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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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Updates and adios 2012…

Wow it has nearly been two months since I updated anything. Time sure does fly when you learn to manage the new lifestyle life has thrown at you.

Let me rewind and try to do a recap by months-

November: The last time I wrote I did write about the Synagis vaccine. Turns out that if your doctor calls the medical doctor on the team that approves the vaccine it will get approved. Well it was much easier said than done. I spent two whole days trying to track this number down, no one would give it to me. Finally we did it. Atiksh’s doctors were so nice and so co-operative that we got 5 shots approved. Now it was supposed to be 1,600 a pop for 5 months and I thought well if insurance does not pay, maybe we will pay out of pocket. Wells turns out he needs double the dose, about 3k a month-Thank God insurance approved. Even with this we pay 20% and it is about 600 a month.  Then my in-laws went to Boston for about 2 weeks- it was my test period.

I had also started work from home. Learning to manage household and balancing work was a bit hard. I missed going to work quite a bit.

November also was the month Atiksh fell sick for the first time. He caught this nasty cold, just before my in-laws left to Boston and he lost his voice. We have a very low threshold on when to take him to the doctor. I was scared out of my mind, started having visions of him in the hospital…but we survived. It was a nasty cold and ear infection. A round of antibiotics and he was back on track. I also realized that I am never going to feel safe with him and it will take a while.

December: Atiksh turned 4 months, he rolled over from tummy to back couple of times. It also marked 1 year since I first learnt I was pregnant. Santa came and brought a truckload of gifts for the boys, especially for the adorable big brother who has been such a good boy and we all enjoyed quite time at home. Here is the picture proof…

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In short, 2012 was quite a year. In all fairness I would say I spent more than half the year very happy. However April-September were the most grueling months I have ever faced. 2012 made me very, very strong but it has also made me very, very weak. I now have a fear in me that we all are mortal and I need to enjoy every single day of my life and worrying helps no one. 2012 also made me realize the power of good people, people rooting for you and that nice people do exist.  I have learnt the sheer miracles that the medical profession can perform, and I have one sleeping on me while I type this.  No one should ever have to go through a pregnancy not knowing if their baby is going to make it, no one should give birth and wait on pins and needles for 48 hours not knowing if their baby is going to make it and yet that is what this year threw at us…we made it …whole. I still have nightmares…and every night as I go to bed with Atiksh next to me I think of all those nights he spent alone…away from us and I shed a tear. It reminds me of what Avy asked us when we told him Atiksh was not coming home the same day as me “But a baby should sleep next to mommy”…I wake up dreaming he is back in the NICU…and I am really hoping that all this would stop on 2013.

Here to a peaceful and healthy 2013 …less nightmares and more peaceful nights!!!!

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Lucky number 8!

The number 8 has played such an important role in Atiksh’s life that I thought it will be fun to recap it:

August 18th- He was born, my sweet charming little angel.

August 28th- His first major surgery to repair his Congenital Diaphragmatic Hernia

September 8th- The first time he took a breath on his own without any form of breathing aid or oxygen support and it was big brother’s birthday

September 18th- He completely stopped throwing up his feeds.

September 28th- He came home after 41 days in the NICU. He came home to be with his family.

October 8th- We got our new Honda Pilot. We were going to buy this car in April of this in anticipation of the new kid. We put a stop to it once we learned of his diagnosis, as only 50% of parents get to take their babies home and we were not sure where we fell. On this date we made it right again, by getting the car.

October 18th- He turned two months old and he had his surgery follow up and it all was well.

October 28th- I finally could add milk back to my diet as he was no longer intolerant to milk.

November 8th- Today is his 41st day at home, which means from today he would have spent more time at home than in the hospital. From today the hospital stay will start to become a small part of his life. In addition, we finally got word that his Synagis vaccine for RSV got approved today and will be shipped out.

As you can see 8 sure is one lucky number!!!!

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Happy Haloween

It was all about being home together by Halloween, that was the hope that kept me going. It turned out much better than that.

So here I present the Mummy and the Black Ghoul…

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Happy one month!

Happy one month at home dear Atiksh. It has been nothing but wonderful. Just this week has been stressful with Avy being sick- cold, cough, ear infection…but nevertheless, just what I wanted with all my boys under one roof.

I am not sure if I have mentioned before but about 5-10% of children with CDH develop hearing loss. No one is rue what causes it, but it happens. So Atiksh will be getting periodic hearing exams. We had one this week. I was so nervous, though I fully believed he can hear. He turns when there is a loud noise, he calms down for music or us talking, but it is still nerve racking. In his usualy fashion, he did not pass in his left ear on the first try and they thought it might have been because he was a bit noisy. The babies have to be quiet for the test, so I ended up feeding him so that they can do it. At the end of the day he passed and we have to go back when he is about a year old or if I feel he is developing hearing loss. Another part of this journey that we have to keep an eye out for.

We also managed to take a small drive to see the beautiful fall colors this year. Now we are going into deep hibernation mode for the next 5 months so managed to take in some of the nature. We are waiting to hear back from the insurance company regarding his RSV shots, I do hope it gets approved. It is a long, long winter ahead and hopefully this cuteypie will keep us going.

I am ready for the five long months!!!!!!!

 

 

 

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Saying bye is hard!

My mom left to India today. I miss her.She has been with us for almost 10 months. She came in Jan when I was very sick with nausea and vomiting and has stayed with us every step of the way through this arduous journey we went on. She was determined to go back only after bringing the little one safely home…and today she left right after doing just that.

She was Avy’s rock through all this, and did everything for him and he is also going to miss his dear Rajee paati. I do hope she gets to spend some peaceful time back at home, India, with her other grandson.

We love you and saying thanks seems just not enough for everything you have done for us.

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A special two month birthday!

We celebrated Atiksh’s two month birthday in two special ways- We had his traditional Indian naming ceremony (Punyavachanam) at home performed by Ajit’s dad and we took a special little trip to Charlottesville, where it all began, to see Dr. Rodgers for his surgery follow up appointment.

We named him ‘Rangarajan’ after my dad as his official Indian name, and of course Atiksh Krishna Ajit. I do hope that he is a spirited fighter just like my dad. We had a small function at home, just us and it was beautiful.  Atiksh was awake and smiling away!

 

 

 

 

 

 

 

Ajit, Atiksh and I took a trip to see Dr. Rodgers. Atiksh slept all the way. They got an Xray of him and then we met the doctor. I am assuming Atiksh was either crying or because he had just had milk there was a lot of air in his stomach. Dr. Rodgers asked us not to worry. I mentioned that Atiksh coughs in the mornings as soon as he wakes up and the Dr feels that it maybe some backed up saliva and asked us just to keep an eye. Atiksh is low on the weight scale, in the 15th percentile, but I will take it. This is a big deal with CDH kids and I am happy he is on the charts and gaining weight.We go back in three months to see him again. For now he is doing good. Here is the picture with the man who made it possible for us to have Atiksh!!!!!!!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In other news, yesterday Atiksh had an appointment with Early Intervention people. They came and evaluated him and called him ‘developmentally appropriate’ and he is showing some glimpses of 6 months behavior with his emotional side. No surprises, Avy was the same way too.

So all the same a very nice two months buddy, keep going!!!!!!!!!!!!