Having a baby prematurely is a very difficult thing. There are so many scary outcomes that are possible, and there is very little you can do to help prevent any of them. Your sweet little tiny itty bitty baby is in the hands of people who you hardly know, if at all, and you have to go home from the hospital without her. Every day will bring new challenges, and most likely tears as well. I was at such a loss when my son was born at just short of 26 weeks, I felt very helpless. There were a few wise words that I was told by a dear friend, and a few things I learned along the way, that I will share with you in the hopes that if you find yourself in such a scary situation, you will have some ideas to try while you go through the rough parts.
1. Don't ride the emotional roller coaster.
Every day in the life of a preemie is a new challenge. There is often a new test, or a new medication, or a new supplement, and the medical jargon surrounding everything is confusing at best. I called my friend, who had premature twins, a few days after I got home from the hospital, and asked her how she had survived having her babies away from her for so long. She replied that the best thing anyone had said to her was to stay grounded, and not to let the highs and lows throw your emotions around so much. This was wonderful advice. I recommend that any parent of a premature baby allow themselves to cling tightly to their hope, and let any scary or negative news wash over you without washing away your foundation. After all, since the roller coaster and the foot path arrive at the same destination, take the easier route when you can.
2. Get a good primary nurse.
I wasn't sure what a "primary" nurse was when my husband and I were told we could choose one to help us oversee our son's medical care, but I began watching each of the nurses that interacted with my son each time I was in the hospital, and soon got a strong feeling of confidence in one kind lady in particular. I asked her to be my son's primary, and luckily for us she accepted. I came to find out that a primary nurse will work almost exclusively with your baby whenever they are on duty. He or she will communicate with the doctors, speaking their same language, and make recommendations that the doctors may not have thought of if they are less familiar with your baby's particular case. If you are lucky enough to get a truly amazing primary nurse, she or he may call on days off to check in with the nurses on duty to make sure they are doing everything just the way your baby likes it. He or she will sometimes be a sympathetic ear, a teacher and a friend, keeping an eye on your needs as well as those of your baby. I cannot say how much I will always be grateful to my son's primary nurse, and I highly recommend to every parent of a preemie that they ask for one as well.
Another thing that was a huge help to me was when the supervising physician over the nursery walked my husband and I through the NICU to the area where the oldest babies were. These were the ones who were just about ready to go home. He pointed out one little baby boy who he told us was born at the same gestational age as our son. This boy looked completely normal. He was fat and wiggly, and looked just like a regular newborn baby! That image inspired a vision in me of my boy. I imagined him with wild curly hair, running around a park as a young child. As I sat by my baby's isolette, watching him breath each day, this vision of the future warmed my heart and let me look past all of the wires and tubes, bandages and bruises. I think that my positive thoughts could only have done good for my little muscle man. I know that the calm you feel when looking on a bright future can give you strength, and I believe that our babies understand our strength as a positive energy that helps them keep working so hard to grow.
4. Celebrate the little things.
In my heart, I celebrated my son's first week of life like it was his first birthday. Obviously my husband and I didn't throw a party every time he had a good blood test, or went more than a couple of days without having a "Brady" (Bradycardia: an episode of extremely low heart rate accompanied at times by breathing difficulties.), but we would have a quiet little celebration together at home that night. I called my mother to update her on every little milestone that my son passed. Other parents, who were even better at this, had a big chart on the wall by their baby's isloette, that tracked each ounce of weight he gained with bright stars and was covered with cheery messages left by visitors. I even soaked up some of the positive energy that radiated from that beautiful poster. However you do it, find some way to enjoy and share your tiny one's achievements, no matter how small. I think you'll find that it will really give you a positive boost, and everyone needs those.
5. Focus on what you can do.
The worst part of being the parent of a premature baby for me was the complete lack of control. I'm not a complete control freak, but when it came to my baby, I always thought that my husband and I would be the ones to provide our son with the basics of his care. It was difficult to accept that I would not be the first person to change his diaper, or give him a bath. There seemed to be so little I could do for him, yet when my husband and I decided to simply look on the bright side, and to do our best at what we could do, we discovered quite a few little things that we did religiously. I was given a "scent doll" that I would take home and sleep with every week or two for a few days, then I would place the doll in the isolette so my son could smell me. My husband bought a small tape recorder and recorded himself and me reading stories and singing songs. We would have the nurse turn on the recording for a few hours every day at a low volume, so he could hear our voices (as he would have if he was still in my womb) while we weren't there. I went and visited with my baby every day that I was allowed (there were a couple days when I was sick and was not allowed to visit), and pumped my breast milk every 2 to 3 hours around the clock, carefully labeling and freezing each bottle to take to the hospital. My husband and I threw ourselves a baby shower, and organized his crib and changing table for when he would come home. We learned how to practice the "containment hold" and do the "kangaroo hold" as well as learning how his oxygen tanks worked, so we could bring him home even though he still needed oxygen. We took CPR classes, read the medical literature the hospital kept sending home with us, and basically did many of the things we would have done in anticipation of our baby's arrival had he still been in my tummy. I found that the more I was focused on the next small task that I could do for my baby, the smaller the obstacles we needed to overcome seemed.
Every baby will come with challenges and difficulties, but some will be harder than others. Preemies come with their own set of challenges and trials, but the good moments are so very very sweet and precious because they come along a bit more rarely. Don't let yourself get bogged down in all of the things that might go wrong, just keep doing what you can do and keep a positive outlook as much as you can. Don't be afraid to lean on friends, family, and even strangers for support, because at times we all need a little extra boost. I hope these tips prove useful to you, and if you know any parent of premature babies who might need these tips, please forward them. Questions and comments are always welcome. Happy parenting!