There is no one like Samaira

This is not coming from an overly mushy-gushy-coochy-coo kind of a mom, which (shockingly) I totally am. This is coming more from a place where a first time mom is trying to figure out the uniqueness and quirks of her new born child. There are so many times when I wonder if what I am seeing with Samaira is common amongst all new born kids, or is it because she was born 5 weeks early, or is it because she has down syndrome. Be it her feeding, pooping, weight gain, height, breathing, rashes, snorting, squinting, physical characteristics, cry, smile, anything. This is also because she is my first child. This is also because I haven’t been so close to another new born in my life. I am really close and attached to my two nieces, but somehow I wasn’t really tracking their milestones. So I, pretty much, have no one to compare her with, and no previous experience or bias to base things against. I have a super vague idea of when kids (without down syndrome) start lifting their heads, sitting, crawling, walking, talking, etc. But I have also seen a wide variation even within that standard range. That is why there is no one like Samaira, and no one I can compare her with. And in a way, I am glad this is how it is.

A lot of kids who have down syndrome don’t show all the features, signs and traits right away. When I look at Samaira, I don’t see down syndrome in her face. Even though she has a lot of those features, they are relatively subtle at this point, at least for the untrained eye. I spend a good chunk of my day youtubing kids and adults with down syndrome – hearing and reading their stories. I am reading about what they can and cannot do, what they look like, how they talk, how they walk, what they feel, what they need, and so on. Doing so keeps it real for me, yet it makes me very vulnerable. It reminds me that I may not see a lot of those traits in her right away, but they will slowly and gradually reveal themselves. I will have time to grow with Samaira as those traits start showing. But keeping that perspective right now breaks my heart. I am just hoping it makes me stronger, strong enough to embrace everything that is about to come, strong enough to be Samaira’s strength. I am scared, a lot of times. I worry about the unknowns – how severe will her down syndrome be, will she able to walk fine, what kind of speech issues will she have, will she be able to communicate fine, will she find good friends & teachers, will she lead a happy & healthy life, and so on. And I worry about the knowns – whatever I do know.

Based on all my reading so far – parents can’t stop raving about what a blessing their child with down syndrome has been. How they are better people because of that child. How that child brings in so much happiness in their lives. And almost all the parents whose babies are slightly older (a year, and older) say “If we knew then what we know now, we wouldn’t have felt the sadness on receiving the diagnosis, we wouldn’t have felt the loss of a dream, we wouldn’t have felt insecure about our baby’s future, career & life. We wouldn’t change a thing about her/him. ” Honestly, I don’t know what they are talking about. This diagnosis is heart breaking. And it will be heart breaking till the last day of my life. It is not heart breaking for what my life will be. That is not even the point. But it is heart breaking for the challenges that Samaira will have to face, above and beyond all other kids her age. If there is one thing I could change about the past, it would be those 10 minutes when the nurse told us about Samaira's karyotype test order for down syndrome. I sometimes wonder if this feeling will prevent me from accepting Samaira 100%. My only and ultimate remedy for all this negativity is Samaira. I look at her and all I feel is love for her. I just hope fear and apprehension don’t take over some day, especially as she gets older and things become more challenging. I hope not. And in my heart, I know not.

I don’t believe in God any more (definitely not) or any less because of Samaira’s diagnosis. I don’t feel the need to pray more for things or my feelings to be ok. I am getting my strength from Samaira & Siddharth, and our families, relatives & friends - who care for and love her unconditionally. At the end of the day it was a matter of chance, with a certain probability attached to it. My emotional reaction was “Why her?”, but my statistical reaction was “Why not? Even if there was a <1% probability of it happening, mathematically it is possible to be that 1%. And that’s what happened”. Stupid probability.

I don’t think praying to God any more will change or heal or fix anything. I do believe in 100% dedication to Samaira. I do believe in attempting to raise Samaira to be a strong person, so she can take on the world and life, come what may. I hope for her to not be a victim of bullying or teasing. And even if she is, then hope that she has the strength and the courage to fight back and put those meanies in their place. I hope for her to embrace her life with full enthusiasm. I hope for her to be a brave and bold girl, someone who speaks her mind, stands up for what she feels is right (even though it may be the wrong thing) and has the heart to love. I hope for her to make lots of friends, genuine ones, people she can share her ups and downs with. I hope for her to be happy in life. I hope for her to not be hurt. Ever. I hope to be her best friend. I hope to love and cherish her.

