sleeping on the tummy

July 29

in nampyeon's words... 'i was so afraid all she could see was darkness for her whole life'.

we worried for days. on the 28th, they did the eye test but said that they would have to do it the next day again. when we called the nurse the next day, she told us that the optician will call us to update the status. we waited for the whole day, and we panicked, because if the results were good, they wouldn't have said that right? nampyeon said it sounded like they were trying to push the responsibility to the optician. i was so upset i was in tears when i laid in bed that night.

later around 1130pm, nampyeon came into my room and delivered the verdict:

minzy was fine!!! they didn't see anything wrong with her eyes and they would check again mid august (2 weeks later). it doesn't seem like a weekly check would be needed.

i was so overjoyed i jumped around and hugged nampyeon happily. nampyeon said he couldn't take it anymore when they didn't call the whole day and had to call. he was so afraid she won't be able to see, and i was already bracing myself, searching for articles on how you should accommodate blind babies. i prayed to kinzy and linzy everyday hoping that they would protect their sister, and let her see the world. thank you my babies.

Jul 30

we could visit with a happy heart, knowing her eyes were fine. but i still couldn't help but worry. minzy's eyes were diagnosed as a rush-type - meaning it happened suddenly. what if it reoccurred suddenly again? why can't they check it often? the nurses assured that since the results were good the chances of re occurrence is close to none. i really hope that was the case.

with this big headache gone, minzy could finally be free of more surgeries (i hope).

Minzy was sleeping on her tummy today. i thought this wouldn't happen because of her stomach surgery but i guess they felt safe to do so. i could finally see so clearly her scar from the heart surgery. it pains me, but i was also so proud of her. she fought through so many things.

minzy seems to be having a hard time sleeping on her tummy. she couldn't move as freely as before and sometimes she was trying to push herself up. she kept wriggling (i'm sorry to say but it's so cute). her knees were bent in a kneeling manner and it looks so super uncomfortable. 

she could barely open her eyes to see us, but she did.

and she has such beautiful eyes. my little warrior minzy.

you might have noticed (or not) that she has this tube in her nose that's stretching her nostrils upwards :( the nurse says that they shifted the feeding tube from her mouth to her nose, as they didn't want her to get trauma from choking on bottle feedings. apparently the tube in mouth causes that often. i can't imagine having a tube stuffed down your nose to your stomach... oh no... T_T

minzy was 1.22kg. she hasn't grown much, only 0.01kg since last week. would this be her final challenge? she was putting on so little weight and she was so tiny. 

please let her overcome this final hurdle...!!!!

milk bottle drinking!

darling minzy is 1.2kg today! i am so so glad her respirator has been changed to the lighter version. she doesn't have any IVs on her arms and legs for once... no needles!! her infection is gone and amazingly, her platelet issue seems to be solved too. they are not sure why because there has been no particular treatment given. i guess it's just a temporary thing?

the only thing is... doesn't the respirator seems so tight? it just scrunches up the sides on her nose. can you imagine living with a pinched face for the rest of your stay.. so uncomfortable...


minzy began to drink from a milk bottle. it was such good luck for me to witness it on my visit! i don't know why she's grabbing her head while being lifted but i love everything she does.

the nurse burped her afterwards and laid her down halfway through. i think it was probably because the machine started beeping so it wasn't good to continue. after she adjusted the machine, she began to feed her again until minzy flailed her hands as if to ask her to stop feeding. milk bubbles formed instead of saliva. i kinda feel she was more milk out than in. lolol. since she's supposed to only drink like 5ml from the bottle and have the rest from the tube.

minzy blowing a lot of saliva bubbles and stretching her arms and legs. i want to give her a good hug whenever she stretches her arms out like that!!!

scrunching up her face, wiping her saliva everywhere and then flipping that very small shred of skin from her head to her left eye. aiyoh. what is making her so irritated and uncomfortable..??? is it the babies crying in the room... or her tight respirator... T_T

after that she started to open her eyes a lot and after sticking out her tongue and all her saliva outbursts she gave a little smile!!! too cute!!

doesn't this picture of her sticking out her tongue looks like she's smiling...? XDD

my little angel. her hair is cool as always. the nurse says it's in patches because the skin on her head is beginning to shed off. her hair looks much lesser than at birth too, as all the hair around her forehead is gone. her brows didn't look so droopy now and her skin has gotten lighter (tho still darker than most babies).

i was able to touch her like last time. the skin on her eye was bothering me so i took that off. i'm glad that this hospital allows this minute mom-and-child time. i've heard of hospitals that did not allow any visits until they are discharged (due to the virus)... thankfully it's not like that here.

