Postnatal Duplicity

The morning after A Life Changing Day I awoke far earlier than I would have liked to at that stage. Let me be totally honest with you.  I awoke earlier not just by an hour or two but by the entire length of the rest of my life. I had a mammoth responsibility awaiting me and I was not ready for it. Not by a long shot.

Duplicity! That’s what it was. I had been led to believe that the morning after giving birth I would be basking in the glow of the postnatal. I would have a bonny (do they even use that word anymore?) baby boy in my arms. I’d almost certainly feel as though they had opened me up with an electric tin opener and darned me back up with yarn but none of that would matter because I would have a baby! Let’s do an inventory on this… No postnatal glow, in fact I was so pale that I think my entire being was a shadow. My arms were as empty as the promises people had been making about me getting through the birth smoothly. My insides did kind of feel like they had been through a mincer but that was no biggie. What was a big deal, vital actually, was there was no baby!

My mind was a mess. I had given birth to a perfectly incomplete baby boy and somehow it was my entire fault. I wasn’t exactly sure how yet but I was responsible for him and you could bet your last breath that I was going to stand up and be responsible for my screw up. Everything that had happened the day before seemed both crystal clear and dreamlike. For a few minutes, lying between that impersonal hospital linen, I began to slide backwards in my mind. Losing grip on reality. Silently gulping for air. I wasn’t quite sure where I was. I could have been in any one of the psychiatric wards I had visited years ago. I could have been back in ICU fighting for my own life. Suddenly, I remembered that I was in the maternity ward in a Sandton hospital. This wasn’t about me. Damn it! I was not going to allow myself to slip into the dark shadows of my mind. Damn it! I was going to sit up and take control and be an adult and try to be a Mommy to that baby boy upstairs. DAMN IT!

Having gained as much control over myself as was fair to expect, I thought back to the night before. Both J and my families had been gathered in the suite when my OB/GYN and the paediatric surgeon had visited. The surgeon had clearly been called away from his family to come and attend to mine. He had slipped into the room silently in his shorts, t-shirt and flops as my OB/GYN tried his best to explain what he knew about Peanut’s condition. My doctor had even mistaken him for one of the family as he turned to leave and somehow, as devastated as I was, I knew that I was going to like him. He had explained the facts briefly. Bladder exstrophy… 1 in 50 000… multiple surgeries… some are never continent… The words barely sank in.  Before he had left he had asked us to gather any questions we had for him and advised us to avoid Google.

In the light of the not-so-promising morning, I had two things I had to do. I had to Google ‘bladder exstrophy’ and see exactly what it was that we were facing and I had to go up and see my son. HOLY MOTHER OF… That was the first and last time I ever typed that into a search engine and I nearly didn’t build up the courage to go and see my child after that. Just over twelve hours after I had been wheeled down to maternity in my bed by nurses, J wheeled me up to NNICU in a wheelchair. We left it at the door, scrubbed our hands at the basins and walked apprehensively to the very back of the unit. Attached to about a billion beeping machines lay our baby boy, his abdomen and chest rising and falling. There seemed to be tubes coming out from all over his tiny little body. A friendly nurse introduced herself. Insisted I sat. Then busied herself taking readings and emptying and filling syringes attached to tubes. I sat there for a few minutes, tears silently running like fiery rivers down my cheeks. I managed to make it out of the unit before I felt that familiar pain in my chest, the one that meant that my heart was shattering. I was sure that if I didn’t die from a broken heart I’d be sure to be poisoned by the shrapnel of its pieces.

