The morning Benjamin arrived was a total trip. 4:44am. Here I was only 6 months pregnant and I just had my baby. He was ok it seemed. He was crying. He had color. He was mostly breathing... They worked so fast my head spun around. He was here. He was in a plastic bag with a tiny little oxygen mask to his face in a matter of seconds. Hallelujah for the staff at Nanaimo Hospital. The OB and the Pediatrician all showed up and got to action helping our mid-wife take care of business. That was that. Benjamin was whisked away to the NICU before anyone got a chance to see him. These Doctors although great at their job were not equipped or confident in dealing with a baby this small. 2lbs 4oz and so fragile. After giving birth I was so ill, like couldn't stop throwing up... ILL. I just wished I was at home to be able to have a toke and drink some baking soda water to neutralize this awful acid that filled my stomach. No relief. Hospital vibes. Waiting on news. Where will we be going? Ben had to move fast but where. Vancouver? Victoria? Thank goodness it was Victoria. In just a few very short and very long hours, the helicopter had arrived and Benjamin was on his way. I couldn't go with him. He needed medical care and there wasn't space for me and a Doctor... So, my ambulance arrived. 8am and they were there to take me away. I have to say this was probably one of the most traumatic parts for me as my 6 year old daughter screamed and cried for me as they pulled me away on a stretcher... later I found out it was because she thought she would never see me again. So much had just happened and so much was happening. The ambulance attendants although kind enough were not very empathetic to the situation. They had a job to do and we had to go. My sweet mother in law. Solid as a rock and mega support for Evan. In that crazy time as he tried to keep his shit together while trying to get Maddi back to level ground, I'm so glad she was there for him and for her. That drive to Victoria for me was awful. 2 hours nauseous laying in the back of an ambulance. Exhausted. Not knowing how my baby was. My husband and poor little girl left behind in Nanaimo. They would go home and pack and meet us there. 10am and I was in Victoria where I would spend the next 73 days with my family. Little did I know it would be in an RV in a parking lot through the snow and gale force winds... but that will come a little later. In Nanaimo they assured us we would have accommodation. Jeneece Place. A home away from home for families. Sounded reassuring. Turns out, there are a lot of families needing a home away from home outside of the hospital in Victoria. When I arrived it didn't take long before I was on my way to the "red room" to officially meet my baby boy. Benjamin Bradley. My tiny little boy in an incubator. Hooked up to tubes and wires. His little face barely visible. Bright lights. Alarms going off. I couldn't hold him. I could only be there. Evan and Maddi arrived not too long after me. Things were weird. It was cold and flu season and being in Kindergarten, Maddi was a little germ factory at the time. My family arrived shortly after and Maddison was excited to go back home with my parents for a sleepover. A little pressure relief there as we would be sleeping in the hospital for a couple of nights before I would be discharged. Weird times to not have your whole family together. But we just went with the flow. Evan was my rock. He helped me keep it all together. Keeping my schedule on track for pumping milk and for Benjamins feeds. Journaling together to keep track of the Doctors and nurses and Benjamins progress along the way. It was more than 48 hours after birthing my baby before I could hold him. And even then it was very briefly, carefully and on his back. He had to stay in "mid-line" position for the first 72 hours. Evan and I each held him for a short time but it was so good. To touch my baby through more than an arm hole into his incubator. He was so small. It was so surreal. Looking back at the photos of that first hold is a total trip. Our baby's hand was the size of Evans' thumbnail! We met Doctors and so many nurses and had so many medical terms dumped into our brains over those months, I was fairly certain near the end I could run the place. I knew what every sound meant. Every alarm. We learned about A's and B's and D's and getting written up. PICC lines. NG tubes. CPAP machines. There was always so much happening all around us. No matter how still our moments were spending time holding Benjamin hour after hour, day after day. The action was constant. The stress was abundant. But so was the love. And the trust. I would just hold him and sing. And read him books. Evan would hum and chant and you could literally see how his vibrations settled Benjamin in all the ways. Calming. Relaxing. Just being with him helped so much. In a time when he was still supposed to be inside me it felt right to just be there to hold him close as much as we could. Benjamin started out pretty sketchy. He was a fighter but damn... he was so early. And born so fast. No steroids in advance to help his lungs develop. No early intervention. The staff at Victoria General were amazing and reassuring from the start. So much empathy. So much strength. Thank goodness for that. It was 3 days after we arrived in Victoria I was discharged. Jeneece