A decade

I am a bad blogger. Last many weeks I have been thinking of blogging but have been quite lazy about writing. I have been using my time when the boys nap to catch up on my own sleep . Something I badly needed. But I wanted to have my New Year post before it was too late to post one.

New Years Eve was fun especially since Bumbum was up and running. We had an impromptu party at our home with some fellow parents.  A bunch of friends with little kids who could not go clubbing, planned to get together at our place and spend the evening together. I must say it was really fun. My boys were up almost till midnight. It was funny how Junior fell asleep 5 minutes short of mid night and Bumbum slept exactly at mid night.  At midnight I felt so complete and secure as all my boys hugged me and held on to me.

All over the media everyone was talking about the last decade. It set me thinking about my last 10 years. It has been quite a decade for me. This was my 10^th NYE with D. We brought in the millennium together at Pune.  It has been quite a journey with him.

10 years (and a few months) back I took a decision to try and make it on my own. I wanted to start living alone, try and pay my own bills and face my own decisions. My parents obviously did not approve in the beginning. They wanted me to go home after I finished my Engineering, but finally they gave up. After the last day of college, everyone took the train home while D and I took the bus to Pune. We wanted to build our own lives in our own terms.  The journey has not been easy. Living alone sounded easy at first, but it had its own challenges. Getting a job, something decent enough to pay for a decent place, was just the tip of the iceberg.  But slowly in a couple of months I started paying my own bills and I am still proud of myself for being able to do that. It was not a big deal, everyone does that eventually. But I was one spoilt brat growing up. I was the only child of my parents and for me it meant a lot to be able to get out of that mould and be able to create my own corner in this world. I am not a big shot by a far cry, but whatever I am today I can proudly say that I have created my own path. I never followed rules, I never went by the book, I just did what I thought was right and faced the consequences. I made terrible mistakes. There are a lot of things I did that I am not so proud about, but at that point either I thought that it was the best route to take or I had no other option. But even the worst decisions were my own. There were days where I ended up homeless because of some crazy land lady and I absolutely had nowhere to go but to D-s. I ran to him everytime things went wrong. Thank God I had him as my support system in my worst days. That is what makes him my best friend I guess. I don’t know if I have been as much supportive to him as he has been to me. But I know in the last decade I could not have survived a single moment if he was not standing behind me, trusting me in all my craziness. Even when I took disastrous decisions, he stood by me like a pillar. All I had to do was to pack my bags and ring his door bell. A few years back I actually took a flight, crossed the oceans, and was standing at his door step because I did not want to go anywhere else. And as usual he just took me in and all was well

The last decade has not been easy but we were in this together, and we can now look back and laugh about it all. Now I have my 2 boys, and I hope the coming decades are easier on us. I hope we make less mistakes, I hope we have double the fun; I hope the love lives in our hearts.

Preemie Mom

I came across this poem today and it gave me Goosebumps. This says exactly what I felt and I feel even to this day when I look at my boys. I could have written this.

I had to add this to my blog

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Congratulations on the birth of your beautiful son
What? I’m not ready. It wasn’t supposed to be like this
I’m not due until September, it’s only June, you must be wrong
Isn’t he lovely, who does he look like?
How can I tell? Surrounded by plastic walls, wrapped up in wires
Please take me away from here. I can’t deal with this today

Hello mummy, your boy’s doing so well
He started his milk today, you must be so proud
Are you talking to me? I don’t feel like a mum
Please don’t call me that, not yet.
Why did this happen? What did I do wrong?
So many questions, I’m lost in this world.

Home at last, but home alone.
Last time I was here I was pregnant
I walk into your nursery and put my hand on my belly
Both empty. I scream in pain – Give me back my baby!
The first night is the worst, and they don’t get much better
Desperately listening for the phone to ring
Living for the moment when I can return to your side

Would you like to hold him?
Are you kidding? Of course I would.
But wait, surely he’s too small
I might hurt him, I can’t do this.
Here you go, your baby in your arms at last
I cannot speak, so tiny, so fragile but yet so perfect.

Nurse, my baby’s not breathing!
It’s ok, he just forgot. It’s quite normal for his age
Hold his hands, touch his feet, he will soon remember.
What? Are you people crazy?

How can this be normal?
I need some time out, my head is spinning.

For hours, I sit and stare at you
Enclosed in your plastic box
I’ve learned the beeps, I know when to worry
I feel like we’ve been here forever.
Will we ever get out? Will I be able to cope?
I cannot wait for the day to come, when you leave here with me.

