Junior comes and hugs me, “I love you Mommy”. My heart melts and I hug him tight . Looking into his eyes, I ask him, how much do you love Mommy? He enthusiastically spreads his arms, and this time he adds, “I love you Mommy because …”, I encourage him to complete his sentence, Yes sweetheart you love Mommy because ? My little boy runs away adding .. “Because you shoo the bugs away”!!!
This Thanksgiving, I am thankful for many things. And the fact that I have so much to be Thankful for makes me feel blessed. So here I go, I am Thankful for the boys and D. They make his place home, doing the things they do.
I am thankful that the boys are now catching up and their delays are slowly disappearing. One thing I am extremely Thankful for is that I have found a great daycare/preschool. After many changes, I finally found the place which suits us the best. The teachers are awesome, and the boys are happy and comfortable there. After the boys aged out of the Early Intervention Program I was extremely worried. I was not sure if I should send them to the special pre-school program, or keep them in the school that they were already going to. They were definitely behind their classmates in many ways. I just took the leap of faith and decided to go with my gut to not change their school. It was one of those decisions which could have gone either way. The fact that BB does not take change very well was one of the key factors. He got settled in this school after a lot of effort, a new school would throw everything off and we would need to start all over again. I did not want BB to go through that again. Plus the fact that I was told that they will not qualify added strength to my decision.
The teachers tried their best, I spoke up whenever I had any concerns and the centre director was most accommodating to all our requests. She went above and beyond to help the boys catch up. Junior had issues with feeding, and slowly and steadily they worked on encouraging him to chew. And he did cooperate. Today he eats almost everything. The other day, the centre director said how amazed she was seeing Junior eat a whole slice of a pizza. It did take a lot of time and patience to reach where we are, but what matters is that we are here. The boys started using words and then making sentences. It was an amazing journey, to see them bloom. It is tough to find good teachers, and I am blessed to have two of them who make an awesome team. I am extremely Thankful for Miss. J and Miss. M. The boys will grow up and go places, but this is where their journey started. I hope they remember these two awesome ladies who helped them get started. It matters, and it matters the most.
Today is Prematurity Awareness Day. I am not sure how many people are really aware of the fact that in the United States itself, 1 in 8 babies are born prematurely. Worldwide 13 million babies are born too soon. That is the official record. Does anyone know about remote villages in third world countries where mothers give birth to premature babies who have no support or facility to help these babies live? 1 million babies die every year because of premature birth.
My babies were born 13 week before their due date, too early and too small. They survived because they got the right medical support at the right time. They did not know how to breathe, the basic necessity to live. They were on vent support for more than a month. Before they were born I had no idea what a NICU is. Today, I know the kind of research that goes in, helping these babies live. We were fortunate that our babies were born here and got the right help at the right time. Premature birth comes with its own set of complexities. Babies born too early and too small, run the risk of having neurological disabilities, hearing and eye problems, lung issues, learning disabilities and much more. But fortunately, a lot of research is being done to try and avoid these as much as possible.
My only prayer is that, one day no baby is born before term, that no mother ever loses her baby to premature birth.
I see a lot of campaign going in for Cancer awareness and Autism. But I rarely see something in media both Television and print, about Prematurity. I hope that there is more support for this cause.
Today, if BB and Junior are here with us, doing what they are doing, it is ONLY because of technology, a great team of doctors and nurses and an insane amount of prayers. I hope that someday these researches reach every part of the world, and every baby is born full term. I hope that one day, every hospital has a NICU.
Here is something a friend of mine posted on her Facebook wall, sums up our feelings during those days very well:
When I first saw you, kid, you were tiny and thin
And slimy and red and your head was mushed in.
I said to your mother, “He looks kind of sloppy,
And two pounds nine ounces ain’t big for a crappie.”
But something about you, the look in your eyes,
Said you fully intended to grow to full size.
They slapped your backside and you let out a cry,
And I said, “We will keep him, at least we shall try.”
Some babies are born in nine months, by the clock.
Some babies are born, and they sit up and talk.
Some babies are born, and no doctor is there.
But some babies come in on a wing and a prayer.
Poor little fetus as big as your hand.
Poor little fish thrown up on dry land.
Who came in mid-May though he had till July,
Too small to live and to precious to die.
They shipped you downstairs to the big Neonatal
Intensive Care Unit’s computerized cradle.
And attached you to wires and stuck you with tubes
Monitored closely by digital cubes.