her eye test is on the 28th... i'm only wishing for good news... please let her get through this T_T

outside, i came across the mom who had the same 23weeks 6 days delivery as me, only hers was twins. we seem to have the same visit times so i guess we will meet often. amazingly, she was registered on the naver cafe nampyeon posts in so she actually recognised nampyeon from the post (also because my name is so unique...). both her twin sons were experiencing exactly the same illness and having the same surgeries and issues throughout. born just 4 days before minzy, they weighed much more at 1.7kg. they had heart surgeries as well, and there was some issue with the intestines but it didn't require surgeries yet. there was detection of retinopathy but it wasn't as serious as minzy. hopefully the little babies will pull through with minzy. and they are actually in the same room as minzy! what fate.

preemies are just such miracles sometimes...

post-surgery recovery

16 Jul

whilst the doctor called to let us know that she was on the lighter respirator again just before our visit, they acually moved her back to the heavier respirator because they said she seemed to have difficulty with the lighter one. so when we see her, she had 80% of her face covered again. this time, her pacifier was taped to her face so it wouldn't fall off. the respirator was stuck tightly as well. the nurses say that this was so the air wouldn't leak out. if the pacifier drops off, the air will also leak from the mouth. but they assured me that the tapes were meant for skin and wouldn't be painful when peeled off.

post-surgery, it seems that minzy's immunity went down and she developed infection again. they gave her antibody dosage but it doesn't seem like it would be as bad as previously. on the bright side, she was fasting for the surgery but as soon as she began eating again, she put on a little weight and she was now 1.02kg. she could also open her eyes but not for long.

oh.. i was a bit surprised when i saw that she had the diapers on her face. the nurses told me that it was made for her to hug, like a pillow. i guess this is the result of buying too many diapers that she wasn't able to wear. we bought several packs of diapers for babies under 1.8kg but due to the poop pouch, she wasn't able to wear it and urine kept leaking.

i've always thought that she couldn't sleep on her right side because of the poop pouch but today she was sleeping on her right. i could see the scar left behind from her heart surgery. it stretches from the armpit to her upper back. i did hear that the scar will grow in size as the baby grows. at least it doesn't look too obvious now... i'm not too concerned with scars since i kinda think of them as cool and ferocious, but everytime i see it on minzy it just reminds me what a big cut she went through considering her tiny body T_T

nampyeon took her little kicks and zoomed in on her eye.

nurse came in to make some adjustments to minzy's sleeping position and patted her. i'm full of envy. i think, i am always amazed at how minzy is always a little bigger than an adult's palm. she's just so small...

after that the nurse actually told me that i could touch minzy!! i had to wash my hands again and change to a new pair of gloves, and i couldn't touch my phone after that. it was the first time i was touching minzy and i was so, so happy. despite not being able to feel her skin to skin, i could still make out her soft little patches and i was surprised her fingers had such strength, and it was poky. her arms was growing a little chubbily (she was at 1.02kg) and it was nice to the touch. she would occasionally clutch my finger (or rather the glove area) when i place it in her palms, then spread out her hands again. i was able to pat her legs and body as i soothe her. also, i heard her let out a very very tiny cry twice that lasted for just 2secs. it was so so cute i wished that i had it recorded...

i spent almost an hour in there until the nurse had to chase me out because it was almost 3 and nampyeon hadn't gone it. when he did, he could only have 10mins with her since there was some meeting the nurses had to attend. still, nampyeon got to see minzy opening her eyes and flailing her arms and legs in that short span and he was satisfied.

we had tendon in the area after the visit... good lunch!

retinopathy of prematurity

10 Jul

true enough... we were informed the next day that there was a problem with minzy's eyes. it seems that she has gotten some 'rush-type' retinopathy of prematurity - a condition where the blood vessels in the eyes are all screwed up suddenly. they were monitoring her eyes every week because preemies are very likely to suffer from retinopathy due to the oxygen treatment. too much oxygen can be deadly, although the little ones can't be denied oxygen. the doctor who explained to us was not an optician so he roughly told us that she had to be operated on, like it or not. the chances of success was about 60-70% and she could be blind if it fails, or if treatment wasn't administered.

to me... i feel that the eyes are one's most important sense organ... and i couldn't imagine my life if i wasn't able to see. i broke down that night, thinking what minzy's life could be if she couldn't see. nampyeon said we should wait for the optician's diagnosis before we worry too much in advance. but i was so so scared.

