My name is Rachel, I am a NICU nurse and the mother of two children, both of which were born very prematurely; one at 30 weeks and the second at 25 weeks. Both pregnancies were fairly uncomplicated until my water broke out of nowhere, and with no explanation, twice. I had just started my first job as a Registered Nurse when I found out I was pregnant with my first child. The job was tough, 12 hr shifts three days a week on a 50 bed Cardiac Unit.
At 29 weeks gestation (about 7 months) I came home from a 12 hr shift and felt as though I wet my pants a little on accident. I blew it off to the baby kicking my bladder and went to work the next morning. Gushes of fluid kept happening and I kept thinking it was way too early for my water to had broken, unconvinced, I left work to visit my OB not really knowing what to expect. After confirming that my water had broken, 11 weeks too early, I got sent to the hospital. I would stay on bed rest for 1 week until my 3 lb 6 oz daughter made her entrance. The doctor at least brought her to me so I could see her face before they whisked her off to the NICU.
The first time I saw her, even as a nurse I looked past all the equipment, wires, monitors and beeping, I just wanted to see my baby. I wanted to talk to her and touch her and let her know I was there. Being a new mom is an experience you feel lost in but being a new mom to a preemie is even more challenging. Everything your intuitions tell you to do to comfort your baby, the NICU tells you not to. They cry and instead of picking them up and cuddling them, you only get to hand swaddle them. You want to stroke their soft skin but their nervous system is too immature. There are so many restrictions and so many people telling you how to mother your child the experience can be defeating.
The next 5 weeks were spent traveling from home to the NICU instead of enjoying being miserably big and pregnant. I was only allowed to stay for 30 min around her cares/feeding times, then had to let her sleep for the next 2.5 hours until it was time to do it all over again. My daughter did remarkably well, 3 days of oxygen, a few courses of antibiotics, and basically just needed to grow and learn how to eat.
Upon discharge, I was handed information on an early development program and was told I could call them if I wanted, they would come to my house and address any developmental concerns I had with the baby. When we went home I wanted to block the whole NICU experience out of my mind. I didn't want to believe that she would be slow to develop or have any setbacks. I didn't want to have physical therapists visit and evaluate her, I wanted life to move on normally.
For the most part it did, we had a few bouts with bronchiolitis and breathing treatments, she had to get Synagis shots to protect her from getting RSV, but nothing serious. Developmentally I worked with her and she did everything on time as if she were born on her regular due date; everything except when it came to walking. At about 10 months old my daughter was trying to balance alone and take steps, I thought it was the cutest thing! She would stand on her tippy toes like that was going to help her balance. At 12 months old she still wasn't walking, now the tippy toe thing was starting to get in the way of her actually being able to stand unsupported.
I brought the information up to my pediatrician and she blew it off saying that I had to still remember that my daughter was a preemie and had until she was 14 months old before I could really expect her to be walking. Ok, I waited, 14 months came around and still nothing. I decided to get a second opinion. I called the early development therapists whose information I had received from the NICU.
They came out and started working with my daughter and said she had incredibly tight heel cords which was to blame for her walking on her tippy toes all the time. She physically could not flatten her feet flat to the floor and her left was worse than her right which could indicate some cerebral palsy. When my daughter was 18 months old, Shriners Hospital in Tampa Florida agreed to see her. Here they evaluated my daughter and decided that she probably did have some mild cerebral palsy and needed her feet and lower legs casted in order to stretch her heel cords and help flatten her feet. For the next six weeks we went every week in the middle of summer in Florida to get new casts. Each time they would flex her feet as far as they could and cast it in that position to get as much stretch as possible.
At 22 months old my daughter was finally able to walk across a room with her little casts on. At the end of the six weeks we moved into braces. I was told she would wear the braces until she was probably 16 years old and may have to get Botox injections in her heel cords in order to keep them from retightening. When the casts came off it was so sad to see how weak her little legs were without their support, she would just crumble to the floor. After about a month in her braces she had gotten enough strength up to walk without them and from then on refused to put them on. We moved into hard insoles to keep her feet from rolling inwards until about the age of 4 when she grew out of them. After an Orthopedist said she should be fine without the insoles we moved on with life.
My daughter is now 7 years old and is starting to complain about ankle, knee, hip and back pain. We will be heading to University of Iowa to have her reevaluated and see if we need to do something with her feet again.
In all other aspects, you would never know she was a preemie. She has caught up in size, she is excelling in school, she is reading chapter books at the end of 1st grade, she loves basketball, dancing, acting and drawing.
I blamed the stress of my job for this early delivery, I was doing too much and my body couldn't keep up. There was no other explanation for my water breaking as early as it did. The usual suspect is infection but I never presented with an infection and neither did my daughter. There was simply no answer.
