follow

Read the Blog

CONNECT

NAVIGATE

the story of alphonse | part 2

Filed in: Alphonse

alphonse10

First of all, thank you for all the kind words and encouragement you left on my post last week when I finally had the courage to share Alphonse’s story to the world for the first time. Our family appreciate all of your comments, Thank you so much! I’m sorry if I haven’t replied to any of it yet but I sure have read each and every single one of them. I intend to leave my replies to some who have questions and comments waiting for answers.

Allow me to recall the days that have passed.

WARNING: Some photos in this post are disturbing and some people might find it inappropriate to post. However, I was able to understand what we are about to go through because of other people’s stories so I decided to share ours wholeheartedly, letting you know every little detail of it so others who will face the same predicament will learn from what we have been through. 

The  News that Broke Our Hearts

When he came out, Alphonse isn’t crying at all and he had a lot of secretions. We knew nothing. When my doctors told us the shattering news, they never told us about Alphonse’s condition first. They told us about him having a hole in his heart and that he needed to be checked by a pediatric cardiologist to confirm the diagnosis. It was then followed by the Down Syndrome diagnosis. What more can a mother get? It was such a heart breaking day.

But wait, there’s more! As if the news isn’t traumatic enough. When we met with A’s cardiologist, we were told that he has TOF or Tetralogy of Fallot, a congenital heart disease that involves four anatomical abnormalities of the heart. And that surgery is immediately needed to repair the heart. The tremendous problem is the cost. We were given an initial estimate of $12,500 in case we decided to go to a public hospital. We initially took the public hospital route since it is cheaper than the private one.

iheart_preview

We Needed Help

Because the cost of the surgery is way too high for us to shoulder in one blow, I decided to come out and ask for help from everyone to buy my products and avail of my design services just so I can help my husband raise the money that we need. Because, in our country, you don’t get the surgery you need unless you pay for it. And because that time, we don’t have the means to get that amount in such a short period of time.

But the digital scrapbook community gave even more! People started contacting me privately for donations instead of buying my products which will entail taxes and all. The  overwhelming response from the digital community prompted me to I give out my paypal and bank account in public so that those who want to help my little boy can do so. My Pixels and Company boss, Gennifer Bursett offered to do a charity collaboration and proceeds will go straight to Alphonse. Other store owners carried the beautiful collab in their stores while other designers offered their own kits on sale to be able to help. Then, designer Diane Rigdon suggested I try a public donation site called Indiegogo (which we did and where we get the most amount donated). WE FELT THE LOVE. And I know that A knew how much the people loved him too.

My blogger friends, old classmates, schoolmates, co-workers and even total strangers helped us too! We received personal donations and some relatives and friends even had their own campaign which benefited our baby. I know I will not be able to thank all of you personally but do know that our family will always be indebted to you.

Before the surgery, I was briefed about what to expect and was informed about the cost with comparison between public and private hospitals. To my shock, I learned that if we go to a public hospital, I will be responsible in providing (literally) everything during his confinement – from the surgical blades down to rubbing alcohol. And trust me, when you are a mom who just gave birth and still trying to breathe from shock and everything that is happening, you will not add another burden on your shoulders when you have the means to choose the better route. And because of you, we made it possible for him to have his surgery done in a private, more equipped hospital.

alphonse9

The Surgery

We came in to the hospital 4 days before the surgery. A will need a lot of tests prior to that day. He cried a lot and that was the first time I ever heard him cry. He is in pain – from all the poking of needles into his tiny body. He was just 6 weeks old. I understand that interns are necessary to have skilled doctors in the future but those days when interns kept on poking needles into his veins were the most dreadful days in my entire life. It is unbearable.

Finally, he was cleared and good to go for surgery.

The time has come.

alphonse7

I took one final picture of his unscarred chest. Yes, he also had umbilical hernia.

alphonse12

I brought Alphonse to the operating room. My mom was crying in the hospital room. I’m NOT. I knew I am stronger. Or so I thought. The moment I handed him down the operating bed and the moment I saw him passed out because of anesthesia, tears started running down my face like waterfalls. It was time for me to leave him to the surgeon. I went straight to the restroom to cry alone. I felt alone. I felt like the whole world is falling apart – again. I kept holding on to the shirt  he wore before the procedure, until he’s back in my arms again.

alphonse11

I left him in the OR at 7:30AM and I was called for an update at past 3:00 in the afternoon. It was that long. I came to see the doctor and was informed that the surgery was successful but they had to put a pacemaker because the heart isn’t beating on its own.