 

I typed this entire post while she was sleeping on my chest. It is the best feeling ever. There truly is no one like my baby!

In this seed is an apple you can't yet see

Came across this somewhere and wanted to note it down....this apple will reveal herself, a little bit every day....

An update

The morning of 16th, when I had written the previous blog post, I was feeding Samaira at 5am when the doctor showed up for his routine visit and mentioned we could be discharged in a day or two. That got us super thrilled and we figured we’d be home soon. At 10am that same day when the previous doctor’s shift got over and another doctor showed up, we got an even more exciting news. He said that Samaira has done really well in her feeding over the last 24 hours, and we could go home right away. Shock would be an understatement with regards to what we started feeling at that point. In fact, we were in denial. Siddhu responded to the doctor “I don’t think we are ready to go home, yet.” Gradually though, we knew it was for real. We decided to hurry up the discharge process just because it was supposed to snow heavily in the next 2-3 hours, and if we didn’t leave for home in the next couple of hours, we would have to stay at the hospital for a much longer time. So miraculously, we were home by 3pm on the 16th, one day before Samaira’s first month birthday.

We celebrated her first month birthday on the 17th!

Samaira also had her first snow fun once we got home.

She will have a lot of firsts and I can’t wait to find out what the next one will be!

Samaira’s one month birthday tomorrow

My baby would have been 39 weeks 1 day old today, if she was still in my womb. Now that she is out and about, tomorrow will mark her special 1 month anniversary. She is still hosting us in her private NICU room but I am hopeful that we will go home sooner than later now. In some ways this past month feels like a day, and in other ways it feels like ages. I am not really sure when which feeling triggers, it probably depends on my mood.

Here is a summary of some of the major happenings, learnings and my feelings over the past month:

• I went into labor 5ish weeks before my due date and welcomed our Samaira on December 17th at 10:50pm.
• I was super duper thankful for the fact that Siddharth was with me through the entire process of labor, birth, and everything else that followed. There was a possibility of Siddharth not being in Seattle during these dates due to some potential travel, but he refused to leave insisting he wanted to be with me towards the end of my pregnancy. I am glad for that as I can’t imagine going through a single second of this last month without him.
• A few minutes before Samaira was about to enter this world, in the middle of me pushing, I had some random thoughts about forgiving all the people who have knowingly or unknowingly hurt me, and let go of (almost) all the jealousy I may have had. Don’t ask me why I started thinking about it in the middle of something so painful. But at that point, I actually thought Samaira’s birth will somehow make me a better person.
• Shortly after Samaira’s birth, she was diagnosed with down syndrome. Siddharth and I are going through the process of receiving, reacting to, accepting and dealing with this diagnosis. We are not fully there yet, but are taking one day at a time. Now that she is growing up, one day at a time, there are moments and minutes when I forget about down syndrome and just experience her for who she is. She is nothing but delight and is full of surprises.
• We have joined a couple of local support groups in this area and have already received a lot of helpful information from other parents who are in the same boat as us. We have also come across other blogs of parents with kids who have down syndrome. It is pretty uncanny how similar the first few days for most parents are – similar emotions, similar journey, similar responses, and very similar next steps.
• We have been staying with Samaira in the NICU for 4 weeks now and before long, we will be home.
• We have realized the depth of our relationships and friendships as we have received unlimited support and love from our family, friends and co-workers. Siddharth and I often tell each other these days “we must have done something right to have such fantastic people in our lives.”
• People often ask me how I spend all my time at the hospital and if I get bored. I spend about 30% of my day feeding or pumping, another 15% holding or looking at Samaira, about 15% eating, about 20% sleeping (which is pretty luxurious because I am in the NICU and have constant help from the nurses), and the remaining time in miscellaneous things. So, I don’t really get bored. But I am at a point now where I am itching to get home.
• Siddharth and I went on a date to Kirkland down town sometime last week. We have also managed to watch a couple of movies on our laptop – thanks to Netflix.
• Samaira really does have the most peaceful and divine face I have ever seen!
• At just one month old, I am trying to read Samaira. It is not always as easy. So far I think she does what she feels is right – like entering the world when she thought was the right time for her, eating when she wants, pooping when she wants and crying when she wants. I also think that she is kind of funny – the only reason I say that is because she often smiles, most of the times it is in her sleep. So I am guessing she must have cracked some joke in her head and must be laughing at her own jokes. I wonder what kind of things would make her laugh – and I am pretty confident they are milk, poop or fart related.
• This is for the first time ever (at least that I can remember) that I wish I had more than two hands. For example, it will come in really handy when I am feeding her as I try to juggle her, myself, her clothes, etc.
• I have realized how rewarding feed and poop related conversations can be. On most days, the highlight and lowlight of my entire day revolves around how much Samaira ate and how much she pooped.
• My Mom has been pampering me with the most rich and awesome high calorie food for the last few weeks. That routine will last for at least a few more weeks before I can resume the regular eating routine.
• I am a planner at heart. I like to plan things. I like to plan my days, weeks, future and life in general. The one thing I have thoroughly realized, but not fully learnt, over the last month is that as much as I obsess about it, I can’t plan for everything.

