Baby J’s first!!!

Look at this picture... it narrates a thousand stories. It speaks about the journey this autism family has covered in the last one year. Avani’s smile and Jay’s comfort around her tells you how this little angel’s arrival has made a difference in our lives. 

Jay is one today and I can’t thank God enough for sending him to us. We needed him, almost desperately. 

I needed him to see another side of my maternal instincts. A mother who is not always struggling to be heard, a mother who is not always counting milestones, a mother who is not always looking at her child through a certain diagnosis. 

Aiyappa needed him. He knows Jay is a reflection of him in character not looks 😋

And Avani needed her baby brother to learn and unlearn so many things! She has to share her parents, her toys, her space and even her privacy (this boy goes to the toilet exactly at the time when she is there)! The bond has only started to develop. The layers of a relationship are only getting built one by one. Right now, he’s perhaps just a little toy for her to play with occasionally. Sometimes he’s fun but mostly annoying. 

But this little bundle of naughtiness is here and it’s amazing how quickly he’s become our lifeline. 

And by the way, I still sometimes press his nose to check for a nasal bone :)

Jay

I was particularly anxious on the night of 22nd November. Baby 2’s due date was still a  good three weeks away but my mind was not at peace. I checked out all of Avani’s Baby pics, consoled myself that I’ve already given birth to a beautiful baby and I should not be worried about anything! I slept pretty late and woke up to send Avani to school. Just as I was resting at about 8 in morning, my water broke! I made a hurried call to the husband who had gone to drop Avani and as soon as he was back, we left for hospital. After monitoring the baby’s vitals and checking my progress, they decided to wait for another 24 hours before scheduling a C-Sec. 23rd November went by in constant anticipation of what lies ahead. When they tie the baby monitor machine on you, they also ask you to count the kicks. At one point, the monitor went blank, husband and I jumped out of our seats only to realise that the machine had moved from its place! Phew!!! 

On the morning of 24th November, am being prepared for the operation. The filling of consent forms, checking of vitals, changing of dress, the questions, the gynaecologists, the nurses, the anaesthetist… it was so overwhelming! I just wanted everything to get over as quickly as possible but it would drag on… at least it felt like that. 

At precisely half past eight, my doctor walks in the OT, am semi conscious now, husband is sitting by my side looking like a ward boy, behaving like a doctor but actually all nerves!

At 8:53 AM, she says, “congratulations! Its a boy!” And I immediately turn towards my right, where the pead is cleaning him, I swear, the first thing I told myself, “he has a nose”…

Doctors got busy to stitch me up, husband got busy conveying the news and I slept. When I woke up, my lower half was still under the influence of anaesthesia. I asked for husband and when he came, the look of ‘all is well’ was good enough. The baby was ready to come to the room even before I was. 

It’s been three months now, touchwood all is well. I am a paranoid mother and like an idiot keep looking for signs if something is amiss. But Baby 2 is handling himself well :)

The focus needs to shift back on Avani. Poor kid has had a tremendous year too! From adapting to a new house to sharing her parents with a newborn to leaving her school and classmates of three years!!! It’s been a tough one for Avani. Am going to ask you all to remember her specially in your prayers once again. She is fascinated by baby 2 as much as we are. His arrival on the same day as my father’s 33rd death anniversary is truly a blessing. We’ve named him Jay - it also means blessing :)

Let it be...

Somewhere between the most emotionally and mentally exhausting 19th to 28th week... I realised my Heamoglobin levels are dipping. This was because I was not able to take oral iron supplements which are mandatory during pregnancy as the body is supplying essentials to the lil one inside you. One iron tablet could trigger diahorrea for two weeks at a stretch and therefore, I had to give up taking them. 

By now, I was consulting a senior Gynae in Apollo as well as the local Gynae near home who had handled my case since beginning. On the suggestion of the senior one I decided to get an iron supplement drip infusion done in the junior Gynae’s hospital. 