3 months on and your finally home
Now you’re bigger and stronger we can finally be a family
Free from wires, your new life begins
So many achievements for such a little one
Breathing by yourself, drinking from bottles
The simple things, others take for granted are so special to me.

I still have so many questions though,
Everyday I continue to ask why me?
But when you look at me and smile,
You have given me the answer no-one else can
I’m the luckiest person to be granted a preemie
And I’m honoured to be your mum.

Fleur Tedstill

The Memory Game

Last night after I put the boys to bed I sat up staring at the sky hoping that Bumbum heals as fast as possible and we can let him run and be the wild boy that he is. 6 years I told myself, in 6 years I will forget all this. That’s when I tried to play a little memory game. I tried to think what I was doing on New Years Eve in the last 6 years.  So here is a list

Pre 1999: Most New Years Eve was either at home or at college campus.

1999: With D in Pune , the best New Years Eve till date

2000: With D, but I don’t remember what we did ..

2001: D was in USA and I think I welcomed the New Year chatting with him online

2002: Went to a friend’s  farm house in Pune with RA

2003: In Mumbai, watched the fireworks from my apartment window while having an amazing dinner by myself. Played some amazing music. I celebrated my last New Years Eve in India alone but I loved it

2004-2006 : Partied with D and his friends. 2006 Nilu joined us

2007: I was pregnant but still partied the night away

2008: Went to meet friends but came back before midnight to be with the boys. Junior was fast asleep but Bumbum and I stayed up to watch the ball drop

Edited to add: 2000: D reminded me that we spent that New Year’s Eve with another friend at my appartment, he made amazing dinner and we all watched TV.

5 years ..

It took us Five years and two kids to forget. Yes on this very day five years back, on a cold winter morning, D and I took the vows. This day is extremely special to us, because after facing extreme opposition from our families and surviving three years of long distance relationship, we finally got married.

But still, this year we forgot. We forgot that today was the 8^th. We had been so busy with Bumbum, his surgery, and his post surgery care that we completely forgot the date. I guess priorities change with kids, especially when the family is going through a period like ours.

In the last ten years we changed roles several times, from friends, to best friends, to man and wife, to parents. D, has been great in every role, he has been a great friend, amazing husband. But I think he has been the best in this role. He is a great Dad, an amazing father. He has rocked his babies to sleep, fed them, cleaned them, and sat up at nights by their bed sides when they were sick.  

But this day is about us, as Mr. and Mrs. And finally we did sneak out to have an impromptu dinner date and rushed home as soon as we could to be with the kids. Life has changed in the last many years. From carefree teenagers we are proud parents now. But I am glad where ever life has takes us, we have each other. And that’s what matters.

Day 4 Post-Op

Sunday, Dec 6 2009

And this is the BESTEST DAY We are all going home. Bumbum has made tremendous progress from last night. He ate a little better today. His eyes are much better looking. He was cheerful and he played his favourite peek-a-boo too. The doctors were happy with his progress. We all agreed that he will feel better when at home. nd there is nothing much that we can do at the hospital anyways.

From now it would be a different routine for him for three months. The biggest challenge would be to keep him calrm and to keep him from taking any hard hit at the head. We have to keep him and Junior from fighting and most importantly “head butmting”. They do that a lot over toys. So we took a deep breathe and packed up. D headed towards the appartme nt to pack up while I finish up the hospital formalities.

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After I wrote the above lines, Bumbum woke up cranky and I knew that he was ready to leave as well. The hospital formalities took us a good 3 hours, and it was almost evening before we could get Bumbum out of that place. I was super happy. I was just dying to see Junior’s reaction when he would meet Bumbum after 4 days. There is absolutely no words to describe what I saw. I will regret not having a video camera at that moment, for the rest of my life. Junior was excited and jumped up and down. Bumbum could not open his eyes well from all the swelling but he knew, he just knew that it was Junior standing next to him and they yelled. They yelled and they blabbered. Twins they say have their own language, may be they do. What I saw at that moment just made me forget the last couple of days. It made me smile and join them in their yelling game. We are whole again.