And thanks to the latest neonatal therapeussis
And regular basting with greases from gooses
And hot chicken soup intravenously fed
You did not fade away, you grew up instead.
We’ll always remember the months that you spent
With tubes in your head in the oxygen tent.
And the mask on your face, the wires attached,
Sweet little baby who was only half hatched.
I’m sure you’ll grow up and mature and extend
To six feet six inches and become a tight end.
But I’ll always remember each doctor and nurse in
The NICU who helped make you a person,
The kid who crash landed, who was carried away,
Who survived it, this bundle we bring home today.
This is BB, about 2 months after he was born.
( I got the numbers and data from Google and March of Dimes, I also picked up some information and the poem above from my friends wall post in FB)
Here is how BB looked a year after his Cranio Surgery. This photo was clicked on December 2010, exactly a year after his surgery.
We still feel the bumps on his head, and its not quite smooth. Hopefully those will go away with time.
I thought it would be a couple months of break from the blog, but nothing goes as planned and it has been almost a year. Oh well!! We all know how time flies 🙂
I had to stop writing because of several reasons, sick kids, way too much stress and well some laziness too. I stopped at a point when we found out that both my boys had some delays in communication. Junior had feeding issues when he was 2 and did not know how to chew. I decided to take time off from everything else and just be with the boys.
But in the process I missed writing about so many milestones that came and went. I know I will regret that part, but at that point I guess the best thing I could do was being where I was needed the most.
So, in the last one year the boys started daycare. It was our first step to try and help them catch up with their communication skills. And for most parts I guess it worked. We still are struggling to find that perfect day care solution but that is a different story in itself.
Lot of things changed in the last one year. Slowly our parents went back to India, back to their lives, and we became more independent as parents. For me it was fun and challenging to handle both of them together. Trying to put them down for a nap together, trying to feed them together, and giving a bath. For me everything was a learning experience. I did not have my mom to fall back on, and it was at this point it hit me that how much work my mom did with the boys. At that point I had no one to come and quietly ask me if I had lunch or if I needed a glass of water. But it was fun. The 3 of us slowly learnt our ways. Sometimes I miss those days. Those lazy afternoons when the boys will fall asleep around me, and I had to quietly sneak around them to quickly grab a bite and surf the net . I miss those small struggles of getting both of them ready and going for grocery shopping, trying to stop one from running around a busy parking lot while putting the other into the car seat. We have survived some crazy days. Slowly the boys got used to the concept of the day care and from part time we slowly went to a full time schedule and I thought it was time to get back to work. Deciding to start working again was a very difficult one. I was not sure if the boys could handle this change. But fortunately, I was hired back by my old employer, and I can now work from home most of the time. The boys are used to the fact that mamma is working and needs sometime to sit at her desk and stare at the computer. They even ape me sitting in front of my computer, sternly looking at the screen and randomly moving the mouse 🙂
2010 has been an important year for me in more ways than one. It showed me a different side and shade of life. I would like to believe that I am a better person now, and I hope that I have learnt to be happy with what I have. There are a lot of missing pieces in our life right now, the boys have just started making words (they are 3 now). They are a little delayed as per the standards of the world. But I guess to me they are the most perfect kids in this universe. Those small missing pieces make my life more interesting. They call me Mamma, they miss me when I am not around, they giggle and jump around me, they cuddle me and fall asleep at night. I think my life is complete even with those missing pieces. We will slowly get things to fall in place or find a way to make the best of life the way it comes. And this time I wish and hope I am more regular in writing down all the milestones, smiles and struggles that come our way. I need to store these memories.
It was a day before Holi when my boys were born. No one at that point of time knew what the output will be, if they will make it or not. I don’t know what that day was like weather wise. I was in that hospital room for more than a week confined to the bed. But it was a sunny day for me. I had no doubt about the boys making it, for me toughest part was to be separated from them right after they were born. From that Holi till now we have come a very very long way. From that Holi to this, I have witnessed a miracle called life every day.
I saw my boys on Holi 2008. We did not play with colors that day, but they gave my soul a rainbow of colors. From that day onwards, every day I have learnt something new from my boys. When my boys were born they could not do what every new born does and every parent takes for granted. They were not equipped to live outside the womb. They did not know how to breathe or feed. However, they learnt. They took tiny preemie steps and slowly they learnt to breathe without those machines and to feed on their own. Yes, it did take them three whole months to learn to do all those things one by one and then all of them together. Yes, they had to breathe and feed at the same time and maintain body temperature before the doctors could let them come home. I sometimes wish I had a journal on how they learnt every small step, but those days I was busy pumping milk for them and just sitting by their side and praying. I do not think I had time for anything else. They learnt like very good students and came out with excellence. No for us it was not easy, but our boys taught us patience, they taught us to trust the almighty with all that we have and leave things upon him. They taught us to let go. Things I never ever did in all the 30 plus years I have been living. Patience was never my virtue; I was a very very stubborn Taurean. However, my boys changed all that and more.
