Category Archives: Uncategorized

maggie and milly and molly and may

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by e.e. cummings

10

maggie and milly and molly and may
went down to the beach(to play one day)

and maggie discovered a shell that sang
so sweetly she couldn’t remember her troubles,and

milly befriended a stranded star
whose rays five languid fingers were;

and molly was chased by a horrible thing
which raced sideways while blowing bubbles:and

may came home with a smooth round stone
as small as a world and as large as alone.

For whatever we lose(like a you or a me)
it’s always ourselves we find in the sea

The Quiet World

By

BY JEFFREY MCDANIEL

In an effort to get people to look

into each other’s eyes more,

and also to appease the mutes,

the government has decided

to allot each person exactly one hundred   

and sixty-seven words, per day.

When the phone rings, I put it to my ear   

without saying hello. In the restaurant   

I point at chicken noodle soup.

I am adjusting well to the new way.

Late at night, I call my long distance lover,   

proudly say I only used fifty-nine today.   

I saved the rest for you.

When she doesn’t respond,

I know she’s used up all her words,   

so I slowly whisper I love you

thirty-two and a third times.

After that, we just sit on the line   

and listen to each other breathe.

Selling: Unisex Baby Items

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Items are only available in the Philippines; for pick-up and not for shipping. Meet-ups can be arranged with handling fees applied.

All prices are negotiable depending on the number of items being bought.

Please submit your orders or send your inquiries via the Talk to us! page or click here. You may also send me a private message on Facebook.

Thank you and happy shopping!

Raising Funds

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YouCaring. Click the image or go to https://www.youcaring.com/dearbabyzion-943164

GoGetFunding. Click the image or go to https://gogetfunding.com/dearbabyzion/

I woke up today feeling a burden on my shoulders. It hasn’t really dawned on me, until this morning, that I will be spending hundreds of thousands of money (Philippine Peso) for my dear baby Zion’s operation. In fact, I am deeply indebted (literally and figuratively) to my parents for helping to support me throughout my pregnancy.

These past few days, I have been struggling to earn from work-at-home jobs. It’s hard to actually do manual labor when I can hardly breathe. Even just prolonged sitting and lying down makes me sore and out of breath. I wish I continued working in mobility early in pregnancy, if I only I didn’t have placenta previa. No excuses, though. I should’ve found more ways of making a living despite complications.

Now, just less than 7 weeks before labor induction, it’s all becoming so… I don’t know. I can’t seem to find the right word for it. I just feel like I want to care for my baby now. I want him treated with the best medical treatment available now. I don’t want to be worried if he’s doing okay inside my tummy. I want to able to see for sure, as frequent as possible. I want the doctors to handle him and cure him now before anything else goes wrong. But… can I please have more time to prepare for it? for the expenses, for the emotional rollercoaster, for the psychological impact, and all others? It’s getting tougher to handle.

I haven’t been given the quotation for the entire operation yet, as there are a lot of factors we have to wait for. It’s somehow too early to say. The only thing we were told is that a possible caesarian section at St. Luke’s will cost me PHP150,000. I can’t imagine how much the cost of weeks worth of stay at the NICU will be. I’ll find out the details soon enough.

I asked my online support group on Facebook—Parents of CCAM Babies (Rare but Special)—how much their surgeries cost. The answers ranged from US$50,000 – US$310,000. That would be around PHP2.5 million – PHP15.7 million. I gulped the biggest gulp of my life upon seeing those numbers. But what surprised me more is that none of them paid for these. Parents from countries like Denmark, Australia, and the UK didn’t pay for anything at all. Absolutely free. Thanks to their government. Most of those from the US only paid for a small percentage after insurance.

It saddened me a little because I was so jealous I wasn’t born privileged. I don’t have access to these first-world medical care. Even if I use up all PhilHealth and HMO assistance, it still won’t be enough coverage for our expenses here to be absolutely free. I’m genuinely happy for these parents that they didn’t have too much trouble about expenses, but I sure wish I was one of them. And I wish I could offer my son the same privilege.

Nevertheless, the Holy Spirit convicts me and reminds me that God placed me here for a purpose. So I shall cling on to His promises. Read Luke 12:22-32 of the Bible. Moreover, I am reminded that the only free thing I should seek is God’s free gift of salvation in Jesus Christ.[Romans 6:23] Therefore, I am also born into privilege.[1 Peter 1:3-6]

“That is why I tell you not to worry about everyday life—whether you have enough food to eat or enough clothes to wear. … Can all your worries add a single moment to your life? And if worry can’t accomplish a little thing like that, what’s the use of worrying over bigger things? … And don’t be concerned about what to eat and what to drink. Don’t worry about such things. These things dominate the thoughts of unbelievers all over the world, but your Father already knows your needs. Seek the Kingdom of God above all else, and he will give you everything you need.” [Luke 12:22‭, ‬25‭-‬26‭, ‬29‭-‬31 NLT]

After much thought, I have decided to start fundraisers for my dear baby Zion. It’s better to start earlier than rush when he needs it the most. Faith without deed is dead.[James 2:14-26]

Photos above are linked to the crowdfunding sites. I set up two so that you may choose which one is more convenient for you.

YouCaring has no additional fees. The “tip” for their services is optional and can be changed back to 0. The currency set up is in US$.
GoGetFunding is in Philippine Peso.

Please help us finance dear baby Zion’s operation and recovery.

Links to these fundraisers spread across the blog: from the widgets on the sides (or bottom for mobile and tablet) to the menu on top.

Spare change could go a long way.
One share could go the same distance.

Thank you from the bottom of my heart. 💙

Who are we?

Featured
By

A profile of my baby in his 25-week scan.