Place was full. Christina, the manager there, was so so amazing and to this day she holds a special place in my heart. My Uncle had an RV and my parents were on their way down to get us set up on the side of the road outside Jeneece Place. We could use the house, kitchen, laundry and bathrooms. We were grateful for anything. Just for the opportunity to stay close. I didn't want to stay at a hotel 10 minutes away. Hell I didn't want to be 10 seconds away from that NICU. So, we were camping in style. Full on luxury RV with bump outs and a queen sized bed. Our family brought little pieces of home to us and we settled in. It was going to be a long road ahead. One day at a time. Apneas. Brady's. Desats. Benjamin had a LOT of them. Don't know what any of that means? Ever seen a baby go blue? To sum it up in short, your brain needs to send signals to your lungs to remind them to breathe and your lungs need to keep moving in order for your brain to receive oxygen so it can continue to send out signals. And well if your not breathing chances are likely your heart will slow to a stop. He was maxed out on caffeine... a friendly constant flow of reminders to breathe. He needed lots of reminders from us and the nurses to take a breath on a regular. It took time. One step forward. One step back. Slowly but surely they started to figure him out. They called him an escape artist right from the start. Leaving notes for the next shift to watch out for him launching himself out of his "nest". They eventually stopped putting him on his stomach. Of course he was trying to break free though... he had already made it clear he was ready for the world! I remember the first time I got to help with his tube feed. 4ml's... 4 frickin ml's! Down his tiny little ng tube. In the end he told us he was done with that tube... he just kept pulling it out of his face until finally the nurse left it out. Progress was small but mighty. He grew. Slowly but surely. Feed volumes increased. He was a full 30 days before I got the opportunity to breastfeed him. 30 full days before the nurses "let me" breastfeed my baby. Can you believe that? The fact that I had to ask someone else for permission to hold or feed my baby was so hard for me. I already had a daughter and I got to take her home within less than 12 hours after her birth. It was up to no one but her father and I to take care of her. This was a totally different ball park. We weren't in the driver's seat here. For Maddison it was a whole week away before she was back in Victoria to meet her baby brother. She wore a mask. She cleaned up. It was a short visit. But she finally met her little brother and she was finally there to join us and hunker down in the RV. Everything else in life was on hold. School. Work. None of it mattered. We all had to be here in this time together supporting Benjamin. After a super crazy windstorm and feeling super exposed on the street under the swaying trees and street lights, we made the move to the back parking lot at Jeneece where we would stay until February. We got cozy. We became "room 11". Jeneece place made us feel at home. It made Christmas away from home not feel so weird, in fact it was amazing. I remember Evan coming back from the bathroom on Christmas Eve and being in shock. They had a tote FULL of gifts for every room in the house... including us, room 11! It was amazing in all the ways but the total discomfort of sharing this space in the middle of winter with all of these other families (there are 10 rooms in the house and they were all full) was super hard to deal with. They have a super sweet playroom and crafts room and a theater. Any kids dream! But it wasn't just other NICU families staying at the house with vulnerable little babies. There are lots of reasons why one might need to be close to the hospital. People of all ages. People from all walks of life. People with health issues. Protect my baby... That was the biggest thing for me. Of course, Maddison got sick again. And so did Evan. I had to continue to sleep with them in our little RV and I had to continue to be there for Ben and snuggle with him as much as possible. Skin to skin. It was all I could do to help his development so dammit I was going to do it as much as I could. I was pumping milk, a lot. Funny how stress affects the body. I didn't have enough... I was trying everything. Tea. Herbal supplements. Lactation cookies (a LOT of them!) and in the end Domperidone. It all helped a little. I asked for advice... Are you pumping every 3 hours? Skin to skin can really help bring the milk in. Are you getting enough sleep? Will you be here for his nighttime feed? Are you getting enough to eat and drink? Are you taking care of yourself? I'm sorry... those were contradictory questions. Man, there are so many little details to share. So many huge milestone moments. When he graduated rooms. When he got his oxygen off. When he upgraded from incubator to bassinet. All of the journey beads... a program to track NICU progress and create a string of memory beads... a program which I am grateful for because as much as I wrote stuff down on my own, it is nice to have all of those milestone days written down together. The apneas and brady's decreased (painfully slowly). Benjamin graduated and moved through the motions. Finally he leveled up to the "blue room". He was improving. I was