As soon as they tested the drip on me, I fainted and woke up only to realise that I’ve vommitted on myself. 

They discharged me after making a few calls to the junior gynae and of course the HB levels kept dipping. The next time I went for a check up, the doctor decided to literally show me the way out!!! Yup, she says she cannot carry on with my case any further if I am going to follow the advise of another doctor! 

In between the missing nasal bone and other health issues with the mother and child, this doctor decides to pamper her ego.

And I tell myself, “bus yahi dekhna baaki tha"!!! 

Back to the scan on Saturday after a terrible Friday night when I googled all things that could be associated with a ‘quite’ right arm. 

So this is happening soon after I’ve had my breakfast and as soon as the doctor puts ultrasound toggle on my tummy, she says, ‘baby looks pretty active today!’ That’s good to know! She starts looking for the right hand and the position is changed today... Thank God No.1

She shakes my tummy a bit and we see that little wrist moving a bit... Thank God No. 2

The fingers move a bit too... opening and closing the palm... Thank God No.3

Doctor tells us that the baby is lifting the arm too... Thank God No.4!!!

So finally, the fetal medicine expert is confident that she has seen enough movements in the right arm to write my report. Thank God No.5.

We leave the hospital with just the worry concerning my baby’s missing nasal bone. 

Baby and I seem to be doing fine as of now. Iron supplements are finally suiting me and am maintaining a borderline level. I feel baby’s kicks and movements and if you ignore the anxiety about his/her nose, am mentally at peace. 

These blog posts are just my way of getting the negative thoughts, anxiety and fear out of my system. You may call me courageous for writing all this or an attention seeker...but my experience on writing about Avani is a testimony to the power of positive vibrations that your loved ones send in the universe while praying for you. I want to capitalise on that and am riding on your prayers and wishes through this challenging phase in life. 

But I realise I have given plenty of people panic attacks over the last few weeks... so no more posts for now... Next update only after the baby is here! :)

One worry less, but two more added...

I dream, I've just delivered baby no. 2 and my first question to the doctor - How does the baby's nose look!?! Tell me the gender later, but first the nose please!

And am sure, this is exactly how it’s going to be. 

The reports of my amniocentesis and Microarray came back absolutely ‘normal’. So chromosomal abnormalities are ruled out. Thank God! We are told to relax and proceed further with no stress. Come back for a growth scan at 28 weeks now. Which we duly take appointment for. So its a Friday afternoon, and the doctor starts the scan. We are anxious about the Nasal Bone and it’s still NOT seen. Ok... now the doctor is almost mumbling to herself “what’s with the right hand”... “that’s quite an awkward position”... She shakes my tummy and the hand stays the same way. She abruptly tells me to take a walk and come back after eating something sweet.

Husband and I are sitting in a cafe in hospital. Over a cup of coffee and a big chocolate pastry, am telling him, I think the doctor suspects something in the right arm too. He diverts my attention to coffee and we are back for a repeat scan. 

Yet again, the right hand is in same position as about half an hour back and nothing seems to help in tracking any movement in it. 

By now we are sure that something is amiss. The doctor insists on a third try and now am told to have some juice, take a long walk, go to the loo... basically do something to shake the baby and help him/her change the position. Half an hour later... we still have the same challenge. Absent nasal bone combined with no movement in the right arm. The doctor, I think is more nervous than me at this point and refuses to give me the scan report. We decide on another try the next morning and its heavily raining as we step out of hospital. I think that heavy grey sky and our struggle to get to metro to reach home helped us ignore our fears till its bed time. 

That Friday night will go down as another horrible/uncertain night in this pregnancy. 

The curious case of an Absent Nasal Bone

Its not for the first time that the thought of having another baby struck me. I remember telling my mom soon after Avani that I would want two kids back to back and then get on with career. But what we plan doesn't stand a chance unless its approved by the One above all of us. 

Avani's diagnosis at around two years of age changed our world completely. In the last seven years, I conceived twice before and after much deliberations and heart break decided to terminate both the times in less than six weeks. Its tough on everyone. 