It took me 4 years to even think about having another child. I was so fearful the same thing would happen again. Still, the dream to have a big family pressed and again I became pregnant. This pregnancy was miserable from the beginning. I was extremely sick with not being able to eat, and was fighting the gut feeling that something was just not right. I had moved back to Iowa, and started a new job. My OB started me on progesterone injections weekly at 16 weeks, to help prevent another premature delivery. I had my 19 week ultrasound that showed everything to be completely normal with my baby boy and also with me. I felt relieved, I was past the miscarriage mark, and the baby was growing and developing normally, my goal was to just make it past the 30 week mark, and be grateful for each day after that.
5 days after my 19 week ultrasound my water broke at exactly 20 weeks gestation. An after-hours visit with my doctor verified it was amniotic fluid that I was leaking and at that point, my world turned upside down. The doctor called Iowa City to see what, if anything could be done, and returned with news that they wouldn't accept me as a patient until I was at least 23.5 weeks gestation which was the earliest I could receive steroid injections for the baby's lungs; almost four weeks away. I was sent to a local hospital with the warning that I would most likely deliver in the next 48 hours. If I somehow didn't deliver I would have to make the decision to induce and lose the baby, or go home and wait.
48 hours passed with no contractions, and no baby. The hospital would not keep me due to the fact that there was really no medical need. If I delivered the baby, he was too early to live as viability at that time was 24 weeks and I would have to make it until then to give my baby a chance. I chose to go home still pregnant, with my water broken and only 1-3 cm of amniotic fluid around the baby out of a much needed 17-22 cm. Among its other jobs amniotic fluid is what develops a fetus' lungs, without it the lungs may not develop in order to sustain life. As a NICU nurse, I was familiar with the risks but ultimately had to fight until my body or my baby let me know the fight was over.
I spent my days on bed rest, almost upside down in order to keep in as much amniotic fluid as I could, and I took my temperature every 4 hours to assess for infection. I would pray every hour for the baby to move so I knew he was still ok, and I crossed off every day on the calendar until I reached 23.5 weeks gestation. Then my mom and I made the trip to Iowa City to get admitted to the hospital and get the steroid shots for the baby's lung development. After the shots and getting settled in my room, a huge milestone was met, my baby had a chance to live.
I spent two weeks on bed rest before severe kidney stones would throw my body into labor. I delivered my son at 25.5 weeks and 2 lbs 1 oz. I was thrilled he was over 2 lbs! He was still only the size of a Barbie doll. At this point I knew I had done everything I could and now the fight was up to him, and fight he did. He got down to 1 lb 11 oz, and was on and off the ventilator for about 75 days. Breathing was his number one problem, digestion came second. Of all the risks factors micro preemies face, blindness, deafness, brain bleeds, NEC, heart surgery, hernia surgery, my son escaped them all. He spent 110 days in the NICU before he came home on oxygen, a monitor, 17 doses of medications per day, and a feeding tube.
The next two years were filled with follow up appointments, physical, occupational, and speech therapy, rehospitalizations, ambulance and helicopter rides, If it wasn't a roller coaster, it would be unfamiliar. The emotion and anxiety of having your baby in the NICU is unexplainable, uncontrollable, and unpredictable. Every day I arrived at the NICU I would get physically sick with fear of what I might walk into, or what may happen. I had been preparing for the worst for more than 5 weeks of pregnancy and couldn't get out of that programming, it was the most stressful situation I had ever been though.
My son is now 3 1/2 years old and you would never know he was a micro preemie if I didn't tell you. Developmentally he is completely caught up, but still struggles with breathing problems. So many people gave me negative feedback and disapproved my decision to fight for my son, but I did what I felt I needed to and I have a beautiful, smart, thriving, almost completely normal child because of it.
The only thing you can truly predict about a preemie is that they are unpredictable. Two steps forward and one step back, a constant fight for survival and success. Each preemie has their own pace and they will make it known. The job of a parent of a preemie is to understand that it is a gift to have gotten to see, touch and hold your baby sooner than expected, but their immature, tiny bodies have to fight each day to learn to function in this world they were too early introduced to. It will always be on the baby's timeline and no one else's. It is the medical team’s job to support that and the parent’s job to nourish that.
There are a lot of guilty feelings associated with having a preemie, and also a lot of unexpected grief. The guilt of failing your baby, not doing the job a mother is supposed to do and complete a pregnancy. The feeling of not knowing what to do for your baby or even how to calm, comfort, or hold your baby. The hurt of watching their pain, watching them fight, and the fear of losing them.
Grief for me comes when I see and big, full term pregnant mom, or a newborn baby able to nurse or eat a bottle without tubes or spells. I never got a real baby shower and played the silly games, or even really wore maternity clothes. My pregnancies were robbed, but when I look at my beautiful children's faces, nothing compares to the proud moments they give me now, I am truly surrounded by miracles. Lucky for me I also have the opportunity to give back as a nurse to the preemies I take care of and the families that I can relate all too well with.