Sunday, December 31, 2017

You win some and you lose some

To call this year a roller coaster of emotions would be an understatement. With everything that has happened, I have come to realize and appreciate the importance of family (online and IRL). Laksh and us, are fortunate in that sense. 

Even before his birth, his grand parents and aunts had started planning trips to the states from India. Birth of a baby is always such a joyous time, and getting months and months to plan is such a blessing (even though most babies do what they want and don't really give a damn about our birth plan). Anyone of knows me would say I am not a very patient person and having to wait 9 whole months (no one tells you this, but its actually 10 calendar months) to see my munchkin is one of the hardest things I had to do, or so I thought.

Planning for your baby, especially your first one can be a fun yet a daunting process. For me, being a type A, instant gratification kinda person, I planned and planned and then planned some more for every scenario that I could think of except the one that actually happened. Life is funny that way. Isn't there a saying that goes something like, If you want to make God laugh, tell him your plans? 


 
With this year coming to an end, my parents have finally been able to make it to US to see my baby. Mom had come briefly back when he was in the NICU so with so many restrictions wasn't really able to spend time with Laksh. My dad wanted a boy to hang out with since my older sister was born 35 years ago and finally after 3 daughters and a grand daughter. here comes my darling Laksh. This picture of my dad and his baby boy is something I am going to hold on forever in my heart, and on the internet 😉.  I am my daddy's girl and this is such a beautiful sight for me, that my heart hurts with joy and gratitude. 

"Surely, two of the most satisfying experiences in life must be those of being a grandchild or a grand parent." 

Donald A Norber
  

Additionally, the end of this year marks saying good bye to his grand mother and aunt who are going back to India after being with Laksh since the time he was born. Farewells can be so hard even though they are temporary. Here are some pictures of Laksh with his aunt (dad's sister) and grand mother (dad's mom).













































Laksh is now waiting to meet his other aunt and uncle, his two older sisters, his fur brother, and his two more mommies. Hopefully soon.
So as we bid adieu to 2017, we also say good byes to some loved ones and welcome others. Until next time.

 Happy new year to everyone! Lots of love from Laksh and all of us. See you next year.



















I absolutely cannot end this year without a special mention to the Murray family. My heart hurts for you and I cannot imagine how you are dealing with the loss of your precious baby. Colton, without ever meeting you, I have fallen in love sweetheart. You will forever be missed. For those who have not heard of him, here is a link to help you get to know what an awesome baby he was. God bless you Colton. 
https://www.facebook.com/ColtonStrongHeartWarrior/?ref=br_rs

Friday, December 29, 2017

Reminiscing...

Dear readers,

When we first found out I was pregnant, it was the start of this year. Now, with the year about to end, I realized how different our lives have become in a few short months. Earlier this year, I had imagined all these changes that would come with our baby being born. How being a mom would be the coolest thing ever. How all my baby would ever need is my husband and me (apart from milk, sleep, and diaper changes of course). How we would be sleep deprived because that is what I have seen parents of new born babies be on TV. But God had different plans.

Being overweight, all our lives, we are told things we won't be able to do. We won't be able to participate in sports, we won't look pretty, we won't be able to wear certain type of clothes, we won't be able to have a baby easily, etc etc. So even before we decided to get pregnant, I started losing weight so the doctors won't give me the same old lecture about how I won't have a smooth pregnancy because I am overweight.I even went to the OBGYN before for a pre-conception check up to make sure everything is okay. That is how scared I was of screwing up or being told I will screw up instead.

When we got pregnant, I was surprised to learn most doctors wont even see me till I am 10 weeks pregnant or more? I was so mad, because the first trimester is when you need the most reassurance as you still don't look pregnant or feel your baby. Morning sickness isn't a sign that everything is okay. So when we finally got to see a doctor, they did not even do an US yet because for that we needed another appointment so it was a while before we got to see our little baby on the screen. It is the best feeling ever. No words can describe how wonderful it is to see his tiny heart beating on the screen and knowing some day soon you will be able to hold him in your arms.

