Our princess, our angel, Sofia Ysabel, has been laid to rest. We thank everyone who sent their love and support to her throughout her short journey in this world. We’ll always remember her as the bravest little girl we’ve ever known. We love you, Sofia!!!
- Daddy Nhatz
The past 3 ½ months have taught us many lessons. We definitely learned a lot about the anatomy of the heart and how to raise a child with Down Syndrome. But there were other lessons as well.
- We learned humility. We thought that we were a young but stable family, able to handle the bumps in life well. We never thought we would face something as big as the challenge we faced the past 3 ½ months with Sofia in the NICU, not knowing when we would be able to take her home, not knowing how much our final bill would be, and not knowing how we would be able to pay for it all.
- We learned that things only happen according to his plan. We’ve been prepared for Sofia’s heart procedure since December. Her heart procedure was supposed to have happened last April 8. Yet even with all the careful planning we did with her doctors, her procedure could not be completed 3 months after.
- We deepened our faith. I would say we were both believers prior to Sofia, but untested ones. With each day’s uncertainty, what gave us the courage to stand by Sofia was the belief that one day God would make it all ok. That he could heal Sofia if he willed it, no matter what the complications. We needed to lean on Him.
- We learned that there were many good people in the world. Ever since I put up my blog, so many people, even people we didn’t know, would reach out to us to share their own experiences, usually with their children with Down or congenital heart disease. They would give us kind words, offer prayers or even financial support. God truly works his wonders through other people!
Sofia was a very special child. Her heart was very different and she had an extra chromosome 21, yes. But what made her really special was how siopao-cheeked she was and remained through all the complications she went through; how pink she was – no cyanotic indication of any heart disease; how active, alert and responsive she remained even through episodes of colon bleeding and infection; how heartily she sucked at her tubes before feeding time and before her procedures, like before she was stented and before she had her RBC tagging; how her own amazing strength gave us the courage to fight with and stand by her until the end; and most of all how she was able to endear herself to and inspire hundreds of people through her journey.
Some say she was not meant for us. I say she was, right from the start when I couldn’t believe I was pregnant because of how my cycle fell into place vis-a-vis my business trips last year. It’s just that she was not meant to stay on earth with us for long.
You’ll always be our princess and angel, Sofia Ysabel. We love you so, so much. We always will.
Family and Friends, Let me start by saying thank you. thank you, not just for being here now, but for being there for our family,most especially for our Sofia, all throughout this journey. Thank you to our family who has been our support ever since we found out about Sofia’s condition while still inside Trish’s womb. Thank you to our family, our friends and friends of family & friends who organized all sorts of stuff to help Sofia. Thank you to Sofia’s doctors and nurses who really treated Sofia as their own. Thank you for being her caring parents/brothers/sisters at times when we were not with her. We are overwhelmed by all the love and support that we received from everyone, even from total strangers. Truly, God works his wonders in mysterious ways.
To our dear Little princess, thank you very much for coming into our lives. 3 1/2 months is way too short but I’ll cherish every second of it that I spent with you. It’s very hard for me to say goodbye when I’m still warming up to our hello. I haven’t held you enough, I haven’t cared for you enough, I feel I haven’t been a father for you enough. I just hope that in the short time that you spent with us, you felt that I have loved you enough. I’ll miss the times when I read stories to you and you fall asleep while I’m stroking your chest. But I’m comforted by the thought that when I read the same stories to your kuyas, you’ll be there laughing and giggling with us.
Thank you for teaching us that life is beautiful and worth fighting for. You’ve taught us that in this life, it doesnt matter who you are or what you have, that everyone or anyone deserves the chance to live. You’re the bravest little girl I’ve ever known. You’re daddy’s little girl. I’m so proud of you.
Thank you, dear princess, for opening our eyes to the reality that no matter how you plan for anything in this world, it is always Gods will that prevails. thank you for letting us grow closer to God.
As we pray Angel of God at night, Sofia, we know that from now on, that Angel is you. We thank God for giving you to us as our very own Angel, our guardian. the one who will be at our side, to light and guard, to rule and guide.
