January 23rd is…

January 23, 2012 is…

the Chinese New Year;
the feast day of St. Pio, celebrated every 23rd of the month;
Sofia’s 6th month in heaven.

Our plan for today was to hear mass at St. Pio Center and then head out to BGC to get some Chinese lunch, get Yoachim a Pokemon graphic novel at Fully Booked, and hopefully catch a dragon dance.

Visiting Sofia was not part of the original plan as we had just visited her yesterday. I also don’t like commemorating that thing that happened 6 months ago though I remember it often. However, at mass, the song played at her funeral (Power of Your Love?) was played. *emotional faucet on* We decided to visit Sofia. I read somewhere that coincidence is what happens when you stop praying. She wanted us to visit.

We had lunch at Henry’s, Burgos Circle, saw the dragons dance in and around the restaurants there, then went on our book errand. We allowed Tyler to go down with me to buy flowers for Sofia. This has erstwhile been my sole undertaking while everyone else waited in the car, in the interest of getting the job done fast. He chose white and green carnations, which went pretty well with the light yellowish carnations with reddish tips that we got for her yesterday.

At Heritage, Yoachim read his book while Tyler got busy with my phone camera. He took pictures of everything including the grass and the soil and bugs underneath the vase that we got for Sofia last week.

On our way home, Yoachim asked that Kung Fu Fighting be played. I selected the song from our playlist and saw that Sofia’s song, Just the Way You Are, was just ahead of it. I turned on the shuffle feature. Guess what, Just the Way You Are played next. Yoachim complained that he doesn’t get to choose the songs. I replied that I didn’t choose the song either, the playlist was on shuffle. It was Sofia’s choice. After all, we don’t believe in coincidence, do we?

 

Innocent Questions

Tyler asked me this in the middle of mass last Sunday. Mom, when babies come out of you, do they die? I said no, look at you and Kuya. Sofia’s heart was just very different.

Death may be something people avoid discussing with their young kids until they have to. In our family, it has become just another topic subject to their natural curiosity.

Death and heaven – Yoachim asked me the other day what it felt like to be in heaven, he wanted to go to heaven. I said that should be everyone’s goal. Do people eat or sleep or play or fly in heaven? I said eating and sleeping were bodily needs so probably not. Playing, maybe. Flying, yes. What else are wings for?

 

For Amber

A year ago, a baby named Amber had her successful hybrid procedure for her hypoplastic left heart syndrome (HLHS) at St. Luke’s QC. I felt like it was a lucky day – my mom’s birthday to boot!

I was very happy to learn the procedure went well as it was the first successful hybrid procedure done in the Philippines. HLHS is a rare 1-in-10,000 jackpot!-your-baby-has-it disease. Because of that, and the unwillingness of many Filipinos to go for the hybrid procedure due to whatever combination of reasons, uncertainty and financials included, there have only been a couple of chances to attempt this procedure in the country.

Amber’s successful operation reassured us that we had the controllables taken cared of – we had the right doctors (with very good international credentials!) and the right hospital. Everything else would be up to God.

The treatment plan for Amber and Sofia started out the same – a series of 3 procedures between soon after birth and age 3. Sadly, Amber did not survive long after the second operation, the Glenn. Sofia had her own twists and turns and so only went through the stenting part of the hybrid operation.

Belated happy birthday, Amber! I will always remember you. Your birthdate and your hybrid procedure date. The day your successful hybrid was on TV – my mom called me excitedly and guess where I was, 6 months pregnant and confined at St. Luke’s  for hypotension or whatever (a whole other story). I watched the news from the OB Department and visited you at the NICU Isolation Room upon my discharge the next day.

I will always remember the day of your Glenn procedure, too. It was Sofia’s turn in the NICU Isolation Room and you were big enough to be upstairs in the PICU. Your former NICU nurses were all rooting for you and saddened when the news of your passing broke.

Here’s an ABS-CBN news clip on Amber’s hybrid procedure: http://www.abs-cbnnews.com/video/nation/metro-manila/01/25/11/baby-survives-heart-surgery

 

Medical Supplies Dream

Last night, I had a vivid dream. I was in the NICU’s Isolation Room where Sofia had stayed for 3 months, going through a long list of of medical supplies – ones Sofia had used – with a nurse. I was ordering 2 sets of each – one for giving away and the second one, I wasn’t really sure what for, as I was aware that Sofia had already passed.

I ordered 2 weighing scales. There were stocks of black and blue weighing scales on top of the white wooden shelves of some supply room. They looked like the ones used for weighing produce. Nhatz had searched high and low in July for a scale from which we could hang Sofia’s dialysate bag when she switched to Baxter. No, these were not the appropriate scales, but in my dream it seemed like I was relieved there were scales in stock.

I had many, many reminders of Sofia yesterday as we had a belated holiday clan gathering for my father’s side of the family. E.g. I took a video of a nephew bouncing sprawled on an exercise ball. I uploaded it to our family Facebook page and was puzzled when I couldn’t see it on the wall. I went into the photo/video folder and was surprised to see the Sofia videos I had posted in April staring back at me.

