Where my journey began
My journey began eight years ago. I had just begun married my best friend and started in a career I had worked for since childhood. We decided it was a perfect time to start our family. I became pregnant quickly with the first grandchild in our family. It was an exciting time for all of us and I reveled in the joy of pregnancy and impending motherhood. I also learned the morning sickness was a great misnomer as I felt sick all day long! The sickness eventually passed and my stomach began to swell. Maternity clothes were purchased and my ultrasound was scheduled. We were thrilled to see the baby, our baby, on the screen. The technician took great care in examining every inch of our baby. We left the ultrasound department that day with an unsettled feeling but at that time we had no reason to believe anything was wrong. When we met with my doctor we were told there were some problems with the baby. The kidneys could not be visualized, nor could the bladder and I had little to no amniotic fluid. They also saw what appeared to be fluid sacs at the baby's neck and base of its spine. We were told there were a few possibilities, but neither was compatible with life. Our child either had Trisomy 13 or 18 or Potter's Syndrome. In our case, it would be Bilateral Renal Angenesis (BRA). Without kidneys, which produce amniotic fluid, the baby's lungs would not develop properly and the baby could not survive outside the womb. Adding insult to injury, we were told that the baby could die at any time in utero.
The pain I felt at that moment was breathtaking. Talk about being blindsided. I had no idea such a condition existed and my faith in modern medicine was such that almost anything could be fixed. It was beyond devastating to hear those words. We were given a choice and time to consider it, early termination of the pregnancy or carry the baby as long as possible. We went home and called our families. My husband actually did, I could not say those words. I remember how he cried and hoped to never hear that sorrow from him again. He carried me that evening. Next we researched and found little, but enough to confirm what the doctors had told us. Despite this, I prayed for healing and I clung to hope for our baby. It was a difficult weekend to pass.
A follow up appointment with a higher level ultrasound was scheduled and that ultrasound confirmed the earlier findings. We met with a genetic counselor to determine if there was some genetic predisposition that could be ascertained through family history. There was nothing. I remember that appointment well, it was on the anniversary of Roe v. Wade, I believe the 30th anniversary. I know this because it was on the news that evening. I remember going to Baker's Square for dinner that night and having pie for dessert. It was also the very first time I felt my baby kick. We then decided that I would carry the baby as long as possible and that his or her life would be taken by a power higher than ours. My job was to give the baby life and our job was to prepare to say goodbye when that life ended.
It was at that point I realized I had not purchased one item for my baby yet. Five months and nothing, I now look on it as a mother's sense that something was not right.
Carrying to Term
I went to work and sent an email around the office informing everyone my baby was going to die either before or shortly after birth and asked everyone to respect how difficult it was for me. Blessedly, there were a few who reached out to me and felt free to speak with me about my pregnancy. I am sure it was difficult and uncomfortable for them. Words mean everything sometimes. I knew no one who had gone through what I was going through and my husband could not even relate to what I was experiencing. He could go to work and perhaps sometimes be able to leave it all behind for a while. I carried it with me literally. Every time our child moved from within it filled me with joy and reminded me that our time together was short. I worried that every kick would be the last and often just sat and prodded my poor belly until I felt movement. My husband could be out and about by himself without receiving questions about the baby.
I felt that the words "My baby is going to die" were emblazoned on my forehead. That somehow everyone could see the sadness in my eyes and the burden in my heart. I saw pregnant bellies and newborn babies everywhere. I indulged my pregnancy cravings and fed my grief and my belly betrayed my desire to just disappear. Questions followed about my pregnancy. Each one was an on the spot decision as to whether to acknowledge the depth of our situation or simply politely answer and question and move on. I felt as though I had the most rarest and ugliest of diseases. One that no one wanted to talk about, even if they knew I had it. I am sure some meant well and hoped not to cause me additional pain. The silence was deafening.
