THE MIRACLE

January 24, 2017

Joe’s birth story takes some time to tell because there are many small details that all come together to create the incredible outcome we experienced. It’s a long one. Please take your time, take breaks, read a little and come back later, whatever you need to do. But I promise everything I share has a significance. This story is my most cherished and intimate life event and I thank you for coming along as I journey through it in my mind’s eye.

 

 

 

 

 

Miracle: noun. An effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.

 

Simply put, Joseph was a miracle. His physical life was only a small part of the profound and lasting impression he made on my life, but it brought the most transformational experience I may ever have. The way he entered the world carries the magical aura of otherworldliness. Something extraordinary occurred that day and I was not in the driver’s seat. My actions were only reactions to the moves Joe was making - he was in charge, and for that I am eternally grateful.

 

Nine months is a very long time. I felt like time was playing cruel jokes on me as it crept and slugged along and then skipped way ahead while I wasn’t looking. Pregnancy was difficult in ways I didn’t anticipate (or appreciate) - I was emotional about my journey into motherhood, and constantly worried about the unknown of it all. I felt like I had been pregnant forever, but wasn’t quite ready for it to end yet. I had six weeks left to get my shit together, to nest, to cry, etc. before the baby came, and I intended to use every second of it.

 

I was thirty-four weeks pregnant and seeing my home birth midwife every two weeks. My normal appointments were on Thursdays and I had gone by myself the past several times because it was inconvenient for Chris to rush out of work that frequently. I was healthy and growing as expected, so it wasn’t a big deal to go alone- everything about my experience with my care providers had been routine thus far. I didn’t know the sex of my baby because Chris believed it was the last “true surprise” left in this world but I always addressed him as a boy, for no reason other than it felt right to me. At every appointment, I heard his heartbeat and learned about his positioning. Every time I left without any red flags, I exhaled a little bit, relieved that we were that much closer to having a healthy, happy baby. The day the red flag came I almost didn't believe it was happening - I was so close. My blood pressure was too high for the first time during my pregnancy. I was advised to check again the next day, and when that was also high, I was sent to the OB for blood work. I arrived at Mercy Hospital on Saturday morning alone, thinking the blood work would be low-key, in and out, as every other time I had ever had blood work done had been. But, goodness, was I mistaken.

 

The best thing about that day was meeting Dr. Barbara Patridge, my funny and wildly brusque obstetrician. Her hobbit-like energy could not have contrasted more with the ethereal and feel-good experience of my midwives, but I loved her immediately. This appointment entailed an entirely unexpected level of seriousness that I was a little slow to digest. I was in a hospital bed, strapped to a blood pressure cuff and fetal heart rate monitor and would be there until my blood work came back, at which point we would determine a “plan of care." What? When my nurse asked at one point if I felt the contraction I had just had I laughed. Hmm? Contraction? (I had felt nothing). I began to realize that my faith in my healthy, safe home birth might have been a little naive… Naturally, at that point I was requesting that Chris join me at the hospital.

 

After confirming I did not have pre-eclampsia, Patridge diagnosed me with gestational hypertension. This meant I would no longer qualify for a home birth, and she was now solely in charge of my care. Going forward, she would have to monitor me every week to ensure my and the baby’s health, and even though there was a good chance I wouldn’t carry to full-term, we would wait and see how things went. She showed me the baby on an ultrasound, revealing he (again, just my hunch) was in a breech presentation, and took me through a fetal nonstress test, on which he got a perfect 10 out of 10. Since we were going to be delivering in that hospital now, our nurse gave us a tour of the labor and delivery unit before we left, then sent us home with an appointment for the following week and some homework to complete. We were also given some paperwork telling us what to do in the event I went into labor. Great. An accelerated home stretch was not what I had hoped for. At Chris’s parents’ house, we ate tuna salad sandwiches and processed all the abrupt changes that had just taken place. We had literally just finished putting a crib together, and now we had half the time to finish all our preparing and freaking out. Gasp! I think I can safely say we were shell shocked.

 

That night we went to our friend’s house for their son’s first birthday party, hoping to distract ourselves with good company. I felt off the entire night, but couldn’t tell if I was feeling emotionally disturbed or actually physically bad. By the time we ate dinner, I was definitely having contractions, but they were seemingly random and not at all inconvenient, just noticeable. By the time we went home though, I was having regular, uncomfortable contractions. When they woke me up only a couple of hours after I had fallen asleep, I remembered the paperwork we had received that day saying to call your doctor if you are experiencing four contractions within an hour. So I began timing them. I had three contractions about fifteen minutes apart. As I began the fourth one, I felt a very strong kick inside me, followed by a bursting or popping feeling, and then a rush of fluid. SHIT! - I was either bleeding or my water had just broken.