Day 3 Post-Op

Sat: Dec 05 ’09  

Today it was me who was not feeling quite well. 4 sleepless nights usually does that. I woke up with a bad head ache. Bumbum needed some pain medications last night and he kept waking up every 3 hours. Then after the medications we needed to pat him back to sleep and just stay attentive so that he would not start scratching his eyes. He has started looking better right after they took the bandage off. The stitches on his head are almost invisible and with the swelling going down it’s looking better. Dr. Staffenberg really did an awesome job. I will post some pre and post surgery pictures of Bumbum after we get home. His head is round and nice now and there is no visible scar from the surgery. And today is just the third day post-op. Three years down the lane I think it would be hard to tell that Bumbum ever had any surgery done. Since they did not shave his hair off, whatever swelling he has on the head is not really visible. But these are really not the highlight of the day. The best part of today was when the nurses took all the IV lines off him and we could hold Bumbum. He immediately relaxed. We felt so much better after we got to hold him. And then when I stepped out with a smile on my face to meet Junior I felt the first snow of the season fall on my head. It was such a beautiful day. I walked in the snow to the apartment and Junior was right there waiting to play with me. Last few days I have been writing about Bumbum because he has been struggling here, but Junior my hero has been putting up an extremely brave front too. The baby who has never liked been fed or handled by anyone else but me has been so mature about this whole thing, that honestly I am surprised. He has been calm with my mom, taking all the feeds from her well. Junior has weight gain issues, so we are over sensitive about his food. What he eats, how much he eats, duration everything. So I was worried about him when we came here. But he has been behaving very well Slowly we are getting out of this situation and I am so proud of all the men.

D has been a super strong dad. He is a great father anyways. He has stayed up at nights with the boys, changed diapers, given bath, cooked for them and all of these on an everyday basis for the last year and a half. So I did expect him to be staying up and sitting by Bumbum’s bed side may be more than I do, which he did. That’s what makes him such a great dad.

Day 2 Post-Op

Today has been better. Several things worked out as we wanted them to. The doctors and the nurse managers came and assured me about the pain management issues we had last night. They were really helpful and they understood our concerns. So now I am sure they would be no confusion about the pain medication. But on the other hand, Bumbum did not need any morphine for the last 36 hours. So I am sure he won’t need any going ahead. This is usually expected by the time the babies are on Day 2. The first 48 hours are anyways the worst. I wish he got the much needed dose last night; we could have saved him from some pain. But well, everything is in the past now and after talking to the doctors and the nurse managers today, I am sure that it was just one person who was wrong. I will not blame this incidence on the whole institution. I guess if this happens again today I am just going to page the surgeon who did Bumbum’s surgery and he will take the final call. I should have done it yesterday. He is anyways just a phone call or email away. But well, we all learn with such situations.

Best part of the day (and I missed it) was when Bumbum’s bandage came off. I usually spend post breakfast time with Junior at the apartment we rented out here. He needs his own mommy time too. So while I was playing peek-a-boo with my li’l munchkin I got this phone call from D saying that they are taking the dressing off. I was nervous to know how his head looked. D assured me that it looked awesome and he sounded so excited over the phone. It has been a long time I did not hear that excitement in his tone. I knew even on the phone how happy he was. I knew and had complete trust on Dr. Staffenberg. I had come this far just trusting that he would be the best surgeon to do this surgery for Bumbum. We had our confusions about whether or not the surgery is a necessity, but there was one thing we knew for sure, if we are having the surgery Dr. S would do it. I wish he could be a visiting doctor to NJ though.

Bumbum has slept well most of the day today. His eyes are still puffed up and he cannot open them but the swelling is going down and I think we should be able to see some significant progress tomorrow. Fingers crossed.

Day 1 Post-Op

Yesterday was Day 1 post op. It was tough. Tough is a small word to explain what D and I are going through here on a daily basis. The fear, the anxiety, the fact that Bumbum is lying there all swollen and puffed up unable to open his eyes, the fact that the staff is although knowledgeable is not compassionate around a family whose baby just had surgery. Sometimes compassion makes a huge difference, especially if people are going through a situation like ours.

Coming back to 24 hours post op, the good thing was that he was moved from the ICU to the regular ward. He did have a uneventful morning, he pretty much slept through it all. The medications were given on time, but he refused the bottle so he was still on the IV fluids. All the monitors came off yesterday so he slept calmly through the night.

After moving from the ICU to the regular ward, what surprised me was the fact that Bumbum an ex preemie was in a place where there are RSV and flu patients. The fact that he had a major surgery and would be more prone to catching a bug, should have been also taken into consideration. His roommate here was coughing quite badly when we came into this room. I had to stand up for Bumbum and I started asking people on the floor if there was an option of him being alone in a room or to keep him in some place where he would be less exposed to a bug, may be share a room with someone who did not have any respiratory issues but was like Bumbum a surgery patient or something similar. I got all sorts of answers which pretty much summed up to say that “We know what we are doing so please just mind your own business”. I had it enough with the corporate lingo; I was one of them till a year back so I know very well how this thing works. I knew I was just being hushed up with sugar coated words. Anyways I know for a fact that Bumbum’s ex-preemie status and the fact that he has just had a major surgery added up to the risk of him catching anything in the air and he should not be sharing room with anyone who is coughing so hard. May be the person just had allergies and would not harm Bumbum in anyway, but I had to make sure that everyone knew that he was an Ex-preemie and since it is the RSV season, that they are a little more careful.

