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Happy New Year my love!!!

Dear Atiksh,

I want to apologize first for not writing this letter to you for your first birthday. I was just over the moon with that milestone that my brain refused to slow down to write this. If you do not know my now, you will soon, your mom is a sucker for New Year. It makes me so happy, fills me with so much hope. So I thought I should write it at least now, so that the world can know what a lovely personality you have.

This year has been such a roller coaster. We started the year off with we all being in the winter shut down. You were getting your monthly RSV shots, we all had to shower as soon as we return from work, shopping , school and sanitizers were everywhere. It was so hard but we survived. Though spring came late, we all rushed out the door as fast as we could.

Your personality is so quirky and I am not able to brand you at all, because every time I do, you surprise us by doing the exact opposite. For a baby who got monthly physical therapy in anticipation of delayed motor skills, you started crawling at 6 months, standing at 9 months and walking at 13 months. You could also communicate so well, by 14 months. I also thought you will be more outgoing, but you are not. You are still shy and quiet.

We took you about 3 times to UVA after you got discharged and you passed with flying colors, and now have been officially discharged from physical therapy and the NICU clinic. Since the surgeons love you so much they will be following with you every year for a while still.

This year we travelled so much more than we usually do. Your first outing was the Tamizh New Year function at Blacksburg. It was a nice place to start. Your first overnight trip was to Columbia, SC to see some awesome friends- you also went to the zoo. The baby carrier saved the day. Your first flight was to Boston to see some of the people who have been dying to see you. We had so much fun.  You also got your first haircut, for which you never cried, again a surprise, a beach visit, pampering and so much more. We also went on 2 more beach trips to Virginia Beach and Myrtle Beach. See, I told you, so much travelling. I wanted to show you the world, the world, which I truly believe you may not see. I love you my little man.

Then came your first birthday, it was the biggest gala we threw. People from all over the country came to celebrate you and your lovely brother. We were surrounded by family and friends who love us, cherish us and were so moved by the journey.  You probably did not even realize the amount of love you were surrounded by. It was a lot of fun, though you were kind of sleepy and tired.

This year also marked a huge milestone- you started day care. The decision was not easy. Being around you, we felt you needed that extra stimulation. As you grew up, you started getting bored a little and I wanted to go back to work. The first few weeks you cried, and it broke my heart. In time you settled in and now you love it. Seeing your happy face at drop off is what keeps my day going.

I need to write about your favorite things- to top the list “Anna (Avy)”. He seems to be your favorite thing. The way you hug him, the way you call him Anna, the way you tease him, the way you bite him, the way you search for him after he goes to bed, the way you take anything you find that belongs to him like a pencil, a marker, his jacket,  you have so much love. I do not see that same love when you are with me or Appa. It is a special bond. You also go to him if you a book to be read and the way you sit intently watching him read is so precious. I wish I can freeze time at that moment.

The next thing on the favorites list is “ball”. You love them so much. You collect them, you keep them safe, you try to carry them all at the same time, you cry if you see anyone else touch it, you kick them so beautifully…it is so precious.

The next thing is books. Now this was a total surprise to me. Avy is a bookworm, he always loved them. You have taken an interest in the last two months and it is so cool you have favorites by now and that you can identify the characters. I feel like I am seeing Avy’s childhood again. You chase us down to read the same book a 100 times and really I do know where the baby’s belly button is, and I do not have to read it so many times, yet I fall prey to the smile.

Next comes Daddy- I cannot believe you have become a daddy’s boy so soon. You call him ‘Amma’ though. You want to be a part of the rough play when Avy and Appa fight, you run away from me and pile on them. It is just too cute.

You are also enjoying Patti’s pampering and I am really thankful for that. She and you enjoy books, drawing on the doodle board. You also love to skype with the other set of grandparents, you smile and talk for them.

You are an independent soul, a fighter, you persevere. You never give up. If you need to somehow climb and pull our Christmas tree down, you do it. If you need anything from the top of the couch, you somehow get it. You also have a mind of your own, no one can make you do anything if you do not want to.

You are also happy. A very happy boy. You play on your own sometimes, you love music, you shake that little booty.  When I was doing research on NICU babies one thing I saw across the board was how they are irritated, and difficult children. It would break my heart. Somehow you managed to fight and be happy. Stay that way my love.

