Today is a date that reminds us just how fragile life is, and how lucky we are to be sharing our lives with our children. Every parent treasures each moment with his/her child, but since the day that Mairead had her stroke, we have been trying to be even more cognizant of how special she is and how lucky we are to have her. Some of you have never heard the whole story. I finally did write it all out so that when she is older, Mairead can learn about the ordeal and see just how strong she was when she was only days old. I've mentioned in the past that I use this blog as a 'virtual baby book,' so this is really the only written record of my kids' lives. So, this is very long and strays from the usual posting of cute pictures and celebrations of milestones. Thanks for reading.
The morning of August 1st, 2007, started out as the morning I felt most ‘complete.’ We had just brought Mairead home from the hospital the afternoon before, and she had slept three hours at a time over the course of the night. She seemed to be a happy and healthy baby. Dave and I both got up early to get ready for her visit to the pediatrician. They thought she was a bit jaundiced when we left the hospital, so they just wanted to check on her the next day.
I remember sitting in our living room, eating cereal and staring out the window at the beautiful day. I could see the mom across the street get her kids into the stroller for a walk. I was sitting on a comfortable couch in our first home. My husband was in the kitchen doing dishes and playing music for our brand new baby girl. I thought that this was what I had been waiting for and didn’t even know it. Just a simple life- a loving husband, a home, and a child I already loved more than life itself. I took our happiness for granted, just as I took it for granted that I would have a healthy baby. I will never take either our happiness or our children for granted again.
We took Mairead to the pediatrician, just one town over, for her 10:30 appointment. We sat in the waiting room with two other couples who had baby girls. One girl was 10 days old, the other, two weeks. All of us proud parents showed off our darling daughters. The dad sitting next to me commented, “Wow, we are all so lucky to have these beautiful girls, aren’t we?” We all smiled and nodded in agreement.
The office was running late and we didn’t get in to see the doctor until about 10:45. As the pediatrician was congratulating us and looking over Mairead, she commented that Mairead did seem a bit jaundiced, and that we should probably take her over to the hospital for a bili check. We were dismayed- was something wrong? Would they keep her long? Couldn’t we just take her home and enjoy her? As the doctor was talking to us about her bilirubin, she stopped speaking mid-sentence and froze as she looked at Mairead. I looked to see what was going on and saw that Mairead had turned her little head all the way to the right, and that her arms and legs were drawn close to her body. Her eyes seemed to roll back in her head, and her color was changing. The doctor said, “Did you see that? HOLD HER!” And she ran out of the room to call to another doctor, “I need help in here!” She rushed back in and took Mairead. I asked, “Is she having a seizure?” For some reason, I just knew that was what was happening. The doctor told me she was, and I could see Mairead beginning to turn blue. I heard a nurse call 911 and could barely see straight. Dave and I were huddled in the corner of the small exam room as another doctor and two or three nurses came in. One doctor performed CPR on Mairead as it appeared she had stopped breathing. Once she was breathing on her own, another doctor started an IV in case the paramedics needed it. The paramedics came in to the already crowded room and asked for her car seat. We strapped her in and they put it on the stretcher to wheel her out of the office. The other parents in the office and hallways stared in horror as we walked out with the medics and our tiny little baby. We had no idea what to expect and no idea how to react. She was covered with her tiny Red Sox blanket and just looked as though she was sleeping.
I told Dave to call my mother while he followed us in the ambulance. He was visibly upset and the EMT talked to him for a minute to make sure he was ok. I don’t think I was crying. I don’t think I was anything- I just followed the stretcher and sat numbly in the ambulance. The EMT was being very kind and asked me to hold the oxygen mask for Mairead. I think he wanted me to feel like I was helping. I think I thought it helped at the time. I was trying to stay in control and convince myself that she was fine. That this wasn’t happening to us. We had just left the hospital less than 24 hours before. How could something be wrong? She had to be ok. In the ambulance, she seized again. The medic called it in to the ER and the voice of the person on the other end crackled over the radio. “Three year old baby?” She said. “No, that’s three DAY old baby,” corrected the medic. “Ok.” Just three days old. So fragile—life is so fragile.
When I walked into the ER and saw what I did, I knew that she was definitely not ok. I saw transport take an elderly woman out into the hallway so that we could have the largest room in the ER. I saw 2-3 nurses waiting outside the door for us, one of whom seemed to be assigned to just me. She was telling me I looked great and that she would keep me with Mairead. We walked into the actual exam room and there were literally about 30 people in there. I thought, “Oh God. Something is really, terribly wrong here.” There were neonatologists, doctors and nurses from both the ER and the NICU, respiratory therapists, the helicopter transport team in case they had to Med-flight her, neonatologists, a social worker, someone from admitting, and I don’t even know who else. They don’t get that many people in one room unless something awful is happening, and I knew it.
The nurse assigned to me was great about making sure that I could see Mairead the entire time. She was awake and looked ok, but then she seized a third time. The nurses were telling me something about a bolus of Atavan and some other medication. They were asking me questions about her birth, how she had been at home, did she seem ok? I don’t know how I answered. I just didn’t take my eyes off of her. Dave came in at some point and told me that he had talked to both of our mothers and that my parents (an hour away) were on their way. His mom was four hours away and praying for us.
