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His Story….revisited

Because it is March for Babies time, I feel a need to remind myself where we began on this journey. Ryley’s life was saved by research funded by the March of Dimes. And this is why we give back.

Michael and I knew before we started trying to have children it was going to be a “challenge”. I already had diagnosed fertility issues. We were given six months of trying on our own, which stretched to 8. Then we started the wonderful, oh-so-fun clomid. We tried that for another six months, got pregnant but then had a very early miscarriage in November of 1999. I was devastated. Two months later, we were sent to a fertility specialist. I was given another acronym of a diagnosis, and we were put on gonal-f shots. At the end of March, we saw the egg that would be half of Ryley ready to release. Four weeks later, we saw his heartbeat on ultrasound for the first time. Michael was so proud. I’m pretty sure he still has that u/s photo somewhere in his stash, but it hung on our fridge for a long time. Three weeks after that ultrasound, I started spotting. My obstetrician was not very helpful – he said we would carry the pregnancy, or we wouldn’t, and there was nothing he could do for me. Time would tell. A week later, the bleeding stopped. I breathed. My pregnancy went on. I did everything my doctor and the books said to do/not to do. I didn’t drink, didn’t smoke and stayed away from people who smoked, went to all my appointments, ate well, drank lots of water, didn’t have any caffeine, didn’t overdo, got plenty of rest, put my feet up, and so on. Everything was “normal”. We’d just had the ultrasound where we could “find out” if we wanted (which we didn’t), when, at work, I felt sharp shooting pains in my low back and low belly. I doubled over, sure I was going to pass out. I don’t know how I made it back to my chair at my desk, but I did. And I sat there, bent over, breathless, until the pain passed. The baby began to “ball up” in my tummy. I thought he/she was just flipping over. A co-worker saw me, and called Michael. He came, picked me up and took me home. I called my ob (who btw was a doctor who had a birth center named after him he was so widely touted). He said it could be the round ligament pain many women feel, or I was “stressed out” and “needed to put my feet up, maybe get a massage”. He did not have me come in to be checked. He said it was unnecessary to go to the ER for monitoring. I trusted him. I drank some water, rested, and was back at work the next day. I was one week past the halfway point of my pregnancy. Two weeks later, it happened again. This time, I nearly threw up. I had my first prenatal massage appointment that night. Once again, Michael picked me up at work and took me home. I drove myself to my massage appointment. It was September 6th, 2000. I met the massage therapist, Steve, who worked out of his home. We did the preliminary stuff…..brief medical history, etc, and then I went to the restroom before we actually put me on the massage table. You know pregnant women – they pee all the time. Well, when I was “done” I stood up to flush and saw a toilet full of blood. I froze and I could almost swear time stopped. I remember two very distinct thoughts….the first was “My baby is dead”; the second was, “I can’t do this again.” I flushed the toilet, walked out and sat down. Steve must have seen I wasn’t right. I told him I was bleeding and I didn’t know what to do. He had me call my doctor. Fabulous, highly-recommended, highly-touted, famous doctor told me to drive myself back to the hospital he had privileges in – 45 minutes away in rush hour traffic. When I told him I didn’t think I could do that as I was gushing blood, he told me he “couldn’t help me” and he hung up. I called Michael to tell him what was happening. Steve – and I still swear this man was an angel in disguise – took the phone, told Michael he was taking me to the hospital less than a 1/4 mile away and to meet us there. Steve drove me in my car to that hospital down the hill. I walked into the ER and told the receptionist I was 23 weeks 4 days pregnant and was bleeding. I was very quickly slapped into a wheelchair and rushed to Labor & Delivery. I had no idea why everyone was rushing – I already knew our baby was gone. There was no way a pregnant woman could bleed that much and have her baby still be alive, right? The nurse had me change and get into the bed, and she put the fetal monitor on my belly. I heard the most amazing sound ever – the sound of my baby’s heart still beating. She also found that I was contracting, and I was gushing more blood with each contraction. I was sent to an hour-long ultrasound. While the tech couldn’t necessarily see it on u/s, they determined I had a placental abruption – the life-giving placenta was tearing away from my uterine wall. Michael and I almost caved in finding out boy or girl. If my baby was going to die that day, I wanted to know if it was a boy or girl. But then we also thought that finding out was giving in – believing our baby wasn’t going to make it. So we changed our minds again and did not find out the sex. Michael had been making phone calls…his dad, who was in the Bay Area on business, arrived at the hospital. Everyone else was on notice that things were not looking good. Later that night, I had my first ambulance ride ever as I was transferred to a hospital that could “handle a 23 weeker.” I had no idea what they were talking about. At the new hospital, still in L & D, I was put on magnesium sulfate to stop the contractions. Oh….my…God what awful stuff. First, I felt like my entire