I felt that the words "My baby is going to die" were emblazoned on my forehead. That somehow everyone could see the sadness in my eyes and the burden in my heart. I saw pregnant bellies and newborn babies everywhere. I indulged my pregnancy cravings and fed my grief and my belly betrayed my desire to just disappear. Questions followed about my pregnancy. Each one was an on the spot decision as to whether to acknowledge the depth of our situation or simply politely answer and question and move on. I felt as though I had the most rarest and ugliest of diseases. One that no one wanted to talk about, even if they knew I had it. I am sure some meant well and hoped not to cause me additional pain. The silence was deafening.
Preparing to Say Goodbye
While nourishing the life in my womb, we also had to prepare for that life to end. My husband set about making a tiny casket for the baby. I crocheted a baby blanket. Time passed and it soon became clear that a bigger casket would be needed. So my husband lovingly crafted another tiny, but larger, casket. We were able to do these things and had accepted the reality of what would soon happen, but even so there were some things I just couldn't bring myself to do. I could not make funeral arrangements, it was difficult enough to give words to what would happen, but to plan how it would go was more than I could handle. The days, weeks and even months passed by. We roamed the cemetery and chose grave plots, for ourselves with our precious baby in between. How many 24 year olds can say they have a plot in the cemetery? That time was a gift, time to absorb, prepare and tackle each task individually.
I remember discomfort carrying the baby, it was fairly high up and moved into a transverse position. When the baby stretched I could literally see my stomach expand left to right and it was very uncomfortable. I could feel a big round head on the right side of my belly and bottom on the left. When I would wake up in the morning baby would be all bumbled up on whichever side of my stomach was resting on the bed. Baby remained in a transverse position and with the lack of amniotic fluid that's where it stayed. Our doctor graciously gave us the opportunity to meet our baby alive by scheduling a c-section for 37 weeks. We would soon meet our first child. The night before baby was born was so bittersweet. I was so excited to meet the precious child I had grown and loved over the past 37 weeks, a child whose strength and will to live inspired me to continue our journey towards his birth. But at the same time, I was so sad to let him out knowing that he was only safe inside my womb. I was also really scared to see the baby knowing that there may be other physical problems. There was also nerves and fear surrounding having a c-section. Especially since I had never had major surgery. With so many unknowns, there was still one certainty, that our home would remain empty.
I remember discomfort carrying the baby, it was fairly high up and moved into a transverse position. When the baby stretched I could literally see my stomach expand left to right and it was very uncomfortable. I could feel a big round head on the right side of my belly and bottom on the left. When I would wake up in the morning baby would be all bumbled up on whichever side of my stomach was resting on the bed. Baby remained in a transverse position and with the lack of amniotic fluid that's where it stayed. Our doctor graciously gave us the opportunity to meet our baby alive by scheduling a c-section for 37 weeks. We would soon meet our first child. The night before baby was born was so bittersweet. I was so excited to meet the precious child I had grown and loved over the past 37 weeks, a child whose strength and will to live inspired me to continue our journey towards his birth. But at the same time, I was so sad to let him out knowing that he was only safe inside my womb. I was also really scared to see the baby knowing that there may be other physical problems. There was also nerves and fear surrounding having a c-section. Especially since I had never had major surgery. With so many unknowns, there was still one certainty, that our home would remain empty.
Hello Wyatt
Finally, the big day arrived. Even though it was early June, it was still pitch dark as we made our way to the hospital that morning. I clearly remember what I wore that day, a bright pink flowy top with pink Winnie the Pooh knit capri pants (I have worn the same outfit for the birth of all of my children since). We were surprised by a wonderful balloon bouquet placed in our room by one of my husband's co-workers. It was no nice to see something cheerful and baby-like first thing. We began prepping for the c-section. My mind was a blur but a few things stood out that morning: the lab technician took probably close to a half dozen stabs at my arm and hand before finally getting my blood drawn and the anesthesiologist shared with us that he had also lost a baby prior to me entering surgery. I remember family was there, a few pictures were taken and a few nervous laughs shared.
