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My LAT is 0%. What does that mean?

Being diagnosed with repro-immune disorder (mostly generalized by the public and even doctors themselves, as APAS) can be very overwhelming. I remember the time when I received this prognosis after my second miscarriage – it was devastating and confusing.

“Your LAT may be low. You have a clotting disorder. Your immune system is attacking your baby.”

This was four years ago. And all these terminologies did not make any sense.

I actually slid into a depression stage after I knew that I was a candidate for APAS. Here you are wanting a baby and your own body is rejecting the child inside your tummy.

May mas sasaklap pa ba, dun?

I grappled for answers to this seemingly bleak condition. Back then, there were very limited resources about this disorder and I was fortunate that I found our Facebook support group where I drew my strength and inspiration from.

As years have passed, our numbers have been growing and the thought that more and more people are being diagnosed with this disorder has been disconcerting.  Almost every week, I receive a message through my blog’s Facebook page>> about yearning women wanting to be mothers but who are burdened by this condition. My heart bleeds.

While it is not favorable that the traffic I have been getting is mostly about infertility (this thought is too heavy on my heart) and repro-immuno disorders, I hope that somehow, this little corner of mine brings a little hope to all APAS survivors because let me tell you this —

APAS and other repro-immune categories can be overcome.

There are many successful stories in our APAS Facebook page which will warm your heart. I am a living proof that with the proper treatment and gazillion prayers, you will hold a little darling in your arms.

Me and my Santiago, fourteen months ago.

But first, let us start with some education for the benefit of those who are new to this whole repro-immune thing.

There are many patients who are initially diagnosed by their OBs with APAS but to know the depth of your immune problem, it is best to consult an immunologist who specializes in this area. APAS is, in fact, just one of the five categories and they usually come in tandem. In my case, I was Category 1, 2 and 5. To know more about the other categories, click here>> .

Today, I will talk about the tests for Category 1.

In a (supposedly) healthy pregnancy, your immune system should be able to detect paternal cells so that your body will create protective antibodies around the fetus. If your body will not detect these antibodies, it usually results to a miscarriage. Most of those who are diagnosed with Category 1 would have 0% of these antibodies.

There are two tests that doctors would ask to test Category 1. One is tissue crossmatch and the other one is LAT or Leukocyte Antibody Test.

I actually did both. Tissue crossmatch was more affordable than LAT but I prefer LAT more because it gives you actual values in percentages while the crossmatch would just give you a positive and negative result. This is what my crossmatch looked like back in 2014. The NEGATIVE results meant that I was not producing the needed antibodies for the pregnancy to progress. 🙁

Tissue Crossmatch

On the other hand, this is what my LAT looked like when I had my second test:

LAT

The most ideal pre-conception condition is your LAT showing at least 51% or higher for higher chances of baby to survive. Other immunologists are much stricter, requiring a 100% reaction before giving go signal to conceive.

So, how does one get to that?

Your doctor would usually order LIT or lymphocyte immunotherapy. Read about this here and here.  Once your antibodies go up, you would be given signal by your immunologist to see your OB so you can start conceiving.

Hope this helped you today, soon-to-be-momma! Sending you babydust and prayers.

xoxo,

I have a new vice and I am sorry…

I have something to confess.

I haven’t been passionate about anything lately. Not my writing – although it has somehow sparked some new fire especially since I have been getting some pats on the back from some people who were “inspired” by this blog. I haven’t read a book in a while. That seemed impossible with a toddler who will surely fill up every waking time (not complaining though). The short stint in calligraphy lessons bored me.

Somehow, my inner “creative” self was hungry for something to be occupied with aside from the daily grind of life.

Then, the universe conspired.

Someone introduced me to something that is now keeping me awake at night and even haunting me in my dreams. Haha!

I am talking about my new vice…

*fidgets*

It is pretty messed up, I know, but I am so in love with this new thing in my life, and I cannot stop talking, thinking and researching about it. When I talk about my new addiction to the husband and to some of my friends, I feel like I sound like a cult member. Like nothing is ever wrong with it. 

I know that sounds crazy, but tell you what, I don’t care because this gives me the high that I have not had for a long time.

So what is this new vice of mine?

Hmmm…

Oh dear! I got into this whole essential oil craze.

 

Yup, I am going full gung-ho on being an #oilbularyo and starting to go natural for my growing family’s health and wellness.

You see, alternative medicine is not something new to me. I grew up in a really small town (smallest in Negros Occidental if I am not mistaken) – it was more of a barrio than a town actually.

When I was younger, our fevers were treated with plants like kasla, our burns with aloe vera, our wounds with malunggay extract or guava leaves. We didn’t go immediately to the doctor for simple fevers, we went to our ol’ reliable manghihilot and they fix us.

Did it work?

I suppose so. I am alive, am I not? Hehe.