I am eternally thankful that I have Samaira and Siddharth in my life!

It takes a village to raise a child…

…and Samaira’s birth made us realize how lucky we are to have that village around us.

Samaira has a mind of her own, and she decided that she did not want to wait for her due date to arrive. Instead, she showed up a little over 5 weeks before her due date, when no one including the doctor was expecting her. My Mom was planning to come sometime in January and she had to change her travel plans to fit with Samaira’s plans. My brother was the first family member to show up on the morning of December 19th, and my Mom came a week later. My Dad wasn’t planning to come until April, but he showed up with my Mom and surprised me – he just wanted to let me know that he is there for me :). Samaira's fai, kaka and kaki showed up soon after.

If you are an Indian or know one very closely, you will have a little bit of an idea about the kind of food routine I am expected to follow right after delivery. Essentially there are a few things I most definitely should eat – such as *a lot of* ghee (clarified butter), fenugreek, cracked wheat, certain kinds of herbs, almost all non-fried yummy things that could make me fat :), etc., and other things I definitely should avoid – such as cauliflower, cabbage, rice, any kind of spices, etc. A handful of our friends (you know who you are) and family made me feel like my Mom was around me from day 1 of Samaira’s birth. They took care of all my super yummy and delicious meals, while strictly sticking to the do’s and the don’ts of post-pregnancy meals. They learnt it all for me and Samaira. We have friends who visited us every single day for the first several days of our NICU stay, and sometimes twice a day. We have friends who made sure I got plenty of rich sweets several times a week as it is supposed to help me with my milk supply. We have friends who were far far away, yet so close that we could feel their support and presence like they were with us. We have friends who were willing to just be at the hospital for the entire day, without involving us, just in case we would need their help. We have relatives who live in Seattle and they showered Samaira and me with gifts, food, sweets, emails, information and visits. Every single one of these friends and relatives offered unlimited help and support to us. And through this all, we have our families with us – in Seattle and far away – as our constant support system. I can tell that all of these family members, relatives and friends love Samaira unconditionally. I can’t help but feel blessed to have such a solid support system around us.

A lot of people surprised us with their creative talents and thoughtfulness for Samaira. Samaira received her first ever friendship band that her S fai (Aunt) made for her on the new year’s eve. Samaira's fai absolutely adores her, so much so, that she wants to eat her up sometimes :). She will be her designated baby sitter once we want to resume our date nights.

Samaira received an awesome pink colored woolen hat that her D Bhai Ji (Uncle) knitted for her in just two days! Without any bias I can say that Samaira looks like a doll in this hat :).

Samaira also received this beautiful hand knitted woolen blanket from her A Grand Aunt.

We are still staying at the hospital and continue to receive help from our friends & relatives around us. I want to thank these folks for their unconditional love and their never ending support, but I don't think any words will do justice to how thankful we really are.

While we realize (or maybe we don't, yet) that we have quite a bit journey ahead of us, we know that sooner or later we will be able to conquer it – because of this wonderful village and its love for Samaira!

