The hospital, first a network of unfamiliar hallways, disinfectant, whirling machines, and sounding alarms, soon became our home. We received a medical jargon crash course – a foreign language we never knew we needed, but learned as quickly as we could. Our son, measuring 11 inches and weighing only 600 grams, would face numerous challenges, and often, we felt we could only watch, pray, and wait. His arm was thinner than my index finger, and about as long. We weren’t allowed to wear jewelry in the NICU, but my wedding ring would have easily slid up and over his shoulder.
We learned about the different grades of perinatal IVH (bleeding in the brain), the stages of ROP (which can cause blindness), UAC, PAL, PICC Lines, blood gases, appropriate blood sugar and pressure levels, Pseudomonas (and the resulting isolation procedures), organ failure, replogles, chest tubes, different types of medications and antibiotics, his heart’s collateral vessels and the need for a PDA, hernias, all of the different types of breathing equipment (oscillator, respirator – both intubated and not, SiPAP, C-PAP, and nasal cannula), monitors, feeding tube combinations, and more than we ever previously knew existed.
For the first couple of weeks, his skin was nearly transparent, his eyes were fused shut, and many of his features hidden behind various life saving equipment. Blood tests were run every half hour, around the clock, with x-rays taken several times a day as well. The name we had chosen was sentimental to us both, but it was awhile before I felt comfortable enough to use it, wondering if it would be lost with him.
Things went well for the first few days, the honeymoon period as they called it, but as he turned one week old, he caught Pseudomonas, a bacteria which is harmless to a healthy immune system, but deadly to a micro-preemie. He would spend the next few months fighting the infection which nearly cost him his life.
I still remember the night when we were told that the Pseudomonas infection had gotten so bad that his organs were failing, with his lungs collapsing and pockets of air forming outside of them. His blood pressure kept dropping while his blood sugars were rising, and the bleeding in his brain was possibly stage four with several cysts forming. He laid there, motionless, with his stomach swollen and grey, and his intestines at risk of rupturing. There were seven pumps going, connected to each of his limbs, plus his umbilical cord, which contained steroids, blood sugar and pain meds, the strongest antibiotics possible, and more blood transfusions than I could count – all with their own risks. The doctor didn’t think he would survive. That absolute feeling of helplessness. My body had failed, it couldn’t protect him, I couldn’t protect him… I broke down crying. Soon after, the head of the department came in, and while I saw concern on his face, he was smiling, saying that he still had a few tricks up his sleeve, and would stay the night with him. We knew the situation was dire, but he gave us a glimmer of hope, when we needed it most.
Our son did survive that night, and slowly, one hour at a time, he regained his strength.
It was about five weeks before he was healthy enough for me to hold for the first time. Before we took our first real family photo. Two nurses and the respiratory technician helped move him from the incubator to my chest, draping me with breathing equipment, tubes, and all sorts of wires. The doctor was on standby outside the room. He was too weak for me to stroke or pat, and I had to hold as still as possible. Even a slight cough would send his numbers on the monitor into chaos. I didn’t dare even think about kissing him, and due to how he was positioned, I could barely see him. I sat, in my yellow isolation gown and surgical gloves, motionless and watching the monitors, for two hours before he needed to go back. Early on, while the physical contact was good for him, the moving itself was stressful, and we could only do it every two or three days, and then, only if he was having a good day.
Isolation protocol was maintained for the rest of his five and a half month stay. He had his good days, and his rough ones, but slowly, over time, he grew stronger. He took his first baths in a basin not much larger than a loaf pan. He worked his way through the various forms of breathing equipment, graduated from feeding tubes to bottles, and from incubator to crib. My birthday, our wedding anniversary, and holidays flew by, often commemorated with a special extra small outfit and photo. In December, when he was strong enough, though still on supplemental oxygen, we got to take him home.
* I am a mom, not a doctor. While everything is true to the best of my knowledge and recollection, the medical field is ever changing, and this site is for informational purposes only. I am not qualified to provide medical advice. If you have any questions regarding healthcare, please ask a qualified medical professional. If you believe I have made a mistake, please contact me.