Don’t get me wrong. My parents were not pabaya or what-not. We were also complete with our immunizations and all that shiz but for these minor illnesses, we weren’t rushed to the hospital. That was not uso where we used to live.

So exploring alternative medicine was not really a problem for me. But how did I get started on EOs? How did my #oilbularyo journey start?

Young Living Essential Oils

Well… this is funny. I was looking for some solution for my Eggy’s snoring. I feel that his labored breathing is already affecting his sleep (he has a broken nasal bone on one side of his nose) because the snores are already very throaty and he would sometimes wake up from his own orchestra (lol).

That was the main reason. Haha. I didn’t want to buy a CPAP machine (we were already considering this) because it seemed so constricting and it was expensive. I just felt that it was not really good value for money.

But his snores weren’t getting any better.

We were already toying around with the idea of getting a CPAP machine when I kept on seeing posts from at least three friends from my Facebook newsfeed about how they are shifting to a more natural lifestyle and promoting health and wellness of their family through essential oils.

One friend claimed that it was helping her family battle allergic rhinitis while the other one just talked about having a good night sleep (and less snoring!)

I inquired from my friend, K, and I was introduced to this whole new world of essential oils. While there are no approved therapeutic claims, reading the testimonies from many people who use it was just overwhelming. 

I then started reading about how aromatherapy can promote good sleep and how you can shift your common household staples with all-natural products and getting rid of all the chemicals. This ranges from face serums to bug sprays to diaper creams. Ha! The list continues.

So after three long months, I decided I would invest in a Young Living Premium Starter Kit. It was not cheap, admittedly yes, but my cost-benefit analysis was pointing its green flags on me.

My new addiction - essential oils

Now, three weeks after, I have never regretted my decision because Eggy sleeps well and Santi sleeps better. The best thing is for me, of course, since there is no more Santi who wakes up in the middle of the night because of his dada’s snores. Lol.

To this day, I just can’t stop. We diffuse with our favorite Lav + Frank combo every night for better sleep. Eggy rolls on his breathe protocol [RC & Thieves or RC & Valor on the bottoms of his feet] and Santi and I our sleep protocol [Lavender on the bottoms of our feet]. Everybody happy.

Breathe and Sleep Blend

I am just at Square 1 of my essential oils journey and I cannot wait to blend, blend, blend and share this amazing experience. 

Hit me up if you want to learn more about YL’s essential oils. I can add you up to our group so you can see the many great testimonies of different people who have been touched by the wonders of this ancient form of healing. If you are looking for a natural way to support your family’s health and wellness, who knows, this can work for you, too!

By the way, momma, I am just sharing this new addiction of mine. It took me three long months before I decided to purchase my starter kit because, truth be told, it comes with a not-so-cheap price tag. Please do your research as well so you can take that next best step for your family. In my case, when I was doing my own, I loved that Young Living has been there for quite some time and the community in the Philippines receives great support (that is also one of the most important things for me). This product is not intended to diagnose or cure any disease. Please do your own research and see for yourself. It took me a lot to dive into this but I am happy I did. Hit me up if you have any questions. 🙂 

 

I Dread Being Pregnant… (and no, it’s not because of APAS)

It was never that popular until Kate Middleton talked about it when she was first pregnant (and now, another round of news highlight it again) but many women around the world silently suffer from this excruciating ordeal of Hyperemesis Gravidarum.

Hyperemesis Gravidarum or HG is a condition characterized by severe nauseavomiting, weight loss, and electrolyte disturbance. Mild cases are treated with dietary changes, rest, and antacids. More severe cases often require a stay in the hospital so that the mother can receive fluid and nutrition through an intravenous line (IV). Source: American Pregnancy Association

There are so many misconceptions about HG and noone really openly talks about it (just like APAS and other repro-immuno disorders). Truth is, my mom had it when she was pregnant with me and my sisters, and my friend’s mom also suffered from extreme vomiting way back in the 80s. It is often just coined as “paglilihi” – just your “normal” morning sickness. But seriously, there is nothing normal about HG until you experience it.

My pregnancy with Santi was already difficult because of my repro-immune disorders. I was positive for 3 out of 5 categories and APAS was one of them. Because of this, I was on monthly IV for different intravenous procedures to counter my overactive killer cells. I also injected myself with heparin twice a day (on my tummy) and had to drink an unimaginable number of pills. My ordeal was even made worse because I also had to suffer from HG.

I have said this once, and I will say it again, I will take APAS over HG any time of the day.

Suffering from HG is unbearable. I vomited all throughout the day. Imagine your worst hangover, on effin replay, day in and day out. With no medicine. Mapapamura and maiiyak ka talaga! There was even a time when I passed out because I was vomiting so much. I hit my head on the floor and husband had to rush me to the hospital where I was admitted for dehydration.