Italy & Holland

One of our close relatives, A & D, got a print out of an amazing write-up for us to read shortly after Samaira was born. I have read it over and over again, just to feel the relief that I was not alone in feeling the way I did. Siddhu and I sort of started talking in these terms after reading it. I feel bad about feeling this way because it talks about the feelings of disappointment, shock and disbelief that parents go through on learning about their child's disability. As bad as I feel about it though, I have to admit that every single word written here is true - something that the two of us, and all the parents in a similar situation go through. I guess it is a part of the process.

I figured it is worth (re)documenting this write-up. So here it is:

WELCOME TO HOLLAND

©1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this......

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

It is obviously a very parents-centric view of this journey. At some point, very very soon, though - I will start thinking in terms of Samaira's journey - her joy, her satisfaction, her pain, her struggles, her failures, her dreams, her wishes, her success, her achievements, her victory, her pride, her life.

My Samaira is here!!

17th December 2011. 34 weeks 5 days into my pregnancy (out of a total of 40 weeks). It was a routine Saturday for us. We had watched Sherlock Holmes the previous night so decided to treat ourselves with a few extra hours of sleep on Saturday morning. We lazily got up at 11 and got ready. The plan was to meet E & A, a couple of my closest friends from the business school, for brunch at Preservation Kitchen. It was good to catch up with them after several months. I had a super hearty meal of a sandwich and fries. I was so stuffed after this that I wanted to go out for a walk once we got home. We made a grocery store stop on our way home. We were continuing to do incremental shopping for our girl – this time it was Aveeno baby body wash and fragrance free lotion. We lazily got home and decided to laze around for a bit longer, so conveniently skipped my walk plan. Siddhu started to fill out the paper work for cord blood banking and I started to fill out our baby’s scrap book.

3:45pm. In the middle of all this laziness I suddenly felt something and I told Siddhu I was leaking, and I didn’t think I was controlling it. I decided to check and it definitely looked like my water broke, or something. My first reaction was panic because she wasn’t even full term (37 weeks) yet and wasn’t really ready to enter this world. Siddhu called the FMC (Family Maternity Center) at Evergreen and they asked us a bunch of questions before saying come on over and we will check to see what’s going on. Although the FMC nurse hadn’t eliminated the possibility of my water breaking, she also mentioned some other possibilities that did not involve my water breaking. As much as I was praying for those other possibilities, I knew it was time. In the next 5-10 minutes Siddhu readied the bag to take to the hospital and he did an excellent job of anticipating things I would need if I were to stay there for a few days. As we were about to get into the car, I hugged Siddhu and told him “…but she is not ready yet” and he said “don’t worry beta, everything will be fine…” We were out of the home by 4:15 or so.

The next hour and half were spent in the nurse trying to figure out if my water had in fact broken as she was trying to test for the presence of amniotic fluid. Don’t ask me why it takes so long, but there were at least three different tests, each more precise than the other, that the nurse planned to do to confirm if it was amniotic fluid or something else. The doctor did mention to me that they were hoping nothing happens for the next 24-48 hours so I could complete my 35th week, at least.

5:30pm. The nurse hadn’t yet finished the third test to check for amniotic fluid, but my labor pain had started by this time. Within the next 10-15 minutes, I went from zero labor/contractions to a full blown active labor and was shifted from the triage room to a proper room where I could potentially deliver. I had a back labor and it hurt a lot. In the next few hours I went from 1cm to 10 cm dilation and our baby was ready. My existential support through all this was Siddhu and I am so so so so so glad that he was there with me in the room to support me and sometimes annoy me as I was going through the labor process.

10:50pm. It was the happiest hour of our lives. Our baby was born. At 5pounds and 17 inches, she was a preemie, yet a healthy baby. It was magical. I was crying. I was happy. I was emotional. And then I saw her. That was the most beautiful new born face I had ever seen. I looked at her and she is so beautiful. I couldn’t believe it actually happened. I couldn’t believe my eyes, ears, touch or any other sensation at that point. Siddhu and I were happy. We were satisfied. I was exhausted. Since she was born more than 5 weeks before her due date, she had to be admitted to NICU so they could monitor her for vitals and everything else they have to do. I couldn’t sleep at all that night. I was focused on trying to relax my tense muscles after the labor. We finally decided to call our baby girl Samaira. Samaira was here. All that wait, all that preparation, all that thought – it was over and she blessed us by entering our lives. She has this absolutely divine and peaceful look on her face. Every time I looked at her, I felt peaceful. I wasn’t discharged from the hospital yet. They kept me in the hospital for a total of 3 days to check for my WBC count and iron level. Samaira was going to be in the hospital for much longer depending on how she would hold up in the real world, outside my womb.

