Category Archives: Preemie

If

On days like today, a sentence plays in a loop in my head. During the time of my delivery a doctor told me very calmly that “Prematurity has its own complexities”. Little did I know that this line would keep coming back in my life.  Thankfully, we did not have any major problems. Thank God for that. I have two 4 years old who keeps me on my toes from morning till night. They hug me, they never stop showing me how very much they love me, and they try to tickle me to make me smile when I feel sad. Sometimes I wonder what else am I longing for. But to be very honest, the human heart always longs for more. A little more. Just a little more… and it is never enough…We say we will never compare our kids, but we do. On days like today, the little things that we do not have stands in front of me in its monstrous shape. What if they did not have the delays… what if I did not need to work extra hard on them … what if they were born full term.. Would they still have these delays? Would they be doing more than what they are doing now? Would they still be underweight? What if .. So many what ifs … sometimes I am looking for answers.. Answers to questions I do not know. On days like today, I put them under a microscope and analyze them. I rip apart each and every delay and try to find a reason .. a cause .. and then I try to think of things I am thankful for. But on days like today it is hard for me to focus on the positives.. on the haves. I long for more. I want my super heros to be more than that. I want them to be that 4 year old in their class who can explain each and everything that he did since morning to his mommy. I want them to tell me everything they did in the school …every person they met .. every thing that they felt … They try, my boys try. They try so hard .. to answer my questions. And then some time when they see me sad or quiet and they do not have enough words … they come and they tickle me … And that on days like today .. opens the floodgates. I know we can never have it all. On days like today I know that I am blessed, doubly blessed. But on days like today I can never stop the tears.

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Thankful

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.

Prematurity Awareness Day

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.

-Garrison Keillor

 

 

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)

Once Upon a “Holi” Day

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.

Preemie Mom

I came across this poem today and it gave me Goosebumps. This says exactly what I felt and I feel even to this day when I look at my boys. I could have written this.

I had to add this to my blog

 —————————————————————————————–

Congratulations on the birth of your beautiful son
What? I’m not ready. It wasn’t supposed to be like this
I’m not due until September, it’s only June, you must be wrong
Isn’t he lovely, who does he look like?
How can I tell? Surrounded by plastic walls, wrapped up in wires
Please take me away from here. I can’t deal with this today

Hello mummy, your boy’s doing so well
He started his milk today, you must be so proud
Are you talking to me? I don’t feel like a mum
Please don’t call me that, not yet.
Why did this happen? What did I do wrong?
So many questions, I’m lost in this world.

Home at last, but home alone.
Last time I was here I was pregnant
I walk into your nursery and put my hand on my belly
Both empty. I scream in pain – Give me back my baby!
The first night is the worst, and they don’t get much better
Desperately listening for the phone to ring
Living for the moment when I can return to your side

Would you like to hold him?
Are you kidding? Of course I would.
But wait, surely he’s too small
I might hurt him, I can’t do this.
Here you go, your baby in your arms at last
I cannot speak, so tiny, so fragile but yet so perfect.

Nurse, my baby’s not breathing!
It’s ok, he just forgot. It’s quite normal for his age
Hold his hands, touch his feet, he will soon remember.
What? Are you people crazy?

How can this be normal?
I need some time out, my head is spinning.

For hours, I sit and stare at you
Enclosed in your plastic box
I’ve learned the beeps, I know when to worry
I feel like we’ve been here forever.
Will we ever get out? Will I be able to cope?
I cannot wait for the day to come, when you leave here with me.

3 months on and your finally home
Now you’re bigger and stronger we can finally be a family
Free from wires, your new life begins
So many achievements for such a little one
Breathing by yourself, drinking from bottles
The simple things, others take for granted are so special to me.

I still have so many questions though,
Everyday I continue to ask why me?
But when you look at me and smile,
You have given me the answer no-one else can
I’m the luckiest person to be granted a preemie
And I’m honoured to be your mum.

Fleur Tedstill