My name is Bea, and this is my baby boy, Zion.

Zion is my first baby and I have been pregnant with him for 26 weeks (as of writing). Carrying him has been a breeze. I barely experienced morning sicknesses and other pregnancy symptoms most pregnant women dread. Physically, there have been minimal changes. The only significant change in my body was, of course, my growing belly. I always thought of it as an easy pregnancy.

When I reached 12 weeks, I experienced spotting for more than a week due to Placenta Previa – “a condition where the placenta lies low in the uterus and partially or completely covers the cervix”, causing bleeding or spotting. Panic was the expected initial reaction. My OB-GYN/Sonologist assured me everything was fine and that the placenta will eventually move as pregnancy progresses. It did. The spotting stopped and the abdominal pain I was experiencing ceased thanks to medication and complete bed rest for two weeks. Still easy, but delicate, pregnancy.

After a few weeks, I found out for sure that we’re expecting a boy. I soon passed the halfway mark. We were receiving gifts for the baby. All I could focus on was delivering Zion soon. I didn’t think that anything could be difficult for me, not until labor. Everything seemed normal after that.

Or so I thought.

On my 23rd week, I had flu-like symptoms. My cough and colds went on for a week and so my mother decided we should go back to the doctor since the medication isn’t working. After the check-up, my OBGYN/Sonologist suggested we go have an ultrasound. As usual, I was just excited to have another chance at looking at my baby, hearing his heart beat, and getting a new U/S picture of him. I was never nervous during scans, and the thought of having problems never occured to me. Yet life just has its way of surprising you when you least expect it, doesn’t it?

My doctor found masses in Zion’s left lung. His heart was being pushed to right, and towards the esophagus and spine. Just upon hearing the word “masses”, my heart dropped. I almost couldn’t comprehend the rest of what the doctor was saying. During that time, we weren’t sure of what it was yet and I was directed to see a specialist. In the time waiting for an appointment, the internet was there to answer some of my questions. The most common condition coming up was “CCAM”. It took more than a week before I am met by a specialist in Perinatology (Maternal-Fetal Medicine). A perinatologist specializes is high-risk pregnancies.

From having an easy-breezy pregnancy to high-risk pregnancy…

From speculations to a diagnosis: my baby Zion has CCAM.

Photos of the pulmonary masses found in Zion’s left lung.

Congenital Cystic Adenomatoid Malformation (now known as Congenital Pulmonary Airway Malformation or CPAM), in layman’s terms, is a rare condition in which some of the fetal lung tissues abnormally develops. Its cause is unknown, and occurs only in 1 out of 30,000 pregnancies. What are the odds, right?

To grasp the gravity of the situation, I will try to break it down to four important things:

  • Baby Zion’s heart is now on the right side instead of mid-left (mediastinal shift).
  • Baby Zion has microcystic CCAM, probably Type III that has poor prognosis.
  • Baby Zion may or may not develop hydrops (fetal heart failure – which ultimately leads to death).
  • Baby Zion, should he not develop hydrops, will most likely undergo surgery after he is born to remove the masses in his lungs.

Picture that… a newborn baby undergoing surgery. It’s already hard enough as it is. Now, imagine how it must feel for me, the mother.

Besides the desparation of having to go through this, I also experience a few problems caused by the CCAM. Excessive amniotic fluid in the amniotic sac (on its way to Polyhydramnios, found in 1% of pregnancies) causes my shortness of breath, quickening of pulse, and the feeling that my stomach is too full. This is because the supply of amniotic fluid is not being met by baby Zion since his lungs is having problems sequestering. Too much amniotic fluid could also lead to me having an amnioreduction wherein a massive needle is injected to drain some of the fluid.

Baby Zion and I are being closely monitored. He will have weekly scans to check if the size of the masses became smaller or has completely disappeared (declaring it!), as well as to check my amniotic fluid index or AFI, and if he developed hydrops (rebuking it!).

So far, I have had enough of my crying time. I have dealt with people blaming me and what I did and/or did not do that caused the CCAM, even if it’s been made clear by professionals from the beginning that it’s not. I have dealt with the unwarranted advices and overall negativity from others who are even considering termination. I have had my fair share of self-pity and self-loathing. My browser history is full of CCAM research for treatment – all of which are available only abroad. Third-world countries don’t have access to such technology.

As hard as it may seem to handle, God delivered me from that place of despair to a place full of hope. He has continuously reminded me that “your faith has healed you” in the times I have poured my heart out to Him. And so, that’s where I stand: faithful that God has already healed baby Zion even before the tests show.

I believe that my faith can move mountains, but I would still like to ask for prayers from everyone. Please intercede for baby Zion’s complete and absolute healing. Please pray that I will reach full-term. Please pray that he will live a long and healthy life. Please keep us in your prayers until we come out victorious in this struggle. Please fight the good fight of faith with us as the victory is much yours as it is ours.

I put up this blog mainly in hopes of reaching a lot of people and ask each one of you to include baby Zion’s healing in your prayers. Moreover, I want put my thoughts into words as that’s what I do best in life. Due to the limited number of CCAM cases especially in the Philippines, there’s no one to talk to about what it’s like being a parent of CCAM babies. So, thank you for reading this far. I know in your good heart that you will say a prayer after this and I thank you again for that. God bless us all.

You can catch up with the latest updates on dear baby Zion by clicking Read about us. from the menu, or click here.


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UNDERSTANDING CCAM/CPAM:
https://www.childrenshospitaloakland.org/main/congenital-pulmonary-cystic-airway-malformation.aspx

CCAM/CPAM FAQs:
https://patient.info/health/congenital-cystic-adenomatoid-malformation-leaflet