“As long as I’m living my baby you’ll be”

Dearest Leia

It’s been two years since the good Lord had taken you home, where you are free from your illness and pain.

Your papa and I still miss you dearly and not a day goes by, when we don’t see your face in our minds. We make sure your big brother remembers you by talking about you as if you are still around.

Some days I still find myself crippled by a deep sadness and remembers your cold hardened body in the cot all wrapped up in the blue sterile hospital cloth. The ER team had just tried their best to save you but life is such, some prayers just have a “No” as the answer.

I remembered staring at you, and my confused state of mind told me this was not you. Your nasal tube had been taken out and every few seconds, blood will flow out of your nostril. I tried my best to wipe that off, but still it flowed out. Your life has ended and yet it still flowed.

December has not been the same since you left. Still, it is better this year. The pain is not as sharp, but dull. The longing not as prolonged, but it is still draining.

I guess time does smoothen out those jagged memories and that’s good. Your little brother, Isaac, all almost two months old, has also helped to keep me focus on the good. We took him to “see” you yesterday, Christmas day itself, at the columbarium and told him of his brave and feisty big sister.

We miss you, too much.

Loving you always and forever

Mama

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Two Years On… Happy 2nd Birthday

I remember a year ago, while putting together your memorial video as a way to celebrate your 1st birthday, my heart was still aching and I have somewhat found a way to get my life back together again.

I don’t think I’m back to normal, I have changed, so has your dad. It’s ridiculous to say life is back to normal, because nothing is normal since you passed. You changed us when you were born, and changed us again at your death. Our shattered lives took a long time to figure out this New Normal, and yet when we think we are ok, there will be reminders to suck us back into the black hole of horrors and pain.

I would love to write about the happy things of how we have healed, or that we have gotten over your death, or to list down all the good and positive things that had happened to us since 26 Dec 2010 so that it will be an encouraging thing to anyone feeling depressed and downtrodden.

The truth is, while I’m laughing more, feeling happier, even hopeful especially since you are going to have a younger brother (I’m sure you knew before we did, I reckon the Good Lord must have kept you in the loop), in quieter moments, I am still consumed with a certain amount of guilt and emptiness that comes, I guess, with the fact that you aren’t around.

I don’t think that will ever go away. A part of me doesn’t want it to go away, doesn’t want to let go totally, because I don’t want to forget you.

I can’t just remember the goodness of your birth, and ignore your death. It will be denying your life, your reality, however brief it may be.

I had written about your birth shortly after you were born, and it should be time to write about your death too. I’ve tried to block out that part of your life but it’s just futile.

The funny thing about birthdays is if you think hard about it, there’s really nothing much to celebrate. Happy that the previous year is finally over? Getting older? Moving a step closer to your grave? But of course, we celebrate, the hope of a another year, of blessings and happy things that will come our way. Your big brother is already planning for his 5th birthday, and we wouldn’t want to disappoint him either.

Likewise if you have been around, this year, I wonder if you would finally be given the all clear.

No more additional oxygen via the nasal canula. No more horrid sounding pumping of the O2 concentrator.

That you would have been off the feeding tube for awhile already and could actually taste how yummy chocolate cake would be.

I wouldn’t have to hear any more heart-breaking alarms going off each time your blood-oxygen level went down.

Or to hear your cries when the doctor peel your eyelids apart and insert the metal apparatus onto your eye socket so as to check on your ROP.

There wouldn’t be a need to accompany you into the motion-X Ray room and wait outside while I hear your screams as the docs and nurses insert a longer feeding tube into your small intestine ‘cos it has either come out or you have grown older and required a longer one.

Or when you were home, and whimpered in discomfort and I couldn’t do anything more to make you feel better. And one night, after being woken up repeatedly by you and the incessant alarms, I lost it and actually scolded you while carrying you in my arms. And I felt I was the worst mother in the world, and held you tight and hoped you would not think of me as such.

I still hear those cries… and they still breaks me apart.

My dearest Leia, I still feel I should have done more for you. Before you were born, the doctors did prepare us that the survival rates have improved ‘cos of medical advances but there would be medical problems you would face. And after your birth, we were so optimistic that everything will just be alright. Because you survived and we would just wait till you were stronger, take you home and things will be as it should be.

Even when medical issues came up one after the other, still we were damn sure you would be ok. It would just be a matter of time, we would wait… for you to get well, get better.

Lots of people prayed for you, for us. So did we. I remembered telling God just shortly after giving birth to you, thanking Him for you and that you weren’t a stillborn and that your cries were quite loud and powerful, so those lungs were ok.