Anyway, first two trimesters of my pregnancy went smoothly. My blood pressure was fine and so was my blood glucose (the two things most doctors had warned me about). Actually, by the end of the second trimester, doctors had started scaring me all over again about how he isn't growing well and how I need to keep counting his kicks to make sure he is doing okay. Anyway, moving past all that, the day my baby was born and I heard his cry, oh my what a feeling. In that moment, I knew my life would forever belong to someone else.

Little did I know, we had a whole different journey in front of us. He needed surgeries and NICU stay before he needed his crib and all the wonderful things we got him. So now we have come to terms with the fact that he would sometimes need doctors and therapists more than he needs us. We need to understand, he would need to see the doctors more often than our friends kids might have to. Sometimes, he would need me to be his advocate along with being his mother. Sometimes, I would have to fight to get him what other kids get freely and easily. But that doesn't matter. What matters is he completes me and I would do anything for my baby boy.

Hope this year was everything you guys hoped for and the coming year even better.





Monday, December 18, 2017

One week to Christmas


Dear readers,

December has always been my favorite time of the year and Christmas my favorite holiday of all. I feel like no matter how stressed out you are, when you see Christmas lights all around you, happiness creeps in. I feel people are more kind and charitable this time of the year, though we should be kind all the time. Christmas for me always equals joy.

 Some of Laksh's first's from the last two months while we are waiting for Christmas to come.

Laksh's first snow fall











First time at shake shack
























First time at one world:


                                                                                                                                                               








First time at the temple (no photography allowed inside)







First time at  the mall








First time with the famous Manhattan skyline


     






First time meeting Santa (preferred sleeping in daddy's arms instead)





Here is a pic of Laksh and daddy, chilling on a Sunday morning ❤





Happy Holidays! Please remember to be kind, especially this holiday season.

Friday, December 15, 2017

Hirschsprung disease : A parent's perspective

The point of today's blog entry is to help create more awareness about Hirschsprung disease. Before my son was born, I had no idea that such a thing even existed. I had heard of down syndrome of course (being a PT, it is part of the training) but Hirschsprung disease was something totally new. For those out there just like me, let me give you a quick intro to it. 

Hirschsprung disease is a congenital condition that affects the large intestine also known as colon which causes problems with passing stool. This condition is a result of missing nerve cells in the muscles of the baby's colon which can be confirmed by performing a rectal biopsy. In other words, its a condition where baby is born without the nerve endings in his/her colon that ensure everything keeps moving along as it is suppose to. As these nerve endings are missing in part of the colon, it prevents stools from passing. It is a life threatening condition if not treated. It is usually picked up in the first few days after birth but sometimes can take a little longer. Treatment usually means surgical intervention and removal of the affected portion of the colon 


Hirschsprung disease occurs in approximately one in 5,000 newborns. Doctors aren't entirely sure why some children get Hirschsprung disease, but they do know it can run in families and affects boys more often than girls. In fact, Hirschsprung disease is about five times more common in males than females. Children with Down syndrome and genetic heart conditions also have an increased risk of Hirschsprung disease. For example, about one in 100 children with Down syndrome also has Hirschsprung disease.  (Statistics taken from https://www.niddk.nih.gov/health-information/digestive-diseases/hirschsprung-disease)



Laksh had emesis 24 hours after birth which was greenish in color. That vomit created a panic of sorts and the pediatrician on duty admitted him into the NICU right away. The hospital where he was born did not have a higher level NICU and he was transferred into a bigger hospital within a few hours where they suspected a few things, one of which was Hirschsprung disease. To diagnose it, a rectal biopsy is performed which was done in a few days after we were admitted in the NICU but the results took a while to come back. When the results came back, he was scheduled for a surgery within the next few days.