It was constant hunger and thirst every single day. I often feared for the health of my baby because I hated water the most. What if my amniotic fluid became too low? What kind of nutrients was my baby getting since I am barfing them all?!

My doctor gave me Plasil and Ranitidine but I also didn’t want to take them all the time because I felt that I was already ingesting too many medication.

Worst part of it all is that noone really understands. Of course, people around you mean well when they say, “Kain or inom kalang ng paonti-onti.”  You wish you can. But it is nearly impossible. I tried. And I kept on going back to the toilet 80% of the time.

So what can you do?

Nothing really. In other countries where HG is commonly diagnosed, they offer medications like Zofran (much more stronger than Plasil). However, with all the drugs I was taking, I know that I would have not been comfortable adding another one to the list.

I wish I have an answer to you, HG mom. But I really don’t. I just want you to know that I know how you feel. In my case, I only follow what they say that take it one day at a time. 

Rest if you need to rest. And of course, pray. That is the only ammo we have, especially for complicated pregnancies like ours.

Virtual hugs to you! Send me a message anytime if you need someone to talk to. That’s the most I can do.

xx,

APAS after Birth

APAS after birth and migraine

APAS after birth.

Who would have thought that this dreaded disorder can still haunt you after pregnancy and way after the birth of your child.

Antiphospholipid Antibody Syndrome, otherwise known as APAS or APS in some countries, is an abnormal clotting disorder>>. It is often diagnosed in women who have had recurrent miscarriages.

Once diagnosed with APAS, pregnant women are required to be on several medications such as aspirin and heparin to thin their blood and make their pregnancy viable.

However, APAS can still affect your life even if you are not pregnant. I remember having terrible migraines since I was a kid. It was exponentially magnified when I was working and the migraines came with nausea and pain at the back and by the neck. Of course, like many workaholics out there, I just attributed it to stress. Upon some more probing, turns out that what I have been feeling may be symptoms of APAS.

According to National Heart, Lung and Blood Institute, APS can lead to many health problems, including stroke, heart attack, kidney damage, deep vein thrombosis, and pulmonary embolism and some of the signs and symptoms are:

  1. Chest pain and shortness of breath
  2. Pain, redness, warmth, and swelling in the limbs
  3. Ongoing headaches
  4. Speech changes
  5. Upper body discomfort in the arms, back, neck, and jaw
  6. Nausea (feeling sick to your stomach)

In retrospect, I have noticed a significant drop in my migraine episodes when I was under aspirin therapy (pre and during pregnancy). After giving birth to Santi, I stopped taking aspirin thinking that everything was over. However, I have been not feeling well lately with extreme migraines and some overwhelming fatigue. I dilly-dallied for a while, thinking I was just under the weather but it turns out this crazy serious condition is here again, knocking at my door.

I consulted with my immunologist if I should continue with my aspirin therapy (that’s daily low-dose of aspirin) and to my surprise, she said yes! I should have tested myself sooner but I never really thought that my migraines could be connected to my sticky blood yet again.

Anyway, APAS mommy, if you are experiencing the same, please do consult with your immunologist or your obstetrician. As we all know, with repro-immune disorders, one treatment plan does not fit all so it is always BEST to consult your physician.

Hope this helps!

Toodles!

APAS Diaries: Baby Kiel – God Will Provide

A month ago, I shared to you the first installment of my APAS Diaries: the story of Baby Bella and her mom, Gracey>>.  Gracey’s story proved that we should never lose hope and God will answer our prayers in His own time. She never gave up even after five miscarriages; she was scared but never lost hope. Now, she is holding her precious and oh-so-beautiful baby Bella.

Today, I want to share with you the story of Em.

APAS Baby Kiel

I met Em online, in our APAS Facebook support group>>. She was researching about APAS for a paper that she was working on and I shared to her my blog which basically outlined my RID journey.

Em is such a joy to talk to. She is full of energy and candor. She was kind enough to share to me her RID journey and all their difficulties going through all the treatments despite some financial challenges at the time that she was carrying Kiel.

It always amazes me how we can connect deeply with people in this day and age, without having to meet them personally. In my case, I share some of my daily musings and pains and joys with some of these APAS survivors even if I am yet to meet them face-to-face.

Her story will inspire those who are in the verge of losing hope because of financial worry. As I always say to those who reach out to me in this blog, for some reason and cliche as it may sound, God always provides.

Read on for the story of rainbow baby, Kiel <3

APAS Baby Kiel

– o –

Name: Emily

RID (repro-immuno disorder) Categories: 1 and 2

Immuno: Dr. Jovelina Abong

Age (optional or estimate, e.g. early thirties, late twenties) 34

How many pregnancies?  2

How many miscarriages?  1

Live births? 1

1. How did you know that you have RID?

I got married November 2012, and then by January, immediately pregnant na ako agad, akala ko okay lahat, ang bilis. We we’re building our own house tapos magkakababy na kame. PERFECT!