The doctors told us a whole lot about preemie parenting, but there are something in this world which cannot be taught. We have to go through the experience and learn for ourselves. The doctors monitored every milestone very closely. Slowly the boys grabbed, rolled, crawled, cruised and then walked. When I look at my brats running around my house today, breaking things, pulling drapes, banging utensils, those days seem to be a distant past. Thank God for all the little miracles.
As the doctors warned, preemie parenting does not come without its own set of challenges. For us it was feeding and weight gain. Every preemie follows their own pattern of growth and reaches their milestones at their own pace. Some preemies do not have any delays, some do. My boys stayed within the range for all their gross, fine and social skills but they refused to eat and gain weight. Feeding time became nightmares and to top it all they had reflux. They threw up after most feedings. I learnt new techniques of feeding from the doctors, internet and friends. If anyone had a suggestion, I was willing to try it out. Medicines came in, homeopathic, regular, everything. Nothing worked. Vomits happened after almost all feedings, and stained our carpets, furniture, walls. They were not little spit ups. They were huge vomits where everything that went in came gushing out. I finally met a GI specialist, who explained the whole preemie reflux issue to me. All he asked was to wait for the boys to outgrow it. They have outgrown most part of the reflux. They do not throw up their feedings any more, but Junior is still on to mashed food. He hates anything that has textures. Slowly, very very slowly we eased him into Khichdi. We are letting him take him own time to start accepting textures. Yes, I finally have learnt to be patient.
Holi 2008, is a part of the past and this Holi, we want to play Holi the way it is meant to be played. Since they are half Bihari, Holi also means that it’s a New Year and I wish my boys a very Happy Beginning to toddlerhood.
Here is a song for them from me. I hope they live life King-size and never stop being the superstars that they are. I hope amongst all other milestones, they learn one small little thing. They learn to dream and to enjoy every small moment in life. This life did not come easy to them; I hope they enjoy it as much as they can. They deserve it and a lot more.
I have wanted to write about our journey post surgery but I have been too lazy to blog lately. The boys are more than a handful and they take up most of my time and energy. But mostly it is plain simple laziness I guess.
Our post surgery journey has been more or less uneventful. There was this one incidence where Junior picked up the remote and hit it on Bumbum’s head, thankfully my hand came in-between and took most of the hit. It did give us a mini heart attack expecting the worst, but thankfully, it turned out to be nothing. Apart from that, the journey has been smooth. We have done the best we could to keep a toddler (an over active one too) from falling as much as we could. He did have some minor falls here and there but nothing major or anything where his head was involved.
Post surgery, the head has rounded up well, but we still have some swelling around his eyes. The swelling did take a lot of time to go away and our doctor told us that sometimes it even takes as long as 6 months or more for it to completely go away. Bumbum still has some minor swelling around his left eye. Another thing are the plates. Bumbum has dissolving plates in his skull now, but we can feel them when we touch. This again according to the doctors is very common. Feeling the plates is very daunting for me, it just keeps on reminding me of his surgery. However, since it takes over a year for the plates to melt away I guess I have to live with this for now.
Post surgery we had monthly checkups, 2 with his plastic surgeon and one with the neurosurgeon. All these appointments were roughly 10 minutes each where they just felt his head saw the stitches and that was it. The funny part is we drive from NJ to NY an hour each way for these 10 min appointments.
I wish we had taken in more pictures post surgery to put up here, but during the days when Bumbum had his surgery, I just did not want to click pictures. Here are a few pre and post surgery pictures.
This is at 5 months, when we had first consulted a doctor about his forehead shape:
Then around one year actual (9 months corrected) we have Bumbum looking like this:
Just before being discharged from the hospital post surgery
One month post surgery (Jan 2010) His eyes are all swollen up still ..
Two months post surgery (Feb 2010) on our way back from the last doctors appointment
We have come a long way 🙂 And yes I am smiling after all the drama .. It’s the same me who fainted when they took Bumbum in for the surgery. Time IS the biggest healer and Bumbum does look so much better now.
He is a very brave little man ..