Progressing...

We went for Emily's check up last Monday, her weight is now 4.25 kg. Although she is still below the average weight for babies her age, it is still a good increase from her post-ops weight of about 3.4 kg. We will need to feed her about 90ml of breast milk every 3 hourly. Her medicine has also been reduced. Hopefully after the next IJN checkup, we can stop her medication. We will be going to IJN in 2 weeks' time. I hope her heart scan will show that she heart is doing well.

Since she has been staying in hospitals for a large part of her 4 months, we just realised we have missed 2 of her immunisation. Last night, we finally bought her to a local clinic and got her month 2 jab. She will need a few more jabs to catch up.

The paediatrician in Hospital Kajang has also given us 2 referrals to check her eyes and her ears in Serdang Hospital. We need to make time to bring her there too.

Emily, the Smiley

I wonder it anyone reads this blog besides my hubby but that's fine. I just want to write down what I go through periodically, together with our precious and special little girl, Emily. She is now 3.5 months old, her next check up is on this coming Monday. I really hope we hear all positive things from the doctor. She seems to be doing very well at home, feeding well, sleeping and playing well too. Even after I swap her formula powdered milk to breast milk, she seems to be doing fine. My MIL was worried about her not feeding as much compared to the formula milk but under my care, she seems to feed well. So I am quite sure, she is doing fine. I think it's more about getting her in a comfy positiion so she can feed on the bottle nicely.

Another 3 weeks, we will be seeing the IJN doctors. Apart from a healed scar on her chest that is about 3 inches in length and resembles a centipede, she seems to have healed very well from her operation. If I have not mentioned before, the IJN bill worked out to be pretty hefty and we will be paying a large amount from our pockets. But I keep reminding myself about the time when we were uncertain about her heart condition and we had made up our mind to foot any cost involved just to get her cured, I stop feeling the pain the money that her operation cost us. I honestly do not mind paying the money in exchange for her mended heart. In fact I am very grateful to my hubby's company for helping us (in whatever extent) even when the insurance doesn't cover medical cost from congenital heart disease.

Emily, she is a pro at smiling and making cooing noises. You can easily make her smile and laugh by baby-talking to her, provided you satisfy her tummy first. Life with her is at the moment pretty normal. She looks and acts like any other baby, most of the time. I hope she will continue to do so. I pray for her to grow and learn normally like any kid and that she will have a fruitful and fulfilling Christian life.

Gadgets for Baby

Emily is due for her check up in the hospital the Monday after next. She is going to have her blood drawn next Monday to run some tests. I hope the results will allow her to stop all the medication that she is currently taking. She is also due to change from fat-free formula milk to breast milk which I have accumulated for her in my new freezer. Her very expensive fat-free formula is almost out as well, but I am a bit worried about her ability to adapt back to breast milk after 6 weeks of not taking it. I am also worried if switching back to breast milk will cause any problems like it did right after her operation.I think I will mix both types of milk and take 2 to 3 days to switch her over. Hope I still have enough formula milk to do so...

Otherwise, Emily is doing just fine. I think she is well over 4kg now, hooray! She still pants after feeding for a short awhile but will resume feeding quickly. She is responding to us well, smiling when we make funny noises. She is even cooing and oohing back at us. She has been flagging her arms and legs since a long time ago and her neck is getting stronger.

As my mum suggested, I have brought an electronic automatic shaker for the baby hammock and it's a great help. We can leave her for a long while in the cradle while I do other stuff around the house, RM180 for that with 6 months warranty. This will be useful too when the maid is here so the maid can do other work while Emily sleeps in the day. Additional, I have ordered iBaby online. It's an IP webcam/baby monitor that can be accessed and controlled using iPhone app. It has night vision and supports 2 way communication too. I am waiting for the RM699 iBaby to be delivered. Quite excited about getting it to work so I can start checking on Emily live while I am at work!

One Month Post Surgery

Can't believe it that it's only been one month since Emily had her open heart surgery. She is doing so well at home that it feels like it was ages ago. My little baby is eating and growing like a young baby should and we have gotten really so used to her being around us all the time. She is a very smart baby, she knows when there isn't anyone watching over her, even when she is supposed to be sleeping. If you leave her side for even a minute, she will start fidgeting. If you still do not run to assure her of your presence, she will start crying! Her grandmothers and I have gotten used to this. Some singing is also required to make her sleep faster. She also loves to be cradled in your arms, she would sleep so soundly.

As I write this in my office, I miss holding her and planting kisses on her little chubby face. I love to kiss her chin most, the cute little chin of hers :). Fortunately, I have her pics and videos on my iPhone when I miss her. Her hair is starting to grow back on her little bald head. I can't wait for her to grow bigger to fit into the pretty clothes that I bought and also given by relatives and friends.

Can't find her neck no more!