 

I woke Chris up and rushed to the bathroom where I confirmed my water had broken. The black water caused more concern because I knew that meant my baby was in danger in there, and needed to come out as quickly as possible. At 2:30 am I called Dr. Patridge and she advised us to head to the hospital and made sure to prepare me to expect a c-section. I agreed that it was necessary to go ahead with that plan and we took off for the hospital.

 

I want to say now that even though it was preterm, and even though it was not ideal, I was still holding onto the probability that our baby would ultimately be fine. I believed we would bring him home at some point and would eventually hardly remember the drama we were experiencing that night. I clung to the hope and primal instinct that I would endure anything to get that baby safely into the world where I could protect him. I held onto this hope for as long as I possibly could.

 

My contractions had gotten crazy intense and really close together from the second my water broke. Every two minutes, lasting a minute and a half and definitely uncomfortable. They made prepping for the surgery quite inconvenient to say the least. I was talking to my doctors and nurses about what would happen after he was out - could I hold him on my chest? Would he be able to stay with me in my room? All they said was it would depend. It was important to me to preserve as much of my original birth plan as I could, but no one knew how realistic (or unrealistic) that was at the time.

 

The anesthesiologist that night was an enormous, knights-of-the-round-table-looking woman who was, in a word, mean. She came off that way at least. I was having contractions, trying to give basic information to the nurses, all the while she was rattling off all the legal jargon about s-blocks and such. Excuse me, this is my first baby and this is all a bit out of my comfort zone.  I felt like a small child being lectured and didn’t hear a word she said during that time. Once we were in the operating room though, she was the definition of a superhero. She swooped in and wielded her medicines and made me feel as safe and prepared for my journey as I can imagine was possible. My arms were strapped to a table and I was literally the most vulnerable I have ever been. Medical professionals were whizzing around me like bats out of hell, while I laid there feeling like my movements and thoughts were moving through jello. Everything was so overwhelming. My knight doctor was the calming presence I needed until my husband was allowed in the OR.

 

Chris was finally by my side and the procedure began. Our baby was born at 5:07 am on Sunday, May 22, 2016 - not even one day after I had met the woman who delivered him. I will never forget Chris’s voice as he announced to himself, to me, to the universe that our precious baby was a boy. The memory of the joy in his voice makes me emotional… so many dreams and hopes and expectations in those three words. Our son was earthside, he was ours. Unfortunately this joy was interrupted by what came next, and we would never be able to go back to that tender moment when we thought the worst was over.

 

The moment Dr. Patridge held Joseph in her hands, she knew his body was suffering. His arms and legs were very short, and his chest cavity was very small. She put a team into motion to care for him (he was unable to breathe on his own), while she concentrated on me. She informed us of what she knew at that moment, which was only what his body looked like from the outside, and what that could mean. There were two options: one being that he was a "little person" but would be fine, and the other option was that he had a skeletal condition that was "not compatible with life." As I write this I am struggling to find words to capture this experience. Language altogether fails miserably at every attempt. Chris had come down to my eye level to protect me from seeing anything going on around us and we just stared at each other. Eventually I said, “It’s Joey,” to him. We had decided to name him Joseph Michael if he was a boy (and thank goodness he was in fact a boy, because we never did pick out a girl’s name). He smiled and nodded, and we lingered in that space together, completely bewildered and out of control.

 

Chris had to briefly step out of the room for his own well being, and I was left alone. The pediatric physician who joined his care team confirmed that Dr. Patridge was correct in her assessment, and (bless her heart) dropped the hammer that it was most likely the latter scenario. Our brand new, helpless, perfect baby boy was not likely going to survive. I couldn't cling to that fragile hope any longer. In the face of this reality, it finally faded away. 

 

I went to recovery for the next 12 hours. I hate remembering being wheeled back into my room where my family was waiting for me. My mom was already crying. My dad’s face…  It was heartbreaking. It all began to sink in. I was helpless, devastated, cut open, paralyzed - I was living my worst nightmare. I was trapped on my hospital bed, weeping with my head in my hands. I had literally no idea what to do or what could be done. I wanted to vacate my body, to tap out of this lifetime and jump into another one. An easier one. I wanted everyone out. Why did I have to be on display for everyone to observe? Where was Chris? 

 

He had gone with Joe to the neonatal unit but came back to my room after a short time. We held each other and told each other what we were feeling. We both experienced the same emotions, the same thoughts, the same fears. We were ashamed of being selfish. We were terrified our baby was going to die. Our bond had always been one-of-a-kind leading up to this event, but it had instantly and permanently become impenetrable that day. We were unstoppable together, and even though we had no idea what we were doing, we knew we would navigate it all as one force of love.

