I’d like to think that I’m one resilient person, that I can quickly handle any change and any challenge that comes in my way, and move on. But the year 2011 has been so unfair to me, both professionally and personally — changes and challenges bombarded me from all directions that I feel like I just want to hide from the world and just scream, “Enough!”
I’m glad that my kids aren’t too affected by my issues. My cutie-pies. Mr. smart-boy Eric is as busy as ever. For this month and the next, he’ll have his first ever piano exam for Grade One, his Taekwondo upgrading for yellow belt, becoming a ring-bearer for his aunty’s wedding, and extra band practice… all this during his supposed school break. I wonder from time to time whether all this is too much for him, but he said he wanted to do all these extra-curricular activities, so I’m letting him go ahead with them. Any time he wants to stop, I told him, it’ll be okay with me.
I tend to call Joel by his first name more frequently now. And he writes and recognizes his own name now, yeah! He speaks very clearly now, too. Always the mild tempered boy just as he was before. One pleasant surprise I’m seeing in him is his sense of humour. He’s my Mr. Funny Boy.
Ezra. Never the one to cool down. Just this morning as Joel, Ezra and myself spent a nice sunny morning having breakfast at a cafe, he threw another of his infamous temper, because I refuse to let him wash his hands after doing so for the umpteenth time. His screeching scream was followed by him lying down on the coffee-stained floor, spinning himself on his back as I tried to soothe him and asked him to calm down. Thank God the supervisor had recognized us by now as the frequent patrons of the shop, and she actually laughed seeing him do that. I would have laughed at him too if wasn’t for the crazy stares I was getting from the other people in the cafe. And the fact that the monster of a scream was coming from that little boy I call my son. Mr. Hot-Tempered.
Look at that picture of Edry right over there, isn’t he adorable?! He’s my Mr. Happy Boy. I can’t believe he’s turning one year old next month! He looks just as handsome as my sons. *Sighs* … this kid makes me so happy. He’s a momma’s boy, this champ. He wriggles in excitement and reaches his arms out to me every single time he sees me, without fail. Every single time. And with the biggest smiles, too! None of my kids were ever that excited when seeing me while they were still babies, so I think the amount of excitement Happy Boy shows me more than makes up for his brothers’ lack thereof. My little crawler is working to strengthening his upper body and balance so that he can sit up by himself. I’m thinking in 6 months’ time, he’s ready for standing.
We’ve just completed our first ever Annual General Meeting for the Down Syndrome Association Kota Kinabalu (PSDKK). Even right now I’m putting some finishing touches on some documents and the meeting minutes to be distributed to the members. It got me thinking of the parents in my community who just had babies with Down syndrome, and how much I’d wanted to make an information packet to address this matter.
It led me to my memories when I first had Edry, and the fear and uncertainty I had during those early days.
So, here I am, tears streaming down my face as that familiar fear creeps back into my heart. There’s that self-doubt again. All those medical complication that a child with Down syndrome are susceptible to may creep up later in life… can I handle it? Can he? Physical and intellectual development challenges are also waiting for them. How? When? What am I to do? Will he work? Will he count? Will he understand the complexities of life?
And yet, raising Edry has been a breeze… how could it be? I’m trying to remember the struggle I had to endure to raise Edry. And I could remember none. At least no struggle that is any different from what I’ve faced when raising my other children. How could it be so easy for me?
I shouldn’t be asking these things. I should, instead, count my blessings. Because, at the end of the day, the reality is, I’m not raising a child with Down syndrome. I am raising Edry.
So it’s okay. He’s okay. I’m okay.
It’s going to be okay.
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.
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.
As Edry turned seven days old, we went to the pediatrician for our scheduled follow-up and to have his blood drawn for karyotype testing, in order to confirm his Trisomy 21 diagnosis. I did my best to report everything I could remember about Edry’s goings-on, including the seizures that Edry experienced, and how he wasn’t feeding enough.
Let’s backtrack a bit to Edry’s seizures and feeding issues. The days before Edry’s scheduled check-up, he had at least three episodes of what I could only best describe as seizures. With what little brainpower I had (due to sleep-deprivation), I did more reading from the Internet and suspected that they were caused by two things:
- Not leaving him upright long enough for his milk to settle. Even after he burped, the 10 minutes of holding Edry upright wasn’t enough; milk would pour out of his mouth and nose (was so worried that may even come out of his ears, yikes!). My quack scientific hypothesis is that hypotonia contributed to the inability of his intestines to process his milk well (the intestines are muscle after all). Being a little bit of a preemie may have also contributed to it. He was born at 36 weeks, or 4 weeks earlier than anticipated, so his gastro-intestinal functions may not be developed well enough for him to digest effectively.
- He may have reflux / GERD (gastroesophageal reflux disease). His symptoms did correspond to it. He was shaking violently and regurtitating instead of just spitting his milk out, and I suspected that it must have been obviously painful for Edry, as he would cry his heart out after every episode. It was equally painful and heartbreaking for me to watch, too.
The way I dealt with this was to leave Edry upright for at least 30 minutes in order for his milk to settle in his stomach. I was struggling with this, because it meant that I was losing more sleep. One hour to feed him, half an hour to hold him upright, then only another half an hour of rest for me before the whole ordeal began. But it wasn’t like I had any choice, did I? My better half was doing his best with the rest of the house chores (as well as any man could, I guess, and you know how most guys are like when it comes to chores… clueless… but at least he can cook, thank God!).
Being a believer of nutrients and supplements as a way of improving and maintaining good health, I started feeding Edry some enzyme catalyst (Elken’s Dr. Xeniji) to help metabolize his milk better and improve nutrition absorption. Since the enzyme protects the gut area, I was hoping that it could help prevent reflux, which I’ve seen to be pretty common among children with Down syndrome.
