Exactly 6 weeks after her birth, at 36 weeks and 2 days, our little Iris was discharged from the hospital. The last 6 weeks evoked that familiar sentiment of something simultaneously flying by and feeling like forever. In reflection, there were many chapters in this brief period of our lives. So many emotional ups and downs, so many lessons learned.
There was the beginning, the birth that all happened so fast, the fear, the shock, the immense gratitude that everything went as well as it possibly could have.
There was my physical recovery, a few days of feeling helpless and completely lacking in control of my own life, unable to take care of my daughter, my son or even myself. Unsure how long that would last and then relieved to heal quickly. How much easier those days would have been if I realized how quickly they’d pass!
There was the part where we could barely hold her, when she was under the billilight, connected to a c-pap and IVs, subjected to a failed picc line attempt. The part where everything was so new and I was nervous to change her diaper. She looked so small and frail and it made me so sad. I didn’t feel like a real mother, I felt like her secondary caregiver, like she belonged to the hospital and I was a helpless bystander.
Then I started kangaroo care, I became comfortable in the NICU, comfortable handling her and her care. We bonded, my hormones sky rocketed, I became more attached and it became even more unbearable to be away from her.
There was the part where I had to fight to hold her, when for no good reason the NICU became resistant to the kangaroo care. I became obsessed with the importance of family centered care, spent my spare time researching the benefits of skin to skin and the importance of making parents feel like their child’s primary caregiver, not guests in the nurses space, interfering with their work.
After weeks of handling the transition perfectly Roman started crying every time we left him and clinging to us whenever we were around. I felt so sad, thinking we were traumatizing him with separation anxiety only to realize the next week that he had a new molar. He had been cranky from teething and was back to his normal happy self despite our continued absence.
Then she was moved to the intermediate nursery, she received more consistency in her care, it was quieter, calmer. She became old enough to start nippling. I relaxed a bit as I felt the end was getting near.
Suddenly she was reaching her goals very quickly and discharge was in sight. We got excited, she would be getting out early at just 35 weeks.
Then there was the week of discharge disappointments. Of being told she’d go home Friday, then Sunday, then either Monday or Tuesday, then Wednesday and finally then Thursday, always learning the morning of that we had to wait yet again. It was a week of ranting to my husband about how I was going to demand they release her, about how I knew she’d be thriving at home in our care full time. Then getting nervous that I was over confident, doubting my instincts as the doctor told me her bradycardia episodes were too worrisome to leave. The going back and forth in my mind about whether I was pushing too hard, asking too much of her or that I was a rational person in an irrational situation. In my eyes the episodes were happening because she was in the hospital, but she couldn’t leave the hospital because they were happening. She has reflux that triggers bradycardia. Her heart rate comes back up on its own, she has no apnea, never needed stimulation. I could have been caring for her reflux and controlling the episodes better at home. My husband and I decided one of us always had to be with her to give her the care she needed. We got a hotel nearby and took shifts. We fed her carefully and held her upright for an hour after eating. She had no serious episodes. The head doctor explained that these episodes happen all the time to full term babies but no one knows because they aren’t monitored. He said she had no episodes in her history that worried him and we could go home on an apnea monitor. Thursday morning, 12/18/14, my stomach in knots from the stress of not knowing whether or not our doctor would finally agree to release her, we took her home. Suddenly she’s all ours; and it feels so right.
We are fortunate enough to have an amazing support system in our parents that made it possible to spend time with both of our babies every day. We are fortunate enough to live in a time and place with access to medical care and technology capable of supporting a baby born 10 weeks too soon. We were fortunate enough to watch our baby grow and develop steadily with no major set backs or traumas, to get her home in time for Christmas, a relatively easy NICU experience.
If I could pass on some advice to NICU parents from this experience this would be it: do your best to spend enough time with your baby to get to know them better than anyone else and to be confident in that fact. Do your research and assert your opinions and your rights as her parent. Sometimes the doctors will know best, sometimes the nurses will know best, but sometimes you will know best and sometimes you will see things they don’t and be able to do things they won’t that could make a difference for your baby. I realized eventually that our different doctors and nurses all had their own, sometimes contradictory, opinions. It is not as simple as just taking their advice. It’s overwhelming and intimidating and you might be made to feel incompetent. Despite already being a mother and having cared for a newborn you might be treated by some like your ideas about what your baby needs are wrong or even crazy. But that is your baby, and as my doctor admitted to me after grossly miss predicting expectations for my babies capabilities and progress, “Mother knows best.” (Father too of course!)