Know that Daddy Nhatz, Mommy Trish, Kuya Yoachim and Kuya Tyler love you very, very much. I know you will help us move on but I promise that you’ll be remembered forever.
You’ve fought a good fight, honey and I cant be any more proud of you than I am now. There are No more needles, no more probes. It’s time to rest now.
I won’t say goodbye, Sofia coz you will always be with us. I’ll just say the same words I tell you when mom and dad leave you for the day to go back home to your kuyas … GOODNIGHT SOFIA, I LOVE YOU VERY MUCH …. SEE YOU LATER!
This is the day
This is the day
That the Lord has made
That the Lord has made
There will be a mass at the main chapel of Christ the King Greenmeadows at 8 am tomorrow (Friday). Interment at Heritage Park along C5/Fort will follow.
Dear Sofia,
Last night I dreamt about you. Your respirator was removed and Dra. Alma allowed us to take you out for lunch. I was wearing my red nursing dress and was able to breastfeed you as we walked back.
I love you so, so much.
Mommy
I took a pill to stop lactating today. Thanks to NICU batchmate Marj who told me there was such a thing. My body hasn’t learned that Sofia has gone to heaven. 
The engorgement is a painful reminder that my body still expects to be nursing our beloved princess. I wasn’t sure how much pumping and for how long would be just right to relieve me but not stimulate more milk production. The term q3 kept entering my head – it was the term the nurses used for Sofia’s feeding schedule, which was every 3hrs.
I’ve been expressing milk for Sofia from the day she was born. I cherish the 1-2 weeks in April when I was able to breastfeed her directly at the NICU. The rest of the time it was pump, pump, pump. I don’t think any mom would ever call it a pleasant task, but it was the least I could do to provide Sofia with the best kind of food she could have. It was like lather, rinse, repeat – a pump-drink water-urinate cycle that could easily take up your time and make you wonder how the day went by so quickly; one that you have to schedule your other activities around.
I was able to build a modest stash for Sofia as there were times when she couldn’t take anything orally like when she was being prepared for a procedure or when she bled. Her fluid intake was also reduced when she had kidney failure and eventually we started adding Human Milk Fortifier (didn’t even know there was such a thing!) to my expressed milk to give her more calories with her limited fluid intake.
Soon after we rushed Sofia back to the hospital we explained to our boys that she was very sick. Yoachim innocently asked later if we would be giving my stash to a niece who was just a month older than Sofia, since Sofia wouldn’t be needing it anymore. I don’t remember which happened first anymore but about this time our refrigerator’s compressor also broke and I had to dispose of a good amount of frozen milk.
I pumped in the car so I could be free to do other things at home and at St. Luke’s. I’ve pumped at the Operating Room waiting area for the two times she had a Tenchoff catheter placed for her peritoneal dialysis, at the Cath Lab waiting area while she was being stented, and at the Nuclear Medicine waiting area while she was undergoing RBC tagging to find where she was pooping blood from. All this with the help of the hot pink nursing cover my projectmates gave me for Sofia’s baby shower, the cover that I wished so many times had Sofia underneath it instead of my Ameda pump.
It is September 24 as I finally fill up this placeholder…
It was around midnight of July 24 when we were making arrangements as a result of Sofia’s passing. I didn’t actually make any of the arrangements, I was just there. Nhatz and our dear family members who had rushed to the hospital to be with us managed all the arrangements, which we couldn’t really make a lot of during the wee hours of a Sunday morning.
It broke my heart to see Sofia put in that royal blue baby body bag. The color reminded me copper sulfate from our high school chemistry. Anyway, it seemed like it was just about the size of a regular envelope. She hardly made a bump inside it. It looked like you could tuck it under your arm to carry around. As she was wheeled to the morgue, I’m sure nobody suspected that there was a baby inside. I don’t ever want to own a royal blue envelope for anything. We called Fr. Silva, the in-house priest who had baptized her, to bless her one last time.