We have a few checkups to go to in a few weeks, both at Kajang Hospital and at IJN. At the moment, we are about to run out of the special, fat-free milk powder and I cannot find it in any pharmacies. I think we need to have one or two packs more to last till the end of the 1st week of July. I think I have no choice but to call IJN to ask where I can buy them from.

Getting into our routine

Emily is growing nicely, we can see her face getting rounder and she is demanding more feeding :). She is still on her special non fat diet until a week into July but we have ran out of Carborie, a calorie supplement. I tried finding it in a few pharmacies but none of them have it. Finally, checked out the main marketeer in the country for it and found out that it is available in Caring Pharmacies, nearest one in Balakong, Aeon Jusco. So I plan to go there this weekend.

Emily's cheeks are so kissable!

Emily has been well-behaving so far, not much of a trouble maker :P. She is due for her check up in a few weeks at Kajang Hospital and IJN in August. Her chest wound is healing but the end part of it looks a bit rare and still has a small hole in the skin. I know it doesn't hurt her because she seems fine when I bathe her or put antiseptic on it. But it still worries me, but we will wait until the next check up to ask the paediatrician.

At the last check up, the paed could still hear murmurs in her heart. I suspect this is due to the ASD which may not be entirely closed up. But I think it's not something to worry about since she is doing pretty well now. Even pre-ops, the doctors didn't seem too concerned with the ASD and they were concentrating on fixing the large VSD. They did mention that since they were doing the ops to close the VSD, they will close the ASD as well. So I believe the residual ASD should not cause problems.

We have arranged for our mothers to take turns in caring for Emily while we are at work. This week, my dear mum is down from BP to help us. She took the bus here and I went to Tsk Selatan Station by KTM to get her. Was my first time to the new bus station, it's very big and I think still under utilised. I am sorry to trouble the 2 grandmothers but maid is still not here. Checked with the maid agency and she said that the maid is expected to arrive only late August, so we have a few more months to wait. My mum also helped us do some rearranging of furniture (with the help of my sis' maid) in our living and dining rooms and now it looks a bit more spacious. I need to do more organising and cleaning and also need to clear some stuff. Didn't manage to clear the maid's room yet, so hubby need to make time to do so soon. Lots to do but we are much more settled. Getting into a good routine, tight/rushing but manageable.

Journey continues...

We have been home for 4 days now.Emily is feeding from the bottle very well. I think she will be catching up with all the weight gain that she needs very fast.Tomorrow, we are going to have her stitches removed from her poor chest. I think it will hurt quite a bit for her but compared to what she has been through these 2 months, it will be a breeze. And moreover, this is the last bit from her surgery. She should be gaining speed to a full recovery and also start growing like a baby should.

Whenever I bathe or change her, I will cringe at the sight of the stitches and think about the permanent scar on her chest. I hope she will take the scar positively and take it as a reminder of what she has been through and how precious life is.

When I look at her now, how she sleeps so peacefully, how she feeds to quickly and how she sometimes flashes her smile that melts my heart, I am really happy that the worst times are over. I tend to forget that she may have other problems related to her syndrome. But then again, it's a 'may'. So I guess there is really no point in thinking about the mays and maybes. Well, I should just enjoy taking care of a young life and nurture and love her as I did her older siblings.

Family and friends have been very supportive of the whole situation. Concerned family members and friends from work and church have visited us in the hospitals and at home quite a bit. We are really thankful for all their concerns and especially for their prayers which I really believe helped Emily a great deal in her recovery. As suggested by my dear friend, I went to church today to offer thankgiving mass for Emily.

As I said, this is a journey and Emily, we as parents and her siblings, as well as all family and friends are in this together. And the journey continues, we hope we have more happy times then sad ones...

Home Sweet Home

Emily was tranferred to the normal ward in IJN since last Saturday, after 7 days in ICU. I stayed with her until she was discharged yesterday, 10 days after her operation. She has improved tremendously in the last few days. Her lungs improved and they finally took off her oxygen successfully after trying for the last few days. I was also worried about her feeding too. She has been too long feeding by tube that she has forgtten how to suck and swallow. I tried relentlessly and finally, she got it! I was elated. It was drastic improvement from day 9 to day 10! I though we would need to stay another day or two but the nurse told us we can go back yesterday, yeah! Finally!

Emily is home and doing very well, feeding like a pro. I bathed her for the first time in many weeks, she wakes often for milk. She is having a special diet with low fat for 6 weeks because of side effect from the surgery. So I have another issue. I have been expressing milk and storing it in the freezer and I am running out of space! I am thinking of buying a freezer or my milk will have to be discarded. What a pity that would be.

Need a bigger freezer!

Anyway, we need help with the care of Emily. I am hoping to get MIL and my mum to help out till the maid from Phillippines arrive in a few more months. But I am so very glad and grateful that Emily is home now after staying nearly all of her 2 months of new life in hospitals. Looking forward to a more routine and normal life for all in the family.