Later that day the surgeon came to see us. They had scanned, x-rayed, poked, prodded, tested and fiddled with my tiny person upstairs as much as they possibly could over the course of the day and throughout the previous night. They had a clearer idea of what we were up against and he was there to deliver the news. I already knew we weren’t facing the worst possible case because children born with bladder exstrophy are usually born with their bladders outside of their bodies. Peanut’s was inside, which was why we couldn’t pick it up in utero. It was simply exposed through the skin. There had never been pressure inside the bladder, so the bladder had never closed and was very small. The urine filtered straight from the kidneys into the bladder and from the bladder through a hole out of his abdomen. This was a massive infection risk. The surgeon then explained that all of his organs were there. Internal and external. He was incredibly lucky to have a fully formed and normally sized penis and scrotum.  Although at this stage the penis was nonfunctional as the urine was coming straight out of the bladder. His umbilical cord was positioned right under the penis, meaning that one day you wouldn’t see his belly button when he wore a costume because it would be so low. He had two urethras and the surgeon was particularly excited about this because he was one of only seven documented cases in the world, like his, to have a urethra and the only one to have a double urethra. Finally, children with bladder exstrophy usually have hip dysplasia and this was the case with Peanut. So, what did all this mean? Peanut would need surgery. They would use a piece of bowel tissue to close the bladder and would use the two short urethras to make one that extended to the end of the penis. A catheter would be inserted to keep them open and help them to grow. They would move the entire belly button up to where the belly button should be and insert the umbilical cord there to fall out as it would have anyway, leaving a new cosmetic belly button. They would have to bring his hips together to fuse the pubic symphysis. After that his legs would be up in a mermaid sling, hanging in traction, for three weeks. We were looking at about six to eight weeks recovery. He had been consulting with some of his colleagues to make sure he got this all just right. Then he dropped the biggest bomb of all. The surgery had to be done as soon as possible. It would be done on Thursday night. When Peanut was three days old.

I don’t remember much about the next couple of days. J and I were still staying in the suite in the maternity ward. I can’t tell you if I was in pain or not. My pain was completely irrelevant. I had given up on the wheelchair after that first trip to NNICU despite orders. I took the pain pills and the sleeping injections. Other than that I spent as much time as I could next to the tiny little body upstairs. We were allowed to hold him once but that was about it because of risk of infection. While millions of mothers were holding their newborns to their breast or cradling them in their arms with a bottle, I was allowed to hold the little syringe about 20 centimeters above his head as they poured the formula into it and it drained through a tiny tube into his nose using gravity. Once again I felt like the biggest failure of a mother. I spent plenty of time just staring in wonder at this little human. He was absolutely perfect except for that tiny area around his lower abdomen. Some of the time his eyes were open, most of the time they were closed. I spoke to him anyway. I told him how much I loved him. How sorry I was for screwing up, for ruining his life before it had even begun. I told him it was okay to be scared, that I was petrified. That I was scared for him, I was scared that he was hurting, I was scared that he would have to hurt more and more than anything that I was scared to death that I would have to go through the rest of my life without him. We srarted to read to him at night. We began with a book I’d been given as a gift for my baby shower, Audrey Amaka, The Brave Little Giraffe. I told him how brave he was and promised him that if he fought hard enough that we would take him to see a real giraffe just as soon as he was big enough.  It was during those early days that Home Affairs came and we registered him. We had had his name picked out for months even though very few people knew it. Peanut officially became Nate. I spent a lot of hours sitting there when he was sleeping with silent tears running down my face. What I never ever did was fall apart beside him.

Thursday arrived far too quickly. I spent the day dividing my time between talking to Nate, filling out consent forms and waiting on a chair outside NNICU because the nurses don’t like you to be there when they work on your child. They were doing a lot of work on Nate. The paperwork you have to fill out before surgery is fairly tiresome. The paperwork you have to fill out before a newborn has surgery is absolutely mindboggling, though quite understandably so. However, even some of the regular questions caused me to get quite distressed. Age? 0 Years 0 Months 3 Days (How could you send a baby that young into theatre?) Allergies? Nil known (How the hell should I know? You haven’t given me a chance to find out yet!) Smoker? NO (Are you f*#cking kidding me?) I know it’s a standard form but the injustice of it all almost made me physically ill. I had to fill out, in my own words and preferably using no technical terms, what the doctor would be doing during surgery. My mind was in such a state at this stage that I actually had very little idea. I think it read something like this:

They are going to close the bladder using bowel tissue. They are going to join the 2 wee pipes and extend them to the end of the penis. They are going to close the hips and put the legs in traction. They are going to give him a new belly button. They are going to do anything else Dr may or may not have mentioned he needs.