11 Jul

the next day, the optician called us and explained the surgery. he said that it was a straightforward procedure - they would use laser treatment to 'stick' the retina in place so it wouldn't move around. the crooked blood vessels had caused the retina to move (i wonder if it was related to the black and white portion of the eye separating as i had seen the other day). as it was laser treatment, there was no cutting involved but she would still need to be completely anaesthesized so that no movement will be involved while she's being treated. however, if this surgery fails, they would have to go with the analogue way of cutting up the eyeball to treat the vessels... i really hope this wouldn't happen.

13 Jul

Minzy's surgery was scheduled at 5pm that day and we were told to come around 3+ to approve and sign the papers. we only set off about 3 though, and at about 4pm they told us that they would start the surgery early since the previous surgery ended earlier than expected. in the end we reached around 4.30 but the surgery was already in place.

the doctor said that the surgery would be fast - 30mins was all they need. we waited till about 5.30pm before asking if everything was ok as it was way past 30mins. they forgot to mention the beginning and the ending tidying would require 30mins as well. i was going to pump but held it in since i thought it would be done fast but in the end i went to pump around 530, and the surgery finished at 5.40pm. i had to keep my pump inside and rushed up to the treatment area, as i didn't want to miss accompanying minzy back to NICU - the nurse mentioned we could do that when surgery was over.

the doctor explained the surgery to us, but it wasn't great news. her blood vessels were all messed up but they had done all they could. the good thing was she didn't have any vessels bursting or bleeding in the eye, which would have worsened the situation. the bad thing was it was more messed up than expected, and they will have to check again in a week to see if the vessels were able to untangle themselves post-surgery. if it doesn't, she would have to go through the analogue surgery... which had a very high failure rate... which would result in blindness should it fail...

there was still a week left and nampyeon assured me that we still should not worry too early... because if it does happen... we will have the rest of our lives worrying about it... and he said... that minzy has been so unfortunate so far... that perhaps something good will happen. surely, she can't be having unfortunate things happening to her all the way?

i'm not sure if i should feel assured. but my heart broke when i saw minzy that day. whilst she was free of needles on her hands just 3 days before... she now had needles on both her hands - one feeding blood in. she was breathing fine before but due to surgery, she moved back to breathing tube. her left leg had been poked for blood test and was in a tiny bandage, and the oxygen monitor moved to her right leg. she had patches on her eyes to prevent light post-surgery, but they said it would be removed around 10pm. she had started eating again, after starving for almost a day due to the surgery.

just 3 days before... she was doing well. she was doing so well, i thought it would be the end of her suffering but it was not. i don't know why heavens could be so cruel to a baby. could it be my punishment to see her like this?

baby minzy didn't move as much, but she still moved a little as the anaesthesia wore off, wriggling her leg and sucking on the tubes. she didn't move her hands this time... it must be in pain from all the new injections T_T

trying her best to eat? that little lips.

noticed that her hair is developing a funny pattern..

poor baby.. she doesn't even know what's happening to her. but she's being subjected to a cage, injections after injections, pain... still, she keeps on kicking her little legs, waving her little hands. perhaps it is bliss to not know at all... please let her suffering come to an end with this T_T i have been a bad mother... but i will make it up to her for the rest of her life.

the little santa minzy

7 Jul

We received a call from the hospital with regards to Minzy's new condition: Neonatal Thrombocytopenia. Apparently her platelet count has been constantly deteriorating, but they do not know the cause. they asked if i could come down for a blood test to determine if it's a hereditary factor. i read that the only way to cure this is a blood transfusion, but as they are not sure of the exact cause the remedy can't really be determined. currently it doesn't pose a big threat... but it could mean constant blood transfusions and a need to be careful of everything that causes a cut on her T_T

neither me nor nampyeon has a shortage of platelets or anything odd in our blood (nor anyone else in our families)... i highly doubt it's hereditary... sighs... i guess we can only know once we have our blood tested. Minzy gets a blood transfusion whenever her platelets run low. poor baby... getting blood tests everyday......T__T

9 Jul

so we went down for our weekly visit and had our blood drawn for the test. at first the doctor only needed my blood but after that they decided that the father's blood needed to be drawn too. nampyeon hates needles but seems there was no way out.

when we got to the nicu area, a male young doctor came over to draw our blood. from the way his hands trembled while drawing nampyeon's blood... i could tell it's bad news. i had enough blood drawn to determine who will be poking me more than once to get the right vessel. joking, i told nampyeon that maybe he would be unlucky enough to get himself poked several times.

karma hit me right back. the same doctor poked me TWICE and could not find the vessel. he called another doctor who also had trembling hands, and also poked me TWICE before he decided to draw from the back of my hand that had the largest vessel. they were moving the needle around every poke - it was terrible T_T

