Kyrie Eleison

Noah update: I’m writing this at the Intermediate Care Unit (IMCU) of St Luke’s. Noah had to be transferred because his breathing is still labored, his oxygen saturation levels were still in the low 90s, he was just sleeping all throughout the day and his lungs still showed that he had phlegm even if he was already on antibiotics.

His doc wanted him to be hooked up to a pulse oximeter machine to monitor his oxygen saturation. Normally a person at rest would have an O2 saturation of 96 and above. Noah’s was at around 92-93. This machine is inside the IMCU and so we had to move.

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In addition, the doc also wanted Noah to be hooked up to a CPAP machine. CPAP stands for Continuous Positive Airway Pressure machine and it basically increases air pressure into Noah’s airways so that he would get more oxygen into his body.

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Noah also had a nasal gastric tube put in but HE RIPPED IT  OUT. For such a sick kid he’s so strong when it comes to fighting off his nurses. Eh na-c-cute-cutean sa kanya mga nurse nya, so lalo syang naiinis. Hay nako bugoy talaga.

Noah had to repeat all his lab tests plus some new ones. His doc also ordered a 2D echo just to make sure his heart is alright.

As soon as I learned of our move, I felt that horrible pit in my stomach again. I went to the admissions office to process the transfer and I was weeping while waiting for my number to be called. Everything happened fast and Noah was whisked to the IMCU within one hour of the order. Nakakaloka. I haven’t showered nor had lunch and I was running on adrenalin. Noah meanwhile just slept — which was also not so good. He was sleeping for 2 days straight and the doctors did not like that he was in such a stupor.

I had lunch at around 4pm. I just ordered Palabok and Iced tea and I was alone in the restaurant at the lobby of St. Luke’s. While I was trying to eat my lunch, I heard this song being played in the resto:

The Lord really has awesome ways of telling me that everything will be ok, that Noah will be just fine. I wasn’t expecting Mister Mister to be the messenger but hey I’ll take it. A good 80’s pop song is just as good as a chorus of angels. It came when I needed it most. I held on to the song and repeated the chorus in my head:

Kyrie Eleison
Down the road that I must travel
Kyrie Eleison
Through the darkness of the night

Kyrie Eleison is Greek for Lord have Mercy.  Lord have Mercy indeed.

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Love you Noah!

Help for Baby Zane

Mye De Leon is a talented digital artist who I knew online for a campaign she started for her youngest child and only boy Alphonse. Alphonse was born with Down syndrome and also had Tetralogy of Fallot (ToF). Simply put ToF is caused by a combination of four heart defects which cause oxygenated and deoxygenated blood to mix. Children with ToF are usually called “blue babies” because of the circulation of the oxygen- poor blood in their bodies.

Mye raised the funds she needed through the efforts an amazing community who rallied behind her and who helped her raise the funds for Alphone’s life saving surgery. You can read updates on Alphonse over at Mye’s website  (www.myedeleon.com)

Now Mye wants to give back. One of the families at the Down Syndrome Association of the Philippines has been trying to raise funds for the surgery of their baby boy Zane. Zane it seems also has ToF. To help raise funds for Zane, Mye will be selling five of her prints for only $10! ALL PROCEEDS will go to Baby Zane’s surgery fund.

The prints are adorable and are in already high-res so its ready for printing and display! My most favorite among the set is this:

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Here are the rest of Mye’s prints. The last one is perfect for crafty moms :)

 

mye deleon baby zane tile

 

Every little bit counts for dear baby Zane. Kids with Ds always present with some form of heart defect or another. Noah had a small hole called an ASD in his heart which closed on its own when Noah turned one. Open heart surgery is very common for kids with Ds but it is this surgery that allows our children to bloom and be healthy.

Let’s all help baby Zane get that chance to be healthy and strong. Zane’s family also has a personal gofundme account here which you can donate to directly.  You can also share the family’s page via Facebook or Twitter. Their fundraising goal is $20,000 but they have only raised $4,600 so far. Their most recent update is that they need Php9,600 for 3 days of antibiotics for Zane.

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Zane says hi!!

