Emilia is 3.5 months old

Emilia has been sucking in her lower lip and biting it. I tried looking in her mouth and checking her gum but I don't think she is teething yet. Maybe she now found a substitute for a soother which keeps dropping from her mouth when she cries?



And now she brings her both hands together and loves putting her fist in her mouth.

She has been giving us a lot of problems with sleeping. She resists naps and sleep and we spend a lot of time soothing her in trying to make her fall asleep. Last several days, we have been taking her out for a car ride because she couldn't fall asleep despite being sleepy and tired. She was such a good sleeper so I don't know if this is temporary 3 month old baby thing or she really has a sleep problem. I hope it doesn't get any worse than this.

Merry Christmas from Baby Lee

Merry Christmas everyone! This is my 1st Christmas and I will certainly appreciate lots of presents from mommy, daddy, and of course, SANTA!!

We took her first Christmas photos at home... yeah, we didn't want to go to a professional photographer for various reasons (with colds going around and other things) and we tought we could easily shoot some X-mas photos of Emilia. Well, we were WRONG. It is so hard to take baby pictures, especially because Emilia does not yet have a full head control and sitting upright with a steady head for more than 3 minutes is too tiring at her stage. In the end, we got some nice ones but I am too lazy to touch up the photos (things like our living room window shutters in the background).

Emilia's 100th day party

Despite being anxious about catching a cold, I invited our immediate family members to celebrate Emilia's 100th day in adjusted age. She's been through a lot and I think she deserves a nice party, pretty cakes, a beautiful white dress, and lots of photos.

Ex-preemie gets hospitalized for a cold

Yesterday I got a surprising email from a mom I befriended with during the NICU days. Her daughter's incubator was next to Emilia's and she and I were quite close before they got transferred out..

Any way, her email was telling me to watch out for a cold/flu because her baby got hospitalized again because she got sick with a cold. Apparently a visitor (her niece) had a cold and my friend's whole family came down with the cold too. For some reason, her preemie baby girl was the last one to get sick, but most seriously ill. She was too sad and upset. She said all the alarm bells and noise in the hospital brings back the terrible memory from the NICU days and the worst is having to watch her baby cry.

Her email was a sad reminder how vulnerable our babies are just as the holiday season is starting off with more visitors into our house. I do ask them to wash their hands before touching Emilia but I really can't see if they are washing thoroughly or simply dipping their hands in water. Also not everyone knows that after you wash your hands, if you touch other things, like your cell phone, your hands are not clean any more. That is why I have the alcohol sanitizer near Emilia all the time. Sometimes I don't want to nag people to use the sanitizer because I might offend them, but offending my guests might be better than having Emilia back in the hospital.

Emilia is 3 months and 1 week old

Bringing Emilia home also brings me a series of medical appointments, almost one each week. Perhaps having a newborn baby is the same too. I don't know.
RSV shots, her paediatrician's office, physiotherapy, CCAC visiting nurse, York Region Early Intervention, NICU follow-up clinics, eye check-up, Sick Kids respiratory... and today I got a call from York Region that it's almost time for her infant hearing follow-up test. She needs to go all the way to Ajax for a hearing test next month.

She might be going through a growth spurt right now, but she's been waking up more frequently in the past few days. I have been just feeding her whenever she's fussy but I am not sure if that is what I should do. I don't want her to get into a habit of getting fed (or being put on breast) when she cries.

Respiratory wise and growth wise, she is doing well, I believe. I just hope she does not resist too much when it comes to her sleeping (and nap) time. There was a time when I just put her in the crib when she was drowsy and she would just fall asleep herself. Now, on some days, none of my soothing techniques works and it drives me crazy.

Her 100th day is coming up (Saturday). I am going to have a small party with my family on Sunday. It's not her "real" 100th day any way, but I want to do what I couldn't do while she was in the hospital.

Obsessed with developmental milestones

I have been a bit obsessed with the developmental milestones that Emilia is supposed to meet. I get these newsletters from Baby Center and Pampers that announce "this week(month), your baby is suppsoed to do ...". Though I think Emilia has been meeting all her milestones so far, it's still too early to tell. Of course every baby is unique... but I can't help but wonder whether Emilia will be developmentally delayed down the road because of her premature birth. This is the reason why I am so obsessed with giving her exercise and sensory stimulation. It's as if I must "undo" any effects that premature birth has on her if there is any. Sometimes I am singing, reading, talking, and playing with her as an obligatory duty, not for enjoyment of the time I spend with her. And of course, all the health care professionals we meet always ask me if I am giving her LOTS of tummy time. I want to tell them she hates tummy time and it's nowhere near the 20 mintues/day recommendation, but I simply tell them I put her on her tummy "as much as possible" and then I start to feel like an inadequate parent.