Lesson learnt: always have doctors who look inexperienced draw from the back of my hand............. and never laugh at someone scared of needles. whenever i think i have the worst luck in needles... i think of Minzy who gets poked almost every week in different places for 2 months now. that tiny body with all the holes. and i immediately know - these are not even actual pains.

we proceeded to see minzy after that. she was 930g and so much bigger!! and she had changed to the lighter respirator, which gives less air but since she was able to breathe properly it seems ok. the respirator and pacifier looks like santa's beard. amusing.

she kept fluttering her right leg. i wonder if it's a baby's jerk. she also likes to stretch her hands over her hand. hehe. such an active baby. and that little yawn at the back she tried to cover up...

i could see more of her face now that the big respirator was off and she is so so cute. at first she kept covering her right eye with her hand, and when i peeked over at the top her right eye was actually opened. and then, as if caught, she lowered her right hand.

Minzy finally opens her eyes to look around. she has a habit of spitting out her pacifier. i wonder if she dislikes it. but her saliva went all over the place after she punched the pacifier out. oh nooo. i get to see her full face though! eeeeeeeeeeeeeeee love her so much!!!

did you catch her iron man fist after she punched out the pacifier...? and all that stretching that follows. *love*

i think her leg kicking is so cute. i can't get enough of her. but i was chased out by the nurse after that oh well.

daddy got to see her full face from start to end though. he even captured her doing a manse pose just for that 2secs he was distracted.

and then he was chased out by nurse as well just when she became ever so active towards the end of the visit. sighs.

i think this is probably minzy at her healthiest and most active stage? but i did notice something weird when i looked at her eyes. the black portion of the eye seem to keep moving away from the white portion. but i didn't know how to explain to the nurse so i just said the eyes seem weird. the nurse didn't think too much of it and brushed it off. but it seems that it was an indication of a bigger problem to come... sighs...

Minzy gets a respirator

2 July

I couldn't see 80% of Minzy today. the doctor told us that she would be changing to a respirator to train her to breathe through the nose, and that her breathing tubes would be removed. so nampyeon and i was kinda expecting her to cry a little and maybe we would be able to see more of her face. however, the sight that greeted us was so different. the respirator covered half of her face and she was sucking a pacifier, so even the bottom of her face couldn't be seen. and she looks like she has a turban on. why does this look more serious than having the breathing tubes...

curious, i asked the nurse how the feeding tube and pacifier works together and she took off her pacifier to show me. somehow minzy must have been super disturbed because she started struggling soooo much. but she was sticking out her tongue while struggling and it looked so cute. towards the eye she opened her eyes for just one second and that was it. i don't know how she could be disturbed so much and yet still keep struggling while sleeping!

In fact i get to see all kinds of things today even though Minzy didn't open her eyes at all. the nurses were cleaning her dung bag - this was done every 2-3 hours. the bag is only changed every 3 days. they used this syringe to suck out the shit. ahhh i really hope they tuck her intestines back in before discharging her..!! iam so afraid of hurting this baby!

her nappy was changed thereafter but i shall not show the video.

it seems that the respirator needed to be cleaned every 4 hours as there's mist build up inside. i was lucky i get to see the whole process. minzy immediately covered her nose once the respirator was removed. i can imagine how irritating the respirator must be... thank goodness she was breathing well, if not they would have to stick those tubes down her again, and keep repeating the whole process till she learns to breathe.

next she was pricked for blood sugar test. unfortunately it seems she has some platelets issue and her count kept dropping. the condition is Neonatal Thrombocytopenia and only blood transfusion can cure it. since it was still not very serious (i think), they started to use steroids to treat it, but the side effects were the sugar level that went up, so they have to do blood test to make sure it doesn't go too high. at the end i think she sneezed twice and there was a little sound made! the nurses did assure me that she could cry so that was all good. we were so worried about every test that she was going through - can she see? can she hear? can she cry? such simple things that we were born with... a premature baby cannot always have them all T_T

minzy yawning and twitching as usual... is it me or is it because the respirator is so heavy that she kept tilting to the side...

0ur mini minzy slept all the way when papa was visiting and so he didn't take any videos in the end. when she was finally about to wake up, the nurses chased nampyeon out saying she had to go through some other tests... poor nampyeon. since minzy didn't really open her eyes again, i wonder if she knew we were there?

Minzy looked so swelled up again, with all the rolls under her face. the nurses did say that it's because all the stuff on her face is pressing her thus causing the rolls but i'm sure it's a mix of both. she does look different every time i visit. i wonder why her face is always the first to bloat when she's under treatement. she's 790g today. hopefully she reaches 1kg when we see her next time. looking forward to how she changes next time... and i hope they take off the respirator soon since she is breathing well! it is pressing too much on her face. ouch...