16 March, 2015

My story of Hope -II

(For those of you who came by from the previous post My story of Hope-I, I didn't intend to make this 2-part series. The post turned out to be lengthier than I thought it would be and then it didn't seem fair not to say the whole story. So here I am, to tie up the lose ends.)

The year was 2014 and the day was the 9th day of January. As I lay tipsy from the drugs the doctors were trying to stitch up some tear that happened during delivery. That turned out to be a tough task and they had to take me to the OR to do the rest. Only half my body was numb the other continued to be 'high' and hopeful.

I was only late that eveing that I was wheeled into the NICU to meet the baby whom I had known for over 38 weeks but hadn't gotten to have a good look at. And that was all that I got to do that day - just look at her. The baby continued to be there for close to a week after I was discharged from the hospital.

Some tough days they were, both physically and emotionally. No mother should have to go back home and not take her new born home with her. Sometimes that's just how it is and it can barely be helped. The following week was all about driving all the way to stay beside the little one watch her sleep and hold her without disturbing the things that were strapped her; to monitor her heart and temperature and all of that.

It's weird how all the physical pain from the delivery and all the tear and the stitches seemed so trivial when compared to the pain of leaving baby at the hospital day after day. All I wanted was to see the end of our long NICU days, take her home and just enjoy her.

I was wondering how things could go so wrong. Every step of the way -- in between the stress of it all and the break downs, I held on to hope but matters were only getting worse and more traumatic. Some tests were being done and more were being ordered. The pieces were falling into place  so very slowly making it all so painful. The was no sign of the Pericardial Effusion, now. The VSDS were there but that's not the worst part of the story. A part of her heart's wall was still thick. The liver looked normal in size, now BUT there was a mass in there, instead.

So more tests. In the middle of all this, the resident doctor came to have a talk with us. She told us that the baby's Alpha Feta Protein was way higher than that of  a healthy human adult and that much in a baby only meant that she had cancer.

I felt my world crashing! It literally felt like I was standing and everything around me had gone down in a quake. That is exactly how it felt.

I remember telling that doctor, no (that I didn't want to go to another room to get myself together). I remember walking to the baby picking her up and holding her and letting down streams of tears. I wasn't even bothered about the wires. I think something beeped and one of the nurses come and turned off the monitoring devices so that the noise would cease. For a while I could think of nothing and no one; only baby and me. I didn't even want to talk to hubby. It took me some more time to realise that that verdict must have come as a big blow to him as well.

A little later an elderly nurse came by to talk about other cases and to tell us about the things that could be done and about chemo, and all that; things I didn't want to hear at all. That was no consolation at all and I'm surprised I didn't snap at her.

A couple of hours or so later, an oncologist came running in to talk to us. And told us that not all that we heard was final. True her AFP was high.  But (LISTEN to this, it might be useful to you or somebody you know) that the baby produces this in in the fetal stage and the large amount that is seen when the baby is born, is usually lost in the first 6 months or so after birth. That again was not exactly comforting but there was a small ray of hope.

He advised a biopsy, just to be sure. This time there was no thinking. We said yes to it and hoped for the best. But that wasn't easy either. The next few days continued to be --needless to say -- tough.

Here I'll cut the story short and tell you the days were about more blood tests, a scan and a biopsy on a 5 day old baby. I won't talk about the emotions there, as you can guess what it all must have been like.

Again fastforward to another couple of days, that same oncologist came running into the NICU, this time actually sprinting in to tell us the biopsy results were out and that, that mass was benign. It sure was good news, probably the best we had heard in a while. I remember hubby put aside his inhibitions and gave the small-built specialist a bear hug. I remember I stood there stunned and showing absolutely no emotions. I should have cried with joy; anybody in my place would have done that, I'm guessing. I couldn't. I didn't want to rejoice. Yet. I was too used to too many ups and downs in the months running up to that day, that it just seemed impossible for it to be the end of all this misery.

In my mind I was saying, 'Ok, so this is over. What next?'

Anyway, some things had to be watched for a couple of days, according to the doctors. And then all the doctors involved, the specialists included, gave the nod and we finally got to take baby home. That day, I tell you -- I was in high spirits.

And that is not the end of the story. The 'echos' and the scans and innumerable blood tests were ordered and done. And just like how it was during the pregnancy, things were looking OK at one visit and looking not so good in the next one. It looked like this emotional roller coaster just would not stop.

We were back in India (from the US ) when baby was 5 months old and did a follow-up at 6 months. The new doctors studied her papers and did some tests, very minimal and only the really necessary ones and her blood test continued to show a decrease in AFP.

Last month, after she turned one, we returned for follow ups. Her heart looks pretty good. The thick part seems to have evened out with the growth of her organ. There are a couple of VSDs to close. But that was the least of our worries. And the for the mass -- they don't see it now, even after two different scans. That is supposed to be good news, but again, I don't want to rejoice, yet. A disappearance was not something we were told to expect. I hope the next follow up will give me the best news ever.

