Sunday, October 14, 2018

Being a mother

Every morning when I wake up, I see what I want to be in my son's eyes. I am put on a pedestal and honoured like a hero who knows no fears and boundaries. Becoming a mother changes you forever in so many ways. But contrary to expectations, all of it is not pleasant. And yet we choose to hide it away. Put it inside a box forgotten and forgiven for what it has done or is doing to us every single day. My pregnancy was rough. I would have said horrible, but may get chastised for it, so will stick to rough. I would never know why I was chosen but then I’m not looking to place blame. Many a times in life you don't get answers. And it's okay.





It's been a long time since I did something for myself. So, today as I turn an year older, I’m writing. Almost entirely for myself. To finally meet all the emotions that I had disowned while I was out there fighting for our son. And let them peacefully sit in this space. On my birthday it's a gift I deserve.

If you are still with me and care to join as I recall Abir's birth story, please read on.

Birth

My mother came three days before Abir's birth. Husband had to pick her up from another city and deep inside we only hoped that in his absence the baby would not pop out. Nevertheless, a dear friend refused to leave me alone (Thanks Anuja), appeared at my doorstop and stayed until Husband and Mummy reached home at midnight. Next morning, an unusual pain started, something that was hard to describe. It was not severe enough to rush to the hospital, yet it kept me awake the whole night. On the following day I had an appointment with my Ophthalmologist , which took 4 hours to finish and by the end of it we were famished. I still remember asking Husband to treat me with a piece of cake, the first sweet thing I had in the last 4 months. Shamelessly I had gulped down the thing in a flash of a second as we headed back home.

We had went for a CTG every single day starting seven months of pregnancy and everyday Abir's heartbeat followed a usual rhythm. But on this particular Tuesday, something went amiss. His heartbeat was kind of jumpy. It made us queasy when it scooted up and in an instant went down.  The doctor asked me to come back in one hour after eating something  for another CTG as this one didn't look fine. A longer  CTG was repeated and it came out just the same. She immediately referred us to MHH. I am not an intuitive person, I usually go by reason. But I felt we were going to meet our son that very day. As we were heading towards the hospital I called my Mother and asked her if she could make some lunch and we three could eat together. Husband thought I was mad, but I knew it would be sometime before I would meet her and would be home again. We ate, picked up my hospital bag and went to MHH. My CTG ran for 1.5 hours, after which the doctor came and her face spelled it was time. My contractions had started but were not strong enough to deliver and the baby's heartbeat was too irregular to aim for induced labour. So, it was inevitably a C-Section . "When?" I asked. "Now," said the doctor.

The total duration from us getting dressed to seeing Abir for the first time was 15 min. They took him out, there was a moment of silence and then he wailed three times. Everything felt so surreal. All of a sudden, I started shaking vigorously, my teeth chattered loud and a surge of nausea enveloped me. I felt I was standing naked on ice. The only thing I remembered was the thick tuft of hair on my son's head and tears in my Husband's eyes.  A couple of injections later, I opened my eyes only when the pain above my legs hit me. They transferred Abir on to my chest from my Husband who had been nestling him all this while. He was so tiny and light, just like feather. Born with 2kgs he was the smallest baby on the normal ward. He could not maintain his body temperature and hence was put inside a thermally regulated incubator. It broke my heart to see nurses punching his mini feet every 3 hours to draw blood for monitoring his low blood sugar and continued the same for next 3 days until it got stabilized.

My pain at the site of incision was by now impossible. I was offered ibuprofen or paracetamol (pppppfffff....in Germany that is the strongest you would be given). Unfortunately, I couldn't stomach even them due to my ulcers and was really on no pain medication. But the worst was yet to come. Around 11 pm THE midwife (yes, she was someone special) came and asked me to get up from my bed. At first I thought she was kidding, but then she held my hand and made me stand up. I have endured a lot of pain but this intensity was beyond my imagination. I felt like thousand knives were cutting through my skin. I was not even finished wiping my tears yet and she reappeared with a milk pumping machine asking me to pump out the colostrum.  

