Edry’s 12-week progress, part 4

7 days old

We were lucky that our pediatrician was even able to draw any blood from Edry for a bilirubin test, seeing how dehydrated he was. After an hour of waiting at what suppose to be a regular check-up, Edry was admitted for double photo therapy treatment.

I’m sure those three days were more traumatizing for me that it was for Edry. Seeing him lying in the transparent baby cot between the ultraviolet lights, with the IV pinned on his little arm, and ordered to be totally butt-naked, wasn’t easy for me. Not even a pillow on his head was allowed. On the first day and throughout the night, I could hardly sleep a wink because I was watching Edry like a hawk, making sure to wipe poop and urine that leaked through the urine pouch attached to him. The next day, I begged the nurse to allow me to at least put a diaper on him so that he (and I) can rest for a little while longer instead of being kept awake frequently, and they eventually agreed. I also put a cloth diaper to serve as his pillow so that he would at least feel more comfortable.

The blood test taken on the second day showed no change whatsoever of Edry’s jaundice level. Further tests revealed that his direct bilirubin level — untreatable under photo therapy — was significantly high. The doctor wanted to wait until the next day before deciding on the next course of action, in case the jaundice still didn’t go down.

I did two things on that second day to address his jaundice. First, I mixed in Elken Spirulina into every feeding to give Edry the extra nutrients he needed. Secondly, I fed him fresh goat’s milk that my mother supplied, which was about 240ml or 6 ounces. Many people I know swear by it, saying that the milk can help “flush out” the jaundice from the system. I suppose they were right, because by the third day, Edry’s indirect jaundice fell to half of the level, so much so that he was given the OK sign to be released that same evening, to my relief.

Our doctor, the pediatrician, advised me that, based on Edry’s weight, I should give him at least 3 ounces of milk every 3 hours to ensure that he was getting enough feeding. The fact that Edry has only been able to finish about an ounce an hour, plus the knowledge that by waking him up frequently would cause him to burn the calories he needed badly for his growth, did not go unnoticed to me. That I wouldn’t be getting much sleep was of no question, too. Therefore, I took advantage of those three-night stay to learn as much as I can about how I could tackle Edry’s feeding. One of the senior nurses there, Rosemary, was an invaluable help to me, and reassured me that with the right bottle teat and positioning during the feeds, as well as a lot of patience, Edry will come to master the skill eventually.

Edry at 2 weeks Up to 12 weeks old

And Edry did. By his 4-week check-up, he gained just a little close to a pound (5.0 to 5.9), but to me it was still a gain I was grateful with. And by the time he was 12 weeks old, he weighted about 9 pounds.

You know what happened between his 7 days to 12 weeks. I did several posts about his progress, especially on his therapy sessions. Basically, Edry’s feeding improved after he was 3 weeks old, no more signs of reflux or seizures, and he gets his exercises frequently when I’m at home. He sleeps through the night by the time he was 5 weeks old. Rolled over for the first time at about that period, too. He started smiling when he was 7 weeks old. His sitter at the daycare center adores him, saying that he is one of the easiest baby to care for, never fusses except when he soils his diaper (and he cries very loudly when he does!). He doesn’t scream when he’s hungry, but gives out this loud sucking sign that you can’t miss. By 12 weeks, he’s feeding 5 ounces per feed within 20 minutes. He loves the voices of his big brother Eric and grandma Tuaran (my mom). Many, many things to be grateful for and look forward to.

For today, and every day, I’ll just savor his cuddliness and hold him in my arms for as long as possible, just singing and babbling to him, giving him small smacks of kisses all over his face and knowing that I have the sweetest baby in the world who needs me as much as I need him.

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October is Down Syndrome Awareness Month

(A video by the Malaysian Down Syndrome Association)

This month, people from all over the world are celebrating and acknowledging how their lives has been touched by the extra genetic material in the 21st chromosome. Amazing advances medically and socially have been made in order to improve the quality of life for those with Trisomy 21 as well as their loved ones. More work is still required to make people understand that Down syndrome doesn’t stop us from living a full life, and it doesn’t mean that we live our lives any differently from others.

Down Syndrome Awareness Month If you want to know more about lives of other people that are touched by Down Syndrome, check out the links in my Facebook Page for this blog, as well as the blogs below:

As for me, there is nothing special I plan to do other than to feel grateful that I have a chance to share my son and my journey through this blog, and learn to embrace this life I’ve been given. But if there’s anything I would like to create awareness when it comes to Down syndrome, is that life goes on. I hope that as you read our stories on Down syndrome, you do not feel pity for me or Edry or my family. Rather, take this as a realization that whatever life throws at you, you can make lemonades out of it if you choose to.