19th December 2011. 9am. We were in the NICU with Samaira when then nurse told us that the doctor had ordered a down syndrome karyotype test based on their analysis of Samaira’s physical characteristics. That statement sounded totally unreal to me. Siddhu told the nurse that we had done screening during our pregnancy, which had turned out negative. She mentioned that a negative screening still leaves a a chance that the child could have down syndrome. In the next 10 minutes or so Siddhu did some of his own reading to check for the physical characteristics that could signify down syndrome. There were about 15 or so physical traits listed on the site, and the presence of any 6 or more such traits in an infant is enough for the doctors to believe that a child could have down syndrome. When Siddhu read the list and looked at Samaira, he knew she has down syndrome. I saw that look in his face, and then I knew it too. These last 10 minutes changed everything for us, or at least the perception of it. We knew that the karyotype testing was a mere formality. A neo natal specialist came and spoke to us and confirmed the news with a >90% probability, which in his head was more like a 100% probability anyway.

The next few minutes, hours and days were a total emotional turmoil for Siddhu and me. There were lots of tears and lots of emotions. Siddharth and I reacted somewhat differently to this. He was more expressive in his emotions, which is very atypical of him. I was secretly feeling a little bit relieved that he wasn’t holding his emotions to himself and was letting them out. I on the other hand was more suppressive about what I was feeling. I did cry. But I didn’t say much. I don’t know why. I guess I still kept going back to how unreal those 10 minutes had felt when the nurse told us about the karyotype test order and when Siddhu read and confirmed Samaira has down syndrome. I have played those 10 minutes over and over in my head. I have played with the thought that if those 10 minutes hadn’t happened, we would have walked home with a Samaira who wasn't diagnosed with down syndrome. It is unbelievably hard to describe the world of emotions that the two of us have gone through in the last few days. And we continue to go through those every single day. We (including Samaira) will probably go through a world of such emotions for the rest of our lives. The thing that gets us through every single time though – is our baby Samaira. I look at her and she continues to be the most divine and peaceful face I have ever seen. I fall in love with her every single time I see her. I can’t stop staring at her. I can’t stop kissing her. I can’t stop wanting to hold her. I can’t stop wanting to be there for her, for the rest of our lives. She is the best gift we have ever received and is our strength. She is my baby. The one I had always dreamt of while I was pregnant, and before.

None of this lessens the pain of the situation. But it gives us the strength to walk again.

2nd January 2012. She is 2 weeks 2 days old today. The last 16 days have gone in making sure Samaira is healthy. She has to get through some basic preemie challenges such as being able to regulate her temperature, breathe, eat, etc. One by one she has overcome most of those hurdles and is now in a crib as opposed to an incubator. She can regulate her body temperature, has gotten rid of her jaundice, is beginning to put on some weight, and is continuing to grow her strength. Her biggest hurdle is going to be feeding. She has an orange tube in her nose that goes into her stomach. That is how Samaira is getting all her nutrition requirements currently. Since she is a preemie baby who has down syndrome, she has a low muscle tone and does not have enough strength to suck on my breast or bottle for long enough. For Samaira to come home, she needs to be able to bottle or breast feed herself for the most part. Doctor’s don’t know how long it would take. But a safe assumption is her original due date, which is January 23rd, or maybe longer. While I was discharged from the hospital on the 3rd day, Siddhu and I have been staying with Samaira in her NICU room. I feel lucky to have Siddharth as my pillar of strength, can't imagine it any other way. Samaira is growing stronger each day and that’s progress in the right direction.

I can’t wait to come home with Samaira. I can’t wait to spend all my time with her, play with her, learn with her, share with her, grow with her, and just be with her. She is my baby.

I love her. My Samaira is here!!