In the parenting book I am reading these days, the author says babies are like snow flakes. Each baby is a unique individual and we cannot simply categorize them and expect them to act this way at this age and that way at that age. Everyone says I should enjoy the baby while I can. Yes, I will try to be her best playmate rather than her personal trainer.

Bumbo baby seat

I bought a Bumbo baby seat for Emilia few days ago. I thought it was a good way to have her started on sitting... honestly it's so hard to take pictures of her in a sitting position because I have to hold her head to take a good photo. The chair seemed like a good way to get her strengthen her neck muscles too.

Well, she was protesting so much at the first sitting that I almost put it back in the box to return it to the store. Her head was wobbly and she was pulling all her mighty strength to keep it steady above her shoulders. What a workout it is for a baby to just sit around. Eeach subsequent time I put her in the chair though, she seems more comfortable and managing her head a little better. So the chair is staying with us.

1st Day - was crying at the top of her lungs for the good 3 minutes of first trial

2nd Day - teary eyes (and drooling) but still okay

3rd Day - not 100% happy but looking around and starting to enjoy the view

4th Day - couldn't get a good picture but no crying no cringing!!

Emilia gets her 2nd RSV shot

We went to NYGH today to get the 2nd RSV shot for the season. Last time we didn't see any other baby in the room and there was no wait but this time there were 2 babies ahead of us and 3 babies after us. It was a crowded place. It looked like all of them were babies discharged from NYGH's NICU (the nurses knew the babies and moms by name). None of them was carrying an oxygen cylinder or a oxygen sat monitor.... although the baby next to us had a feeding tube still. He must have a feeding issue. I felt a bit blessed that Emilia was at least eating well. I am happy that she doesn't have oxygen AND feeding issues... which would have made her a very frail child.

Well, while waiting in the waiting area, Emilia passed some gas and I had a feeling it was not just the wind... soon, she started squirming and then eventually crying and crying. As soon as we got called in, I had to change her poopy diaper with lots and lots of wipes.

She got one shot in her right thigh and this time she made sure that the nurse and Mommy knew she was not happy at all. She was crying so loudly. It was her "I am angry" cry.

The nurse said the next shot might have to be divided into two, one in each thigh because they don't administer more than a certain amount in the same place, and based on today's weight, she may exceed that amount when she comes in next month. By the way, she was weighed and it was 6.13kg.

Emilia is 12 weeks corrected

So, Emilia is already 12 weeks corrected. In actual age, she turned 6 months old yesterday. She had her 6 month vaccine a few days ago. She didn't even cry (and Mommy is not lying).

The NICU days seems like ages ago but it's only been a little more than a month since she came home.

She doesn't nap too much these days that it's even harder for me to update this blog. On the bright side, she sleeps through the night without even making any noise, sometimes up to 10 hours. Hmm... I wonder if this is the reason she has not gained much weight for about 5-6 days. I feel I need to compensate for the milk she didn't get overnight but she still seems to eat the same amount during the day. I bought some children's songs CD to play for her... Actually the real reason was for me to sing along and learn. I need to know these songs before she grows up and asks me how come I don't know any song.

She is licking and sucking her hands all the time. I am becoming even more paranoid about hand-washing now that her hands are constantly in her mouth.

She is getting about 7 hours off oxygen. I want to transition her slowly so that this weaning does not cause her any setback.

Birthday and milestones

Emilia's 100th day (in corrected age) is fast approaching. Actually I feel weird labelling it the 100th day. The 100th day since what? The day she was "supposed be" born? Nonetheless I am not going to just let it pass as we didn't get to have a proper celebration for Emilia's actual 100th day.

Emilia's bithday is May 31 but just like other moms of preemies, I am also wondering whether I should throw the 1st birthday party on her actual birthday or her "supposed" birthday, which is the due date. I hear a lot of preemie parents have a mixed feeling about their baby's 1st b-day...and me too. It's going to be a happy day because Emilia will have made through all the tough time and grown up to be just like other babies but it marks the day I failed her, it's the day she was NOT supposed to be born, it's the day I cried so much and it's the day she was resuscitated and sent to NICU. Besides she will be only 9 months corrected and won't act like other 1 year old birthday girls. But celebrating my due date doesn't feel right either. That due date is meaningless to us except in calculating her corrected age. Should we celebrate the date she came home with us...? Maybe. To my family, that's more like the day she was born. I know her birthday is still half a year away so I still have plenty of time to decide.