The only arrangements we could confirm was the funeral parlor. Someone in the family had a memorial plan but it was for cremation, and we didn’t want that for her. We had to wake until daytime to make her wake arrangements and find her body a final resting place. Nhatz and my sister-in-law, Ate Weng, went to the funeral parlor with Sofia. I was thankful because I didn’t really want to go and have to deal with whatever discussions needed to be held with them. My parents dropped me off at our house and took the two boys home with them. I announced Sofia’s passing and then slept, physically and emotionally exhausted.
My brother, Gabby, and his wife, Mench, picked me up mid-morning. Mench and I were to shop for Sofia’s last dress. It had always been my dream to be able to shop for my own little girl. It broke my heart to do so in this context.
We went to a mall. Nhatz texted to remind me to buy her a white headband. He had always wanted to put a headband on Sofia, partly because it would be cute but also so that if we took her out and she was in unisex clothing people wouldn’t mistake her for a boy. I found a headband for her but couldn’t find any dress I truly thought fitting. The white dress I almost settled for was cotton that was a little bit too thin. I was torn between being practical vs. searching some more. I decided I wanted to do her right. She was our princess and I would never shop for her again. The only clothes of her own she had ever worn were the pink tie-side and shorts set she went home with, and the white tie-side and shorts she wore back to the hospital the next day. Before that she was in NICU tie-sides. After that she was just in a diaper.
We went to another mall and that’s where we found the dress that I felt was just right. It’s amazingly hard to find a plain white dress that doesn’t look like baptismal attire. The dress was sleeveless and sized for an older baby, with dainty pleats on the top half. It looked like a not-so-sleeveless, proper, long dress for Sofia.
My mom made the reservations for the wake at Christ the King Church as we met up with Nhatz and Ate Weng at the funeral parlor. When I saw Sofia for the first time, it struck me how she looked like one of those baby dolls. Now I don’t ever want to see any baby doll. I was relieved that her make-up looked natural. I had worried about that and had even considered micro-managing that bit.
We followed the funeral parlor’s vehicle as Sofia was transferred to Christ the King. It took only one person to carry Sofia’s coffin into the viewing room. Family members took care of renting a water dispenser (who knew these viewing halls didn’t come with them?) and making sure we had food.
I called my parents’ house to check on the boys. How’s Sofia? Yoachim asked. What? I answered, unsure I had heard right. He then asked if Sofia was buried already. Oh, so that’s what he meant. I had tried to explain the whole wake-then-burial concept to him the previous night but I think it flew over his head. I explained that we would be with Sofia’s at Christ the King for a few days first and then we would bury her body. I spoke with Tyler, who up to now had no clue about Sofia’s passing, since he had slept through all the activity of the previous night. I did not mention it yet.
When they finally arrived at Christ the King, Yoachim ran to take a look at Sofia while Nhatz carried Tyler to do the same. Tyler said a gentle “Hi, Sofia” that broke my heart once more. We explained to him that the real Sofia was in heaven now, that this was just her body, that she didn’t need it anymore. We explained, as we had to Yoachim, the wake and burial, without really going into the details of the burial. It was only after we had shown and explained all this to Yoachim and Tyler that we announced the wake details.
As the kids ran around the big viewing room, Yoachim would often stop to peer at Sofia or just sit and play near her. Tyler would sometimes ask for help so he could take a look too. We were a bit nervous that they would topple the coffin over but Nhatz commented that at least Sofia was surrounded by the happy sound of her innocent brothers and cousins laughing and playing – a break from the constant beeps at the NICU.
Dearest Sofia,
I thought it would be just another Saturday.
I took your kuyas for a check-up while Daddy went straight to the NICU to be with you. He texted me not to bring them in to see you through the window as usual. Too much activity around you – you were being toxic, i.e. requiring a lot of attention. They were (ambu) bagging you.
It was scary but I still thought it would be ok, you’ve been like this before, scared us so many times before. Your kuyas were parked in the waiting area. I pumped milk for you. Kuya Yoachim texted me and Dad to come out, we both asked him to please wait as we were busy. Daddy didn’t want to leave you, not even for a minute. I texted people for extra prayers.