Then as your stay progressed on in NICU, I prayed that you would stop losing weight and God answered.

Just when we thought your lungs would be ok, somehow you had an infection and that scared us to bits. But still I prayed and God answered, well, not by taking away the patchy lungs you had, but the infection was treated and you started to gain more weight.

We prayed hard to have you come home as soon as you could and God answered that after 91 days.

But when we took you to see the specialists at KKH and realised your issues were more serious than we originally thought, still we prayed that all these obstacles are necessary for us to overcome so that you would be healthy. And God answered, by helping us to place our trust in these doctors.

I prayed hard while you were in the High-Dependency Ward that the doctors will know what to do to help you, and I would do anything just so that you could be back at home for Christmas. I learnt from the HomeCare nurses on how to use the home medical equipment, how to change your continuous feeds and set up the machine, how to suction your built-up mucus and phlgem (you hated this and so did I, but someone had to do it).

And God answered, you finally came home the week before Christmas and it felt normal again. My family is back together.

I still wonder if I should have checked on you a few more times that day, or perhaps I was getting complacent and felt that everything would be alright. Perhaps I should have actually woke you up that morning instead of letting you sleep, even though I felt it strange you looked a bit too lethargic and listless that day.

The only time when I felt I would lose you was when you were rushed to the Hi-D ward, but when you came out fine, that fear never resurfaced.

Even when you were cold to touch, your milk had leaked out of your tube and I couldn’t wake you up no matter how hard I tried. I still didn’t think I would lose you. I screamed for your dad to come into the room, and he came in carrying your brother and didn’t know what to do, while I kept trying to shake you gently and a little firmer, but still you didn’t respond.

He finally called the ambulance, as I tried to perform CPR on you and when your tongue rolled out and didn’t retract, all that optimism was replaced by a thick fear and dread. I kept doing CPR, amidst the tears and calling your name, because that was the only thing I could do.

The paramedics came and took over, carrying your limp body in his arms while pressing on your chest. But the fear somewhat disappeared and I just felt you would survive yet another hurdle. The ride in the ambulance was a blur, I couldn’t see you because the paramedic’s back was facing me, but I felt you were in good hands. Surely you would be fine… God, you wouldn’t take her away now, would you?

I saw the ER team all assembled at the driveway, and once we alighted, you had already been wheeled into the room. One of the nurses ushered us into the room, and that was when I lost it. I finally cried big time seeing how serious things were becoming.

I remembered  the attending doctor who came to update us in the waiting room, that your condition was critical. I asked since your canula was still in place and the oxygen was still flowing, you would still be breathing right, it didn’t affect your brain right? I was searching for some kinda answer on his face, but the good doctor just said, technically it could be but unfortunately they had a hard time getting your blood pressure ‘cos it was too low, and you needed a dose of adrenaline. And that your heartbeat was faint. On hearing that your heart was still beating, I felt optimistic again, and we would just all survive this scare.

And then you left, just as the doctors were getting you ready for ICU.

I miss you everyday, Leia. “I have loved you for a thousand years. I’ll love you for a thousand more.”

Fighting A Battle: Getting Your Birth Order Recognised By The State

Your dad and I were shocked when we realised that the State doesn’t consider your birth order to be 2nd when I asked about applying for the government-paid maternity leave (GPML) for your new brother or sister. And in doing so, I felt I had to fight for your rights, even if you aren’t physically around anymore. But that opened up more questions instead.

After checking with the GPML department, I was not satisfied with the officer’s too professional and sterile answers and decided to write to the Minister for MCYS instead and very promptly received a telephone call from one of the senior MCYS officers and email replies.

Email To Minister Chan (MCYS) dated 30 April 2012:
Dear Minister Chan
  I hope in the midst of your busy schedule, you will take some time to read through this email and understand the anguish and heartache that has been brought about after getting the replies from the GML(CPF) officer, Ms Cxxx Yxxx.
 
  We, as parents, would also like to find out what is the rationale behind pegging the confinement order to the current living child/children.
 
   To summarise, I had written to GML(CPF) to find out and confirm if I qualify for the Govt-Paid Maternity Leave that would be granted for 3rd and subsequent child. 
 
   The reason being, my 2nd child, Leia, was born but passed away four months after delivery. She has her birth registered as a Singaporean (both my husband and I are Singapore Citizens) and has her birth cert. Hence to us, she is our second child and we reckon the State recognises her as such since her birth has been registered.   
  