And then routine check up ko with my OB, wala sya. So lumipat ako sa ibang OB sa hospital na yon, (yung unang OB ko is not checking fetal heart rate). Pwede ko naman palipasin na lang at bumalik na lang pag andon na OB ko, pero naisip ko that day na sige lipat na muna ako ng ibang doctor para macheck lang si baby.

To my surprise, she is telling me na wala syang marinig na heart tone, sabe nya baka daw posterior yung placenta kaya nya di marinig. Pero gusto nya mag pa ultrasound na ako that day.

Nag pa ultrasound ako, and bilang nurse, habang ginagawa yung ultrasound, may idea na ako, walang sound. Tapos binasa ko report, fetal demise.

Gumuho ang mundo ko. Hindi ako mapatahan, ang sakit!

So tinawagan ko husband ko di ako mapatahan sabi ko wala na si Ethan. Nabigla din sya. That day after ultrasound dumating na yung original doctor ko, and I gave him the ultrasound (nasurprise sya na nagpaultrasound ako). Binigyan ako ng Cytotec  to put in the genital area and to take by mouth.

Nawalan ka na ng anak, pinahirapan ka pa.

I am not sure if this is the routine, but knowing this doctor hindi sya yung tipong “by the book” na doctor. Considering na 3 weeks ng patay ang baby ko sa tiyan ko, pinag labor pa ako. 1 week akong palakad lakad para maglabor, naka antibiotic na din ako non.

Alala ko pa sabe ng doctor ko, “di bale, try na lang ulet.” Buti di na ako bumalik sa kanya, I know same thing will happen again. After kong  ideliver yung baby kong una, hindi sya pwede sa sementeryo kasi less than 500 grams sya, kaya andito sya sa house namen, tinaniman ko, inaalagaan pa din namen.

After that, nagresearch ako napadpad nga ako sa forum sa female network about APAS. Wala pa akong idea, pero gusto ko malaman. Walang explanation bakit namatay baby ko considering na I am on my 5th month, no way di ako papayag ganon ganon na lang.

So nagpatest na ako, mahal! But other tests were covered by an insurance company, thank God. Yon nag positive nga ako for category 1 and 2.

2. What did you feel when you first found out you had RID?

Ang sakit! Iyak ako ng iyak, Iniisip ko what have I done wrong? Parang of all people ako pa talaga. Ang sakit ng fact na, sarili kong katawan ang dahilan bakit nawala ang baby ko. It haunted me for quite some time. Until na accept ko na.

3.  What preconception treatments did you have?

Aspirin. February 2014 lang ako nag pacheck up and nasa aspirin pa lang ako. Nirefer ako ng OB ko kay Dra. Aleta, but I can’t afford her. Kailangan ko talaga ng mas mura. I asked for her permission to get another immunologist. Dun ko nahanap si Dra. Abong, malapit pa sa amin. Sobrang bait at asikaso. Nag pa add pa sya ng iba pang tests for lupus. Tapos March pag balik ko, buntis na ako hindi pa ako naschedule for LIT. Kaya ang nangyari, every week akong nag LIT. Ang sakit sa bulsa, pero laban lang.

4.  What is the greatest challenge of having RID?

Challenge? Aside sa pera na talagang obvious na pbvious na challenge sa situation ko, yung ANXIETY at ka praningan. Despite medication, na papraning pa din ako, natatakot. Mas madami pa atang nadasal ko sa pregnancy ko kesa sa nadasal ko buong buhay ko. Dasal ng dasal talaga literal.

5. How long after the treatments did you get pregnant?

1 month on aspirin, I got pregnant. Wala din kasi sigurong problem sa conception, ang problem talaga is maintaining pregnancy.

6. What were your medications during pregnancy?

1st trimester Duphaston na ang mahal hahaha every hours!!!!! Candy? Lol. Also, aspirin and heparin.

7. Any advice to those who are diagnosed with RID and are still trying?

PRAY!! And learn to trust your self and your doctors. Basta sure lang kayo na sa tamang doctor kayo, go. Walang impossible sa Panginoon. And don’t be too hard on yourself! Mahirap pero kailangan din natin alagaan ang sarili naten. 

8. Please share your RID timeline. 

2013: First pregnancy

February 2014: February confirmed Category 1 and 2

March 2014: March pregnant, on heparin from day one of confirmation of pregnancy

March 2014: subchorionic bleeding, never put on bed rest duphaston lang every 6 hours. Weekly check up and ultrasound on first trimester, second trimester to third trimester every 2 weeks, with ultrasound also, may kasama pang Doppler ultrasound. I was on heparin the entire pregnancy. Na stop lang pala 1 week before scheduled CS. Namakyaw ng taho at soya milk, dahil hinahabol naming ang weight ng baby ko. With bilateral uterine artery notching the entire pregnancy kahit nakaheparin ako. Galit na galit ang katawan ko sa baby ko, but no, hindi kame nagpatalo. 