 

Later that morning, Joe was transferred to Children’s Hospital in Cincinnati, just twenty minutes from Mercy Hospital where he was born. The transport team secured him into a travel bed that looked to be engineered by NASA and wheeled him into my room before leaving on their fragile journey. He was a heap of wires and tubes and stickers and monitors and beeping and all kinds of magical science. The only access point I had to his body was a circular cut-out in the plastic where I could reach in and touch one of his tiny feet. I felt like we were complete strangers. I couldn’t see him through the mess. He didn’t look familiar to me at all. I was hoping he would look like mine, that as his mother my entire body would scream with recognition like, “YES! THAT’S YOUR BABY!” But nothing resonated. I held his foot and searched all over his body with my eyes, and knew how desperately he needed me. He needed my touch, my voice, my smell, my energy, and I needed his. Words swirled around in my head and I wanted to speak to him, but I was surrounded by strangers, people I both knew and didn’t know, but they were all strangers to this relationship. I didn’t want anyone else to hear the most sacred first words spoken from a mother to her child. I choked on all the things I couldn’t say because everything about this moment was wrong. I tried so hard to connect to him somehow through all the mess surrounding him, but I just couldn’t quite reach him. I felt defective, like I should have been able to bond with him instantly upon seeing him, but something wasn’t working. Was something wrong with me? It was awful and so despairing. Soon enough his team needed to be on their way, and so by 8:30 am they were off to Children’s. I remained in my labor and delivery room, separated from Joe for the next thirty hours.

 

I didn’t feel like a mom. I had birthed a 4 pound 9 ounce child and had the incision to prove it, but lacked the entire experience of motherhood. No skin to skin, no bonding, no latching, no love hormones… I had to focus on my own healing, which I didn’t care about whatsoever. I yearned to be by his side, to hold his hand, to talk to him, to smell him. I needed to get there, and would do so as quickly as possible, but I was terrified. What if I had missed my chance to bond with him? What if I got to Children's and couldn't force myself to fall in love with him? I worried that all the instincts I had looked forward to feeling would completely abandon Joe and me. Like we somehow were left out of nature's club. A big part of me was afraid to find out that my fears were true.

 

While in recovery on Sunday, Chris went to Children’s to visit Joe two different times: once in the middle of the afternoon to meet with doctors, and again that night with my sister, Chelsea. I want to stop here and say that my sister is seven years younger than I am, and even though that puts her in a very different life place, she is always my dearest and most precious friend. She was ecstatic to become an aunt, and learning about her sweet Joey’s story devastated her in ways that I’m sure I don’t fully understand. Being as young as she is, and this story being as scary as it is, she could easily have distanced herself from all of it. But she dove right in, head first. She gave us every second of her time and energy during Joe's life. She never hesitated to do anything she could for our family. The fact that she went with Chris to visit her sweet nephew when I couldn’t gave me such priceless peace of mind. I will talk about her role in all of this another time, but I had to touch on the gratitude and pride I feel because of her courage and presence.

 

 

While Chris was at Children’s the first time that day, he and his mom, Becky, met with Dr. Bianca Russell, Joe’s geneticist, as well as the palliative care team on Joe's case. In the Wallen household, all of Joe's care team members are superheroes, but Bianca is like the equivalent of Glenda the Good Witch. She is Obi Wan Kenobi, Albus Dumbledor, and Mother Teresa combined. She is beautiful, brilliant, gentle, thorough, brilliant, compassionate, and also brilliant. We love her as if she is a part of our family.  Chris and all the doctors conference called with me and our family members in my hospital room. Even though Bianca was delivering the news we were all dreading, she did so with grace, utmost reverence for our feelings, and compassion for our family. It was quite extraordinary. During this conversation, she showed Chris the results of Joe's x-rays. The images revealed that Joe had a rare skeletal condition known as Osteogenesis Imperfecta Type 2, which was incurable, and incompatible with life. The disease most notably restricted the healthy growth of his lungs, leaving him unable to oxygenate his body with the breaths he took. His bones were so fragile that he had sustained several injuries while in the womb, as well as during his delivery. In the NICU at Children's, he was being kept alive by a ventilator, and being kept comfortable by regular doses of morphine. As Joe's parents, Chris and I would somehow have to decide when to remove the supports and ease him out of this life.

 

Ok, let’s take a breath here... I have been very intimately detailed thus far, trying to convey the sequence of events authentically and accurately while also allowing my feelings to come through. It’s lengthy and heavy, but so important for me to share. Let’s bring it all together now.