 

To recap, Mye’s prints for baby Zane can be bought here
Baby Zane’s fundraising page is here
Zane is in Iloilo City. His mom, Sheira May Rentillo may be contacted at +639192028940

THANK YOU!!!

3rd time’s…the charm?

3 times before turning two years old. Noah has been confined 3 times and his birthday is this Sunday na. The reason for all confinements are all the same: Pneumonia.

His first time was a few months after he was discharged from the NICU. We went to the ER on Dec. 1 because Noah kept throwing up and his coughing got worse. The ER doctors heard something and saw a bit of fluid in his lungs so off we went to be admitted. The second one was just the same, a cough that got worse, a baby who couldn’t sleep anymore because he was coughing every minute and throwing up too. Even with regular nebulizing Noah was not relieved at all.

Then last Monday, we had to bring him to the ER again because his fever has stayed between 38.8 and 39.4. He never got better and his cough got worse again. He was just so tired. His eyes were always watery. He was asleep the whole day and in the few hours he was awake he was miserable and cranky.

Noah StLukes Sept 2014

It’s just worse this time because his oxygen levels were low enough for the doctors to have him on oxygen support. As soon as I heard that, I cried and my heart sank. His x-rays showed he had phlegm in his lungs which makes it hard for him to breathe and take in the oxygen he needs. It’s just so hard though seeing him with his cannula (you can see part of it in the pic above) . It’s nerve wracking to see the doctors huddled in a corner and talking about his case and how frequent his pneumonia has been. It’s distressing to see the docs checking his oxymeter every so often. Even though I know it’s all for Noah, I was still a mess. My knees were like jelly and I looked at Noah who was just so weak.

We’re on day 2 now and Noah’s fever has remained in the high 30s. His pedia-pulmonologist has started him on Ampicillin. Even though Noah’s pneumonia is viral and his CBC was normal, the fact that his fever has yet to improve warranted the additional medicine.

It will take 2 days for the antibiotics to take full effect. Which means we will be at the hospital until Friday.

Noah hates his cannula but me and Dan have gotten the hang of putting it back on quickly. Noah has been asleep for a good part of his stay here at the hospital. He’s just sooo weak.

We haven’t seen him smile since Sunday :(

Noah pagaling ka na  ha?

May I ask for good and healing energy for Noah? May I also ask that you pray for his speedy recovery and that his doctors be guided to treat him in the best way that they can. Thank you so much!

 

UPDATE (9/10/2014): Noah had a hard time breathing last night. Ht on e was coughing continuously too. Two residents came and checked him and had him nebulized again even if he just finished a session a few hours prior. He only really calmed down at around 3 am. Little dude is tired. He only took around 2 ozs of milk since this morning and has been asleep since. His pulmonologist came this morning too and told me that there is still phlegm in Noah’s lungs and that his airway is still restricted. She put him on steroids now to open up his airways. The good news is the Noah’s fever has gone down. As of 12pm today his temp is at 36 degrees na. Woohooo!! We’ll be taking things one day at a time. Slow and steady wins the race right? Can’t wait to reach the finish line though….

Fun Finds at Wellworth Fairview Terraces

Wellworth Fairview Terraces 2

Growing up in QC, I have always heard jokes that Fairview is so far that it should be named FARview harharhar well guess what I was in Fairview last Saturday, Fairview Terraces to be exact! I was invited to tour the newly opened wellworth department store. I came full force with Dan, David, Noah, Yaya Ann, Yaya Linda, my mom, dad and my brother Gino. None of us has ever been to Fairview Terraces and the invite for me to tour wellworth along with other mom bloggers was the perfect excuse to go … [Continue reading]

For All of Us Food Lovers: Best Food Forward 2014

Best Food Forward 2014

The country’s biggest and most awaited benefit food fair, Best Food Forward, is back! Now on its 4 year, another grand, exciting, and fun food-filled weekend is set on 11-12 October 2014, from 10am – 8pm. For a fresh change, it is happening towards the festive holiday season with a new venue – the Rockwell Tent in Makati City. There is more to food than meets the eye at Best Food Forward. Check out specialty food stalls, innovative cooking demonstrations, celebrity chef appearances, family … [Continue reading]