But maybe the reminder that prompted my dream was when we went looking for Betadine for a wound Yoachim got on his toe and found Sofia’s leftover Betadine. The hospital had us take it home, along with other supplies, when she was first discharged.

I’ve discreetly had the boys use up her Lactacyd baby wash. We still have her bottle of ethyl alcohol though – complete with the little pink label bearing her first bed number, NS36, and last name.

 

2011 sofiaysabel WordPress Report

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 53,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 20 sold-out performances for that many people to see it.

Click here to see the complete report.

 

Happy 9th, Sofia!

Happy 9th month, Sofia! How are you? I miss you so much. I sometimes imagine you bouncing happily on my lap…

How did you like the holidays? I bet you enjoy watching the ruckus your brothers make, amplified when with cousins. Kuya Yoachim put some small toys he got for Christmas in a Gatorade bottle. He even created a label with drawings for the bottle – he’s good with things like that. Your dad and I had no idea what those toys were, he said they were Go Gos Crazy Bones. Duh. Anyway, the bottle of toys made for a good noisemaker so by New Year he and Kuya Tyler had split the Go Gos into two Gatorade bottles so they could both make a lot of noise.

Kuya Tyler always talks about you. He randomly says he wishes you were alive or say that the empty chair in the restaurant table is yours. He always includes you when we do headcounts. He’s a very sweet kuya. We call him Kuya Tyler. He’s proud of being a kuya and he’s a kuya because of you!

Tita Natt, Tito Roan, Kuya Pepe and Ate Coco visited you the day before your birthday. They spent the holidays here from Singapore. They were your main source of Human Milk Fortifier, remember? Kuya Pepe is Kuya Tyler’s age. He prayed for you a lot too.

Their Christmas gifts included mascara for me. I told Tita Natt I wasn’t sure yet when I could confidently wear it because I easily tear up when remembering or talking about you. We’ll see. Pray to ease my pain and your dad’s, will you?

This is all for now. Sorry this post is a bit late. I had 2 conference calls last Wednesday night and just wanted to sleep after. They weren’t really late, I’m just trying to get enough sleep.

Love you,
Mommy

 

Isn’t it Ironic?

When we’re at our happiest, that’s also when I miss Sofia most…

 

Merry Christmas?

Deep. Red. With a little bit of flounce. That’s how I always imagined your Christmas dress would be. We had some errands at the mall yesterday and I did my very best to look away from the little girl dresses lest I find one that fit my vision for you.

Today is your 8th month birthday. It also marks the 1st year anniversary of that horrific 3-hr ultrasound experience when your HLHS was detected. Felt like a truck fell on us.

While I was buying your bouquet the blind band at Market! Market! seemed to be mocking me with their back to back renditions of I’ll be Home for Christmas and Pasko na Sinta Ko.

The other week Kuya Tyler was kicking dirt around your marker. He said he wanted to dig because he wanted to see you again. We hope you like that your marker has your picture now, btw.

Pasko na, sinta ko, hanap-hanap kita.

You’ll be home for Christmas, if only in my dreams.

Happy 8th month, baby. We all miss you. It hasn’t gotten easier for me & Dad.

 

Happy 7th, Sofia…

This was taken over the 4-day weekend… the first time I really held vigil at any cemetery for All Soul’s Day. We usually make the rounds the weekend before or after to avoid the crowd, but this time we wanted to be with our angel. The white roses in the bouquet were “prescribed” by her doctor.

An angel marks our angel's spot...

These were the pretty, colorful flowers I had arranged for her 7th month.

7th month flowers

I hope you like all the flowers we pick for you, Sofia… happy 7th month.

 

Financial Preparedness for Major Illness

Aside from the emotional toll when a loved one has a major illness, there is the financial toll. You want to do everything it takes to give your loved one the best chance of recovery, or the best quality of life if full recovery is not an option. The costs can quickly escalate, esp. with a long confinement or with treatments like chemo.

I think one of the most basic things you can do is get good HMO or medical insurance coverage. Make sure your loved ones have it too.

The other thing is life insurance with accelerated major disease coverage. This means that instead of waiting for you to die, if you get one of the major diseases covered, you can get the money to help with the cost of managing the disease. The contract will have a list of covered diseases.

The earlier you get this, the better. Your insurance premium goes up as you age. You could also develop medical conditions that can cause related illnesses to be excluded from your coverage.

TIP TO LADIES OF CHILD-BEARING AGE: There are insurance products that provide benefits should your baby have to be confined after birth or if your baby comes out with congenital disease. This is pretty good coverage to have because the health plans I know of do not provide coverage until after the 14th day of life. There is also minimal, if any, coverage for congenital diseases. I did not get this kind of coverage, though it had been offered to me twice before. You just don’t think you will have a baby with congenital disease, but it happens more than you think. Had I gotten this, it could have helped me a good P200,000.00 for Sofia’s expenses.

Don’t fret if you feel like you have limited budget for this kind of insurance right now. Some coverage is better than no coverage. You can buy more coverage later.

Disclaimer #1: This will likely not cover all of your expenses, but it can offer substantial support.

Disclaimer #2: I am not an insurance expert. Talk to a sincere insurance expert for advice. Let me know if you want me to connect you with a sincere insurance agent.