Next morning was no less horrific. While she pulled out my catheter, she asked me to walk without support this time and take a shower. I never thought taking a single step would be so hard at some point of my life and that was one epic shower I took! She was super tough. She was the one who looked at my tears and asked me to stop being a sissy since I was a Mum now. She was the one who told me that she would take care of Abir only on Day 1 of my operation and starting Day 2 he was my responsibility. And true to her words, she actually refused answering my bells, making me walk everytime to her office when I needed something. I am sure it was not done on purpose and she genuinely wanted me to stand up on my own and take care of my child. But in the absence of any pain medication my body felt like a yo-yo, directionless and dysfunctional.

However, everything happens for a good reason. Abir was diagnosed with metabolic imbalance and a thrombotic blood profile when he was 2 days old. His precious little blood was drained thrice, the tubes was chucked out into the dustbin and he was re-infused with saline. Those nights as I sat in the hospital, seeing my baby entangled in tubes and needles I used to wonder why  Abir?  But, the midwife was right, I was a mother and I could not afford to cry. He was too small to latch and could not breastfeed, so I would literally crawl until the pumping station near her office minimum 8-10 times a day to pump milk. I could only do this because I had learned to walk in pain earlier on.  I stayed alone in the hospital for the next 10 days. And every single day when I would undress Abir in the common room to take his weight, other mothers would look at his miniscule body and gasp.  But in return, I would cover my little one, every inch of him in kisses and cuddles, since I never felt anything less than gratitude for having him in our life. Really, thank you Abir for letting me be your mother.

It was a rainy gloomy Tuesday when we had made the concluding journey as a husband and wife only to come back home again as parents. Between then and now, life has never been the same. We named our son ABIR. In Hebrew it means "brave", in Arabic "fragrance", in Bangla "sky at dusk" and in Hindi "color", all meanings no less befitting to our child than the other.The day we reached home, I locked myself in the bathroom and broke down.  It's difficult even now sometimes not to be sad. But I have to remind myself of all the good things that have also happened, even when I don't realize it.



People question why I did not share this journey with them earlier? It is simple. We live in a society which legitimizes encroachment of each and every  choice someone makes, no matter how affirmative it is. And this introduces you to only fear and self-doubt. That was the last thing we wished for. Of course, it came with the price of being alone but it was better than being given unsolicited advice and answering fewer questions.

And truth be told, most people just watch and even enduring relationships do change. While we drew comfort in those who became closer, we let go of the ones who chose to be distant. What we witnessed should never be anybody's life's reality. On my loony days, I tell Husband that it would have made people piss-in-their-pants to withstand even 1 % of it. As a matter of fact he agrees. But having said that, not a single day passes when I don't thank God for helping us through this pregnancy and childbirth. Sometimes, when I see kids who weigh more or are achieving their developmental milestones much faster, the feeling that I have failed my son creeps in. But a look at our boy replaces that feeling with a sense of pride. He is such a fighter! I forget about my inadequacies as a mother and focus on his achievements. His birth has inspired me to strive against my fate and my sense of self-worth now is far more concrete.

One might ask why then am I writing 2 km long post on it and that too NOW? Well, in my pursuit of procrastination and hands full with a baby it seemed impossible to even sit on the computer. Writing was really a distant throw. Until something happened. On a really grim day, when parenting Abir had pulled me into a black hole of despair, my Husband said the sweetest thing. He said : "Why don't you write? It will heal you and also make people who think they are in deep shit realise that although it may seem like a living hell right now, it will get better someday." And so I started writing. Our house is in shambles and we both are a mess. But I scribble on whenever my hands are free.

Our story does not have a happy ending yet. I thought pregnancy was tough, but the last seven months have been more brutal  and surely the most vulnerable times of my life (May be some day I would write about it too :)). Husband and I have already made several rounds of hospital after son's birth and I am sure many struggles would follow. But this adventure ride of ours so far has made us cocksure of one thing i.e. everything in life is so temporary and shall pass.  We both just have to stick around sane and believe in each other. Every now and then I rejoice when we hop on the brighter side and do well.  However,  I beat myself up even at the thought of having another baby since going through the same experience makes me shudder. I will NEVER be ready again. And that's my only regret.