Emilia, 2 months and 3 weeks old

Emilia's length is about 59cm. Her weight is just under 6kg (13 lb). She has gained 1 kg (2.2 lb) since she came home 1 month ago.

She now wants to be picked up and held all the time. She doesn't go to sleep unless she's held. There was a time when she happily fell sleep after eating, but now she gets cranky and cries when she's sleepy. She has a lot of cat naps during the day.

Emilia now plays with her hands. She started to lift her hands and bring them to her eyes, nose, and mouth. She is not yet holding her toys but her hands are reaching out and brushing against them. I would say she's "learning" about her hands now.

And I know nobody will believe us but she said "mama." Yeah, I know she wasn't actually calling me but she said something very very close to "mama" when she and I were having some convesation. A very touching and emotional moment even though I know she was just cooing.

Pictures from Nov 22
*She kind of looks like me when I was a baby... but everyone agrees on that she looks like her daddy*

Went to Chest Clinic at SickKids

We went to the Chest Clinic at SickKids yesterday for a checkup on Emilia's breathing, lungs, and oxygen requirements. The nurse practitioner and the doctor both were amazed by Emilia's growth and also they said her breathing looks fine and her chest sounds clear. I think they were expecting to see a small ex-prem who was laboriously breathing with and without the oxygen nasal cannula. They said the most important things for these babies are 1)feeding/growing and 2)cardiac. Since Emilia does not concern them with these two things, they said I could start to wean her off oxygen, little by little. When she finally reaches a time when she's completely off oxygen during the day, I have to call the clinic and let them know so that they can assess her at that time. It's a a good news because I was initially told that they would not attempt to wean during the colds/RSV season. Now everything depends on how well Emilia tolerates. When she's ready, she's ready and she is going to let us know.

Some photos from last week and this week

Enough pictures, can I sleep now??

Enough of tummy time, can I eat now?

Emilia is 10 weeks corrected age

She is 2.5 months old now. Still growing well and developing normally. I can't say how grateful I am that she's doing well. I stopped worrying about her oxygen altogether. I think it will be better if I just forget about it until she comes off oxygen next spring, although I think I will ask the respiratory medicine doctor at Sick Kids when she goes to her appointment next week.

She weighs 5.7 kg (12.5 lb). An amazing transformation for a 25 weeker who was born merely 870g, as all the nurses told me this week when we went to MSH and NYGH.

She sleeps longer chunks of time at night. Yeah, I am one of those lucky moms who can actually get some good sleep at night. Some nights I spring out of bed to check the time and check on her because she goes on sleeping for 6 hours sometimes without feeding. I get all worried about dehydration and starvation, but the doctor and nurses tell me not to worry because she's still gaining weight and she's old enough to tell me when she is hungry.

Developmentally, she had her first "social" smile and laugh last week. Now I know that it's not just passing the wind when she is smiling at me. She does smile and laugh (like "real laughter" laugh)a lot during sleep though.
She is having a better head/trunk control and her thumbs are definitely better. She is less reluctant to open her thumbs now. Yesterday when I was lifting her up by her shoulders, she tucked her chin in to keep her head elevated. I almost cried with joy. I had been practising this with her for a week to get her neck muscles working when being lifted up and she finally got it I think. My mom says when she raised me and my brother, she didn't have to do these special exercises and tummy time. She says babies naturally have head control and roll over when the right time comes. Maybe the modern day moms are making the mommy job a lot harder than it already is but I don't think there is any harm in trying to keep her going in the right direction, at the right speed.

RSV shots and ROP eye exam

Emilia went back to Mount Sinai have her ROP follow up exam on Monday, and as it turned out, it was her final ROP exam. The result was very good: vascularized to Zone 3 and Stage 0. She just needs a check-up in 3 months with an paediatric ophthalmologist.

On Tuesday she went to NYGH to get her first of a series of Respiratory Syncytial Virus (RSV) shots. RSV is very common in babies and children but it can result in much more serious consequences than a cold in preemies like Emilia, especially because she has chronic lung disease. Just as they don't have vaccines for common colds, there is no vaccine for RSV either. The shots just inject antibodies for RSV. She needs monthly shots until March... Hopefully good hand washing and RSV shots will protect her from getting colds this winter.

Having a reflux baby also means...