For now, I live in hope.

P.S. Have I told what we call this precious little girl? I would have named her Precious if it didn't sound so out of place where I come from. :) We call her what in-the-language-we-talk-at-home also means 'hope' -- Prateeksha.


I didn't know if I would ever be ready to tell this story. But 'Housing' put before me a prompt for which I had a story and this is it. 

At this point, I would like to put down a big Thank You to every body who gave me the strength and motivation to go on with optimism, and to look up.
A big Thank You to my bestie Sri who is the reason I'm still sane today. Thank you for being there each and every time. Thank you feeling my pain with me. Thank you for being a big part of my story. Love you so much, Puttus.Thank you Achu and Lambu for being my 'sisters-in-pregnancy' and sharing your notes with me. More than that, thank you for all the moral support. Our being together on this pregnancy journey made it easier for me to confide in you. You girls said just the right things. I was afraid of the wrong questions that people would ask if I shared this with them.  And its easier to cope this way. ;) A big sorry to those I pulled away from. It was tough talking about anything at all, leave alone this stressful pregnancy. Thank you to V chechi for giving me the courage to go ahead and do the Amniocentesis. Thank you (B) chechi, Sheeba and Josoota for the prayers. Thank you Meenu for checking in on me from time to time thanks to your mom, the 'doctor-aunty' for talking to the experts and trying to find some answers and for sending her love and good wishes. Thank you Amma for coming over an making our lives so much easier and taking care of our now- older one. I don't know what we would have done without you there to help.And most of all, a big, big, big Thank you to my Sonny Boy who was so kind to let us disappear every morning and return way past his bedtime. You were so kind and so co-operative in those really-hard days. When you get to read this, I want you to know that -- You've been the best boy you could be. Now you can go back to driving me crazy, which you have already started doing. :)

05 March, 2015

My story of Hope - I

It feels like it was long, long ago that I picked up my cell phone and clicked a picture of that stick that detects hCG. A few weeks, a visit to my OB-GYN and a scan later that picture found it's way into Facebook (private) messages to some close friends and some family.

Everything was perfect. I felt good. I didn't develop an aversion to food like I did when when I was pregnant with baby number one. There was no morning sickness as such, so I could drive my preschooler to his day-time home and do grocery shopping and all of that. Life was pretty much normal except for the joy I felt about the little person who was to be the newest addition to the family. There were a few times when some discomfort crept into my days, but I found a way to beat it; I just had to out and see some places and I was a happy girl.

Then week 20 came up. It was time for the big scan! The scan where they look at the limbs and organs and the sex of the baby. I was supposed to go home that evening and celebrate the news that I was going to have a baby girl of my own but my stars had other plans for me. The medical center that had done the scan found some excess liquid in my yet-to-be born baby's heart, around it to be precise. I was asked to come back a week later for another scan. I was told it was a not whole lot of excess fluid so it could go away by the time of the next scan.

Out of the labs and in the reception area, the lady who was to schedule my next visit told me that the doctor in there had also asked me to go for genetic counseling. And asked me if I would like that to be scheduled or would I like to wait until the scan. I chose the latter, right away. I was very hopeful that that excess fluid would go away.

However, anxiety began to creep into my mind and my days. Still hoping for the best, seven days later, hubby and I went for that scan. The news was that everything was just as it was. It was such a sinking feeling. Now I had to go do that counselling that I was dreading so much. I knew I would be told more than I needed to know and that it would all be too much for me. And too much it was for me. I broke down at the counselor's cubicle.

I was told that it could be a genetic issue or a viral infection and about all that it could do to the baby. I was advised to do some blood tests and an amniocentesis to make sure things weren't too bad and if it were, then we could talk about termination. Hearing about what could go happen if the amniotic test could do to the sac if the test didn't go as planned, was more than I could think of, so I said, let's do the blood tests first. Deep inside I let me be hopeful that in the meantime that excess fluid would take care of itself as it is sometimes known to happen. I was pretty healthy and I don't know of anybody in the family who had had this, so I was quite sure all would be well the next time.

Only it wasn't. And the blood tests didn't have any answers. Neither did the counselor in her analysis of family history. So we had to go ahead with the amniocentesis. Thankfully the worst did not happen during the test. And the doctor who had done it was a kind gentleman who did not up my anxiety like everybody else in the building did.

The fact that things weren't the best and being told of all that could go wrong in the long run didn't help the anxiety that was already in my system. Then we had to move houses. Now moving meant anxiety: anxiety about leaving my OB-GYN whom I had grown to like and trust in the five years I had been seeing her, anxiety about having to put my four  year old in a new learning environment, anxiety about finding a new doctor; not to mention the Pericardial Effusion.

