It’s been over eleven years, but I still remember those days like they were, well, yesterday. That routine, which somehow became “normal”, has never left my soul. Sights, sounds, smells all take me back. I never imagined our pregnancy would end the way it. The thought of anything going wrong never entered my head once we were past the much-feared first trimester. Everything was supposed to be perfect after that, right? When the bleeding started, our perfect world collapsed and in its place came heartache, terrible fear, grief, pain, a world of doctors, nurses and machines caring for our tiny, sick child. Would that I could go back to the me before…the me that didn’t know about these things.
While Ryley was in the NICU, especially the early days, my day began at 6am. The routine was to get up, pump and bottle the breast milk (aka, liquid gold), load a syringe with the heavy-duty antibiotics to fight my staph infection and then inject it into my long-term iv (PICC) line, shower and pull myself together, eat, pump again, load up the bottles of liquid gold into an ice chest and then drive the 45-60 minute drive to the hospital. On the way, I would pray…pray that he had gained weight, pray that he had had few bradys (apnea and bradychardia – he would forget to breath and then his heart rate would drop), pray that I would get to hold him or even touch him that day. Once at the hospital, I would search for a parking place and then make my way inside. The check-in ladies at the front desk knew me by sight after just a couple of weeks. I would hop on the elevator up to the third floor, out the doors, turn right, then right again, then left, and then another left into the double-fire doors and NICU reception area. Just before I’d reach the hand-washing station, I would check the board to find Ryley’s magnet and see which pod he was in. Do you know I still sometimes reach with my foot for the pedal to turn on the water in the sink? Two minutes of washing my hands and then I was off to whichever pod Ry was in. The first two weeks he was in Pod 1, where the really sick, really delicate babies were. It was always dark and very quiet in there. You see, if he had still been where he was supposed to be – inside of me – all sounds would be muted and it would be pretty dark. They try to duplicate that environment as much as possible so as not to over-stimulate and disrupt the many growing processes going on inside a preemie’s brain. After Pod 1, he went to step-down in Pod 2, and finally Pod 3 once he was really stable and became a feeder/grower. Upon reaching his bedside, I would look at him to check his color, look at his monitors to see how he was doing, and then would pull his chart to check his weight from the night before and check how many bradys he’d had overnight.
I would spend my days next to his isolette writing in his baby journal, staring at him, holding him if he was doing well that day, praying over him, working on the embroidered blanket (which I never finished). I still had to pump every 3-4 hours. The first four weeks, I had to inject the antibiotics into my PICC line every 8 hours. I ate a quick, solitary lunch in the hospital cafeteria. When he was more stable, I did everything I could to feel as much his mom as possible. I would take his temperature (which was done every time his diaper was changed), change his diaper, “feed” him, and once he could wear clothes I would dress him.
After the afternoon shift change, I would talk with whoever his night nurse was, and then I would pack up to head home. Bills still had to be paid, dogs still had to be fed, and Michael still needed his dinner. Nights at home were not relaxing. Every time the phone rang, I was terrified to answer it, afraid it would be the hospital calling to say something was wrong with Ryley. One night, we did end up going back out there in the middle of the night. I couldn’t rest…..my heart knew something wasn’t right. That was the day we found out Ryley had a staph infection of his own.
I spent 93 days following this routine. It doesn’t ever leave you. When my mom had open heart surgery a few years ago and I went to see her in the tcu, one of her “neighbors” dropped their oxygen saturation and alarms started going off. It was the same alarm Ryley’s equipment gave. I nearly had a panic attack. My heart started racing and the adrenalin was flowing.
From Ryley’s baby journal, dated October 11, 2000:
“I’m reading this book right now about babies like you called Born Too Soon. The babies in the book were born earlier than you, and had a lot more problems, but some of the things the parents talk about go straight to my heart. One mom talks about not being able to be there at night when her son cried and how she knew the nurse were busy and couldn’t comfort & hold him. She prayed that God would hold and rock him. I pray that for you as well. It’s so hard to think about you being there alone, without me. I know you must cry sometimes and I’m not there to comfort you. I’m so sorry you have to be alone. I’m sorry I can’t be there all the time. Please know that I love you so much and this is breaking my heart. I really want to be with you all the time taking care of you. I just have to leave it in God’s hands to take care of you while I’m not there.
I’m so tired most of the time, and feel pulled in so many directions. I never feel like I’m spending enough time with you, yet there are so many other things that I should be doing. I feel like I’m in a bubble of home & hospital. We’ll get through this, son of mine. Eventually, and not too long from now, you’ll be home with us and life will change again.”