November 2014: Gave birth to my precious baby boy, who’s now 2 years old and 5 mos.

9. What is your greatest realization?

Napakabuti ng Panginoon, hindi nya kame pinabayaan in all aspects. Hindi nya ako binigyan ng category na kailangan ng IVIG dahil alam ni Lord d kaya ng budget.

Ang hirap ng pinagdaanan namin, siguro marami pang mas mahirap ang pinagdaanan, pero yung RID kasi kung normal ka lang ng empleyado just like me and my husband aaray ka talaga, but we prayed talaga na tulungan kame.

Tinulungan nya kame makahanap ng mga resources na makakatipid kame. Dinala nya ako sa doctor na afford namin. Imagine paid 56k sa isang magandang private room sa PGH, CS, and NICU ang baby ko for 4 hours!

What a blessing!

Mahal na mahal pala ako ng husband ko. Hahahha napaka supportive napaka alaga, hanggang ngayon. He would pray with me, cry with me, lahat! Dati iniisip ko kung iba siguro napangasawa nya mas madali ang buhay nya. But then again, kung iba siguro we would never learn how to love and support each on a different level.

10. What/Who helped you through this difficult time?

My husband, my parents, my husband’s parents, lahat buong pamilya namin, pero lalong lalo na ang husband ko. Yung pag intindi nya lang sa akin sapat na to make me somehow feel that everything will be fine. Sobrang praning kasi ako. He’s truly God’s gift. Feeling ko wala ng problema pa ang pwedeng dumating na hindi naming kakayanin.

11. Anything else you would want to share.

Trust your instinct. Malalaman mo kung may mali sa katawan mo. Like yung nangyari sa akin na try lang daw ulet sabi ng first OB ko, I know something’s not right. Mag research! Do your research, and wag mahiyang magtanong sa doctor. Pray pray napaka importante! Pray unceasingly to the Lord.  HE WILL NEVER FAIL YOU! <3

APAS Diaries: Baby Kiel

Thanks for sharing your story, Em.

Let me share this prayer, loves.

Psalm 107:1-10

Give thanks to the Lord, for he is good;
    his love endures forever.

Let the redeemed of the Lord tell their story—
    those he redeemed from the hand of the foe,
those he gathered from the lands,
    from east and west, from north and south.

Some wandered in desert wastelands,
    finding no way to a city where they could settle.
They were hungry and thirsty,
    and their lives ebbed away.
Then they cried out to the Lord in their trouble,
    and he delivered them from their distress.
He led them by a straight way
    to a city where they could settle.
Let them give thanks to the Lord for his unfailing love
    and his wonderful deeds for mankind,
for he satisfies the thirsty
    and fills the hungry with good things.

To The Mama of an Angel

I know how hard yesterday was for you, Mama!

And I want to send you the tightest, warmest hugs of all time.

To say that I know what you feel will be an understatement. I may have been in that boat some time back but our pains are never really the same, are they?

I know you wished for Mother’s Day to pass by quietly.

It is a terrible feeling. To wish that someone would also send you their greetings on this day.

The World’s Best Mom.

You know you can be. You were just not given the chance to. Or at least, not yet.

I know people around you treaded the waters ever so carefully yesterday. Especially yesterday.

And you understand.

You understand that they cannot greet you a Happy Mother’s Day, even if you believe that being a mother is not just about physically holding your child but the love that occupies your heart for your angels in heaven.

And when someone else does (greet you), it would probably create a bittersweet feeling that would tie your stomach into knots knowing that you could do more than just love them – you could have sung them a lullaby or given them a warm bath or snuggled them in your loving arms until they cringe out of breath.

You lock yourself in the bathroom, turn on the shower and pray that hopefully the soft pitter-patter can take all the aches away – wash away the tears until there is none left. And after a good day’s cry, you dry yourself up, give a final snort and tell yourself that the war is not yet over. As a mother (yes, you are, my love), we should never give up even if we wanted to.

Yes, Mama. Never ever give up. Because being a mom entails a never-surrender attitude. For what example do we set to our children (or future rainbow babies) if we would?

So Mama, please…

Dust yourself off and hold that head up high.

More than anyone, you are strongest.

One, two, three failures will not define you. I have a friend who have had five miscarriages but held on – she now holds a beautiful baby in her arms. I have another friend who gave birth to a still baby, carried her child for nine months but had to see her lifeless when she came out. She also did not give up and today, she enjoys every moment with her rainbow child.

These are just few of the many miracles that can happen in your life today.

They say it doesn’t get easier, Mama. But every day… each day of not giving up will make you stronger.

And this story of yours in the making, is something which you will treasure for the rest of your life – to tell your future child (and children!) about unconditional love…

…and the rest of the world, of steadfast hope that only a mother, like you, can hold in that tremendously big heart of yours.

