Luckily, most people will never understand what it's like to have a micro preemie born at the cusp of viability. A baby who, in the blink of an eye, can have any number of things go wrong with her health. Most people will never know what it's like to have a micro preemie in the NICU. But unfortunately, some of us will experience this reality and it comes without any preparation at all.
Here is my list of 10 Things To Know If You Have A Micro Preemie:
1. There is a constant fear that hovers over you when you have a baby born as a micro preemie. Many of the beautiful babies that surround you in the NICU do not survive the first few weeks after birth, and the constant fear of what the next day has in store for you keeps you from falling asleep each night.
2. Even if you can fall asleep, your dreams are not full of your precious baby giggling and laughing; they are filled with the sounds of NICU alarms beeping and nurses rushing to your baby's bedside to resuscitate them.
3. Nurses and doctors prepare you for the worst during each conversation about your baby's status. Many of them seem void of emotion -- and this is just because they're also human and they get very attached to your baby.
4. You feel as if you're having a heart attack each time you call the NICU and no one answers the phone right away. This is because you assume the nurses are attending to an emergency with your baby.
5. You are afraid to buy baby clothes or items for a nursery, because you are very much aware that your baby may not ever come home.
6. You may avoid your close family and friends because you just don't want to talk about your baby's health when you don't have to. This is normal! Every micro preemie parent needs time when their brain can relax and they can just be normal.
7. Your close family and friends may avoid you. This is because they just don't know what to say. Many are confused about whether to congratulate you on your baby's birth or apologize for it. That is also normal, although it can hurt you. Try not to take offense to it and reach out to those who you want in your life. The people who really love you will respond.
8. Your marriage may suffer a bit. Not only will the fear of your micro preemie not surviving stress you out beyond explanation, but you may disagree on the few medical choices that you can make, or you just may need to grieve in different ways. Take the time to talk and connect!
9. There is a grieving process associated with having a micro preemie. Let yourself have it! It usually sets in as your micro preemie is out of the woods and getting ready to leave the NICU or already has arrived home. You never expected to have a baby so soon and you may feel cheated that you didn't get to experience all of the joys and pains of a full-term pregnancy. Or, you may be upset that your birthing plan went out the window or you did not get to take your "babymoon" with your partner. This is normal and it will pass very quickly once your micro preemie is not such a preemie anymore and is behaving just like every other baby.
10. You may be upset when your micro preemie is discharged from the NICU. You may think that I am crazy for saying that, but it's true. If you had a micro preemie, your NICU stay was very lengthy and you formed relationships with many other parents and hospital staff (particularly the nurses) and you will miss them. Many NICU parents know more about what a nurse did with her family on her day off or what nurse has a child getting married than they know about their own family and friends. You will also be extremely frightened that you will not know how to care for your micro preemie at home. You have become accustomed to being told when to change a diaper and how long to feed your baby, that you may be nervous that you will not know what to do at home. This is not true! Your baby is still a baby and they all need the same basic things. Even if you are brining home a baby with special medical needs and equipment, you will be trained on how to use it all, and it will get easier with time.
This is just my advice based on my own experiences, and I do not claim that every NICU parent feels the same way. However, if you identified with any of the above, please share with other families who may be struggling with a micro preemie in the NICU.
You can find more information and support at www.micropreemie.net