All things cannot be so easy with you now? Can they? You are such a difficult child to feed. I mean you will eat anything that comes prepackaged- bars, cookies, raisins, yogurt- but not real food. You dad says I should put home-cooked food in a plastic bag and make you eat.  I do know you have texture issues from being in the NICU, you do not like anything mushy in your hands etc, but please try and eat better. You are skinny to being with and I already have so much white hair from last year- let us get better huh?

You are so smart, you understand so much and you remind me so much of your brother at that age. You can identify 4-5 shapes, some colors, some letters, and you enjoy learning. Keep that way my shining star and you will go places. Can you believe this is your first normal winter and we are already in Jan and spring is not too far off? Hope to more travel this year.

I love you so much and life is becoming normal, enjoy that. Also be good to Anna, do not make him cry.

Love

Amma

 

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Maybe I should go home!!!!

Maybe I should go home!!!!

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Just a year ago…

Just over a year ago, we packed our bags and moved , not knowing what the future held. With a heavy tummy, a terrified heart, I moved. Somehow packed everything and moved to a new place I would call home, not knowing for how long then. It was terrifying, petrifying to say the least. With me came everyone- all my pillars of strength, especially,a tiny almost 4 year old who was reason I held it together.

Now, as I sit and type this, it is silent. Today is my day off…yes, ladies and gentlemen I have started back at work, 4 days a week. Where is Atiksh you ask? He is in daycare.  As my last post said, we started him in daycare, he had a rocky few weeks. We also traveled a LOT in June. Atiksh also had his first place ride to Boston to see his cousins. It has been a packed summer so far.

I have no idea where to start updating, lets see:

- Atiksh is 11 months old, cruises very well. He has quite a few words- Amma, Appa, Mamum, ball (he single most favorite this in the world), byebye, hifi

- He can identify a few objects in a book and around the house.

-He is eating well, still a skinny little man, but no issues eating and you have no idea how thankful I am for that.

-In major new for the blog followers, he got a hair cut, See pictures below.

- We had his follow up with UVA and they are happy. He is close to 14 months in social skills and fine motor skills. A bit behind in gross motor. I am sure he will catch up. We got back in Oct to see the surgeon.

- Atiksh went to the beach he liked it. He also went to Busch Gardens. He is a amazing little traveler. Very happy.

- He did fall sick with a cold and ear infection- but the good news is he handled it well. Come on, lets build some immunity.

- He is in love with his older brother and vice versa. Whenever he sees Avy, he hugs him and kisses his head. I mean, I do not get such treatment.

- He likes daycare and has settled well. Today he did not even cry during drop off.

Wow, typing all this makes me see how far we have come. I am spending my day planning for a very special day in 2 weeks. He is turning 1. A baby, who the day he was born, was so bad that Dr’s thought he won’t make it, fought and clawed his way out, and has become the reason we are making this celebration so special.

Since the brothers love each other so much, we are having a combined birthday party- both big milestones- 1 and 5. We are having loved ones coming from all over the country. I am beyond humbled with the love of these people. I still believe that we handled everything only because of the tremendous love and well wishes of so many people.

Some picture time…

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Big day for Little A

Today is a very big. big. big day for our Littlest A. He is starting daycare. We are going to start slow, he is gone for 2 hours today. It is all very overwhelming.

This was a hard decision  for us, but a much needed one. I have been on a break from work for almost a year now and I am more than ready to go back.  I go back in July.Yet, this day breaks my heart.

Morning started off, with all of us getting ready. Avy was excited, but also sad. He said that his baby would cry. For some weird reason I feel more sfae knowing Atiksh is going to be in the same place as Avy. Avy is just in the next classroom, as though that would help. Yet it makes me feel a little better. They wore matching Yo Gabba Gabba T shirts.

We went, dropped Avy off first and then went to Atiksh’s classroom. Ajit was holding him the whole time. When it was time we handed him off to Ms. Jessica. Ajit mentioned that on Avy’s first day, Ajit handed off to Ms. Jessica too. We love her. Atiksh went willingly, hugged her and just lay on her shoulders. I knew he wouldn’t want to go if I held him. He was fine, till he saw me leave and he just wanted to cry. We make a quick walk outside and I broke down. It never is easy.