Yeah my wrist is hurting to the point that even using chopsticks is painful. But I realized early this morning that it also means lots and lots of cuddling time. Soon she will think cuddling mommy is a thing of a baby and declare her independence. And some more time later she will think it's uncool. So while she fits perfectly in my arms, I spend hours and hours holding her and patting and rubbing on her back and kissing her cheeks.

Emilia laughing and smiling (and talking)

Emilia and I are staying at my parents' place.
Today Grandma was having a chat with Emilia and she was responding with smiling, gurgling, cooing, and laughing too. I have not seen her smile and laugh so much. She went on for about 5 minutes but I completely forgot to record it (even though we just bought a new video camera few days ago) until she was almost done...

(Recorded with my smartphone camera)


(Recorded with Sony camera)

Emilia's physio session

Emilia has a physiotherapist visiting her at home on a regular basis. We got this PT through CCAC. (We also have a visiting nurse from CCAC to check on her once a week). I decided to get physiotherapy for Emilia just to make sure she's physically developing normally and if there is any delay, we can intervene early rather than late when it's more difficult to correct the situation.

So far the PT says Emilia is quite good, considering her age and also the time she has spent just lying in hospital bed. However the PT showed me 3 more types of exercises I should be doing with Emilia for the next two weeks. When she was demonstrating, Emilia kept crying and screaming our ears off. Tears were rolling out of her eyes and she had pouty lips... what a sad face she was showing. I wonder if my heart will be strong enough to force her these exercises when she cries like that when I am by myself. I think that is why I need a third party person, like the PT, to come in and do the exercises for her.

Reflux Baby

Emilia has GERD (reflux) and though it is not a condition of prematurity, it partly comes from the fact that a feeding tube had to be placed through her nose and esophagus into her stomach for a long time. Also of course, the muscle between the esophagus and the stomach needs to be mature. I know a lot of term babies have GERD and the parents probably share the same story. It's very hard to hold the baby upright as the baby gets older and heavier. Emilia likes sitting in her bouncy chair but she gets restless after a while. If I put her down on her back, she starts refluxing and grunts and moans. My wrist is hurting so badly already and she's not even 2 months old yet.

Pictures - Emilia @ home

Emilia is 7 weeks old corrected

Emilia now weighs over 11 lb (over 5 kg). She has grown a lot since she came home. I think she has adjusted to her home really well and quickly. She sleeps well at night (sometimes sleeping through night) and eats and plays well during the day.

All her life so far, her living space was limited to her bed space area in the hospital, in the same crib and around the same walls. Now she gets to move from one room to another. I deliberately let her spend the day time in the nursery, late afternoon in the living room and the sleeping time in the master bedroom (where her crib is). I want to take her out for a stroll in the backyard and the neighbourhood but this past week's weather was just too awful - either rainy or freezing cold for her. Unfortunately the weather will not get any warmer than this next several months.

She focuses her eyes more now. She actually looks at mommy and daddy. She now even looks at the toys hanging on her bouncy chair and looks intently into the mirror I put in her room. So far she seems to meet her milestones, for a 7 week old baby. I have to continue to give her lots of tummy time and hand exercises but it's so hard to find the time that she is awake AND calm/playful.

We need to go back to her paediatrician this coming Monday. Last Monday's appointment was cut short because the doctor apparently was having a very busy day because it was a PA Day in the local school board. He told us to come back another day for a full checkup. I was so disappointed in him - he should have seen that it was not easy for us to travel to his office with Emilia, with her oxygen cylinder and oxygen saturation monitor. It took two adults to take her to the doctor's office! He was just too insensitive, I guess. Perhaps I should've expressed my disappointment at the time but somehow I felt I should reserve it to myself as I don't want my baby's care to be affected (and it was the first time we met him). Let's see how the 2nd appointment goes.


(This week's pictures to follow in a separate post...)

Welcome home Emilia

In her car seat, and actually in the car and going home this time

"Welcome Home Emilia" party

Emilia is HOME

Here she is! At home, with us, finally, 143 days after she was born. She is 6 weeks old, corrected. After two nights of rooming in with her, we brought her home yesterday, Friday October 21. She slept through her first outing, in her car seat, all the way home. It was the first time she saw the sunlight but yesterday was quite cloudy so she didn't get to really enojoy the warmth of the afternoon sun.
She was super good last night, sleeping really well.

Having a baby at home is not easy, as I knew, but it is a lot harder than I thought. There are moments when I almost lost my patience (yeah, already, only few days after rooming in with her). But as contrary to what I thought, having her on oxygen is not the reason why it's so hard. It's just the ordinary baby things that drive me nuts, like crying, fussing, having to feed every few hours, not being able to do anything because I need to hold her, ....