    From what I had read on the GML website, stillborns would not be considered in the confinement order, that I understand as much. But my situation is rare, since we don’t expect children to die this young but such things do happen. Hence I felt perhaps it will be better to check with the GML(CPF) as I am now expecting my 3rd child and planning to apply for maternity leave later in the year.

  I have included the email exchanges between Ms Yxxx and I below for your reference.

  Ms Yxxx has been professional in her replies and provided me with the link to the huge Child Development Co-Savings Act and highlighted that the confinement order is based on the number of current living child/children. Hence my current pregnancy, if successful, will be considered as my 2nd child.

   My husband and I feel very perplexed, hurt and disappointed by this. We feel that parents who had children who died unexpectedly at a young age, would feel that our child has been conveniently ignored. That her birth, recognised by the State at birth and registered, has been cancelled out. That the order of her birth is reduced to nothing just because she didn’t live on. We feel very unfair for Leia, that even though it is a fact she had died, but it is also a reality that she was born alive and lived, even if it was for a short four months.

   To me, to simply quote the CDCA document and tell me that is the reason why my current pregnancy will be considered the 2nd confinement, and not the 3rd, is a slap in the face and a pain in my heart. It may be a very technical reason behind it, but I feel it is very unfair to the parents and to those young children whose lives were snuffed out unexpectedly. And I sure don’t understand why.

   As it is, to lose a child that young is already a tragedy, something we live with each day, and to consider having another after the death of our daughter, is something my husband and I mulled over for a year and a half but still we decided to try for a 3rd. Not because of any baby bonus, GML or whatever extras the government will give us, but because we still feel we want to be parents. The joy of having another child outweighs the fear of losing another.

   So, Minister Chan, my hope is that my daughter, Leia, will be considered as my 2nd child, not just within my family, but recognised by the State, especially since her birth had already been recognised by the State.

   Thank you for taking the time to read this and hope to hear from you soon.

Email Reply From The Senior MCYS Officer dated 9 May 2012 (days after we had spoken over the phone on the 3 May) and this email was mysteriously retracted thrice, which didn’t work cos I had opened the email.

Dear Ms Christina Lim,

  We refer to your email to Minister (Community Development, Youth and Sports) on 30 Apr 2012 and our tele-conversation on 03 May 2012, requesting us to re-determine the birth order of your third child for the purpose of Government-Paid Maternity Leave (GPML).

 2.   We are sorry to know of the loss of your 2nd child, Leia Tan. Under the Baby Bonus Scheme, Leia’s birth order remains as 2 and your newborn will be considered as birth order 3 under the Child Development Co-savings Act (CDCA).

3.    However, for the purpose of GPML claim by your employer, your newborn will be considered as the 2nd child. This is because the provisions on GPML in the CDCA are related to the maternity leave provisions in the Employment Act. In particular, the maternity leave entitlement in the Employment Act is only for the first and second child.  As such, the birth order definition of ‘living children’ will protect working women who give birth to 3 or more children but had lost a child earlier whether as a still-born or through illness.

4.    We would like to assure you that the determination of birth order has in no way undermined your entitlement to Baby Bonus or GPML benefits (as an employee) under the CDCA.

5.     We wish you and your family well.

And this email from MCYS caused me to question point 3 (we don’t understand the legal, civil service mumbo jumbo language). And it felt like they were making a compromise, by recognising your birth order for the Babybonus application but not for GPML.

So I shot back another email to them, after giving them the morning to explain why they had retracted this email or even send me another “updated” one.

Email Reply To The Senior MCYS Officer dated 10 May 2012

Dear Mrs Pxxx-Pxxx 

  Thanks for the reply.

  I read through your email a few times and had also forwarded it to my husband. However as the information described is in the standard formal language, we would like to just clarify a few points so that we have fully understood MCYS’ stand.

   1. Babybonus
Am I right to interpret that when I put in the Babybonus application for my 3rd child, if delivered successfully, it will be ok to state that I have two preceding children, inclusive Leia.

   2. GPML
My husband and I do not understand the statement “maternity leave entitlement in the Employment Act is only for the first and second child.  As such, the birth order definition of ‘living children’ will protect working women who give birth to 3 or more children but had lost a child earlier whether as a still-born or through illness”

We are unable to see how the birth order definition of “living children” protects working women with 3 or more children but lost a child. Since we do not know about the details of the Employment Act, we are unable to understand the rationale behind it.

Over our conversation on the 3 May, you did mention that if I was interested, you could get the Legal Dept to write to me to explain why the CDCA has defined confinement order according to living children, and I had replied that although this would be useful in helping me understand, I would still find this to be an unfair definition in my case. Perhaps if you could provide me with a bit more explanation, that may help.