It was during one of the times while we were sitting outside that the surgeon came to see us. He explained that Nate may need blood (I’d already signed consent for that) and that the surgery would be lengthy and delicate (probably about two and a half hours). Nate would come out on a ventilator and would stay sedated and on the ventilator for days to restrict his movement. He was going to have a lot more tubes and pipes and a lot of drains and it would be hard to see him with his legs in the air. I wanted to know if his lungs were strong enough for what he was about to go through and I will never forget the almost cocky smile the surgeon gave me as he replied, “Have you seen him? Psshh!” The anaesthetist arrived at that moment and he introduced us. I remember thinking that this was the most extraordinary woman I had ever met in my life and if I had to trust anyone with my child’s life then I was so glad it was this team of people. She went through the same drill about the sedation and ventilation.

Shortly before 5pm on the first Thursday of his life, the anaesthetist walked into NNICU and walked Nate into theatre. The whole time that she was pushing the radiant warmer she was chatting away to him as if she was just taking him for a walk. We were allowed to walk with to red line. She stopped there and let down the side so that I could give my beautiful baby boy a kiss on the forehead. Only the third time I had been able to do this in as many days. She pushed him away, smiling and waving at us. I stood there with tears welling up in my eyes and turned and walked out of the theatre entrance.

Once outside the automatic doors I began to cry. I wanted to run back in there and find them. I wanted to beg and plead with them to stop. To tell them I’d changed my mind. Tell them that the risks were too high and to just give me my baby boy back. Tell them that they had been wrong about everything. That he would be fine if they just gave him to me and let me love him. I did none of this. I walked back to my maternity suite and began the long wait with our families. It was the longest four hours of my life. I consumed so much caffeine that I could practically hear colours. I had no idea if I would ever see Nate’s tiny little face again or hear his perfect little cries. The wait for the surgeon became too much and J and I walked to the NNICU. We walked in and there, in the back corner, was Nate’s radiant warmer with a lot more machines around it than before. The doctor, anaesthetist and a lot of nurses were bustling about, trying to stabilize him. His monitors were going crazy.

I felt like my heart had stopped.

A Life Changing Day

I'd like to say that it was the day that changed my life because in so many ways it was. For one, nothing, absolutely nothing would ever be as it was before that day. Not the person I was inside, not the way I lived my life, nor the way I saw people or people saw me. Not the way I made decisions or felt about anything. My entire being was about to be completely altered.

Then why, you may ask, do I say that it was not the day that changed my life? Simple really, to do that would be to downplay all the days of prolific importance that had gone before. The days that had changed my very being up until that day. There was the day I was born. That was pretty damn mind blowing right there. The day I learnt I was getting a baby brother, the day my grandmother passed away, the day I learnt I had passed Matric, the day I graduated, the day I was admitted to Tara and the day I was diagnosed with Temporal Lobe Epilepsy and later Bipolar Disorder, the day I got married, the day I slipped into a coma and the day I decided to live and the day that it finally sunk in that I was never going to be a Mom, that I couldn't have children and I would spend the rest of my days being godmother to children who held a special place in my heart. Each and every one of these days changed my life forever but more about some of them in later posts.

I quickly got over the absolute shock of falling pregnant after spending years thinking it was a no-go area because of all the medication I was on for my Bipolar and Epilepsy. After seeing about 15 doctors that I either didn't like or were not even prepared to see me on all my meds, J and I had finally found a doctor who was quite positive we could have a healthy baby. Only for us to discover, after testing, that we were both infertile. As is so often the case in these instances, it was after we had stopped trying that I learnt I was almost 7 weeks pregnant.