But I guess the fact that I made it a point to talk to senior authorities and reached out to senior doctors who understood my concerns and agreed, things started moving and eventually people came and told me that they are making sure that he is not exposed to anything that might cause a risk to his health. The coughing neighbor was scheduled for discharge and we have a confirmation that no one with respiratory issues or any kind of infection will be put in this room. Thank God! One thing less to worry about.

I do not know if it was mere coincidence but Bumbum started wheezing a couple of hours after his entry to the regular ward. We all waited to see if it got worse and prayed that it would just stay just a sound. But it did not and it just became more and more audible. Thankfully the Albuterol that was administered worked and then combined with some Pedialite, it calmed the heavy breathing.

He was waking up during the night specially around the time the pain medication effect started wearing off. But after the albuterol, he pretty much needed just the pain meds. The sound could have been from the intubation during the surgery, but I think there is no way to find out for sure.

I am hoping for an uneventful day today. Just hoping he sleeps through the night, gets his pain medications on time and just heals as soon as he can so that we can just get out of here and he can be where he belongs, at home.

Surgery Day 1 and 2

We thought we are brave, we thought we are prepared, we thought we knew it all. We woke Bumbum up early in the morning and took him to the hospital telling him to be a strong boy. I think he listened to us and he was strong. He did throw a fit as expected when the doctors tried to dress him up for the surgery and did his vitals, but the moment he went to D’s lap he was happy all over again. He thought that he would be going to have fun while D took him to the OT for them to put him under anesthesia. He was smiling as I hugged him and wished him a speedy recovery. My heart broke seeing him go to that OT. D came back after what seemed ages. ( In reality he was in there for 15 minutes). After he came back and I reached to hug him I saw his eyes were all red and I could say he was crying. That was it for me. He for all my growing up years has been my rock, my pillar. When I saw those tears in his eyes I broke down like a baby. I cried and cried and cried till… till I actually fainted.  Some one picked me up gave me water and I was back in a jiffy but I was still crying. Another person came to me to talk to me about how strong I have to be for my baby. Yes ma’am, I know that speech too. I can give it better than you to someone else. But it was my baby they took inside to open his head up!! A part of me was being ripped out and stitched up in that OT and I had to be strong and smile and greet people.  

But D just took me out of that place and just held on to me while I calmed down slowly. Accepted what was happening and prepared ourselves for what we were going to see. After what seemed like ages the NS came out (reality: 2 hours, but that IS a long time). He said that Bumbum was doing well, the first part of the surgery had gone very well and he was extremely happy. That calmed us down further. We were comforted to know that Bumbum did not lose much blood and did not get a blood transfusion. Now the wait was for the plastic surgeon to come and tell us that the surgery is done and give my baby back in my arms (I really hoped that I will get to hold him). Again the clock refused to move fast enough. We had made a million calls to D’s family back in India to just keep ourselves from crying more. It was such a relief to talk to his sister. She really gives me a lot of strength at times.

Finally Bumbum was out of the OT and in the ICU after a whole 5 hours. When I saw him I ignored the bandages, I ignored the wires on him, I was just so happy to see my baby again. His head was in a huge white turban. I sometimes call him Cookie Singh jokingly, now he did look like Cookie Singh J The vitals looked great. We were used to those machines from the NICU. So we knew that he was doing good. He did not seem to be in much pain. Tons of doctors came, NS residents, Cosmetic surgeon residents, ICU doctors, attending physicians, nurses, head nurses, security guy ( no clue why he came though!). Everyone more or less told us the same story about the surgery. All the time they talked I just held on to Bumbum’s finger. I don’t think I have words to explain how I felt at that moment. He was with me and that was what mattered at that time. I knew he would do great; it would be me who did not have the guts. He is the superhero anyways.

The first night was rough, as the anesthesia wore off, I guess the discomfort started. He tossed and turned and at one point even tried to crawl and stand. The morphine did not have the expected effect of keeping him knocked out. He moved, tossed and turned and we gave him more morphine. As the night passed his eyes were swollen shut as expected. That made him more mad and upset. We had our own issues with the nurses and the resident doctors, but at this moment all those do not matter at all. I could have stayed in NJ and had this surgery, but I came here because I had heard great things about this hospital. Well !! every place has its good and bad and I guess I will wait till the whole stay is over before I make any remarks on this whole experience.