So today, Mama, let me greet you – Happy Mother’s Day!

Cheers to you,  a mother to an angel. 

Let me pray with and for you…

Psalm 139

1 You have searched me, Lord,

    and you know me.

2 You know when I sit and when I rise;

    you perceive my thoughts from afar.

3You discern my going out and my lying down;

    you are familiar with all my ways.

4Before a word is on my tongue

    you, Lord, know it completely.

5You hem me in behind and before,

    and you lay your hand upon me.

6Such knowledge is too wonderful for me,

    too lofty for me to attain.

7Where can I go from your Spirit?

    Where can I flee from your presence?

8If I go up to the heavens, you are there;

    if I make my bed in the depths, you are there.

9If I rise on the wings of the dawn,

    if I settle on the far side of the sea,

10even there your hand will guide me,

    your right hand will hold me fast.

11If I say, “Surely the darkness will hide me

    and the light become night around me,”

12even the darkness will not be dark to you;

    the night will shine like the day,

    for darkness is as light to you.

13For you created my inmost being;

    you knit me together in my mother’s womb.

14I praise you because I am fearfully and wonderfully made;

    your works are wonderful,

    I know that full well.

15My frame was not hidden from you

    when I was made in the secret place,

    when I was woven together in the depths of the earth.

16Your eyes saw my unformed body;

    all the days ordained for me were written in your book

    before one of them came to be.

17How precious to me are your thoughts, God!

    How vast is the sum of them!

18Were I to count them,

    they would outnumber the grains of sand—

    when I awake, I am still with you.

Apas Diaries: Baby Bella – Try and Try Again

My heart dies a little every time I hear about a woman miscarrying.

I think there is no greater pain than losing a child – your child – regardless if he (or she) lived a great full life or if he was only a little floating embryo inside your uterus who was gone too soon to fly straight to the heavens.

It is devastating to undergo one miscarriage. I had two and it tore my life apart and my heart in million pieces.

But what if you’ve had three?

Or four?

Or even more?

I cannot and do not want to imagine the pain. 

I have been receiving several inquiries about RI disorder as of late and it saddens me to talk to women who, like me when I started this journey, are lost amidst this unpopular and infamous condition.

Like me, they are looking for answers.

But more than that, I think that they are looking for hope.

Hope that despite this seemingly bleak diagnosis, they will still be able to hold their rainbow baby somehow.

Let me tell you now —

Yes, APAS mommy, there is hope. 

How can I be so sure?

Because I know someone who has surpassed her repro-immuno issues after five devastating pregnancy losses and now wraps her arms around a beautiful baby girl.

Little Baby Bella

APAS Baby Bella’s story is the first of (hopefully) many APAS stories that I would like to share about conquering RI disorders.

During really dark times, it is good to find comfort that somehow things can still turn around – even if that comfort comes from a stranger like me.

– o – 

Today, let me share with you the wonderful story of Baby Bella’s mom – a strong and kind-hearted woman named Gracey.

I met Gracey in our online support group for APAS and other RI categories. To say that I exactly know her pain is presumptuous because I probably have not experienced half of what she and her husband braved through.

Nevertheless, a strong, invisible bond seems to unite us, APAS mommies.

I am blessed to have gained many friends to talk to about this journey (my soul APAS sisters) and one of them is Gracey.

She gave birth to her rainbow baby months before I had Santi so she was my favorite person to bug whenever I had newborn baby questions.

I haven’t met her personally. At least not yet. But I am looking forward to meet her and her family one of these days.

For now, I am more than honored to share the journey of this uber brave woman. Enjoy the story of Baby Bella’s mother –

Name: Gracey

RID (repro-immuno disorders) Categories: 1, 2 and 5 (To check the details of each category, click here>>)

OB/Perinatologist: Dr. Valerie Tiempo-Guinto

Immuno: Dr. Jovilia Abong

Age: 33 years old

How many pregnancies? Six pregnancies

How many miscarriages? Five miscarriages

Live births? One live birth

1.     How did you know that you have RID?

When I miscarried for the second time in June, 2008 (my first miscarriage (mc) was in November 2007), my OB at Metropolitan Hospital suspected me of having APAS so she referred me to Dr. Aleta. Due to budget constraints for the pricey lab tests, age (feeling too young pa that time at the age of 24) and lack of knowledge of the Doctor’s diagnosis, hubby and I decided to just change OB instead.

A friend of mine referred her OB to me at UST. This new OB requested us to have karyotyping test (result is normal) and sperm analysis for hubby (which is normal, too). Because the tests were all normal, new OB gave us a go signal to get pregnant.

Devastated, third pregnancy was still a fail even if she put me on aspirin prior and during pregnancy. Had to be at the operating room again for D&C in September 2009.

