Edry’s 12-week progress, part 4

spacerspacer

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.

spacerspacer

Edry’s 12-week progress, part 2

spacerspacer

Edry 2 days old on Flickr 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.

Anyway…

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)

spacerspacer

Infant stimulation techniques: 4 weeks old

spacerspacer

Our ISP session at KDSF KK two Fridays ago was brief, but it was worth it in my opinion, mainly because I have learned a few techniques I can easily do at home which would help exercise Edry’s motor skills. I decided to create a short clip showing these techniques, realizing how difficult it is to find therapies online that specifically focuses on children with DS and a detailed explanation on how to go about doing them.

Refer to the video above, which contains annotations describing each of the following exercises in detail:

  1. 0:08 Addressing tongue protusion
  2. 0:48 Strengthening of the jaw
  3. 1:45 Pelvic and leg joint toning
  4. 2:20 Shoulder and arm toning #1
  5. 2:40 Shoulder and arm toning #2

One technique I didn’t manage to capture in the video was the neck massaging technique. The way to do that is to rub the back of his neck, from the base of the head to the base of the neck in a downward motion, and repeat 5 times.

Eric did a great job recording them with our simple digicam; you’ll see the cameraman making a brief appearance. Little Ezra helped, too, by adding some “background sounds” on top of the sound of Playhouse Disney channel already playing on TV — that is, if he wasn’t climbing and pushing me while I was in action.

I hope the video helps to show not only the massaging techniques, but also the realistic environment or condition in which your baby is in. He ain’t gonna like it, and you’ll get all sorts of reaction from your little one, from the constant movements like what you see in the video, to crying and resisting which was what happened when I first did it on Edry. The therapist mentioned that such resistance is normal in an infant due to their tactile-defensiveness, but will subside with frequent stimulation to lessen their hypersensitivity.

spacerspacer

Healthy baby and more DS understanding

spacerspacer

Edry had his follow-up check with our paediatrician (PD) this morning, and he passed with flying colours! The doc noted that his jaundice is looking better, which means that Edry’s liver functions are getting better (yay!). His lungs, heart and everything else checks OK too. I only need to put some lotion on him since his skin is a little dry. Dang that phototherapy lights! He also reconfirmed with me that Edry doesn’t have any congenital issues (health problems present at birth). I asked him about the possibility of Edry getting atrioventricular canal defect (AVCD), a common problem among Down syndrome children, and he said if it’s not congenitally detected, then he won’t have it even when he grows up. What a relief! PD mentions that I only need to be on the lookout for ear infection due to his low muscle tone.

The doc and I went on to talk about other things, specifically the early intervention programs (EIPs). He handed me a leaflet of Seri Mengasih Centre, so I thought I’d share it here.

Early Intervention Program

For babies, toddlers and young children from 0-12 years old with:

  • Cerebral Palsy
  • Intellectual Disability
  • Motor Coordination and Sensory Impairments

Day: Every Wednesday
Time: 2:30pm for assessment, 3:30pm for playgroup

Program follows a multi-disciplinary approach involving:

  • Physiotherapy
  • Occupational Therapy
  • Sensory Integration
  • Counseling / Assessment

Conducted by:

  • May Vivien Lim, Physiotherapist, B.Sc. (Physiotherapy), Australia
  • Jasminah Ali Umer Kutty, B.Sc. (Physiotherapy), Australia
  • Florence Lajangang, Occupational Therapist, B.Sc. (Occupational Therapy), United Kingdom

Fee structure:

  • Annual membership fee payable to Seri Mengasih Centre (including free access to the Resource Library): RM50
  • Payable to the therapists:-
  • Preliminary Assessment (45 mins, one-off): RM50
  • 3-sessions per month (1 session is 45 mins with all therapists): RM75
  • Extra one-to-one therapist session: RM50

This is a really good start for me. I got tons of information and more understanding of the types of services and therapy I can get from non-profit organisations as well as government centres. I think I’ll just do a different post for that later. For now, I’m taking a little time to be grateful to the Lord concerning Edry’s health check.

spacerspacer

Ouch, ouch, ouch, ouch…

spacerspacer

It’s never a pleasant thing to get these fake Braxton Hicks contractions, especially when you’re still a month away from being full term. Everything about this fourth pregnancy seem to be more intense than my previous ones. I suppose this is why my OBGYN is recommending the weekly check-ups now. No matter. When he’s ready to come out, he’s ready. Yes, he’s a he. I picked up a name for him already.

Just as a side note to self, this is the first time that my better half has never attended any of my pregnancy check-up. I’m fine with it, though. The important thing is that he’s around when the time comes, and not being outstationed for work.

Counting the days. Let’s hope my little comes on the due date next month :)

Update: This post was actually made on 18th June and scheduled to be posted on 20th. What do you know — I delivered my son on June 19. More on that coming soon.

spacerspacer