While there must be some good reason for protecting that group of mothers/working women, but since we don’t see the rationale at this point, I feel that the birth order definition of “living children” doesn’t “protect” or assure mothers/working women who had one less child. We are obviously in the minority, but yet this minority exists.

You had also pointed out the scenario that if I had applied for maternity for my first child, Tyler, and subsequently my 2nd, Leia, then when I do apply for maternity leave for my newborn, the child would be considered my 3rd child. This would have been straightforward, except I wouldn’t have expected how things would turn out and also because my family was staying and working in HK, and there wasn’t any need for me to apply for maternity in S’pore. But if this was all done, I guess this current issue would not have turned out to be so sticky and in a sad way, resulted in lots of questions being asked and us feeling emotionally drained at times.

  I would like to reiterate that it isn’t the babybonus. GPML or any other benefits that we are concerned with, but it is our hope to have our daughter, Leia’s birth order, recognised officially in all aspects.

  My husband and I would also like to thank Minister Chan, MCYS and of course, you, for the patience and time taken to look into our situation.

  Thank you and best regards

So the officer tried to contact me the last two days, but she caught me at the wrong time… when I was teaching. And finally did the smart thing by sending another email

Email Reply From The Senior MCYS Officer dated 14 May 2012

Dear Ms Lim,

I have tried contacting you on the mobile phone on 11 and 14 May 2012 but there was no answer.

 2.  As mentioned in our earlier reply, your newborn child is considered 3rd child for Babybonus application.

 3.  However, for the purpose of Government-Paid Maternity Leave (GPML), your newborn child’s birth order is considered as 2. We would like to highlight we recognised Leia’s birth.

 4.   As for your request for an explanation of the confinement order in CDCA, Paragraph 3 in our earlier reply is drafted with inputs from our policy colleagues and colleagues from the National Population Talent Dept, Prime Minister’s Office.

 5.   I would also like to clarify that in the scenario if you had applied for GPML for Tyler and Leia, your new born’s birth order would still be considered as 2, for the purpose of GPML. In our tele-conversation, I pointed out the scenario to highlight that it might have felt better if you have applied for GPML and have received GPML for Leia then. Apologies if I have confused you in any way.

6.   Thank you for taking time to understand our reply.

I still don’t understand the rationale for pegging birth order to the number of living children and while I know it is not possible to get what I want in life, but when it’s for you and your rights, I would want to fight. Just as you had fought.

Our Angel. Our Feisty Fighter. Our Daughter.

Born 13 wks premature on 1 Aug 2010, 2051

Went Home To The Lord on 26 Dec 2010, 1448

We miss you terribly.

We still think you are in the hospital, just like previous times, but the reality is, you aren’t.

You have left us. You are taken from us.

I’m still angry with God for taking you so soon, but I know I can’t stay angry with Him for long. The pain and the void can be so crippling on some days that I can’t breathe or sleep, and have to run back to Him for comfort and strength.

Click here for Leia’s memorial page.

Thanks to Cara for getting this done for us thru’ Carly Marie Dudley’s websites.
(a) To Write Their Names In The Sand
(b) The Butterfly Beach

We Are Home – Nov 2010

A few days into being home haven’t been too bad. 

TJ has been a lovely brother, basically he is curious about his little sister, whom we have been reminding him that he has one and now that she is finally home, it is quite interesting to see his reactions (or lack of reactions) towards her. I try to remind myself to give him some attention throughout the day, but it can get a little tricky since I’m still trying to get into a routine that gives me time to do so.

Settling into a routine takes a while, and having two kids do make it more exciting.

Some of the tasks I need to do:

  1. Leia’s medications which she takes at different times of the day
  2. Her 60 ml  milk feeds (30 ml of EBM and 30 ml of Enfalac AR, the latter supposedly to keep her milk down in her stomach so as to lessen her reflux) every 3 hours
  3. Watch her SPO2 levels on the pulse oximeter & listen for the alarm that goes off when the level dips below 85%
  4. Check that the prongs on her nasal cannula are still in her nostrils
  5. Change the tapes on her face (Leia absolutely hates this and makes sure we know that) every couple of days
  6. The three-hourly pump

In between, I will hang out with TJ when he is awake and rest when he naps. So far, Leia’s been sleeping most of the time and it gives me time to rest too. I am still not comfortable letting my helper carry Leia or assist me with any of the above tasks since the only other person I trust, other than myself, is D.

 So she helps me out with TJ, making sure he has his proper meals and plays with him when I am unable to do so. I feel really bad that I haven’t been able to spend much time with my son.

