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