Around 5:30 pm I was so distraught, I rushed to the chapel, ran to the Father. I didn’t realize there would be a mass. I sat through its remaining half, tears streaming down my face. After almost everyone had left and the priest, Fr. Cesar, was leaving, I caught his attention. We spoke in the privacy of the office behind the altar. I was shaking and sobbing as I told him that you were not really responding to the bagging as you used to. Your oxygen saturation levels were not going up.
He talked to me about God’s will, acceptance whatever arose, though he acknowledged it would always be difficult to accept the worst case scenario. He talked to me about taking care of your kuyas. I told him I would accept it when I had to. That has always been my stand. I really begged God to let you come home with us through the last hour.
As the evening drew, your Dad and I prepared for an all-nighter of a vigil, which we have done with you a few times before, either when you were recovering from a procedure or just being toxic.We asked Lolo and Lola to pick up your kuyas. You stabilized a bit. Nurse Pam reassured me, ok lang, mommy. Matagal ka nang hindi pinaiyak ni Sofia. (It’s ok, Mommy. It has been long since Sofia last made you cry.)
While we were watching you, Daddy whispered to me that your heart rate was low. Babies’ heart rates are in the mid-100s. Yours registered in the 50s. I didn’t believe it since it was usually just the probe not getting a good reading. I asked Doc Abi what your heart rate was. They usually declared it normal after taking it manually. She said it was in the 60s. Stomach knots. I worried for your life. But I also worried that if you lived like I was still praying you would, that your reduced blood and oxygen flow the past hours might already be impacting your brain and other organs. That’s what hurt your good kidney, right?
Dad and I decided we should take turns eating. He had barely gone down, around 8 pm, when Doc Abi started pumping your chest. My hopes crashed. I debated telling him vs. letting him have a good break for dinner. I barraged him with text messages. “Doc Abi is pumping Sofia’s chest.” “Doc Alma is here.” His food had just arrived. “Pabalot mo na lang. (Have it wrapped.) Scary here.”
Your Dad watched as they worked on you. Bagging. Pumping. I don’t remember anymore when I posted a frantic pray pray pray pray pray pray pray message in facebook. After some time, Doc Alma called me and said softly, malapit na (it’s near). She prepared to have us carry you. She knew that was my wish – I texted her that after you scared us with bloody poop. But when you bounced back that time I decided against rocking the boat, because they would need to bag you manually in order for me to carry you.
Yes, that was my wish. Ever since we rushed you back to the hospital I have longed to carry you but I couldn’t because you were on the ventilator. And it was my wish that if I couldn’t take you home, that I could at least have a chance to carry you. They disconnected your IV and peritoneal dialysis. Your dad and I took turns carrying you, talking to you, touching you, kissing you everywhere. At first they were still bagging you while you were in our arms. We talked about having Lolo and Lola bring your kuyas back to the hospital so they would hear it from us. I texted Lola that we were losing you, to have your kuyas come.
You were in my arms as you peacefully took your last breath…
While the grief is great, your Dad and I are, in a sense, consoled/happy that it happened the way it did. That we were there during your final hours. That we got to hold and kiss you. That it happened peacefully. No hint of pain. It was like you were just sleeping through all the activity around you.
We called home so that Lolo and Lola could bring your kuyas over. They had not noticed my previous texts. We wanted to be the ones to let them know since we thought it would be scary to hear, or worse, overhear, it from someone else. We wanted them to see you first. Kuya Yoachim was suspicious, asking why they had to go back to the hospital. I gave him all sorts of inadequate answers, something like to just come, to talk, so we could show him something.
When they got to the hospital, Kuya Tyler was fast asleep and wouldn’t wake up with any of our prodding. We told Kuya Yoachim you had gone to heaven. We had him see you there one last time. Tears rolled down his cheeks and then he asked for Daddy’s cell phone. Thank goodness for that phone that kept him entertained in the succeeding hours. It must have been a few hours later when he said, I knew Sofia was dead when you said Dad was carrying her. Because you don’t really carry her.
I love you, huny.
- Mommy
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