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.
Emilia was born on May 31, 2011, at 25 weeks and 5 days in gestational age. She came home on October 21, 2011 after spending 143 days in the hospital. Today she's a thriving, happy baby who continues to amaze us every single day. This blog records the journey of our miracle baby.
Friday, September 23, 2011
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?
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.
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.
Thursday, September 22, 2011
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.
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.
Wednesday, September 21, 2011
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.
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.
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