On the other hand, TJ seems to be taking things quite well, plays independently and doesn’t cling to me as much. Perhaps we have done something right with bringing up a confident and self-assured kid. I guess TJ knows we love him as much as we love Leia and even now that our time is taken up by the Feisty Fighter, TJ doesn’t feel threatened by that and neither does he act up to get our attention. Thank God for this.

Dr Ong has been coming to our place to check on Leia since her discharge and we are very grateful that he doesn’t charge us for these regular visits. I update him regularly too with calls and messages.

Anyway home is the best and a lot more normal really, than being in the hospital or shuttling to and from it. I’m tired, but happy.

31 Oct 2010 – All 91 NICU Days

I haven’t updated this blog in a long time for many things had happened along the way. And now that there is a slight window of opportunity, I guess I should really put it down in words before my memory fails me again.

When we knew that my little one would be discharged at the end of October, there was much preparation to be done. Going to the hospital to feed her and learn from the nurses there, getting the necessary equipment like the O2 concentrator and just prepping up the apartment for the new arrival, except it was three months later.

Our helper had requested to come to S’pore on the 7 November (a couple of weeks later than expected) as she wanted to support her daughter in a competition. As a mum, I reckoned she should go and be there for her child as she wouldn’t be back home for at least 2 years. Hence my mum stepped in (thank God for that) to help me with TJ and stayed over for the week.

Unfortunately life has a habit of not going according to plan and my helper was delayed again and again, for up to a week plus. But that will be for another entry.

Dr Ong felt it would be wise to have me room in with my baby for 2 nights before the official discharge on the 31 October. I had a hard time saying bye to my son, since I have never liked being away from him for too long. Again, having my parents living within walking distance from us is a blessing, and I could just walk TJ to my mum’s place and be assured that he would be in good hands. Except I think my boy actually runs the place upside down inside out and “controls” his grandparents, who willingly allow for that to happen.

For this room-in exercise, the packing was a bit of a headache. At this time, my helper wasn’t around and thankfully, TJ was a good boy and didn’t interrupt me too frequently. The essentials were the bottle steriliser, my Medela breast pumps, the little basin that I use to keep the bottles in one place while I wash them in the sink and the small bottle of baby bottle washing liquid and everything else that was required by the Feisty Fighter. The room, which was just opposite the NICU ward, was comfortable and even though it’s a 2-bedded ward, I had the whole room to myself.

I was early that day and the NICU nurses told me to go to the room to rest instead since they couldn’t “hand over” my baby to the ward nurses till after 2pm. I actually went to meet D for lunch before returning to the hospital, napped a little before the nurses wheeled her into the room.

Besides learning to take care of a preemie in a controlled medical environment prior to discharge, I took these 2 days to try out the oxygen concentrator and the pulse oximeter on my own. Before this, these equipment had already been used for at least a week by the NICU nurses, but I just want to make sure that I know how to use these things properly.

 To a certain extent, I still had loads of help since the nurses were always around to check on my baby, warmed up the EBM before giving it to me just before each feed. I can’t say that I could rest since the whole objective for this room-in was for me to be “solely” in charge of my lil’ one, so I did the night feeds and comfort the Feisty Fighter when she started bawling for one reason or another. Still, I must add that during those 2 nights stay, I was very well fed. 😉

My aunt, who does the night shifts as a NICU nurse at TMC, happened to be on duty during those nights that I was in the hospital with my baby. She would pop by during the late night feeds and keep me company, so that I wouldn’t fall asleep while feeding my baby. She has been a great help during the 91 days when my lil’ one was warded, in fact, my aunt was the one who wheeled my girl in the Globetrotter and prepped her in NICU shortly after she was born. I suppose there is a certain affinity between us now, somewhat.

There are these two colleagues of my aunt’s who do nights together with her and I had never gotten to meet them, and I was glad to have during those late night feeds. They encouraged me and told me that I would do just fine.

I am immensely grateful to all these angels who had been taking care of my baby girl from birth till now. All 91 days. And as much as I am so glad that I can finally have her home, 24/7, it does feel quite daunting since she has unique needs that are different from full-term babies. But Leia Kate Tan is mine, and I’m just glad she isn’t anyone else’s.

There must be a reason why she is here, even though she had a stormy beginning and will have quite a rough journey ahead. But God has been most gracious to us and He must have major plans for this little girl. I don’t know what He has in store for her, for us, but I do know that we aren’t alone on this ride of our lifetime. This adventure, for this family of four, has just begun.