So far she's been good. I hope she stays clear out of colds, flu, RSV, etc. Even a simple cold could be very serioud for Emilia because she has a chronic lung disease.

I will keep posting her progress even though our NICU stay is now over. It's truly the beginnig of a new chapter in our family.

first night of rooming in

Here I am... sleeping in the same room with Emilia for the first time. She has been quite fussy and unsettled all evening. Either it's too quiet for her or she doesn't like this room. Now tjat we are in a silent place, the only thing I hear is her crying and it sounds louder. I feel very nervous... I can't even rest comfortably..
what have I signed up for?

discharge plan

So a few days ago the doctor told us that Emilia could go home. He suggested that we rent the oxygen sat monitor until the one from the government arrives. Once we ordered the rental, the whole process was very fast. I already got a monitor and two oxygen cylinders delivered. Tomorrow the home oxygen will be set up.

I have to room in with Emilia for two days and take care of her all by myself. If nothing happens and she is okay then we can go home on Friday. They say that I need to be comfortable being alone with her and doing all her care.

Let's see how this goes. Finally going home seems to come true.

Video 4: spitting out her pacifier

5, 4, 3, 2, 1, FIRE!

When Emilia was 11 days old

These picture are when Emilia was 11 days old and on the ventilator.This is how tiny she began her life. Less than 2 lb and her head just the size of my fist. This is how small we all began.

Taking Emilia's temperature for the first time; thereafter it has been my job

I was lifting up Emilia to help the nurse change Emilia's bedding in the incubator.

Dress up day

Today is one of those days that Mommy just feels like dressing up Emilia in something other than a onesie sleeper. Mommy doesn't care if people call it a tacky flower or big-bow head band. She thinks Emilia looks just gorgeous!
(And she's got such pretty lips!)

Emilia is seen by an Occupational Therapist

This morning the Occupational Therapist came to assess Emilia's bottling (sucking & swallowing) ability. As expected, she said there was nothing concerning. She is actually an "excellent bottler". So that means we are not going to be referred to the proposed feed study conducted at SickKids because the feed study is where spitter-uppers, vomitters, and babies with serious feeding problems go to. Emilia is not one of them according to the doctors because, for one, she is gaining weight consistently and loves eating. Apparently babies with feeding issues and serious reflux refuse to eat because food causes pain. The OT did find that Emilia goes too fast when she starts her bottle. She sucks on the nipple too fast at the beginning before she starts to pace herself. This sometimes causes the sputtering and choking, which can be prevented by her caregivers like myself.

Any way, while the OT was there with Emilia, I asked her about Emilia's thumbs - her thumbs are always folded (flexed) in her palms and she does not utilize her thumbs much. Even when I extend her thumbs out, they slowly go back into her palms. The OT showed me a few stretching exercises I could do for Emilia. She said it's not serious enough to require a physiotherapy but definitely Emilia should be using her thumbs more. Later I asked the doctor also and she told me the same thing. So, let there be one more routine in her exercise regimen.

Pictures from this week

Serious face

In car seat, but not going anywhere yet

With my maid, milk delivery woman, baby carrier, who is also called Mommy

Emilia is 19 weeks old actual and 5 weeks old corrected

Emilia is now 5 weeks, corrected age. And 19 weeks old in chronological age.

She now weighs 10.3 lbs (4675g). She is getting ready to come home. We are now waiting for the pulse oximeter to arrive. This machine takes about 3 weeks to arrive from the time we apply for it because I heard it is government funded (75%) and it is supposedly coming from the government. We applied for it last Wed, so hopefully they are processing it right now. We have decided she will be on home oxygen. That seems to be the only way to bring her home soon(er). As much as I hate the idea of home oxygen, I know it will also give me a peace of mind knowing that I will know that her oxygen saturation and heart rate are fine - it's a mixed blessing.

Other than the occasional choking and reflux issues, she is healthy and growing well. I need to put her on her tummy more often but it's not easy to find her in an "alert and calm" state. She is active and calm after feeding time but I don't want to put her on tummy immediately after feeding because it may aggravate her reflux problems.

She certainly is more interested in the surroundings and does not want to sleep all the time any more. She seems so interested in the people who pass by and stand around her bed space. She also looks at the ceiling lights and her oximeter monitor very intently - must be the brightness that fascinate her. She looks at them with such awe. I am afraid they are too bright for her eyes though.