I am home now, typing this. I have a whole lot of cleaning to finish before I go back for him. Tears are not stopping. I want all of you who pulled for him during his surgery time to pull for him now. This is him being ‘normal’ and I need all the good thoughts. I just called- he is crying in small bouts on and off, but apparently made a real connection with a little girl and playing with her. God bless little girls.

This morning…

 

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Hearing well??

Today we passed a big milestone. Atiksh has his hearing follow up test…he passed with flying colors. A certain percentage of CDH kids have delayed hearing loss, so we need to monitor him closely. He will have once every year till he is 5. For now, he is good.

He has been growing well, babbling a LOT and knows a lot- he will looks at different things when we ask him- his favorite elephant toy, his big brother, his grandpa..he can recognise and look at everything.

He can wave bye-bye in a weird way though, he can play hide and seek with his dad…and is officially cruising now. I swear I will put more pics soon. Just a quick update.

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Maybe more regular from now on?

The last two months of our life has been consumed by work, some sickness and managing logistics. That explains the lack of post. Since this is Atiksh’s blog,  I will keep it to that. A bit of update on him-

- He started crawling very close to 7 months and has been going great guns. He does get physical therapy every month and he is way ahead of his curve. He has also recently started standing holding onto to things and minorly cruising. So now I am so tired keeping everything out of his reach.

- He LOVES cars, trains and balls- especially big balls. He pushes them and crawls behind them. He still puts everything in his mouth all the time.

- We started solids for him and after some initial hiccups he tolerates them well. Due to Avy having allergies we have been slow to introduce foods and so far he does prefer fruits to vegetables and his favorite is Apple-Avocado mush:). Though if he does not want to eat, nothing can make him- feisty little one.

- He has started babbling big time. He calls Avy “Athaaa” and Ajit and I he calls “Dada”. He of course adores his big brother and wants to be around him all the time.  Now that my work has eased up, hoping to have both of them at home more.

- He did fall sick in March- cough, cold and an ear infection. It freaked me out- his fever went up to 103F and it was a tough week. However his little body fought it well, no major issues, no hospitalizations, for the most part he was just a kid with an infection.

- Now that spring is finally here, we have started to take him out- Avy’s soccer games, a restaurant visit, visits to pick up Avy…hoping to more.

- My dad is coming in 3 weeks and I am uber excited. He never got to see Atiksh off the vents- Atiksh was still in critical care when my dad left. It is going to be super emotional and I cannot wait for him to hold Atiksh. He is the only grandparent who hasn’t has the chance yet.

- I still worry, a LOT. Every time he coughs, every time he throws up a bit, every time he refuses to eat, every time he cries…I am sure it will leave me entirely.

- This time last year was the worst time of my life, as we had just heard about the diagnosis and did not have a clear path. In fact one year to today was when we had the high tech scan to confirm his diagnosis. Looking at him playing with his favorite ball now in front of me, I still feel a pit in my stomach. I hope he continues to stay okay.

- We have a hearing test follow up next month. Some CDH kids have delayed hearing loss due to the high dosage antibiotics and other drugs they have been exposed to. I do hope that goes well, it is always nerve wracking.

- Oh to add- he is such a mommy’s pet. Needless to say, as we do spend all day together. I have started going to Tang Soo Do (Korean martial art) with Avy since Feb, something for us to bond over . Those few evenings am away Atiksh finds it hard, but it is Daddy-son time. I do have to help him through this phase, as daycare or nanny is something we are talking about as I do need to go back to work. My life is a handful with both my boys.

Here is to a great Spring for everyone. I do promise to update more regularly, as I am low on workload for a while now.

Pics for all….

Crawling cutey

Crawling cutey

Love

Love

Fresh from a bath

Fresh from a bath

All ready to go out

All ready to go out

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Follow ups and such…

Wow it has been a while since I posted, you can say life in crazy. My in laws left three weeks ago and I am trying to balance working from home, taking care of the little one who is getting more and more mobile everyday and balance handling two kids and one husband. It more than a handful. I will be lying if I said I don’t have down time, I do, but I am mentally so fatigued that given the choice of writing a blog or watching mindless television, you can bet what I choose.

Time sure does fly, in about 10 days Mr. Atiksh is going to be a 6 month bundle of pure joy. Let me recap, what we have been up to.