So when you realise that you have a third opportunity, you feel that this could very well be the last! I wanted to grab it before its too late and I really thought that I am indeed destined to have another baby. 

But by the time we hit the 19th week mark, the thought of terminating pregnancy has crossed my mind once again.

Once in car, I break down. The radiologist told us that absent nasal bone is considered a soft marker for Down Syndrome, also known as Trisomy 21. The child born with this condition could suffer with a wide a range of cognitive and physical limitations.

Are we 'strong' enough to have another child with special needs? I have a long list of friends and relatives who in a very well meaning way call me a 'strong' person, a 'brave' mother! God chooses people like me to throw such challenges... So let me just confess once and for all, I am not 'strong'. Please God, now spare me your 'challenges'. 

Before we reach my Gynae for further planning, I google everything about medical issues concerning an absent nasal bone. There were no other anomalies in the scan, and we are advised to see an expert in Apollo's Fetal Medicine Department. 

It was a horrible night. I cry and curse every tissue of my body for being incapable of producing a healthy child. 'Why me'??? Rather 'why me' again!?!

Doctor hears me out patiently. She knows my first child is on Autism Spectrum, she knows am a nervous wreck at that moment and she knows that this is the closest I would ever be to have another shot at maternity. We also meet a Geneticist in the same department. 

We are advised amniocentesis which basically means drawing out amniotic fluid from placenta and testing it to confirm if the baby has any chromosomal issues. The results will either rule out or confirm Trisomy 21, Trisomy 18 and Trisomy 13 abnormalities a hundred percent. The geneticist suggests another test called Microarray using the same sample. Chromosomal Microarray (CMA) will be done for genetic testing in a range of 7,50,000 combinations to look out for any unexplained developmental delay/intellectual disability or any other anomaly in my unborn child.  

Both reports would take approximately three weeks to come and the wait is agonising. By the time reports are out, I would be 22 weeks plus and legally cannot terminate pregnancy. So no matter what, this baby is coming. 

Note: I am not writing this blog in real time. Am currently 32 weeks pregnant and these tests, there follow ups, second/third opinion have been sought. This blog is an attempt to fight my fears/concerns and uncertainties through positive vibrations from friends and family. Its been a tough journey and challenges have been many, will keep you all posted on how it goes. Due date is 11th December - another coincident, as Avani was born on 11th December too :)

Breaking News!!!

Recently Facebook threw up a memory from October 2010. Am seven months pregnant with Avani and commentating for the sport of Wrestling during CWG 2010. Such a career high that was and anyone who would meet a pregnant commentator in a noisy stadium would have their own comments! Your baby will either be a commentator himself/herself or a wrestler!! And I was like - why not!!!

We know my baby's journey in these seven years and the breaking news is that am pregnant again! Yup! Its time to welcome baby no 2! And coincidentally, even in this pregnancy I worked as commentator for another international wrestling tournament! Haha.. that was in month 5! 

But coincidents don't end there for us. Call it destiny/luck/karma or whatever, it seems am

chosen by the almighty to stay in perpetual stress concerning my children. 

When Aiyappa and I 'discovered' earlier this year that I've conceived, for at least 12 weeks we were not sure if we're going ahead with the baby or... 

Then the mother in me got greedy. I wanted another chance at 'producing' a healthy offspring. I wanted a sibling for Avani. I wanted someone to talk to any time of the day. Someone who can annoy me with his/her questions and share all emotions. 

So we go ahead. Starting Month 2, there's massive evening sickness. All I do post 3 PM from month 2-5 is eat and puke!!! Weight  gain is bare minimum... no one can guess that am expecting. 

Week 18 onwards, things start easing out a bit. I tell myself,  this is the time to start enjoying. Just a bit anxious about the impending 19th week anomaly scan but relaxed overall.  We reach this radiologist for the scan promptly when its time. Its going fine... fetal heart, kidneys, liver, stomach, brain, arms, legs everything seems to be on the mark. We are happy and just as we are thanking our stars, the doctor decides to drop a bomb! 