Third Trimester

As much joyful was inching towards meeting our son, equally excruciating was every hospital visit. We were clinically supported , but always yearned for the much needed physical presence of our families which no amount of technology and virtual communication could replace. The stress was immense and no matter what I did: meditation, The Kapil Sharma show or re-runs of Friends I hardly slept. At one point the line between sleep deprivation and depression was a blur (it still is). At the beginning of 7 months, I went in for one of my doctor's appointment at MHH. After going through my reports, he asked me if I was carrying along my hospital bag. I had one but at home. He asked if my husband could pick it up since I was to get admit right away until the baby was delivered. On asking when, he replied soon since he was very doubtful if I would make it to full term. I asked for a day. I went back to my lab, finished my work for the day, organised my experiments and wrote e-mails to my colleagues requesting them to pitch in and finish the ongoing work, which they were nice and gracious enough to accept.

I got admitted the next day.  The next weeks in the hospital made me write down two things, put it in a locker and safeguard it for the rest of my life. One: "If you have written a birth plan, just shred it." Two:  "Never judge a Mother".  I was surrounded by so many women who had faced insurmountable challenges to protect and bring their baby's into this world that my own struggle seemed infinitesimally small. It took unexplainable courage to hold a still born or continue to visit a 350 gm baby everyday for months in intensive care. I could hardly complain. Each morning, all I did was pray and ask God  to keep my baby inside one more day so that he was given a fair chance to develop. My unborn son had already made a Mother out of a Woman and nothing  can get crazier and sometimes  irrational than a Mother's love. Sometimes, I would abandon my thinking cap and ask myself if more was indeed better?  If staying longer inside the wrecked me would actually help our son or it was best for him to arrive early before it was too late? And the doctors would frown (reasonably) when I questioned  their ability to make that decision at the correct time. It was hard but eventually, I let go. In a way it empowered me, to  leave the decision to our baby. As long as he kicked me awake during midnight and his heartbeat on CTG (Cardiotocography. Measures fetal heartbeat and the uterine contractions during pregnancy) soothed my worried soul, his mother promised to love and cocoon him.

I got some steroid injections to mature the baby's lungs, in case he arrived earlier. I don't fear the needle. God knows how many times this body has been prodded and blood drained in this lifetime. But these ones were painful. Now I believe that our kids are sent to us for a reason. My son is so unique, precious and beautiful that he deserved parents who could love him despite all the hurt.

As I entered the 8th month of pregnancy I was discharged. But I was inching so close to my maternity leave that I had tonnes of professional commitments and could hardly sit. When it looked impossible to achieve alone, Dear Husband joined board . Every evening after his work and all the weekends thereafter he joined me in the lab and together we  handed over everything, though already 15 days into my Maternity Leave. I tell my husband that falling in love with me was the easier thing to do, but still staying in love with me is one of the toughest things he is doing. The last 8 years demanded of him by far the greater strength of character a man could display.  This is true now and will always be.



The physical demands of pregnancy combined with work  was pretty overwhelming. But my eye disease was the real jerk. It surfaced on its own whims and fancy. Due to sporadic bouts of inflammation and continuous use of both oral and topical steroids, my eye pressure was now getting bonkers. I was at a point where I took 14 medications per day and possibly didn't want to add anything else to the list ever again. But my failing body has destroyed my will to wish and I accepted whatever life threw my way.

Second trimester

Second trimester started off with a good note. The doctors at  the HRP unit assured me that since  I was not overweight, diabetic or hypertensive my  prognosis was good. When I think about it now, I can only laugh and say "Well, you were so naive!". The second trimester threw in completely unknown and unfathomable challenges on our face. 

Since, I was on corticosteroids (which predispose you diabetes)  my gynaecologist asked me to go in for an early OGTT (Oral  Glucose tolerance test: to screen for gestational diabetes and normally done at 6 months of pregnancy) at 4 months, as an act of caution . An overnight fasting , gulp of 500 ml of sickeningly sweet liquid,  2 hours of immobility and 3 pokes  later, I was a confirmed diabetic. To say I was shattered is an understatement. All my life, I did Yoga, swam twice a week even during pregnancy, ate well and I-GOT-DIABETES??  Holy cow, where was my life rolling? Gaining weight was already a herculean task and now I had to control my diet! My doctor was so unhappy with the values that she asked me to take it again. Oh well, all the sweetness in my blood decided to concentrate even further this time around to give sky rocketing values. So, here I was officially a diabetic and one till today.