Pericardial effusion is the condition where there is excess fluid in the cavity around the heart. And now, that also meant, we had to start seeing a paediatric cardiologist. More doctors, more anxiety. Soon I was seeing a new Obstetrician, a new paediatric cardiologist AND a Perinatologist. Yeah, one more doctor and that means more you-know-what.

The next few months of my pregnancy was about more scans. You won't believe how many were done and I don't have a number now; I lost count of it. Anxiety and hope were like the two pans of a beam balance. One time I would be told that it looked like the amount of fluid had gone down or that it hadn't increased; now that is supposed to be good news, here. Another time, I would be told otherwise.

In the middle of all this, every month I was to see a cardiologist at a medical university some 30 miles away. As we were moving closer to Arrival Day, the visits to the doctor increased. Now I had to be monitored more closely, my case was upgraded to high-risk pregnancy and the medical university was my new hospital. This meant a new set of doctors too; remember I'm not talking about just an OB-GYN. Yeah. Exactly!

The rest of the way there were 'echos' and non-stress-tests on a weekly basis. Twice a week we had to drive those 30 miles. My mind was a mess. I had to pull through nevertheless. I kept reminding myself that I had to hope for the best and be prepared for the worst. Although one of the doctors had addressed my worst fear and told me that that was not impossible that it was life threatening, I knew all would be well once the baby was out and the cardiologists could have a better look.

As if all this was not enough stress, we were told that the experts had discovered some VSDs, found a part of the wall of her heart to be thicker than it should be, AND the baby's liver looked enlarged, now.

Fast forward to 'Labour day' -- which is a story by itself -- we became parents to a beautiful baby girl. Sadly I didn't get to hold her as soon she was born, as is the norm. She was whisked away from my sight and to the Neonatal Intensive Care Unit (NICU). And I, having had a rather hard and sans-epidural-labour was hooked on to some narcotics for some much needed relaxation. In that state, I was in some kind of elation; it filled me with another cache of hope and all I kept saying to me was, "We have her here -- Alive."

PS: I've left some loose ends here in this post. I  promise to tie them up in another post -- My Story of Hope - II. 
We still live in hope. 
If I've left you feeling the need to know more, let's pretend do some time travel here. Let me come to you from the future and say things are ok now. But the story did get worse before it got better. 
And we still live in hope. 

This post was written for Housing.com's Happy Hour topic 'Look Up Stories, where we were to write about a story of optimism and hope for future. Thank you Housing for the optimism campaign and the prompt.

31 January, 2015

Rounded up: Bangalore's Blog-sheep

image courtesy: GoGraph
If you are a blogger, you know that there's this other world that you can go and get lost in, every now and then. A place where you turn into a writer and a reader and everywhere you turn you see another writer, another reader, another person who is lost in that world pretty much they way you are. You probably call it the World of Blogging or Blogosphere or whatever but it is a place like no other.

If you are an Indiblogger you know there is another place that has its door open to all who are 'Indian by Birth and Bloggers by Choice.' It doesn't matter who you were born to or how you were brought up or even what marks you scored in your board exams. You just have to be bananas over blogging. Indiblogger.in is not just another blog directory. It's like this neighbourhood uncle who brings together bunch of blog-sheep and gives them each a microphone to put out their bleats. If you are in Indiblogger you know the Indiblogger meets are a big loud party that welcomes even that truant child who has not put up a post in a long, long time.

For a while now, I'd been watching these parties from half way around the world and wishing I could be a part of those gatherings where you met the bloggers you've been talking to in the form of comments. I'd been wishing for a Bangalore meet when I was visiting the homeland and wishing all the universe conspires in helping me walk into one of those parties.

And finally it did happen, thanks to Indiblogger and AsusIndia who joined hands to put together the GoSleeekAsusExperience at ITC Gardenia in the tech capital.

That was definitely a wish come true. Thank you dear Indiblogger for the invite to the first meet of the year. Thank you for letting me be where people where interested in knowing what I blogged about and where my web 2.0 home was, and how long it had been since I'd got bitten by the blogging bug. It was great to rub shoulders with a crowd of Indibloggers who bothered about posts and keywords and comments and page-views and viewers and followers and blogiversaries and IndiVotes and IndiRanks and all of that. (phew!)

Thank you Indiblogger and Asus India for bringing me face to face with some bloggers I had been reading, bloggers who have been reading what I've been reading and writing, bloggers who I had connected with and bloggers I ought to be connected with.

Thank you so much from the bottom of my Indivine posts.

Indibloggers. 'we blog therefore we are' :)

PS. And because Human-Wants are unlimited and one 'want' leads to another, this blogger wants to attend another meet and then another and also wants to meet her blogger friends who regularly sign in to Indiblogger from other cities. ;) (Universe,  are you listening?)

Once again, Thank You Indiblogger and Asus India for The ASUS Indiblogger Meet in BangaloreFor those interested in the ASUS products that are hot right now, check out the ASUS EeeBook X205TA and the ASUS All In One PC ET2040.