She has one final ROP eye exam coming up. So far her ROP conditions have been improving and stable. The eye doctor said she would do the exam only upto 45 weeks gestation (5 weeks corrected) so I suppose next week is the final exam. I am so looking forward to the end of it because it hurts her a lot and she just hate the exam. Her eyes are forced open with a speculum and the doctor keeps shining bright lights in her eyes and pressing on her eye balls, so it is pretty upsetting to Emilia. She looks really sad after every eye exam. In fact every baby in the NICU hates it. You hear the babies cry from one bedspace to another as the eye doctor makes her round on the eye exam day.

We are counting our remaining days in the NICU. The nurses tell me babies thrive at home, even if they are on oxygen. I can't wait to bring her home.

Video 3: Tummy Time

Video from yesterday's tummy time.
You can check out how hard Emilia exercises...!
When she's really tired and wants to quit, she starts to groan and then cry.

Today she did much better but I didn't have chance to record it.

Emilia is one month old (adjusted age)

Emilia just turned one month old today. Her adjusted age is counted from her expected date of birth, which was September 8th.

So far, she is just as any other one month old baby. Cries when hungry, pees & poos, and sleeps. Nowadays I am also playing with Emilia to give her exercise & stimulating time as recommended. She gets tummy time, side-lying time, and eye contact time. She is doing excellent on her tummy, lifting her head high and turning her head from left to right and then again from right to left. Her side-lying time is basically just lying on her side and watching the Aquarium (a Fisher Price toy that goes in the crib). She wasn't too interested in the Aquarium until today. Today she was actually intently watching it. Her eyes follow bold black/white pictures when I slowly move them horizontally. She also gets to look around the surroundings when I carry her around her crib as far as her oxygen tube and other cords allow me. I wish the tubes and cords were longer so that I could carry her farther around the NICU. She looks at her musical mobile too. This also just started to interest her only yesterday.

Her growth is still satisfactory. The dietician was explaining to the residents that Emilia is a good example of a baby who became the average size from the 10th percentile when full term was reached. She was showing Emilia's growth chart to them and explained how she progressed last 4 months in her own growth curve reaching finally the 50th percentile.

Starting tomorrow, I am going to seat her in the car seat to get her used to it. She has been sitting in her bouncy chair but she needs practice sitting in the car seat too in order to pass the car seat test before the discharge. It's sort of a... test preparation. I don't want her to fail her first test.

Pictures from this week:

NICU mom's diary

It's October and we are still in the NICU. All the faces in the NICU have changed. All the moms and babies who were there when we first came to NICU have left.

I thought about a lot of things last night on my way back home from the hospital. Things like why is Emilia not progressing, is it something I am doing wrong, is her doctor doing what's in the best interest of her... and of course all these thoughts end up with the question why I could not hold her longer in my tummy... I think I will always have that guilty feeling.



Despite all my care, why is Emilia still on oxygen and still in the hospital? I thought she would thrive if I cared for her by her side as much as possible. I thought she would be the strongest, healthiest baby in the whole unit. Unitl I recently saw other babies who completely come off of respiratory assistance at 30-32 weeks, I thought all babies were like Emilia needing to be on CPAP and low flow for a long time. I even got steriod shots before she was born... which was supposed to help her with lung development and yet she has chronic lung disease. Her being on low flow even at post-term is probably the reason why virtually everyone is sure she will go home on oxygen. She should have come off a long long time ago like other babies.

There is this one baby who was born on the same day as Emilia and came off low flow and went to Level II Nursery a long time ago, despite the fact that her mom never came to see her, except 2-3 days during her entire stay in the NICU. No breastfeeding, no Kangaroo Care, no diaper change, no singing or talking... and that baby still was way ahead of Emilia. I started to doubt whehter all my care and love even made any difference. But then, of course, even if I knew my care and love would not make an inch of difference, I would still have done the same, wouldn't I?

As September approached, I was growing anxious because Emilia was not progressing as fast as I hoped. I tried not to but couldn't help comparing her to other babies.  When I read back, a certain amount of frustration and anxiety is present in the daily journal I keep for Emilia and also in the posts on this blog. I thought I was keeping the anxiety to myself but I must have been looking pretty depressed because a lot of people have been asking me if I am okay.  Have I projected my frustration to Emilia? Maybe I am sending the wrong energy to my baby. She probably senses my desperate feelings... my anxiety, and even anger sometimes.