Another devastating news.

I went back to our room – QUIET. I never talked. I stopped talking the moment I stepped back inside the hospital room, leaving A in the OR. I talk on my Facebook wall. I post my updates. I never wanted to answer anybody at that moment. Not even my own mother.

I was called in after an hour and I sarcastically asked the doctor if he can give me any good news. To which he replied OK.

Alphonse is breathing on his own. He no longer needs the pacemaker.

It was a relief. Finally.

But the battle isn’t over. After he was transferred to NICU isolation, he had pneumonia on the 3rd day. His left lung collapsed and he had to undergo several x-rays on intervals to make sure the pneumonia isn’t causing him more complications. With early detection of his doctors and early treatment, he did well. I have been very vigilant from that day on. From medicines to feeding to nurses and staffs getting in and out of his room. Being a paranoid mom isn’t an easy job but I’d take that to make sure my baby is safe.

alphonse13

alphonse14

alphonse15

Back in My Arms

He was out of the NICU on February 19th. The 3 days at NICU that I was initially informed became 5 days but during that time, it felt like forever. I decided not to give up on our hospital room so I can make sure to pump necessary breastmilk for his feeding time and deliver it quickly to him. But after those gruelling days of waiting and uncertainty, he is back in my arms. Words aren’t enough to describe how I felt seeing and holding him in my arms again. It was the warmest feeling I’ve ever had and I will never forget that moment.

alphonse16

February 22nd, I took this picture. He’s now awake. He’s no longer on sedatives so he’s back with a smile on his face. But because of the pneumonia and surgery combined, he needed to take a lot of antibiotics to make sure his recovery will go on smoothly. The effect, however, was diarrhea. And it was bad, he’s crying in pain whenever I had to change his diapers and I had to put a thick cream just so he won’t feel sore. It went like that for a few days.

alphonse17

alphonse18

alphonse21

These were the scars from his surgery. These are unforgettable reminders about how Alphonse first saw the world filled with challenge. And he fought well. He went out victorious and he is now thriving and we owe it all – to YOU!

His journey continues.

comments +

  1. Cairn

    October 2nd, 2013 at 4:08 pm

    Thank you so much for sharing your story! I look forward to more updates. He is one very special little boy! Lots of hugs to you for all you had to endure as well. I know it isn’t easy.

  2. Maya

    October 2nd, 2013 at 4:10 pm

    You are truly blessed.

  3. patricia braun

    October 2nd, 2013 at 5:23 pm

    The hardest thing I ever had to do was hand my 8 lb, 10 week old son over for open heart surgery, wondering if I would see him alive again. Your pictures and story bring back a lot of memories, and tears. Thanks for sharing your story. Stay strong!

  4. Donna P. (djp332)

    October 2nd, 2013 at 5:30 pm

    Thanks for sharing your story! I’m not so sure I would be as strong as you have been.

  5. Linda

    October 2nd, 2013 at 9:48 pm

    Thank you. I believe.

  6. Mye De Leon

    October 2nd, 2013 at 9:52 pm

    Thank you so much! Your support has always made it possible for me and baby A to carry on.
    @Patricia Braun – it wasn’t easy to hand over a baby to the doctors right? I had that exact feeling when I left him.

  7. neva | manilamomy

    October 3rd, 2013 at 3:38 pm

    ooh mye!! i’m in tears right now. i’m doing a post about you and came over here to link you up and didn’t expect alphonse’s story. thank you so much for sharing your story. i am so happy that we met at changi and that i was able to meet your darling boy. you and your family are always in my thoughts and prayers. i pray that alphonse’s ear surgery would be successful.
    hope to see you soon!

    love always,

    team noah

  8. Mye and Alphonse

    October 3rd, 2013 at 4:07 pm

    […] has written about Alphonse’s birth story and diagnosis here and here. Get your tissues […]

  9. Camilla

    June 29th, 2014 at 2:43 am

    While looking around for over fifty years in the school busgrowth of the water can cause shocks or fires.
    It’s best to check the licensing department said it was supposed to work out accordingly.
    An independent contractor does not supply the materials to be paid up.

    Here is my webpage website (Camilla)

  10. ten years a mother

    May 11th, 2015 at 7:44 am

    […] 2013 | Our youngest had his open heart surgery. It definitely was the most challenging time in my life as a mother. Leaving my 6 weeks old baby […]

Leave a Reply

Your email address will not be published. Required fields are marked *