They decided that she needed a head CT and took her down the hall. We were allowed to follow and spoke to another doctor while they did the CT. This woman was a neonatologist and told us not to worry- they would find out what was going on. Though they did figure out what happened, they never found a reason why, and this is still a source of worry for us. After the CT, they took her (and us) to the NICU. As we were winding through the hallways, a nurse from the ER popped her head out of a doorway and said, “Its clear (the CT).” I was pretty amazed at how quickly they had that information—I guess seizures in a 3 day old baby will pretty much clear the radiologist’s schedule. That was another sign that something was really wrong. It was like every specialist in the place had dropped everything to help us.
The staff then settled Mairead into a private room in the NICU and whisked us off to a nearby room to sit and wait while some other specialists came in to start IVs, order more tests, etc. For about five minutes, Dave and I were alone. No doctors, no nurses, no family, and most sadly, no baby. I broke down at that point. All I could manage to get out was to tell Dave that if they came back to us with any kind of bad news, we needed to get her baptized. I realized the severity of what I was saying. I wanted her baptized in case she died. I have never been at such a low point in my life. What terrifying contrast to just 36 hours before when I felt the most joy a person can feel as I brought my daughter into the world.
A social worker came in and asked us some questions about how we were doing, what did we need, etc. She told us what the doctors were doing and what would happen now, and that she was working on getting us a room in the NICU so that we could stay at the hospital. Good thing. There was no way I was leaving. Soon after that, my mother arrived and I lost it again. The next hour or so is really a blur. We were waiting in this tiny room and my uncle and then my father arrived. I remember crying a lot and then having to figure out how and where to pump. I remember the nurses bringing me food and something to drink. Honestly, the next 24 hours are pretty much a blur. A combination of waiting, sitting at Mairead’s bedside, talking to doctors, and nodding numbly as they told me they didn’t have an answer yet.
A bit later, they came in and told us we could see her. We walked in and she was sleeping in the open isolette. She had two IVs in, a heart monitor, an Oxygen monitor, a blood pressure cuff, and a thermometer clipped to her. She looked so tiny and helpless surrounded by all of the equipment. I didn’t even know if it was ok to touch my own child. I reached out and put my hand on her tiny fist and started to cry all over again. Did she even know I was there? Was she in pain? Scared? She didn’t even flinch when I touched her and that scared the hell out of me. We were scared, helpless, and had so many questions. Mostly just, would she be all right? No one could tell us for sure. I had to ask if I could hold her (how unnatural to have to ask if you can hold your own baby). It took some adjusting of wires and some help from the nurses, but once I had her in my arms, I felt a connection to her that was unlike anything I had felt before. It was even stronger than when they had first handed her to me when she was born. It was as if now, now that she was in trouble, she needed me more than ever and it was my job to make sure that she would be ok. I think at that moment I really felt what it means to be a mom- to love someone so much it hurts, and to be willing to move mountains for her.
They did give us a room right next to the NICU, directly across from the nurses’ station. We spent our time holding or watching Mairead, trying to feed her, and trying to rest. Dave was incredible. He kept bringing me different food to try to get me to eat. He let me cry and told me she would be ok. I remember taking a shower in our hospital room that night and just sobbing. Dave came in and all I could say was, “I just love her so much.” It’s all I could think of. I just loved her so, so much.
The next day, they did an MRI and a few other tests. In the afternoon, a neonatologist came in to tell us that the MRI revealed a blood clot and that she had had a stroke. I remember saying something about how I was glad they found the answer. And then I realized that the doctor had just said, “Stroke”. What? Babies don’t have strokes. Mairead was healthy. No problems in the pregnancy, no problems at birth. How could she have had a stroke?
The neonatologist showed us the MRI and I could see the clot for myself. It seemed huge in the image of her tiny brain and there was no denying it. The doctors had no idea what caused it. They asked to test Dave and me for clotting factors and genetic mutations. Eventually, those tests came back without answers. They ran a million tests on Mairead- none that told us anything about why this happened to our beautiful girl. A neurologist came to see her and told us that these things do happen, but they are rare. They are especially rare in babies who have no other health issues. And her future? That was unclear, too. He told us that the brain is an amazing but tricky organ. That in babies, the brain can re-wire itself to heal. This is wonderful, of course, and worked to Mairead’s advantage, but it is clear to us now that her brain re-wired itself a little differently than it should have. I remember being so desperate for answers, and not finding any. Unfortunately, that seems to still be a problem for us. I wanted her doctors to tell us why this happened and how they were going to fix it. Neither of those problems seemed to have an answer then, nor do they now.
We spent five nights in the NICU with her before we could bring her home. One thing that stays with me is that the nurses were amazing. My mom is a nurse and I know what kind and wonderful people they are, but I believe there is a special place in heaven for NICU nurses. The one moment I remember most clearly and happily is when I was holding her and she opened her eyes for the first time after the seizures. Her baby blues were the most beautiful thing I had ever seen, and I think that was the first time in my life that I cried from pure joy.
I could write more about how the rest of the days went, what the treatment plan was, and how scary it was to bring home a baby who had almost died after a blood clot with no known cause stopped her little brain from working. I could talk about how I was afraid to sleep because I thought she could seize again, or she could stop breathing and I wouldn’t be awake to save her. It’s all too much and too hard. I wanted to write out what happened to us on that day so that when she is older, she can read it for herself and know two things- one, how amazing she is for overcoming such a terrifying event at such a young age, and two, just how much I loved her from the moment she was born. That love is greater than I ever imagined and deeper than I could ever put into words, and I thank God every day that she is still here for me to love as much as I can.