It's now October. I thought she would either be home soon on oxygen -OR- be home late without oxygen. However it looks like she will be home late AND on home oxygen. I hate the idea of home oxygen so much that I came to despise all the doctors and nurses who told me Emilia needed home oxygen. I do finally accept the reality that she may need home oxygen and she will be safer that way. I still hate the idea of the oximeter monitor and oxygen tank being attached to her body even at home. Breastfeeding and bathing is not so easy with these tubes  and cords. Besides, what mom wants to see white tapes on her baby girl's face for months and months? Red sores from tapes and oxygen tube impression marks are now permanent features on her cheeks.  Those tapes are too harsh for baby skin.

I am trying not to worry about her spells. If she still has spells, it just means she is not mature enough and she is not ready to come home. I don't want to count how many spells she has a day.... in the end, it's really meaningless to keep track of her spells as worrying about them does not help anything at all. I just hate those people who treat her as a slow baby who still has spells for choking and reflux.

This is one thing I realized.
She will grow one day and when she is ready to come home, she is the one to tell me. I just need to wait by her side and watch over her until that day comes. It's not something I can rush her to do. I just hate having to explain to everyone why are still not at home. I just tell them Emilia thinks NICU is her home because Mommy's there all the time.

I whisper in her ears when nursing her:
"Emilia, drink lots of milk, grow strong, grow tall, grow big, grow smart, and don't worry too much about having to go home soon. Mommy will be here with you as long as you need to be here".

 

Emilia: The Oldest But the Cutest Baby in the whole NICU!



Changing bum (and a silent bomb)

Emilia making a lot of fuss while Mom is changing bum.
She's still so gassy - very skunky!!!! Definitely an old man fart!!

Emilia is now 4 months old (3 weeks corrected)

Really...? It's been 4 months already. One third of my mat leave gone...

Any way she weighs over 9 lbs now. To be precise she is 4.1kg.
Today the Parent Resource Nurse told me she should get some tummy time now along with other play/exercise time each day. We put her on her tummy and, to my excitement, she was able to maintain her head up and turn her head in both directions. Now she needs up to 20 minutes of exercise time everyday.

Monday we will assess her status and decide on her care plan. They were talking about sending her to Level II again which I do not like too much.

Emilia is 17 weeks old

Emilia is 17 weeks old actual and 19 days old of corrected age. She has grown really nicely. Head circumference 37cm, length 53cm, and weight 4035g. Yes, she has hit 4 Kg! She has finally caught up with the average size in head, length and weight. In fact, she is somewhere around 60th percentile, which is a big big improvement from 10th percentile.

Her blood test yesterday showed really good results, meaning we can keep giving her breastmilk only, without any human milk fortifier. Her billirubin level was good too.

Her ROP eye exam showed that her condition is stable and improving, which is a good news.

Today she had her 4 month immunization shots. Yep, already.

Update

She's back on low flow oxygen.... Yep, disappointing but what can I do... She will let us know when she's ready. We can't force her to breathe when she needs to have more oxygen than what's already in the air. Just a miniscule amount of oxygen, but she needs that "whiff".

Realistically she won't be coming home this month. In fact we will spend Thanksgiving in the NICU for sure. I will be happy if she comes home before Halloween.

She's almost 4kg (3.98Kg to be exact). She is more alert these days. She enjoys bath now. Does not cry and does not look too nervous any more during a bath. She doesn't like being weighed though. Must be because of being stripped naked, lifted and moved on to the hard surface of the scale.

Below is just Mommy's whining... if you don't want to see me whine and whine about the same thing, stop reading:
I didn't expect her hospitalization to be this long. It's really exhausting now. Who knew the end of this journey, not the beginning, would be the most difficult time? It feels like I will forever be on a hamster wheel, getting nowhere, running and running until I drop dead with exhaustion. I am trying my best to provide Emilia with all the normal, natural developmental care - bath, musical mobile, music box, visual stimulation, singing, cuddling, talking... but it's so hard to do all the normal things in the hospital. She's already 17 days old corrected. Soon she will be 1 month old. Am I giving her all the things she needs in order to become a normal 1 month old baby? This is what worries me now.


Picture:
Emilia falling asleep after eating. I tried to bundle her but I know, I am a lousy bundler. I can never bundle her in a nice secure way.

Video 2: Emilia half asleep

Emilia is undecided whether to wake up and go back to sleep.

Off low flow again

Today we put Emilia in room air again without any breathing support. It has been about 6 hours. I am praying that she can leave the low flow behind for good.

Video

I wanted to upload a video to this blog a long time ago but the file size was too big. Why haven't I thought of using YouTube until now?

Today's picture

When can we come home...?