 

 

As Chris and I began to wrap our minds around what was happening, we started trying to make meaning out of it all. Our sorrow for ourselves was completely insignificant compared to the anguish we felt for Joe's sake. The fact that such an innocent little being was in so much pain was utterly unbearable. So many questions surfaced and so many emotions tried to cast their one-sided shadow upon this incredibly complex incident. Anger wasn’t enough, sadness wasn’t enough, depression wasn’t enough, self-pity wasn’t enough. None of the bad feelings took hold or helped give any relief. Being separated from him made everything so much worse. I was simultaneously hating every second that I was away from him while also feeling relieved I was in the safety of a recovery bubble where I didn't have to face anything yet.

 

A visit from Dr. Patridge after Joe had gone to Children’s provided some much needed comfort. She had a container of knit hats that she and her partnering OB made while their other various patients were in labor. She wanted us to choose a hat for Joe. We picked a red, white, and blue hat (because fireworks) that stayed in his hospital bed the entire time he was at Children's. She sat down with her coffee (which she unknowingly spilled everywhere) and talked to us in the early morning hours, before we knew for sure about Joe’s diagnosis. She was sullen and stoic, but still her sense of humor shone through. She was undoubtedly questioning the medical advice she had given me and probably thinking I was looking for someone to blame. We had just been through a trauma together. She had held my son in her hands, she had repaired my physical body so that I could get to the business of healing. I loved her and wanted her to stay near me forever. As she recounted all the details of what had transpired over the past twenty-four hours - from my blood work appointment to Joe’s birth, she reflected on it all and said, “What a powerful little guy.” The idea that Joe had been in charge of everything from the beginning had already been stirring in my heart, but hearing my medical doctor say the words sent me squarely into full-on belief mode.

 

From the conversation with her, I have come to believe wholly and passionately that Joseph orchestrated every single detail of his birth so that he could fulfill a purpose. Maybe his purpose was meeting me and Chris and making us a family. Maybe it is still unfolding. But the fact that our sweet child lived a life at all under the circumstances that he was facing, is nothing short of a miracle.

 

The first, most glaringly important piece of evidence for this notion is that we didn’t know. From what we have found out about OI2, most mothers find out that their babies have it at their twenty-week anatomy scan. Our anatomy scan had come back normal. This oversight was not malpractice, it was just happenstance. Joe’s body parts were all measuring within the normal range at that point, however his legs were unable to be measured that day. The technician said Joe was in a breech position and down so low that his legs were too squished up to measure (like a buddha baby, is actually what he said). Since everything else seemed within normal range, it was never recommended that we get a follow up scan. His femur would have been the red flag that led us to diagnosing him in the womb, but he somehow concealed it from us. I consider this to be miracle number one. When I think of what it would have been like to find out halfway through my already unpleasant pregnancy that Joe would not survive, I am overwhelmed with gratitude that we did not know. His entire life happened because we didn’t know. I wouldn’t change that for anything.

 

 

 

If my blood pressure hadn’t been high, I wouldn’t have met Dr. Patridge and would have attempted to have a home birth with my midwives. Joe’s body would not have survived being pushed out (actually, no babies with OI2 survive being pushed out because their bones are too soft), so he had to be born via c-section to be able to live. Maybe my blood pressure went up as a warning that he was in fact going to be exiting my body under distress, giving me just enough time to assemble the necessary team members to respond. Once I met his doctor, he knew it was safe to bust his way out of there. He stayed breech and put meconium in his water to make it clear his exit was urgent. Had ANY of these details occurred differently, there would have been no Joe at all. This miraculous being needed to be born, and he needed to live.

 

There are times when I am overcome by the physical loss Chris and I endure every day. But my grief does not exist on its own. It is inexplicably intertwined with the divine light of the miraculous baby who made the three of us a family. I cannot singularly define this experience as “bad” or “unfortunate” (or as Patridge accidentally called it one time, a “disaster”) because it simply isn’t those things. Joseph’s love for us overcame every obstacle to bring him into our lives. This heavenly, cosmic love came straight from God or the universe and put him in our lives to show us the power of just that: love. I am joyful, I am grateful, and I am fully conscious because against all odds he lived, and now it is my privilege as Joe's mom to share my experience with others.

 

 

 

I am so grateful to those of you who wanted to know how Joe came into the world and why Chris and I consider him to be a miracle. You are the reason I am confident enough to put our story out there. I hope having read this will help provide some context for you as I continue sharing our beautiful moments with Joe. Thank you for your support and your love.

 

Joe on,

Aubrey


 

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