will lead and everything is new. I am not a professional by any means, but I am a parent that has first hand knowledge of what it is like to be on the roller coaster of a ride called the NICU…
In this post I am going to be talking about 5 important things you should know when raising a preemie. Now this could carry over on to kids having medical conditions or developmental problems as well.
My list is in no particular order of importance, because they are ALL EQUALLY IMPORTANT.
1. Take good notes.
I say take good notes because no matter how well you can remember information and say that you don’t forget, YOU WILL. You are going to have a lot of information coming your way and you don’t want to forget something that’s important. Now I don’t mean feverishly taking notes while the Dr. is talking to you, but if you think there is something important to write down then…write it down. Or you have a question to ask him the next time the Dr.s do their rounds, write it down so you don’t forget.
I am speaking from experience…
Another reason to take good notes is when you are at home with your preemie and he or she starts getting sick or something isn’t quite right, write it down. When you get to the hospital or Dr.’s office they are going to ask you what medicine did you give, how much, temperature, at what time, what are the symptoms and you want to 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, I guess I should of taken notes…you don’t want to look like that!
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 cares, not feeling like they are bothered. If you don’t feel like that and you are not on the same page then ask or look around for a different Dr., you are not stuck with them. BUT I do not suggest jumping from Dr. to Dr. or you will not be able to build a Dr./patient/parent relationship.
Your pediatrician should ultimately want what is best for YOUR child and be on the same page as YOU.
3. Take care of yourself.
It is so important to take care of yourself physically, mentally and emotionally when having a child in the hospital for an extended period of time. Physically take care of yourself by making sure you are drinking enough water, eating breakfast-lunch-and dinner, and that you are getting enough sleep.
Mentally and emotionally I am lumping together because they can play off of each other. Your physical state can help your mental/emotional state too. Writing in a journal at the end of the day can help with how you are feeling and when you put it to paper sometimes you are able to release what you have been holding on to inside. Another helpful thing is getting out of the hospital room and taking a walk around the hospital, get some fresh air and a new perspective. You can also go down to the cafeteria and get a snack or a cup of coffee. The better you are feeling, the better you will be for your child.
These are all just suggestions, but you do not have to feel bad if you are not sitting bedside the whole day. You have to be the best you, so you can make good sound decisions for yourself and your baby.
4. Get their info.
You are probably thinking who and why do I need to get their information. If it is a specialist, Doctor, nurse or contact that you will be needing or think you might need in the future ask for their card or email address. Right off the bat you will probably put their number or email into your phone, but also write their numbers down somewhere on a piece of paper that is not stored in an electronic device. You may already have a file started that has all your hospital papers in it, write the info down in there too just in case something happens to your phone.
Why do I need this info? You need and want this info just in case you ever need to call on them when your child is older for a second opinion, to ask a question or sometimes when you are filling out paperwork for you child in the future they will ask 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 not able to go down to the hospital or when you are visiting with your baby for someone to talk to and learn from. I had great primary nurses that worked with my daughter and they taught me so much. I still remember my daughter’s nurses and I talking to each other about our families while I was holding my daughter on my chest. They were both so nice and instrumental in preparing me for this journey, telling me to be strong and that I am HER voice.
It is great to have primary nurses because that means when ever 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 you preemie, be their voice and always have their best interest at heart”
Let me know what you think in the comments below!
All of the information is my own thoughts and opinions.