It is yet another frustrating day. I really don't know when we will be coming home. I am tired of the long commute, staying at the hospital for 14 hours a day, eating out all my meals, and everything else I have been doing for the last 3 months. At the end of this month, we will have been in the NICU for 4 months. This is going to be way longer than I thought. I know a mom who finally got to take her twins home (with home oxygen) after more than 5 months in the hospital... 5 MONTHS! I am afraid we following suit.

Emilia had two bad spells just now, at the end of the day. She was just fine all day long but around 11pm, she had an awful one and then again just before the midnight. So, there is... a spell-free day ruined at the end of the day. We need to start a new streak of spell-free days... Are we ever going to have a spell-free 7 day streak?
To me it seems unachievable.

I try to not to worry too much about the spell episodes. At the end of the day, there is nothing I can do about it and there is no point in directing all my energy to something that I have no control of. If she does have a spell, then I may rescue her but I should not be mad at Emilia for doing it. I need to just patiently wait until she grows out of it.

constipation?

Emilia has not been able to poo on her own past several days.
We have inserted glycerin tips 4 times already so this time we decided to leave her wihout giving any stimulation but it's been more than 48 hours since the last poo. The last poo was not even hard or like pellets as I would expect from constipation.
I am worried there might be something wrong but all the docs and nurses say it's what babies do and she wil have her own pattern. She is so gassy too. Old man fart, actually. Loud and very very smelly. I could not have imagined this is how a baby girl would smell. Really stinky that I am embarrassed the nurses might think it was me who just polluted the air.

Emilia is 16 weeks old

Emilia was born 16 weeks ago from today. Her corrected age is 12 days. She is doing really well. Gaining healthy weight each day, breastfeeding, and still on low flow oxygen. We tried her off low flow a few days ago and put it back on her only after 30 minutes because she started to desat.

Feeding-wise, she's doing well, but she's not pooing for some reason. She eats so much but not pooing so I am concerned (where could it all go???) but the doctors and nurses all assure me this does happen and her tummy seems fine.

Her ROP eye exam result was still the same as the last exam. It's moderate and stable so it's a good news.

She now weighs 3.86Kg (8.5lb). Emilia truly has come a long way, from being less than 2 lb at birth. Her head circumference is 37cm and length 52cm. Overall, she's still not reached the average but she's growing at a nice rate. The way the NICU doctors and dietician would put it, "she is plotting well on the growth chart". She's got pudgy thighs, arms, hands, and feet. She is so chubby especially her cheeks.

The Chest Team from Sick Kids came to assess Emilia's oxygen requirements. They have reviewed all the history of her respiratory requirements and progress since her birth. They will review X-rays and other things and assess whether she should be sent home with O2 or not. I hope they decide to wean it before her discharge. I feel so frustrated that everybody tells me Emilia WILL go home with oxygen. I feel so alone, being the only person believing that she will do well without O2 by the time she goes home. I don't want her to be hooked up to an oxygen tank and a monitor until she's 3-6 months old because I really want her to develop as normally as possible. What mom would not want to be able to just pick up her baby and walk around the house, to the kitchen or the laundry room, or to answer the phone or the door bell... I hate the idea of my baby being attached to a tank and having to be confined in her crib or her room. I am really interested in what SickKids team will say about it.

Emilia is 1 week old in corrected age

Emilia is 1 week old corrected and 108 days old actual. She is either sleeping or eating all day long. So far not much of interaction with Mommy and Daddy except falling asleep on their chest and crying & screaming when hungry and when she wants to be cuddled. She keeps crying until being picked up and cuddled. As soon as we put her back in the crib, she goes on crying again.

She is becoming to look more and more like a girl. Until about a month ago, she looked like a boy, quite frankly. People still say she looks like her daddy but now I start to see a little bit of me in her face too, especially her lips.

She now weighs 3.6Kg... last few days her weight gain was a bit stalled but on average she's been gaining a healthy amount of weight each day. Her appetite is huge. Sometimes she needs to eat every hour. She's got nipple confusion, big time. She doesn't want to latch on and suck properly when breastfed. She already knows the bottle is much easier, but I have no choice. When she's hungry and I am not there at the hospital, the nurses need to bottle her. When she's crying and I am not there to console her, the nurses need to put a pacifier in her mouth. She's been sucking on soothers since she was 26-7 weeks gestation so I cannot suddenly take it away from her now.

I am going to sleep in the hospital tomorrow and the day after tomorrow to breastfeed her round the clock - just to make sure we are able to do it.