body was on fire. Then I couldn’t stop shaking. And then I couldn’t focus on anything at all. The next day (I think) – after listening to 18 women labor through the night (this was the September after the New Year turning 1999 to 2000 so there was an overabundance of babies being born), I was transferred to the antepartum unit. I know – I hadn’t ever heard of it either. And I was on strict bedrest. NO getting up, for anything. On Friday, they thought I might be able to go home, still on meds and on bedrest, but then on Saturday the bleeding sped up again and the specialists (called perinatologists) decided our house was too far away, should I go back into full labor. They told me I was there, stuck in that hospital, until I reached 32 weeks gestation (8+ weeks away) or until I delivered, whichever came first. I settled in. Michael brought me a boom box (the hospital was ancient – no satellite or cable so only the basic channels were received on the tv), a vcr/tv combo, books, and a fan. Gotta love the Indian Summer in Northern CA, and my hospital room got all the afternoon sun. Plus, I was still on magnesium which still felt like fire inside. I couldn’t focus on books so I couldn’t read. I tried – I’d end up reading the same paragraph a hundred times without having any clue what I’d read. I could hardly focus on conversations. I’d drift off in the middle of a sentence, even if I was the one talking. My mother-in-law and my Daddy each came for a week. They took turns with my MIL coming to stay with me in the morning, and Daddy in the afternoons until Michael could get there. The Summer Olympics in Sydney, Australia opened the Sunday after I was admitted, thank God. I watched every televised minute of those Olympics. Also, Matt Lauer, Katie Couric, Al Roker, Rosie O’Donnell, and Oprah became my best friends. They got me through each day. At the time I was admitted, our baby was given a 10% chance of survival, with a zero chance he would survive without lifelong, serious medical problems. In fact the doctor said we really needed to get three more days before they would even resuscitate as 24 weeks was the outside edge of viability at the time. Every day gave him better chances. I loved being monitored three times a day. I loved hearing his heart beat. I felt it was better he and I were there together rather than him being there alone and me at home. So I sucked it up. In five days, I lost 8 pounds, and the nurses freaked. They told Michael to bring me whatever food I wanted, and the higher the calories the better. I had my own shelf in the fridge at the nurses’ station. I’d have breakfast at 7, a snack at 9:30, lunch at 11:30, a snack at 2, a snack at 4, dinner at 5:30, and another snack around 9 or so. Every four days, my IV lines were moved. I hated that part. Not a fan of needles, and I had two going at any given time. On day 16, my left wrist was red, swollen, and painful to the touch. That night, just before the night nurse was to come in, I started shaking. I tried to hide it. I don’t know why I did that. I think I knew something bad was coming and if I could just hide it enough, I could keep it from happening. But nonetheless, she came in at 11 to take my vitals. I had a fever of 101, and I was contracting again. She called my doctor. He wanted a culture, but not just any culture – he wanted blood and a catheter urine culture. I wasn’t a fun patient at that point. I was in pain, and I started crying. A couple hours later, they moved me back to L & D so they could “keep a closer eye on me.” My fever raged up to 104. They took more blood, more urine. By morning, they knew I had a staph infection, they just didn’t know where from, or what kind. Blessedly, Michael was already there with me. They put a catheter in, trying to slow the contractions down until they had more information on the staph infection. My doctor wanted to do an amnio to see if the baby was “viable” and if the infection had reached him yet. I refused. I’d been stuck too many times, and I knew it was a danger to do the amnio at that point. At 11:30am, my water broke and it was game on. Our baby was coming. Michael made more phone calls to let everyone know. At 2:29pm on September 23rd, our firstborn entered this world. There were five nurses and three doctors in the room with us. I just remember the silence. How could a birthing room be so completely quiet? The doctor didn’t even announce, as I was expecting he should, whether we had a son or a daughter. I looked at Michael and asked him, “What is it?” He peered over….”It’s a boy” he said. The nurse moved Ryley away to the other side of the room. I saw a tiny foot, but that was it. I heard a mewling cry just before Ryley was intubated, and then they swept him from the room. I still find it strange how you can go from such an immense pain to nothing so instantaneously. A little bit later, the neonatalogist came back with two grainy Polaroid pictures of my son. He said, “You have a feisty fighter on your hands.” And he left the room. I was moved back to my antepartum, now a post-partum, room, and soon after, a hospital grade breast pump was rolled in. I started pumping not three hours after Ryley was born. He needed it. Had to have it. Shortly after that, I was put in a wheelchair and rolled to the tiny NICU in that hospital to see Ryley before he was transferred to the NICU he would call home. Michael pushed me in that chair across the room. We got to the warming table, and there was our son – all two pounds of him – splayed and naked, with tubes and wires coming out every part of him. I don’t think I consciously thought I needed some “normal”, but looking back, I