settled in and feeling more comfortable with my position in the NICU. We finally got to bathe him. I learned a lot. I made connections. Jeneece place facilitated support that we would have absolutely struggled without. Support we didn't know we would need. Home cooked meals. Fresh baked goods. A pantry and fridge loaded with food. Leftovers. A listening ear. I remember our first meal at the house. It was within the first couple of days in Victoria. Maybe even before we were set up in the RV. There were leftovers. LOTS of leftovers. Someone had come in and volunteered the day before and made a big turkey dinner. There were people in the kitchen. Making their own meals. Sitting and eating. Chatting. It was a little community all in itself. We made friends with whom we share a very special connection. I remember the first time in the kitchen there was Dylan and Natalie and they were making a roast beef dinner. They had been there for months. I thought to myself wow... the way I'm feeling right now I'm not sure I can heat up these leftovers and to think one day in the not too distant future we too will be using this kitchen to make all of our own meals. We would be able to do it too. I remember Halo was there too. She helped direct us out to the balcony to the coolers that housed the leftovers. So grateful for good humans and all of the love and support we received. I met Marissa about midway through our stay. I had seen her and her family around a lot but hadn't really connected much, being that we were always on the go. Then one day our schedules just kind of synced and from then on we spent our mornings in the kitchen together. Chatting while grabbing a quick coffee and toast before heading off to spend the day snuggling our boys. I remember when her boy came in. I was with Benjamin, less than a week in or so and her husband and 5 year old showed up to see the baby. The conversation I overheard between those two hit me right in the heart and I cried for that mama. I didn't know her, but I cried for her. But she was ok. Everything was ok. Little did I know we would leave that place as good friends and have each other to share this connection with for the rest of our lives. The routine became pretty steady. I would take off in the morning, snuggle till lunch. Come back to meet up with Evan and Maddi for a bite to eat, a quick walk for some fresh air and back to snuggle some more. Evan was sick for weeks, it was so hard but he stayed away from the NICU. It was weeks of just me, back and forth. Evan felt so heavy that he was missing the chance to be there. The bond strengthened between Evan and Maddison so much during that time. Days and days spent mostly just the two of them. I stayed healthy. Still, I wore a mask. No one told me too... in fact I got lots of looks from people likely assuming I was sick and was hanging out in the NICU. It was hard for me. Knowing that even thought I wasn't "sick" I was likely carrying around whatever bug Maddi and Evan had... I must have been. Well maybe not but I couldn't be too sure. Hours of hot breathing in my own face. Day after day. Not really being able to see Ben over my mask as he lay on my chest. I didn't get sick. He didn't get sick. Was it because I wore the mask while we snuggled? Who knows. I didnt wear a mask when I was with Evan and Maddison. Who cares. All I know is he didn't get sick. Finally Evan got better and we were able to take turns more often visiting with Benjamin. Or better yet have someone hang with Maddison for a bit so we could visit with Ben together. It was so hard. Not having Maddison be there with us at Benjamin's bedside for like the first 2 months. She came in a couple of times that first week in the red room. Masked up. Filled out the sign in paperwork. No, no, no, yes. We answered yes to the cough question because she had a lingering cough for weeks at that point. 3 days after filling out that form with a "yes" everyday to be told by a nurse that she cannot be in the NICU, mask or no, if any of the questions on the form were a yes. That was an awkward moment. Being made to feel we may have just risked the lives of every baby in that NICU because for the 3 days before that the nurse at the desk simply thanked us for signing in and sent us on our way into visit. Anyways, it was a hard thing to manage. The inconsistencies between nurses is something I struggled with but only for a short time. Accepting it all including being told one thing one day and something totally different the other. But by the time we were in the "green room" Maddison was much better and was able to come for more visits and read books to Ben and help get the journey beads and to employ the nurses to be her coloring buddies. They loved her there and she was in her glory taking over the place. Winter was full on. Living in the RV was interesting and an incredibly humbling experience. By the time Benjamin's weight was getting close to a steady 5 pounds and he was getting up to full oral feeds, it was the beginning of February. The Doctors were finally talking about the idea of Benjamin being discharged. Lots of different Doctors and specialists came through for various tests and exams throughout our stay. Lots to keep an eye on. As for his eyes, he had one check up early on and was due to have one last check before the eye Doctor would be comfortable with us