Now let me tell you, pregnancy is not for sissies. My pregnancy was classified as high risk because of my BPD,epilepsy and all the meds I was on and extra doctors visits were scheduled. That's right, give me all the tests. All of them! Forget morning sickness. I had after 5pm sickness until 17 weeks. With a week's hospitalisation at around 15 weeks. By 12 weeks I was already huge. I looked like I'd swallowed a beach ball and was drinking 6-7 litres of fluid a day. My gestational diabetes tests were fine. We were having the hottest Summer in 50 years. By 30 weeks I looked like I was going to drop the baby on the spot. Now I no longer looked cute. I looked huge. I had an ass on me that you could spot from a mile off and my mom refused to go shopping with me because I had to go to the toilet after every second shop visit. The weekend before Christmas we moved into our new home and after Christmas lunch I was admitted to the labour ward for observation with suspected encephalitis. I was home by New Year.

Early in January my worst nightmare started. My previously busy baby boy would suddenly stop moving. For a full day. We would rush the 45 minute drive to Sandton for a Non Stress Test to find elevations in his heartbeat but nothing to be concerned about. On 18 January at 35 weeks I saw my doctor. Peanut had the umbilical cord wrapped around his neck and was apparently bored since he was playing with the cord and causing extreme elevations. I could be booked in or drive the 45 minutes each way for the next 3 weeks until we hit 38 weeks, which was the minimum my doctor wanted me to carry to. Every day, with my heart in my throat, I went for my NSTs.

The following Monday I went up to labour ward as I had been doing for weeks and then hobbled down to the doctor's consulting rooms. I absentmindedly handed the filmy printout to the midwife while chatting to my mom and waited for her to go in to show the doctor and come out and tell me to come back and do it all over again tomorrow. When she returned she asked me to take a seat. My blood ran cold. I did the math in my head. I was 36 weeks. Exactly. Not yet considered "full term" and weeks away from my due date. Two weeks still from where my doctor wanted me to be. What did he want? I will never forget his words, "Sam, I don't like what your baby is doing. He's putting himself at risk. So, we take him out. To...day."

I was admitted to the maternity ward and given steroids to strengthen Peanut's lungs. The big fear at this stage was if his lungs would be strong enough at 35 weeks gestation for us to avoid having him go into NNICU. Phone calls were made. J had to leave work and go home and fetch my bag, which had been packed since 25 weeks as per instruction due to my high risk pregnancy. His mom had to change her flight to Joburg, which was booked for two weeks time. My mom was pacing the room. I was feeling surprisingly calm considering that in a few short hours, I was going to give birth. Outside a gorgeous double rainbow was in the sky. This had to be a sign of good things to come.

Later, as I was wheeled into a theatre full of strangers: anaesthetist, paediatrician, assistants and nurses. Fear and nerves sauntered in and adrenalin came galloping through on a majestic black stallion. I knew exactly what to expect. Exactly. I was one of the last of my friends to have a baby, so I practically had an honorary degree in giving birth. The spinal block would be painful. I must insist that they put the catheter in after the spinal block or it would hurt like hell. They would put a screen up and I would see nothing and feel no pain but I would feel the the pulling and tugging as they pulled Peanut out and stitched me up. It would be over quickly and then I would be surrounded in a warm fuzzy glow and joy. This is the same thing I tell nervous expectant mothers-to-be. It's so very much how I wanted it to be. It's damn far from my reality.

The spinal block was almost painless, nothing but a tiny pin prick in my lower back and then the tingling sensation in my legs as it started to take effect. I remember thinking to myself that this may just be easier than I thought. I don't even remember the stupid bloody catheter that I had been worrying about because I remembered it being so awful from when I had one when I was briefly bedridden. There was no screen. Nothing. Nada. If I had pushed myself up I would have been able to see everything. I felt barely anything as they used the scalpel to cut through me and J looked at me and said, "Shit just got real." He was quite correct because at that very moment shit was about to get very real. Both physically and emotionally. The small c-section incision they usually make became the size of a hysterectomy cut because they couldn't pull Peanut out without wrapping the cord tighter around his neck. The initial annoying tugging and pulling sensation turned into actual excruciating pain until I actually started crying out. The anaesthetist kept promising that they were nearly done and that he would be able to give me something to take away the pain soon. J's eyes were darting from my face to where the doctor was wrestling with my insides. Suddenly Peanut was out. There was an actual loud "popping" sound as they flipped the umbilical cord over his head and the paediatrician congratulated my OB/GYN on making a good call to remove him that day. I sighed with relief as the morphine began to flood into my veins and ease the pain. It was all over...