Remember the HR in MHH (not human resource, the  high risk pregnancy Dept)? They hurled in a diabetologist  to my list of doctors. The young chap asked me to take the horrible OGTT again. Apparently, hospitals do not trust the OGTT done in private clinics! And take this, the values in this particular test were all over the place resulting me taking the test 4th time (in comparison to other lucky pregnant ladies who take it only once). Additionally, I was asked to poke myself and monitor my sugar values 8 times per day for the next 7 days and then come and meet him again. As expected, the values  were as high as an excited electron. So it was decided that I would be put on insulin and the nutritionist would tell me what to eat. Unfortunately, no matter how religiously I controlled my food intake, every S.I.N.G.L.E thing raised my sugar levels. Dairy would make them do tango, grains were already a problem and fruits were a forbidden dream. Every day, I would wake up thinking what to eat, since avocado and eggs could not be my only source of nutrition for the next 5 months. Pregnancy throws you one opportunity to crave, enjoy food and eat galore. And here I was counting calories and punching my figures before and after every meal. Destiny also threw in some stomach ulcers as a return gift for hoarding medicines in my system year after years.

All this coincided with the most horrific and massive Uveitis episode I got for that year. I sat in a dark room for days since even a tiny ray of light felt like a bomb in my eyes. Poor husband sat in darkness too (really he is the best thing that has ever happened to me). Since, the doctors had reached the upper limit of  recommended steroid dose, they decided to try intraocular injections. The first injection in the eyes locally anaesthetized them  and the one that followed inserted an implant containing Triamcinolone Acetonide (a potent and long lasting corticosteriod) intravitrealy. The injections in practicality were not as painful as the thought of taking them. However, a fiery red eye due to subconjunctival haemorrhage and the drug floating in my eyes like a Mother Diary milk pouch definitely made me look like a scary drunk.

Nevertheless, Husband and me went through all this with √©lan, as long as our baby was  fine. But all hell broke loose when our baby stopped growing. I still remember that awful day. It was a typical dark and grey Hannover day and one of those when I went alone to see my doctor. After my scan she had a look of worry I was already familiar with. I felt a time bomb starting to tick inside me. She explained that our boy looked very thin and had dropped way below his original percentile. Moreover,  the levels of Amniotic Fluid were far below the threshold which was hard to imagine since I drank water like a buffalo (I later learned, drinking water does not influence the levels). She referred me again to my old friends at HR, MHH for a second opinion. They did some additional Doppler scans. The blood flow through baby's umbilical cord and my placenta was fine, but there was abnormal vascular resistance in one of the Uterine arteries. This time I knew the reason why. Since, I had never smoked, drank alcohol or doped, ate well and  exercised regularly, I was the ideal candidate to be hypertensive in my uterus and relay my baby an unexplained IUGR (Intrauterine Growth Restriction: A condition where fetal growth slows down or stops in womb)

It's hard to explain the feeling when you realise  that your baby is better outside than inside you. I wanted to be really sad, dig my face inside a pillow and scream. But our little one was doing such a kickass job of beating the overwhelming odds each day that I denied myself any mourning. I knew that if I would fight for him , he would fight harder.


First Trimester

I never saw my husband crying. Except the day when our son was born.  More than happiness the tears  reflected a sense of relief that we three had finally met.

Abir was a surprise baby and we were so glad that it happened that way. For me and my husband could never muster enough courage to house a tiny little soul with deliberation inside my broken body, which had over the years witnessed  more than one medical predicament.  