The biggest event was us going for his follow up to Charlottesville on Jan 24th. We made it a family outing. We were ALL so excited about this including Avy. He wanted to visit his Charlottesville ‘home’. I was just happy that I could get out of the house and see people, being cooped in, is NO FUN. So off we went. It is about 2.5 hour drive. We got breakfast on the way, which excited Avy to no end. Both boys did good.

We first had an appointment with Physical Therapist and the NICU doctors. I love one facxt about UVA, they are always on time, our appointments are always on time. So the physical therapist checked him first and he put EVERYTHING she gave him in his mouth and this was hilarious to Avy. Needless to say Atiksh passed with flying colors. He has solid 6 months skills (he was only 5 months completed at that time) and many scattered skills into 8 months. She did recommend we continue the monly PT visit through Early Intervention.She was more than happy with him, but I am sure she would have spent rest of her afternoon scrubbing my baby’s saliva off all her toys. While all this was happening, Dr. Boyle (the nenonatologist) was observing. Then he spent time, a LOT of time checking Atiksh and answering our questions.

We had a big worry as one side of Atiksh’s chest was elevated and it aways worried us, worry that he may have re-herniated. Dr. Boyle out that worry to rest, he said it might be a dis-figuration due to the stress of surgery etc. I am okay with that. Avy was getting a bit antsy as it was close to lunch time and Dr. Boyle gave him a measuring tape and that kept him busy, he was measuring everything.

Of course,since my man is a miracle man, Dr. Boyle was surprised that Atiksh did not have much of a spit up problem, He does spit up, but not any more than a normal baby. He said Atiksh may have been the first baby he has ever seen to have done so well. Atiksh is about 15% of weight and gaining, so we all are happy.

Here are the boys with Dr. Boyle:

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Then they asked us to hang around and said that the surgeon will also see him- this was sooner than out anticipated appointment, but they wanted to help us leave early, as we had a drive back. It was good I had packed some snack bars for Avy, that kept him at peace for a bit. Now, if I have not said it before, I will say it again, I LOVE Dr. Rodgers. He came in and checked Atiksh and he gave the stethoscope to Avy for him to hear. Avy face blossomed and I was so so emotional. He said everything looked good and sent us on our way.

Here is the pic with the man:

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Then we went to the cafeteria had some lunch and were debating if we should go up to the NICU and show off the little guy. We then decided to go for it. We went up and they had changed the way it was set up and it threw me for a bit. As we were waiting up there they wheeled off a baby for surgery and in that moment I saw in those parents what Ajit and I felt both times. I wanted to say something calming to them but remembered that nothing will help till they see their baby safe again. Then we met a few nurses- they all could not believe how big he has gotten.

I really wanted to see Dr. Priya (Dr. Sripriya Sundararajan), as she was his Doctor for most of his stay. Luckily they were getting out of a meeting and we could see her. She was genuinely over-joyed seeing him. She cuddled him and talked with him in Tamil(our language). Everyone is always so joyous to see their work grow- and she said that moments like these are what makes their job worth it. Here us a pic with her. Of course by this point both boys were TIRED.

All in all a good month. We still go monthly for our Synagis shots, but other tan that we are surely hiding. Cannot wait till April to head out and show off our boys. Will definitely try and post more regularly.

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Baby girl B…

I did not know how to title this post. I am using how she was known on her Facebook Page

( https://www.facebook.com/WeSupportBabyB).

We met her at the NICU in UVA. She was Atiksh’s pod mate first and then they were in adjacent bed for weeks. She was already there for 2 months when Atiksh was born. Such a fighter and such a spirited angel. She had her biggest surgery the day after Atiksh had his first., that was a 7 hour surgery. She fought her way back and finally came home this December, after a 5 month NICU stay.

Her parents are some of the sweetest, bravest and most positive people we have ever met. Her mom gave me so much strength during Atiksh’s not so good days. They are from a nearby town to ours and we would talk about how Atiksh and Baby B would grow up together and we would do play dates etc.

Alas, dreams are cut short…Baby B lost her battle and I am beyond heartbroken. She and her parents were a part of our NICU journey and we send our deepest condolences to them. Baby B’s mom got her pink boxing gloves, apt for such a fighter. I have been shedding so much tears today for that beautiful angel, may she rest in peace.

Sometimes I wonder why there is so much heartbreak around…

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