Only it wasn't. It was far from over. I looked to the tiny surgical table on my left where they were suctioning Peanut. J was there now and I could tell from the look on his face and the paediatrician's furrowed brow that something wasn't right. They were battling to get him to breathe normally. The pain was back. Twice as bad as it had been, only this time it was in my chest. My heart was literally breaking. As I lay there on the operating table with tears pouring down my face silently willing my newborn baby boy to breathe on his own and bargaining with God, the Universe and any Heavenly being that may exist, I knew for certain that dying of a broken heart was an actual possible physical thing. It went on for twelve minutes. J got them all on tape, though heaven knows why because to this day I can't bring myself to watch them. Finally, our miracle baby was breathing on his own and crying. Surely now, this terrible nightmare of a day was over? They would bring me my precious baby to hold, wouldn't they? I could stop crying tears of fear and start crying tears of joy, couldn't I?

Not even close. I heard the paediatrician mutter some technical terms and him and my doctor started talking in concerned tones. The anaesthetist's assistant, who had been great throughout, came and told me that there was a problem with my baby and they were just checking him out. Finally the paediatrician came over and told me that he had a very rare disorder and that his bladder was exposed through a whole in his skin. I would not even be allowed to touch him for fear of causing infection. What the actual f*#k?

They brought him to me and held him up to me so that I could see him and kiss him on the forehead. It wasn't only 36 weeks that I had been waiting to meet him. It had been my whole life. I had always wanted to a Mom and here He was and now they were taking Him away from me. Taking him to NNICU. Taking him to run all sorts of tests and discuss amongst other doctors what his fate would be and I didn't have a damn say in the matter. I had done my best to nurture and protect and grow him for 36 weeks and I had promised to love and protect him his whole life and now I didn't even know how long that would be. I'd like to say my heart was breaking on that table as they wheeled him away but my entire spirit was destroyed.

They wheeled me to my suite in the maternity ward. My mom was there. I was incapable of rejoicing. I just broke down with my mom and J at my side. I always thought that us, Catholics, owned the right to guilt. I was wrong. Catholics are beginners. It's us, Moms. I blamed my medication, the odd cup of 'real' coffee I had had during my pregnancy, doing too much, doing too little, stress and just not being good enough.

Later that night, when our entire immediate families were gathered in the room, my OB/GYN and a paediatric surgeon arrived to explain how bladder exstrophy is a rare congenital anomaly affecting about 1 in 50 000. Children are usually born with the bladder outside of the body and there are abnormalities of the urinary tract and pelvic area. It can be linked with problems with other organs. Even if other areas aren't affected, children with bladder exstrophy often face multiple surgeries into their late teens or early twenties just to make them continent. We would have to wait until all the tests had been run to discover the fate of our child. I was then wheeled to NNICU to look, but just look, at my precious baby boy. He looked like a giant at 3kg compared to all the premature babies but his life hung just as much in the balance..

As I lay in bed that night, pumped full of drugs to help me sleep and calm me down, the tears ran down my face. This was supposed to be the happiest day of my life. I was supposed to be cradling a
tiny, pink, squealing bundle. Instead I was lying alone in my hospital bed facing the toughest journey of my life and I was not equipped with any of the tools that I needed to fight the battle. I didn't know how to be a mom and I most certainly didn't know how to be a mom to a very sick little boy who needed a very strong mom to fight for him. I was about to find out that both that tiny little baby and I were a lot stronger than I gave us credit for.