know that’s what it was. I needed something, anything normal to help me believe Ryley could survive. I grew up around babies….and every baby I’d ever been close to grabbed your finger when you stuck it in their palm. So I placed my finger in Ryley’s ridiculously small palm, and he grabbed on. His hand could not reach all the way around my finger, but he was holding on. And I breathed. The doctor and nurse going with him explained he was stable, and doing well. They were taking him to another hospital ten minutes away. I said goodbye. I would not see Ryley again for five agonizing days. When I think about those days now, I come perilously close to losing it. He was alone. I was not there. His mom was not with him. Those five days haunt me. The minute I was released (and I practically ran from that hospital, afraid they would say there was a mistake and I had to stay), Michael took me directly to Ryley’s NICU (neonatal intensive care unit). He showed me how to check in, how to wash my hands, how to know which pod/room Ryley was in, and then I saw him…I saw my beautiful (totally ugly) boy. And I got to hold him -which was a twenty-minute process to get me seated, and get Ryley out of his isolette and situated with his oxygen and tubes and wires. I had to hold him on a pillow because he was too small to hold in my arms. He once again held my finger, and I fell in love. I see that video and I look at those picture and am horrified…he looked so bad. Ryley had already suffered through jaundice and been under the lights. His poor little body and his brain were being asked to do things he just wasn’t prepared for. But he was that feisty fighter, thank God. At two weeks old, Ryley had a brain bleed. We were assured this was “normal” for micro-preemies. We would have to wait a week for the next ultrasound to know more. At this point, it was limited to the left side, and was a Grade I/II bleed. Two weeks later, the bleed was gone. At three weeks old, Ryley had his own staph infection. Again, this was considered “normal”. We were prepared for him to have a spinal tap, before he turned the corner. His staph was not the life-threatening staph infection I had (yes, I had a long-term IV placed in my right arm – which went through the vein directly to my heart – before I left the hospital and gave myself very high level antibiotics every 8 hours, every day, for four weeks). Ryley was a NICU rockstar in a sense. He spent “only” 36 hours on a ventilator – almost unheard of for caucasian, male 26 weekers. He did struggle with supplemental oxygen though. He was on CPAP (continuous positive airway pressure) for what seemed like forever. Eventually, Ryley became what is known as a “feeder/grower”. He had to learn how to eat and he had to show he could grow on his own. I remember the day I walked in and saw him “dressed” for the first time. Imagine that being a milestone for your child? He just had a hospital t-shirt on with his diaper, but that was such a huge step. I began to see the light at the end of the tunnel when Ryley was moved from the isolette (incubator) to an open crib. We were able to bathe him, dress him, “feed” him, play music for him. For the first time, I began to feel like a mother rather than a visitor to my own child. Ryley was set to come home on December 16th. I wasn’t holding my breath, but then he’d been doing so well. He was off all supplemental oxygen, was eating pretty well, gaining weight, and so on. The night before his scheduled release, he had an apnea/bradychardia episode. He had stopped breathing, and needed supplemental oxygen to get him back. We could not bring him home. He needed that oxygen for almost five days. I truly believe neither of us was really ready. His doctor then asked us, “How do you feel about Christmas Day?” I couldn’t count on it, but nodded my head. Now I was afraid of my own baby. What if he stopped breathing? What if is heart stopped again? What if? What if? What if? But on December 25th, 2000, after 93 days in that NICU, Ryley came home. I no longer had to sit staring at his crib in his room, praying for the day our family would be under one roof. My son was home. I didn’t sleep for a week. I was terrified. He slept in the cradle next to our bed, my hand on his chest to make sure his heart was still beating and he was breathing. But Ryley continued to be that feisty fighter. He has never been readmitted to the hospital, not even once. He does not have retinopathy of prematurity (eye problems), he hears perfectly, runs perfectly. He had some left side muscle tightness which we therapied out. He had a mild speech delay, which we therapied out. He had synagis shots every month for two years from October to May to keep him from getting RSV. We had a home health nurse out bi-weekly and then monthly his first two years. We had follow-up examinations with the NICU to make sure he was developmentally on track. We had constant weight checks. He had reflux. He had to take extra iron and vitamins. He was diagnosed with asthma when he was 4. He was diagnosed with ADHD when he was 8. He had a visual processing disorder which he has outgrown. And his head will ALWAYS have that long, narrow shape that all micro-preemies seem to have. But 10 1/2 years later, we are past the scary part. He is here.

It’s been a journey – and that journey is nowhere near complete. I can still see that ridiculously small, hold-in-one-palm baby when I look at him. I am forever in awe of who and what he is today. He is a miracle in every sense of the word. His story will always be part of him. And he is truly, wonderfully amazing.

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