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…

 

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.

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

Love

Fresh from a bath

All ready to go out

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:

 

 

 

 

 

 

 

 

 

 

 

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:

 

 

 

 

 

 

 

 

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.

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…

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…

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!!!!

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!!!!