(Reader alert: Biology haters can ignore the green text, though reading it won't hurt :))

I am HLA-B27 positive1. At 17 years of age I was diagnosed with an autoimmune disease: Rheumatoid arthritis (RA)  which has over the years distorted my joints and backbone and restricted my mobility. When I was carrying Abir, I suffered from  several episodes of Anterior Uveitis, an HLAB27 associated ocular inflammation which is extremely painful  and debilitating and if untreated can lead to glaucoma and permanent vision loss .  Sometimes I wonder why my husband even married me? What was he thinking? (Just joking, please don't leave me).  So we  needed to put a leash on my immune system. But systemic immunosuppression is complicated, more so during pregnancy.  I could not be treated by any pharmacological inhibitors2 due to potential risk of running a severely compromised immune system in  the foetus. So, I was put through a high dose systemic corticosteroid therapy, which was also far from ideal for a developing baby3 but the most tangible solution at that moment and till today while I am breast feeding him.

At 11 weeks of pregnancy, my gynaecologist called me at work with certain urgency that terrified me. My first trimester screening indicated a high risk for Down syndrome and other chromosomal abnormalities in our baby and a prospective placental dysfunction. We had one week to undergo an ultra sensitive ultrasound (US) to look for developmental defects followed by amniocentesis to decide if we wanted  our child or not. But as Murphy would have it with us, the earliest sonography appointment we could get in entire Hannover was in next 2 months! But when doors close, tiny windows open up. We had found ourselves with a gynaecologist who was full of empathy, a rare human virtue these days and she helped us in getting an appointment in a week. The wait was excruciating and so stressful that my immune system acted up once again to give a full blown relapse of Uveitis in my eyes and I was back on strong and unwanted medications.

The joy of motherhood seems like a joke, that too a cruel one when you need to decide if you wish to give upon the baby growing inside you. But we decided, that we never would. We wouldn't play God. If our baby had even the slightest chance to live, we would welcome him in this world and would promise him the best quality of life possible in our capacity. The scan suggested that  Abir was developing fine but there was still a 5% chance that he may still be born with the chromosomal defects. Amniocentesis would have been reassuring, but we opted out of it since it carried a risk for premature abortion and  infections . That's the day we also got to know that he was a he :)


Due to chronic illness and a fragile pregnancy, I was  transferred to  the department dealing with high risk pregnancy (HR)  in MHH (hospital where I work). And since then every day in our lives revolved around only appointments. And after every appointment we would go home defeated and broken.  There was always something. Be it waking up bleeding and seeing a  large hematoma (blood clot) sitting right next to my baby on a scan. Or  millions of  floating debris (from blood clots) clouding the otherwise pristine amniotic fluid nestling my baby.  I had such severe nausea and acidity that sometimes I felt even the water that I drank became sulphuric acid inside my stomach! Once the nausea had settled, thanks to my high metabolic rate, all efforts to stick any fat to my petite frame were futile (so much so I didn't discriminate even junk! I was eating trash like an entire pizza every other day, just in case it helped). 

Sometimes, I would count down the many ways in which instead of being nurtured my baby was actually trapped inside my body.  But then my husband would nudge me to focus on how it would be when he would arrive. How would he look , smell and feel. And for this and thousand other things that could go wrong but didn't, I am always thankful.

1HLA is a gene complex which encodes the major histocompatibility complex (MHC) proteins. These cell-surface proteins regulate immune response in humans. HLA-B27 is a subtype which is strongly associated with developing certain autoimmune diseases (diseases where our immune system  attacks the healthy cells of one's own body).


2Such as anti-TNF alpha blockers which suppress TNF alpha, a major biological mediator of inflammation during RA.

3Clinical trials conducted in first trimester have shown corticosteroid therapy to be teratogenic and associated with appearance of oral clefts, premature rupture of amniotic membrane, preterm delivery , low birth weight babies, gestational diabetes and preeclampsia. And a lot of it turned out to be true in my case.

Saturday, August 13, 2016

We are five!


Truth be told, marrying you was my only whimsy. 

And we are five today. Can you believe it? It’s so silly.  

They say marriage is between equals. Ours, I think is not. For I have always been the unequal one in this relationship. But you always were what I couldn’t be and complemented who I was. And every single day you add so much more to our marriage than I do.

Thanks for still bringing back fuzzies in my heart, I call that a win ;)

Happy anniversary  :)