October 2010, I had another unexpected pregnancy.

Too scared to miscarry again, we searched the net to find another doctor, one that has full knowledge and can give us an explanation. Our search for an OB led us to Dr. Guinto, but too late, baby has no heartbeat (7weeks).

My fourth pregnancy was the first one to have a heartbeat (we named her Bianca). The joy of hearing that there’s a life inside you is incomparable and to not hear it again was like waking up from a beautiful dream. Felt like I woke up with nothing but darkness again. Saw myself for the fourth time inside operating room.

Dr. Guinto explained everything.

I had lab tests after, confirming I am positive under three RID categories (1, 2 and 5).

2.     What did you feel when you first found out you have RID?

I cannot absorb everything that time. It was too overwhelming, information overload.

Questions like, why me?

What have I done wrong to deserve this kind of pain?

Full of questions in my mind. But I know I should and must accept everything so we can start the treatment the soonest possible time.

3.     What preconception treatments did you have?

After my 4th mc (November 2010), lab tests to confirm my categories were done February of 2011. When we found out I’m under 3 categories out of 5 and realized how much money is needed for my treatment, we stopped for a year to at least save some budget.

August 2012, I started my LIT session. I had the usual four sessions. After the LIT treatments, my LAT increased to 89% from 0. We were given a go signal from immuno to try to conceive (TTC) again.

But for some reason, we did not. Until the 6-months validity of the LIT lapsed. Had two boosters just so my LAT score won’t drastically go down.

When we felt we were ready to get pregnant again, I resigned from work.

May 2014, I got pregnant. Kind of expected but unexpected.

Dr. Guinto wanted me to have IVIG but my immuno said my pregnancy can survive even without it because of my good body response to LIT.

And so on my 5th pregnancy, I had another 3 weekly sessions of LIT.

Since IVIG was not an option, Dr. Guinto insisted to at least be under intralipid. I got three intralipid infusions. She also put me on. 35ml prefilled syringe innohep, aspirin, and many other prenatal vitamins.

Sadly, my 5th pregnancy was still a fail.

D&C was never an option to Dr.  Guinto so we waited for the baby (we named him Lorenzo)  to just naturally come out. Imagine the emotional pain that I had to face again for the 5th time.

Fast forward, after exactly a year, I got pregnant.

June 27, 2015. She was exactly 5w4d. Dr. Guinto ordered for IVIG infusion asap. But because we didn’t have enough savings that time, the infusion went almost a week and a half delayed. IVIG infusion was done when we were exactly 7weeks.

4.     What is the greatest challenge of having RID?

Aside from budget (money), it is faith, questioning my faith.

Na-challenge nito ng sobra ang pananampalataya ko. Hindi ko alam kung magdadasal pa ba ako or what. I almost went to the point na feeling ko life is so unfair, nakalimutan na ba ako ng Diyos?

Saw myself one time in front of Mama Mary carrying Jesus, wala akong ibang nasabi kundi nais ko lang naman makarga din gaya ng imahe nila yung sarili kong anak.

Ganon lang kasimple pero bakit parang ang hirap mangyari.

5.     How long after the treatments did you get pregnant?

I can conceive easily even without treatment. Maintaining my pregnancy was our challenge.

6.    What were your medications during pregnancy?

On my 6th and only successful pregnancy, I was under .45ml prefilled syringe innohep from 5w4d until 7mons, 2ml heparin Britton from 7months to a day before CS delivery, aspirin, Duphaston, Isoxilan,  Utrogestan, folic acid, Caltrate, amino acids, 1 IVIG infusion (7weeks) and monthly intralipid infusions.

Dr. Guinto, on top of my confirmed RID categories, also considered me under category 3. In addition to my medicines, she also prescribed me to have prednisone (on my 6th pregnancy).

7.    Any advice to those who are diagnosed with RID and are still trying?

Huwag mawalan ng pag-asa.

Many times I doubted my very own happy ending, given the numbers of my losses but here I am now, gaya ng panalangin ko sa harap ng Mahal na Birheng Maria hawak ko na din ang anak ko, kagaya ng imahe nya buhat si Hesus.

Mararamdaman mo sa puso mo na ipagkakaloob sayo ng Diyos na magkaroon ng anak dahil kahit gusto na bumitaw ng isip mo dun sa thought of having a baby, hindi naman nawawalan ng pag-asa ang puso mo kasi dama mo ito.

8.     Please share your RID timeline.

November 2007 (1st mc)

June 2008 (2nd mc)

September 2009 (3rd mc)

November 2010 (4th mc)- all failed,  no treatment.

Had monthly LIT treatment from August 2012 to November 2012. May and June 2013 had LIT boosters. The 6-mons validity/efficacy of LIT lapsed December 2013. No treatment from there up to May 2014 (failed 5th pregnancy).

May 2015, my 6th and only successful pregnancy.