After getting my spinal, I only remember waiting waiting for baby to be born, I'm sure it was much quicker than my memory recalls. Finally we heard "It's a boy!" and tears exploded from my eyes. Then I heard a sound I had been completely unprepared for - the sound of my baby's voice. He cried and I will carry those cries with me always. It never occurred to me that such a thing would be possible because of the underdeveloped lungs. One of many surprises that morning. The staff quickly cleaned up little Wyatt, a name chosen by my husband, and handed him to my husband. We had a priest come into the OR to baptize Wyatt as well as my father and father-in-law who were master photographers that morning. Every moment captured is a precious reminder of his brief life.
Because of the c-section I was confined to the operating room table for a while after Wyatt's birth and could only look at him and snuggle from the side. I remember softly caressing his chubby little cheeks. He was a good sized baby for 37 weeks and for having Potter's Syndrome, six and a half pounds! He had short fuzzy dark hair, dark eyes and his hands were curled into the cutest little fists. Appropriate for my little fighter. His blue hat kept popping off his chubby little head! We were soon taken back to my hospital room to meet the family gathered there. Everyone had a chance to cuddle sweet Wyatt. I don't remember how or when people started leaving, but I know the numbers dwindled and that we were given interludes with just me, my husband and Wyatt in the room. We took turns taking pictures, both color and black and white. Pictures of his hands, hair, ears, face. We kissed and snuggled and told him how much he was loved. My husband was especially giving that day, he unselfishly let me spend the most time touching and snuggling our child, a kindness I could never forget.
Wyatt was undressed and weighed in the typical hospital bassinet in our room. It had been raining all morning but when he was placed in the bassinet in front of the window sunlight flowed into the room and landed where he lay. The chaplain told us she believed this was the moment that his soul left us. Sure enough, shortly after his heartbeat was gone.
After getting my spinal, I only remember waiting waiting for baby to be born, I'm sure it was much quicker than my memory recalls. Finally we heard "It's a boy!" and tears exploded from my eyes. Then I heard a sound I had been completely unprepared for - the sound of my baby's voice. He cried and I will carry those cries with me always. It never occurred to me that such a thing would be possible because of the underdeveloped lungs. One of many surprises that morning. The staff quickly cleaned up little Wyatt, a name chosen by my husband, and handed him to my husband. We had a priest come into the OR to baptize Wyatt as well as my father and father-in-law who were master photographers that morning. Every moment captured is a precious reminder of his brief life.
Because of the c-section I was confined to the operating room table for a while after Wyatt's birth and could only look at him and snuggle from the side. I remember softly caressing his chubby little cheeks. He was a good sized baby for 37 weeks and for having Potter's Syndrome, six and a half pounds! He had short fuzzy dark hair, dark eyes and his hands were curled into the cutest little fists. Appropriate for my little fighter. His blue hat kept popping off his chubby little head! We were soon taken back to my hospital room to meet the family gathered there. Everyone had a chance to cuddle sweet Wyatt. I don't remember how or when people started leaving, but I know the numbers dwindled and that we were given interludes with just me, my husband and Wyatt in the room. We took turns taking pictures, both color and black and white. Pictures of his hands, hair, ears, face. We kissed and snuggled and told him how much he was loved. My husband was especially giving that day, he unselfishly let me spend the most time touching and snuggling our child, a kindness I could never forget.
Wyatt was undressed and weighed in the typical hospital bassinet in our room. It had been raining all morning but when he was placed in the bassinet in front of the window sunlight flowed into the room and landed where he lay. The chaplain told us she believed this was the moment that his soul left us. Sure enough, shortly after his heartbeat was gone.
Goodbye Wyatt
We chose to spend some precious time alone with Wyatt to say our final goodbyes and prepare to let him go. At some point and time my husband had changed from his scrubs to regular clothes. I was finally able to sit up in bed and hold Wyatt a little easier. I believe we let him go in the early afternoon. And then we were alone.
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