For Laksh, we had to undergo a Pull-through Procedure, thankfully without the need of a colostomy pouch. His surgeon did a wonderful job and I would like to specially mention him here, Dr. Jason Fisher. He worked very hard and the surgery that would have taken 3 to 4 hours took over 7 hours ( more colon than what they originally thought was affected) but Dr. Fisher and his team were amazing and so was my son. He is a rock star. This surgery happened when Laksh was exactly 3 weeks old.


So now that I have given you some back ground, here are the 5 things I have learned about Hirschsprung's disease from my son:



  1. Seeing your baby's dirty diaper for the first time can become a moment to cherish and celebrate.
  2. Every diaper change that does not have poop in it can be nerve wrecking and a cause of concern
  3. Measuring you baby's belly becomes a routine of sorts and having pictures of his dirty diaper in your phone fairly normal.
  4. Rectal dilatation; no matter how painful for a parent to perform, helps our babies tremendously. 
  5. And lastly, you won't care if your baby has down syndrome or hirschsprung, all you would remember is how incomplete your life is without him and how you will do anything to see him smile
Here are a few photos of my darling Laksh and the smile I can do anything for.


 





Always remember to appreciate the differences, as the differences are what make us unique. Happy Holidays! 

Thursday, December 7, 2017

Therapy Thursday

Laksh currently has physical therapy twice a week and his PT has recommended we start him with some OT as well. We are in the process of getting that done. There is just way too much paperwork involved for everything and also it is a bit time consuming. Anyway, whatever he needs.

Laksh has been getting therapy for a couple of weeks now, and my boy is doing his best. I try to get him to do exercises on the day he does not have therapy but working full time and spending way too much time traveling to and from work makes it difficult (disadvantages of working in NYC, everything is just too damn far) to get home before his bedtime.

Day one of therapy:

Laksh and mamma waiting for PT to get home


Starting his session with some range of motion exercise






He then moves on to some massage for his back muscles to improve his tone while weight bearing on his arms.

                                                                                                                                                                                           


This is something new that his PT added which highlights his better head control while reinforcing and continuing training his neck muscles to further improve head control




This is just Laksh chilling on his play mat after therapy








Day two of therapy:


Some range of motion exercises for his legs. lease note: both upper and lower limb range of motion exercises are done each session followed by the therapy ball. Have shown only few of the exercises so it does not get too long and repetitive.


This is tummy time along with some lower extremity exercises. Towards the end you can see Laksh look right at the camera and complain to his daddy about how hard we are making him work.






Here he is chilling on his play mat but in a new style where he is now kicking the objects instead of his usual attempts to punch or grip them






Laksh got bored of all the videos his mamma kept taking so he gave me this look.




Hope all these videos are helping you guys. Please feel free to ask me any questions in the comment section. Follow us and spread the word. Thank you guys. Have a nice weekend. 

Monday, December 4, 2017

Milestone Monday

Dear readers,



It is time for our very first #milestonemonday. I am feeling like such a proud mamma while writing this, my baby is now holding his own bottle (for the most part with occasional help) while drinking milk. 
Here is a picture from this morning while drinking milk in his grandma's lap. ❤



Another milestone that Laksh has mastered is the art of smiling and making the people around him weak in their knees. Here are some pictures to show that;





Another interesting thing he seems to have started doing is, looking like this emoticon : 🙏





Or rocking "dabbing" in his sleep

         
Example of dabbing for those who are unaware of what it is

He has also started removing his feet from the sides of his crib


And, last but not the least, he is able to hold his head up for a good 15 seconds or more




These are a few of his achievements from the last couple of weeks. We will keep you updated about him and have made this GIF as a thank you from Laksh and all of us. Keep supporting us the way you guys have. It is appreciated and needed. Always be kind dear readers. 





PS: A very happy 37th wedding anniversary to Laksh's Nana and Nani (grandparents)


Saturday, December 2, 2017

A Letter Filled with Love

Hi my cute little bundle of love...