Last night we just kept staring at Bumbum, trying to calm him down with his favorite lullaby. He reacted well to our voices. Today he has been a little better with the pain. He has slept better than last night. He has been very calm. We were moved from the ICU to the general floor. Again the nurses seem to be very unresponsive. But I will again wait for the whole stay to be over before I make any comment on this. We are sharing our room with another patient. What surprises me is that even when they see that there is a baby who is cranky at loud noises, how insensitive people can be. I have to make repeated requests to keep in down. The TV is loud; they have too many guests who just could not keep it down.

A little compassion for others can make this world a different place.

CRANIO… What? How do you spell it again?

When Bumbum came home from the hospital we were too happy and relieved to notice something was just not right. We were just too happy to have him home and did whatever we could to make him comfortable. After a few weeks Junior came home and we just felt complete. But like every mom I kept on admiring the faces of my babies and that is when I noticed that Bumbum’s forehead just did not look right. It had a strange bulge and I could feel a strange bone in the middle of the forehead. I wondered if he had bumped his head on the sides of the crib and changed the crib bumper to a better thicker one. I thought that the bump will go away with time. But it did not. At the next pediatrician visit we brought this up with his doctor and he said that it might be from sleeping at one side. It will get better with time. Months went and his head shape just did not seem to get better. We changed pediatricians, asked the NICU neonatologists when we met them No one seemed to have an answer to us. But fleetingly someone mentioned a word “ridge” to me. I was really keen on finding out what this bone was doing in the middle of my child’s forehead. My husband was calm; he said that since the doctors are saying it will get better with time, it will. I just did not feel right about the whole thing. After I got home and got free from all the chores of the house I took my laptop out and tried to Google out “ridge on forehead”. And that is when I found out about CRANIOSYNOSTOSIS.

My little boy was suffering with something which is an extremely rare disorder. METOPIC CRANIOSYNOSTOSIS, which means the Metopic suture in his skull fused prematurely. I think it’s 1 in 2000 kids that get affected. My search for an answer did not end there. It was in fact just the beginning. By the time I found a name to the thing on his forehead, I got more nervous since all the websites talked about surgery. I had to find a neurosurgeon, and I won’t get an appointment till our pediatrician agreed. I played a small game, I told my ped that the NICU doctors were worried about his head shape and wanted us to go to a NS. Bumbum had turned 8 months when we finally got the appointment. I thought my whole confusion would end with the appointment with the NS, but this being a rare disorder no one knew much about it, yes not even this NS. I kept searching, talking to parents who had kids with the same condition, networking, getting in touch with experts, till I found one doctor in New York who is a big name in the craniofacial world. It took me another 2 months to get appointment with the plastic surgeon, another 3 months for the NS appointment. By the time we got a confirmed diagnosis and a CT scan done Bumbum was 13 months old. The only factor that all our doctors agreed upon was that this will not cause him any brain damage. They seemed to be very confident about this one point and thank God for that. Like our cosmetic surgeon Dr. Staffenburg  puts it, this is not a brain surgery, this is a bone surgery.

 There was a time I could not even spell craniosynostosis and now I know what any non medical professional can know about Metopic. I have joined causes supporting this rare disease and I have been in touch with many mothers who have been through a journey similar to ours. Most people get their kids diagnosed before their first birthday and majority of the surgeries happen in the first 6 months. My boy was not even diagnosed in the first 6 month of his life. Well all that is behind us and we are heading to New York tomorrow where he gets his surgery done. I have been through a varied range of emotions in the past one year. I have tried to reach out to anyone who I felt would have even an iota of information on this subject. I blamed myself for this condition till I realized that this is a spontenous thing. D or I had no hand in this. The main problem was that the medical fraternity has different views on the treatment. Some think that surgery is inevitable, some don’t. We got stuck in the dilemma of doctors. It was tough to come to a decision. What was awesome in it all was how strangers, moms and dads of kids having the same condition as Bumbum’s came together and supported us in this journey. I am truly humbled at this whole experience. Parents sent me pictures, emails, notes on what they went through. The verdict from the parents was common, go for the surgery. One mom called it a major surgery with a very low risk. I am not sure how the surgery will go. I am a mom who gets upset when Bumbum or Junior cries from the shots. I have no clue how D and I am going to face the coming days. I know it is going to be tough. Bumbum is going to be scared. He is going to sleep most of the time post surgery, but I am not sure how he will react when he wakes up. There are too many questions in my mind, but not many answers. Time is the strongest healer and with time it is all going to be OK. We have survived NICU. We will survive this too.