Twice Blessed

One of the goals we had while we were at the IMCU is for Noah to be well enough for him to be transferred to a regular room. It seems that a trip home was not in our cards yet and so with Jo, one of our IMCU nurses we planned for two goals:

1) For Noah’s oxygen stats to go up to 98
2) For Noah to be transferred to a regular room in time for his birthday

Nakakatatakot talaga. Noah’s breathing was really labored and he was miserable. He was always crying and pulling off his cannula. He also pulled off his Nasogastric Tube which is a looong tube that was put in his nose down to his tummy. He wasn’t up for oral feeds yet – his respiratory rate was so high that he was at the risk of aspirating if he drinks milk. It all turned around when a new set of 2nd generation medicines were given to him. His mouth and nose were also suctioned at regular intervals to ensure that his airways were not blocked. His CPAP machine pumped precious oxygen into his lungs so that he could breathe again. Jo, the IMCU nurse on duty made sure that Noah’s oxystats were increasing. She even requested for a new machine just to be sure of the accuracy.

His 2D echo also showed he had Myocarditis, a slight infection of the heart. He had fluid buildup in the walls of his heart which was caused by the infection in his lungs. The pedia cardiologist however was not worried too much. Noah’s heart was still strong and did not show any other problems. She prescribed Noah with a low dose diuretic to flush out the excess fluid.

Friday night up to Saturday showed that Noah’s oxygen levels have stabilized. His oximiter has registered 97-98 with a low of 93. This was such a huge turnaround from the last few days when the oximeter would reflect his levels to be at the 70s. Noah has also started waking and sitting up, although he was still dazed. He had glassy eyes and he wasn’t responding nor smiling. Noah wasn’t fully back yet and just seeing him with an empty stare made our hearts hurt more. We wanted our baby back :(

And he did come back, slowly but surely he fought through again.

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Slowly but surely, Noah’s stats showed that he was ready to be moved to a regular room.  “Regular Room” – those two words meant so much to us for it meant that Noah was finally on the mend. His health is the best birthday gift ever and we celebrated it in room 302.

I ordered a simple cake from TazzyCakes again and bought balloons at the hospital gift shop. My mom, dad, my youngest brother, Noah, his yaya and our parents driver all came and celebrated Noah’s 2nd birthday. David came with a mask. He wanted to play with Noah but we told him he couldn’t yet.

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Yay Noah!!

We heard a knock on the door and in came the Pediatric Unit, in full force. They sang the birthday song to Noah, gave him a balloon, a box of fruits and a thoughtful poster.

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Cat of TazzyCakes made another yummy cake. The filling this time was banana chocolate chip :)

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We got discharged last Wednesday. Noah was diagnosed with Brochopneumonia, Myocarditis and Acute Respiratory Failure.  He was given Tergecef for his oral antibiotics. Noah lost a lot of weight but what matters most is that we got him home. We got him back and most importantly he was smiling again.

Noah’s 2nd birthday is such a strong reminder of how such a brave fighter this little boy is. It was also a reminder of how blessed he truly is. He received so many prayers, good wishes and of course lots of loving and expert care from the kind nurses and doctors at the hospital. We had lots of angels on our side who guided him back to health.

And I THANK YOU! Saying thank you to so many kind souls is an opportunity for me, on behalf of my family to count so many as part of our blessing. We are battle-weary but certainly not bowed and we are humbled by the outpouring of love for our little boy.

As for me, I’ve had enough “excitement” for the rest of the year. It certainly is good to be back here at the office, typing away this post in between breaks. Boring is so underrated, don’t you think?

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:

hope resized

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?

Noah StLukes Sept 2014

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 … [Continue reading]

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]