You came in my life when I found out you were in your mummy’s tummy. Since that day, all I have wanted is to see your cute little face. I have wanted to know what you look like, or rather who you look like. Cauz even though it was your parents who took the pain, literally, of giving birth to you, I still wanted to take all the credit and say you look like me. But you don’t. You are way cuter 😍 (When you grow up and get to know me, you’ll understand why this is a huge compliment coming from me.) And trust me I am not calling you cute just because I love you.



I love you is an understatement to describe how I feel about you. I am a very loving person, you know. And very expressive too. I have loved many people in my life... but never did I know the true extent of my love until I became a parent. Though your birth marked the third time, it still felt special and different. I love you (and your brother and your sister) in a way that I cannot explain. 


I am looking forward to the day I will hold you in my arms. I wanna kiss your munchkin little face 😘😘😘 I wanna hug you so tight that you never forget what my presence feels like. I wanna talk to you for hours and listen to you for days. I just can't wait anymore. I will see you soon meri jaan.



You know this journey of ours hasn't been really smooth. First, it was mummy's difficult pregnancy, then you being in the hospital for two months, and amidst that, you being diagnosed with down syndrome. I still remember the day I found out about your extra chromosome, I remember the time.. the day.. I remember where I was.. what I was doing.. Cauz that moment changed my life. What I did next was a reaction that anyone would have. I read and read as much about down syndrome as I could, cauz though I was briefly aware of it, I wanted to dig deeper. 


But the sad part was, all I could read about was the negative things. Things that can go wrong, things that you might not be able to do.. and dreams that we must let go of. And then I cried. And for that my baby, I want to apologize. Then, I read blog articles and many stories on social media, that changed my view. I realized that this extra chromosome can certainly bring challenges, but it can also bring pleasant surprises.Thank you to all those parents who share the stories of their children and give families like ours hope. Thank you for showing us the bright side. Apart from these stories, it was your smile my Laksh that gave me sight to see the positive side of this. That smile is something that I have never seen before. And I don’t say this only because you are my son. I say this because when you smile, you make everyone around you melt.  💕



Here’s a picture to prove my claim. 



I am glad you aren’t like anyone else, cauz that would make you common. But you my love, are rare, just like your Naanu maa 😉


Friday, December 1, 2017

And then I was 4 months old


Dear readers,

Today my darling baby turned 4 months old. In fact I started writing this blog exactly at his time of birth but by the time I would post it, it would be late evening. I plan to have his photo shoot once I go home from work and want to add that to this blog so that will cause a little bit of delay. Anyway, now that this is out of the way, let me start telling you all about how his week went and how proud I am to be his mom. Also, on the occasion of his birth day of sorts, I want to announce that we are doing a little something special and would have guest bloggers writing here over the next couple of weeks.


So Laksh is 4 months old and these 4 months have been the best and the scariest 4 months of my life. The intense love that I feel for my baby coupled with this protective instinct that I have for him is empowering and weakening at the same time. I remember reading, "Making the decision to have a child -- it's momentous. It is to decide forever to have your heart go walking around outside your body." -- Elizabeth Stone and wondering how can that be true. But I have been feeling like that for the last 4 months and it has been exhilarating.



Laksh has been successfully rolling from side to side, but is still to complete a roll. I am not worried as I know he is doing the best that he can and is doing amazingly well. Based now this I came up with an idea, I am going to start something that I would like to call "Milestone Monday" for him. One Monday in a month, I would update about what new milestones Laksh has achieved and would love to know where other parents are. 



For now, let me show you guys some highlights of his week:




Waiting for Mommy and Daddy to get home



When mommy says I'm cool, I am cool..



The day I decided to dress up as a teddy bear 




During PT session, redefining "killer smile"




Chilling in daddy's arms



Charming my aunts with flair..



And then I was 4 months old



Hope the last month of this year fills your lives with love and happiness. Happy December!

Let's bust some myths for October is Down syndrome awareness month

Dear readers, October is Down syndrome awareness month and in honor of Laksh and other amazing people just like him, we are having a cel...