being discharged. Lots can go wrong with a preemie's eyes, and real quick. That last eye exam determined Benjamin potentially had stage 1, the beginning stages of ROP that the Doctor would actually want to see Benjamin again in a couple of days. So sure enough a few days later and we were being told it was progressing and that Benjamin would likely need surgery for ROP. Retinopathy of prematurity. I know right, reti-what?! Well it is actually quite common among very premature babies, especially those on pressurized oxygen for extended periods. Actually, it is the same disease that caused Stevie Wonder to lose his vision... back in the day it was easily missed. Look it up if you want but basically the blood vessels don't grow smoothly as they should to connect the retina from the back to the front of the eye, which typically happens in utero. They start to go all curly and wonky and if not addressed with laser surgery, these vessels cause scar tissue to build up and will in time (sometimes very quickly) detach the retina from the eye altogether and the eye would be totally blind. Luckily, Doctor Pegado is the best of the best and we felt pretty at ease. You know, except for the fact that my son was only 10 weeks old, still 3 weeks away from his actual due date and they were going to put him under for an hour... or 2. It was 2 and man I'll tell you that was maybe the longest I ever held my breath. Luckily the NICU wasn't in a rush to kick Benjamin out so although he was technically ready to go home. We would wait it out the week for the surgery. A couple days recovery time added on to that with full disclosure that most times surgery causes some back steps for these little babes. We were pretty comfortable in the end. Just patiently waiting for Benjamin. 0 expectations. I actually thought full well we would be there beyond his due date. Like, I didn't know babies got to go home before they were technically supposed to... but apparently things can go really well and babies can be on their way home well before their due dates. In the end, things went well. Surgery was good... although coming out of the anesthetic was a bit of a struggle for Ben. I won't lie, when the surgeon came to let me know he was done, letting me know it went very well and he ended up doing more than 2000 lasers per eye, but that Ben was still in surgery while the nurses and anesthesiologist were trying to wake him up... I could have just fallen to the floor right there. Again, I just breathed and I trusted. The nurses were so great and just loved Benjamin so much. We all knew his strength would pull him through with flying colors. Sure enough he did. He woke up and came back around like a champ. So much so the Doctor started processing his discharge papers just hours after surgery. I was a little freaked out. It was happening so fast and the snow was falling hard. We weren't ready to drive home and we certainly couldn't bring our little baby boy from the NICU environment out to our poorly regulated, cold damp RV in a parking lot in the snow. Jeneece place was full, so the idea of us staying for a night with Ben seemed like it wasn't going to work out either. Maybe we would just have to chance it and drive in the blizzard... Christina was amazing though. She shut down and cleaned out the theater room for us to take over for the night. We had couches and a bed and a playpen and we were going to snuggle our baby in private for our first time! As a family. Inside a warm cozy house for our first sleep in 72 days with our baby in the same room. It wasn't perfect but it was nothing short of amazing. The next day the roads cleared a little and we made a break for it. That drive home was a total trip. I sat in the backseat with Benjamin and Maddison. I was so worried he would stop breathing. I was so worried about him I had ordered a monitor for home that I would attach to his foot to monitor his oxygen levels. But, he didn't stop breathing. He knew what to do. He was more than ready to go home. Vitamin D. Iron. Eye drops. We had everything we needed and our family was all together and heading home. I had only been back to the house once in that two and a half months when I decided I wanted to pick some things out myself to bring down to Vic with me. It was weird and I needed to get back to Vic ASAP. Coming back home that final time, with everyone all together. It was WOW. Evans' family had shoveled the snow from our driveway and walkway and we were so grateful for our warm, clean cozy home that everyone took such good care of for us while we were gone. By the time March 1st rolled around, we were settled in at home and just tripped out spending Benjamins due date walking around on the beach. After everything we were back in our element and we were whole. Corrected ages. Eye check ups. Neonatal follow up appointments. Everything was ok. The universe had a plan and although a little harsh, the lessons learned are invaluable. The connections made are irreplaceable. And once again I was humbled as fuck. We have no control. We can only trust and manifest and wait for what comes next. Benjamin has beyond "caught up" to his actual age and his vision is 20/20. If you made it this far, thank you. Thank you for reading this pouring of my soul. Our NICU journey. Our miracle story.
With appreciation and endless gratitude ~ Amanda
Thank you!