So, back at our doctor’s appointment. I reported to the doc about everything I could think of, as he examined Edry’s jaundice. Remember the dehydration worry I had? A couple of days before the aforementioned appointment, I actually called the pediatrician of my concern that Edry wasn’t drinking enough.
“I think he’s dehydrated,” I told him over the phone.
“How do you know he’s dehydrated?” he questioned.
“He looks a bit dry,” I answered. He brushed off my concern, telling me that as long as his diaper looked full and that I frequently had to change him (can’t remember whether he said I should need four diaper changes a day, or something), then he was fine. “He only poos a little.” As long as it’s not hard, he would be fine. Well, OK, doc.
But it wasn’t OK. Not only was the doctor unable to draw enough blood for the karyotype test due to his dehydration which causes his blood vessels seemed less visible, but his jaundice got worse. The doc was only able to take enough blood sample for bilirubin testing to check Edry’s jaundice level. The jaundice was so bad, that Edry had to be admitted for double photo therapy that same day.
More drama ensued, which I will post later. Phew, just thinking back on those times makes me so exhausted.
I have wanted to chronicle everything that has happened to Edry and me since his birth. So far it has been the most dramatic event of my life, and I haven’t even recorded the hours prior to his birth. That would be for another day.
0 to 7 days
I was still trying to handle the news of Edry’s diagnose as we went back home with Edry at 3 days. Caring for Edry was a shock to me, to say the least. The doctor said that Edry was healthy, but he didn’t mention how hypotonia would affect his feeding.
Edry didn’t cry at all, not even for feeding or when he soiled his diaper. After 8 hours agonizing and waiting for any sign from Edry, I decided that this would be the first time that I would feed my kid on schedule.
I tried feeding Edry just 2 ounces of milk, using a bottle. After one hour, he couldn’t even finish one ounce. I waited again after 2 hours, and tried feeding him once more. The same thing happened, he couldn’t even finish one ounce after an hour.
Turns out — and having to figure this out by myself — his low muscle tone caused him to unable to suckle and swallow well. Fortunately, I had a spare syringe that I can use to supplement his bottle use. Because he only feeds one ounce at a time (even then he could only finish after one hour), I timed my phone alarm to ring every two hours during the day, and three hours during the night.
Do the math: When Edry feeds at 2pm for one hour, and the next feeding is at 4p, I only have an interval of one hour to either rest, or do the house chores, or taking care of the kids, or eat, or go online (which is a must for me in order to learn more about how I can care for Edry). At night, if he feeds at 10pm for an hour, that leaves me with 2 hours of sleep before the next feed. If I only had to care for Edry, then it’s fine. But I have two little ones at the same time who needed my attention. Thank God for Eric; he actually helped me out a lot during those time.
Even with the scheduled feeding, I knew in my heart that Edry wasn’t getting enough. Lack of liquid meant that his jaundice couldn’t heal as fast as I had hoped.
It was exhausting for me, more so emotionally than physically. I suffer from a mild form of postpartum depression, which made things much worse mentally. The good thing was, since I knew I had it every time I gave birth, I was able to acknowledge which feelings were appropriate or not, and did my best to snap out of it, either by resting, or talk them out with my significant other. I also had to fight the loss of appetite (I tend to stop eating when I’m depressed), and instead force myself to eat, telling myself that I was doing it for the kids.
I tried a few techniques on Edry which I hoped would help him (and I got all these ideas from the Internet). First, I was fortunate enough to have stumbled over Sara Rosenfeld-Johnson’s article on oral motor myths of children with DS. Almost immediately, I changed Edry’s posture to an upright position so that his mouth is lower than his ear. Next was the tip I found from Sara’s video about jaw strengthening, plus a discussion at BabyCenter Ds group about the same matter. So, I started massaging Edry’s gums at the back of his mouth and let him bit down a couple of times at each side, before he started each feeds. Then, my husband hit a jackpot when he found a bottle teat soft enough for Edry to suck on. The improvement was evident — I believe that a combination of these helped him suckled better. But he still wasn’t feeding enough.
The drama continued on Edry’s 7-day check-up. (to be continued)
There were so many things happening between the nine and 12 weeks period, that I didn’t know what to blog about first! So let me start with this video, taken by Eric (who decided to make an appearance a couple of time).
I added a few annotations corresponding to the infant stimulation techniques I’ve been using since my last visit to Kiwanis Down Syndrome Foundation (KDSF):
- 0:10 – An open seating position, where Edry is leaning on me while I support his legs, can help with visual stimulation and be more aware of his surrounding. (Note: my hand position isn’t that accurate, maybe I’ll be showing a better way of holding Edry in my next shoot). This is a good position, because it supports his back, and you have more control of his legs and keep them closer together. This position is better than having Edry carried facing me, because not only would they tend to be more huggy-clingy towards you when they grow up, but your baby’s legs tend to be placed wide apart. Not good for kids with hypotonia, particularly when they reach the learning stages of walking.
- 0:40 – This is actually the back neck massage that I blogged about before this. This helps with strengthening the neck so he can lift his head (which he now can, BTW). I’ve been doing this since Edry was 4 weeks old. This massage also helps, somewhat, in preventing the small hump that might show behind his neck, a physical feature typical in kids with Ds. There’s suppose to be a name for that, but I forgot. My therapist mentioned that I should look out for that, just in case.
- 1:05 – Another neck massage, this time to help Edry prepare for his swallowing once he’s ready for solids. It’s best to stimulate them early.
More progress report in my next post.