9.   What is your greatest realization?

To find the right doctor no matter how pricey her pf and lab tests are.

Wala kasi katumbas na halaga yung buhay ng pinakamamahal mong anak.

At yung hindi ang itinakda mong oras ang masusunod kundi ang sa Panginoon dahil walang mas higit na nakaaalam ng tama at magandang oras kundi Sya lamang.

10.  What/Who helped you through this difficult time?

Aside of course from the Lord, it is my husband who helped me get through this.

Pinasasalamatan ko sya ng buong puso at habang buhay sa pagsusumikap nyang maipagkaloob sa akin/ sa amin ang aming anak.

Kadalasan tayo ang pinasasalamatan ng ating mga asawa sa pagbibigay sa kanila ng anak, sa akin baligtad, sya yung pinasasalamatan ko kasi sya yung nagbigay daan para maisakatuparan yung pangarap ko na maging ina.

Mula sa nakalululang budget sa lahat ng treatment , sa pag-inject ng gamot sa tyan ko hanggang sa panganganak ko literal na nasa tabi ko sya.

Sa pag-unawa nya at pagtanggap sa kondisyon ko na ito, sa pagsuporta sa akin all the way, maraming maraming salamat sayo, Randy.

Napaka-blessed ko at ikaw ang ibinigay sa akin ni God na maging katuwang sa buhay.

11.  Anything else you would want to share.

Do not let other people’s non-sense opinion affect you.

Sa walong taon naming paghihintay kay Isabella, narinig ko na yata lahat ng pwede kong marinig. Iba’t ibang masasakit na opinyon at mapanghusgang mga mata– believe me, wala silang kayang gawin sayo as long as hindi mo sila ieentertain.

Live your life while waiting for your precious little one.

Don’t hide, don’t be too sad, don’t pity yourself because you are strong.

You were able to face life even with sadness in your heart.

You were able to pick up the pieces of you that were shattered when you lose your little one.

You were able to breathe again, to stand and continue living even if you knew that a part of you was gone too the moment you no longer hear your little one’s beating heart.

Do not ever forget that you are strong because the child that is fated to be with you needs you to be strong.

Do not give up.

I was crying when I was reading this.

There are heartaches. But there are big wins as well.

As what sis Gracey said… NEVER, EVER GIVE UP. 

APAS Baby Bella and Parents

I want to share this prayer with you, loves.

Psalm 37: 3-7

3 Trust in the Lord and do good;
dwell in the land and enjoy safe pasture.
4 Take delight in the Lord,
and he will give you the desires of your heart.
5 Commit your way to the Lord;
trust in him and he will do this:
6 He will make your righteous reward shine like the dawn,
your vindication like the noonday sun.
7 Be still before the Lord
and wait patiently for him;
do not fret when people succeed in their ways,
when they carry out their wicked schemes.

 

 

Awesome Photographers in Bacolod City

I am seldom home so I barely know who’s who in Bacolod City in terms of event suppliers, photographers and the like.

However, I think this is something that is more of a blessing to me than a curse because I get to discover  new names such as awesome photographers who are still below the radar but are so daaamn good!

Last week, my sisters and I planned a surprise party for my parents for the many blessings we are receiving – Edzel’s successful heart operation in January (still have not written about this), Tin (my sister) and her pregnancy, Mama’s birthday in February, Papa’s birthday and my birthday in April, and of course, Santi’s birthday in May.

Because my schedule for the party was already too tight, I did not want to spend too much time researching and negotiating with photographers I do not know.

Since I was running out of options, I contacted Ellaine directly, the other half of Maclaine Lights and Shadows>>.

I met Ellaine in 2015 when we were looking for a photographer for my sister’s wedding. She was recommended to me by my best friend whose family owned one of the top wedding planning companies in Bacolod, Personal Touches>>.

I had my utmost confidence with how Maclaine chronicled my sister’s special day. They were able to showcase the amazing love story of my sister and her fiancé- from the pre-nuptial sessions to the wedding day (which I was, unfortunately, not a part of because of my pregnancy condition but that is another story for some other time).

Check out the photos below and let these speak of their craft 🙂

Anyway, I asked Ellaine if they photograph kiddie parties and when she said yes, I was elated. However, she was not  available on the day of the surprise party (boo-huhuhu!). To my surprise, she referred me to Anne Acaso of Sunny Side Up Photography>>.

I browsed Anne’s Facebook Page and was pretty impressed. Our party was so simple though (no elaborate decorations and mostly DIY stuff by me and my sisters) so I never really expected that the photos would come out fabulous. But it did and I am one happy customer.

I feel so lucky to have met Ellaine and Anne and I am sure that I will be getting them again if I will need someone who can artistically capture the special moment of our Bacolodian happenings. I only wish I can fly them to Manila, too. Hehe.

Hope you get them in your next party, loves x

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