Happy number

133.

Today, Skye is 133 days old or 19 weeks.

133 is a happy number. If I add the squares of each digit and do the same for the corresponding sum and do the same for the next, the sequence ends in 1. That's the formula for happy numbers.

Math amazes me. And that's weird, coming from somebody who took Communication Arts because he did not like math. Math amazes me because it is exact.

But Skye amazes me more. Her extra chromosome made her condition exactly to be a Trisomy 18. Yet, Skye has defied the odds and survived beyond what was expected of her. Having her around for 133 days has brought us immense joy.

Indefinite. We don't know exactly how much longer Skye can stay with us. But we are sure it is somewhere between indefinite and infinite. If Skye lives for 10 to the nth power, that surely is a happy number forever.

Pretty in pink

Skye was pretty in pink when she met her neonatologist for the first time since she was discharged from the hospital, and for the last time since she would be referred to another pediatrician who practices near us.

Driving Skye all the way from Marikina to Manila is no mean feat. We bring with us her oxygen tanks and take extra precaution lest Skye contracts any virus that flies unseen around us. We are no germophobes but we simply don't want Skye to get sick.

The two-hour trip to Manila was problem-free. Skye was asleep the whole time. Kuya Heaven was his usual playful self.

Heaven and I did not get to go with Skye to see her doctor. We dropped off Nanay and Skye while we searched for a parking space. But we found ourselves just moving in circles looking for a place to park. Skye finished her appointment with her doctor in a jiffy and I had to be content with hearing the news from Nanay.

What good news it was! Skye's doctor was very jubilant to see Skye's progress.  Skye gained 400 grams, weighing now at 2.1 kilos. Her complexion is rosy enough, indicating no iron deficiency. Her lungs appear to be clear, without any infection. Skye is active, her limbs moving in bursts of energy.

The doctor recommended more frequent feeding sessions, making us worry about our milk supply. Aires is not lactating that much milk anymore and we rely on breast milk donations for Skye's sustenance.

But as we went home we set aside our worries. We held on the good news that Skye, so far, is in the pink of health.

Love letters

Dearest Skye,

You are now 110 days old.

Most parents count months. Your Nanay and I count days. This is how we accepted what God has given us.

We stopped asking why you were born with an extra chromosome. You are called a Trisomy 18 baby. One in 6,000 babies gets this condition for causes unknown to doctors. All they know is you are “incompatible with life.”  

You were still inside Nanay when doctors told us something was wrong. Nanay had too much water. You were too small. Your fists were clenched.

We cried after reading about Trisomy. We kept our hopes up but feared for the worst.

The fear became real. When you were born, your doctor asked my consent to put a tube into your mouth to help you breathe. I said “Yes.” I wanted to give you a chance even if the odds were against you. Trisomy 18 babies especially with heart problems do not make it. You have three holes in your heart. We did not know if you could make it.

You survived the first hour, day, week and month. You spent two months at the hospital. Your doctors were amazed how you fought for your life. One doctor thought you would live for only 45 days. I did not ask her how she calculated it. We were just too excited and anxious to take you home.

At home, we monitor your oxygen level, suction secretions and insert a feeding tube. We keep watch 24/7, taking note of your vital signs. We are humbled by the kindness of strangers who donate breastmilk. Their gift of nourishment has helped you reach your first 100 days.

Today, we continue counting. We treasure every second, minute, hour, day and night we have with you. We love you very much.

Dearest Kuya Heaven,

You are almost five years old now. We waited for you for six years.

You, however, can’t wait to have your next birthday party. You want a Ninja Turtles party. You will dress up as Leo. I will come as Master Splinter.

Though we argue every day, we end up every night praying for good dreams for you, good strength for me, good protection for Nanay and good health for Skye.

You are a wonderful Kuya to Skye. I feared before that you would become jealous of Skye but you held your own. You can’t wait for Skye to play with you. You always whisper to Skye to grow up fast so we all can go to Disneyland.

You will be in Senior Nursery soon. Thank you for making us proud. Thank you too for telling people that you take after your Tatay.

Dearest Nanay Aires,

You are the strongest woman I’ve ever known. You say you’re not but look at our children.

Heaven is as goal-oriented and Skye as resilient as you are. Knowing what you want and enduring life’s challenges are your strengths. Heaven claims he takes after me. But the truth is --- Heaven and Skye are a lot like you.

After Skye was born, my first thought was you. How would you take the news? But when you held my hand and said that you fully accepted what God gave to us, I just lost it. You let me cry. You said Skye was given to us to keep us together. She came when we were at our weakest, when we almost gave up on each other.

You are so strong that you made a leap of faith. You resigned from work to be with our children. Please don’t ever regret doing this.

You break down sometimes. You owe that to yourself. You asked me one night if I still get depressed. I also have these moments when I wished things were different.

But these moments have become brief and scant. I don’t want to dwell in the what-if’s of life. I just want to live a life with a special daughter, a smart son and a super woman --- one day at a time.

Love,

Tatay Nilo

Skye's first 100 days

When our son Heaven was born on July 26, 2008, we called him our miracle. My wife Aires and I waited for six years for Heaven.

When our daughter Skye was born on December 15, 2012, we called it a miracle that she survived her first hour. Aires and I waited if Skye would make it through.

Both Heaven and Skye are APAS babies. APAS stands for anti-phospolipid anti-body syndrome, common among women who have difficulty getting pregnant or carrying a full-term pregnancy. Aires endured countless reproductive immunologic treatments to see the pregnancies through. Heaven was born at 31 weeks; Skye at 34 weeks.

There was much excitement with Heaven. With Skye, trepidation. At 24 weeks, our doctors suspected a chromosomic disorder. Aires had too much amniotic fluid. Skye was too small for her gestational age. One particular ultrasound image revealed a clenched fist.

We Googled "clenched fist ultrasound pregnancy." The results were heart-breaking. For the first time, I came across the term, Trisomy. Trisomy refers to babies with an extra chromosome. There are many types of Trisomy. Skye's turned out to be Trisomy 18, a lethal trisomy.

The more we researched about Trisomy 18, the more uncertain we were about the pregnancy. Skye's condition was confirmed when she was born. Her neonatologist cited clinical impressions: small face, low-set ears, clenched fists, rockerbottom feet, weak cry. Only a chromosome analysis could confirm the condition. The test came two days later. The geneticist confirmed that Skye has Trisomy 18 or Edwards Syndrome. With it came another confirmation that Skye has three holes in her heart.

"Incompatible with life." This is the most common description for a Trisomy 18 baby. About 95% of them do not live beyond the first month. They die due to respiratory or heart problems.

Skye survived the first hour, first day, first week and first month. And now her first 100 days. We too have survived sleepless nights. All we wanted then was to take Skye home.

We no longer wait if Skye would make it through. We just treasure every second, minute, hour, day and night we have with her. To us, Skye is the miracle of all miracles.