We are told, that baby's nasal bone is absent. What does that mean? Well, its considered a soft marker for chromosomal abnormalities... With fucked up mind and heart, we get out... Aiyappa decides to buy some 'namkeen' and I want to have a samosa to fight tears. We eat, we leave and just when we reach parking, I get a call from doctors clinic... we're praying that he's called us back to say that there's been a mistake and everything is fine with our baby... please please please.

Well, there has been a mistake and its concerning the report... but the problem is that he forgot to mention 'absent nasal bone' in the written sonography report. His assistant duly added that and said thanks for coming back. 

To be continued...

This one is for Mothers...

Its true that you become a mother as soon as you conceive a child, and that selflessness, the maternal instinct, the strength and courage of character kicks in as soon as you hold a little life in your hands. When you feed her even if your nipples are cracked, when you console her even if you are crying, when you comfort her even through your own discomfort, when you pray that she gets a good sleep even if your own eyes are swollen due to lack of it.

Avani's arrival was the smoothest thing perhaps. No trouble during pregnancy and with the C-sec also conducted perfectly, I don't remember a single bad day during those nine months. Just like every mother, I remember all the firsts clearly. The first time I saw this little child freshly taken out of my womb, first time I tried feeding her, her first touch, her first poo, her first smile, her first crying episode...everything.

But I think my journey to becoming a mother actually began with her diagnosis on ASD. Lot of people appreciate what am doing and how am handling the situation and my answer always is, 'any mother would do this'. When your only option is to accept and work hard towards making your child's life meaningful, then you can't have the luxury of choices.

It's about two and a half years now into therapies and understanding Avani's condition. I have not only seen massive improvement in her but I think the biggest achievement has been my transformation into a person that I thought I could never be!

First lesson that a child on spectrum teaches you is 'Patience'. No matter how much I shout, how much I get frustrated, angry, irritated, if Avani has decided to not respond to her name, then there is no way that I can reach her without being patient. I have to slow down, bend down to make eye contact and repeat her name with an inviting smile to get her to respond.

Second lesson is that when it comes to your child's needs, you cannot let your ego come in picture. You gulp down your ego, every time a therapist tells you how your child is full of 'issues'. You kill your pride every time a professional tells you to make innumerable calls before you get an appointment. You learn to ignore those inquisitive looks from strangers who judge your parenting while your child is throwing a tantrum. You tell yourself 'its ok, its ok' a thousand times when little kids in the park refuse to play with your kid.

Yeah, It's OK!

And I think the biggest lesson, I have learnt as a mother is that you choose your fights carefully.

With ASD kids, you have so many 'big' issues that so called 'small' ones need to be dropped. I have learnt to priorities my fights. I don't argue when class teacher complains that you child doesn't sit. I know she doesn't and I also know it can be equally a judgment on her teaching and talking method, but I don't correct her. I don't care if a little kid says that Avani screams loudly some times. I know she does, and I don't think that its worth explaining a 4-5 year old the difficulties Avani has with sensory processing. I just admit and tell them that I will make sure Avani doesn't do that to scare them next time.

However, it is also important to identify what is worth fighting for. Its only obvious to give up easily when you are so overwhelmed by circumstances. But don't do that all the time. You fight when you MUST. You fight like only a mother can.

I become Avani's advocate as soon as I sense that she is being excluded from some basic childhood experiences that she deserves. I take up a fight with anyone who questions my child's abilities without testing them. I also don't take illogical arguments to keep her away from her basic rights whether it is related to education or entertainment.

On this Mother's Day, can I please request all the mothers to choose to speak up. Speak up for anyone who needs you - your child or mine. Speak up against any wrongdoing you see around you - whether it affects you or someone else. Speak up to not just protect your own child but also speak to your child if you feel the need to protect another kid. For its only a mother who can understand selflessness, affection and compassion like no one else.