Well, with the help of all of you….your supporting words, your responses to my blogs, and some prayers, I made it through my worst part of September. And yet last night, when I heard “Wake Me Up When September Ends”, I still cried. This month holds so many anniversaries of tragic events, huge things that affected so many more people than Ryley’s early birth. It makes my fears, my sorrow over his premature birth insignificant in many ways, but it is still my own personal sorrow. But I made it past Ryley’s birthday, and I can once again look forward to the rest of the year with much happiness at who he is and how far he has come.
The day Ryley was born, I saw him for a few minutes just before he was transported to another hospital, to the NICU that would care for him so wonderfully for the next 93 days. I had no idea that would be the last time I would see him for five days. I was a mother, but my baby was not with me, or I was not with him – however you want to look at it. I was not able to fulfill my mommy duties. It was what I had feared most as I lay there in the hospital bed in the 2 1/2 weeks before his birth – being away from my son. I had him on a Saturday. They knew by Sunday that I had the type of staph infection that is the worst you can get – it attacks your heart. They thought I would be able to be released by Tuesday afternoon. Monday rolled around, and there was still no answer as to when I would be able to go home, go to see my baby. I was getting frantic. I didn’t even write in Ryley’s journal at that point. There was nothing I could write. I didn’t know for myself how he was doing. I didn’t know what his room in the NICU looked like. I didn’t know his doctor or his nurses. My husband became my rock then, but I still don’t know at what price for him. He would take the video camera to Ryley’s NICU and record him for a bit, then bring the camera to my hospital for me to “see” my son on a 2 x 2 inch screen. I would sit there and watch, and just cry. Michael was the one the dr and nurses called with updates, then Michael would call me. The only thing I could do for my baby at that point was pump, and try to get better. Those days passed so slowly. Everytime the “disease” doctor came into my room, he was pounded with questions of when I could “get out”. Simply put, I needed four weeks’ worth of iv antibiotics. They were debating with the insurance, the hospital I was at, and Ryley’s hospital, how best to handle it. Was it a medication I could administer myself? Could I be relocated to Ryley’s hospital to stay for four weeks so I could see my son and still get the antibiotics? Or would I have to stay where I was for four more weeks, and maybe be able to be “let out” for a couple hours a day to go see Ryley? It took them three days to figure this out. They inserted a picc line into my right arm. On Thursday morning we got word that I would have a home nurse come out once a week to check the line, provide me with the syringes and meds for a week, and I would administer the meds to myself, every 8 hours, for four weeks. I called Michael as soon as the doc left the room and told him to get there ASAP!! I wanted to get out before they changed their minds. I was released at 4pm. It took three carts to get all the stuff to the car, and by 4:45, I was walking into the NICU for the first time. Ryley was already off the vent. At 24 hours old, he was breathing over it already, and they took him off to CPAP at 36 hours old. At five days old, he was coming out from under the bili lights, and losing the little eye mask he had been wearing. At five days old, he was actually wearing a diaper. At five days old, I was able to hold him, on a cushion, for the first time. At five days old, my baby’s Mommy fell utterly and completely in love with her tiny child.
We go for Ryley’s six year old check-up next week. There are still questions that I have, still things that I worry are somehow related to his prematurity. I don’t know that I will ever look at him with complete and utter ease. I hope that I do someday. I know that many of my fears have been laid to rest. He has somehow escaped many of the scars prematurity can leave behind on our tiny survivors. But he has proven to be the feisty fighter the neo at his delivery said he was. There is hope and light in this world.