After more than a month in NICU, you start to recognize all the bad signs when a baby is not going to live.
You see doctors and nurses rushing.
You see parents crying at bedside all day and all night.
You see them in the same clothes as yesterday, and the day before.
You see the social worker visiting them.
Next you see the chaplain.
You see the baby being carried out quietly to another room.
Probably where the baby will spend the final few hours in the arms of the parents.
You see an empty bed space.
You see the baby's name tag taken away.
Even with today's advanced medicine, there are babies who will never get to go home with their parents. Babies who arrive too early and have to be intubated and poked from the beginning to the end of their short lives. Babies who will never know the warm loving touch of their mom and dad. Even in one of the best hospitals in the country, we still fail them.
My heart aches...
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.
Saturday, July 16, 2011
Thursday, July 14, 2011
Some more pictures
Maybe because she's my baby, but Emilia is sooooo cute.
She loves pointing with one finger and she loves touching her face (as a lot of babies do in the womb).
She loves pointing with one finger and she loves touching her face (as a lot of babies do in the womb).
NICU Diary:1
I find that the more time I spend with my baby in NICU, I find it harder to step out or come back home. I feel anxious when I am not there physically with her, even though I know she's probably okay and I can call the nurse and get updated. Even after spending 12 hours, it is so hard to walk out of that place leaving your baby behind.
Sometimes what is worrying me are things like what if the nurse is not there when Emilia starts to desat or have a spell, and what if the nurse does not know that Emilia cannot last very long without CPAP (because we need to take off the CPAP mask briefly when we weigh her or bathe her).
One of the staff neonatologists was joking to me "you really can't tear yourself away from here", and I find it so true. It is very hard. Today I left the hospital early (6:30pm) and as soon as I finished the supper, I felt like I needed to head back to the hospital. I hope she gets transferred to a hospital closer to home so that I can visit her without spending 2 hours on the road for the round trip.
Sometimes what is worrying me are things like what if the nurse is not there when Emilia starts to desat or have a spell, and what if the nurse does not know that Emilia cannot last very long without CPAP (because we need to take off the CPAP mask briefly when we weigh her or bathe her).
One of the staff neonatologists was joking to me "you really can't tear yourself away from here", and I find it so true. It is very hard. Today I left the hospital early (6:30pm) and as soon as I finished the supper, I felt like I needed to head back to the hospital. I hope she gets transferred to a hospital closer to home so that I can visit her without spending 2 hours on the road for the round trip.
Emilia is 6 weeks old (and 32 weeks gestation)
Today Emilia is 6 weeks + 2 days old and 32 weeks in gestational age.
I cannot believe she is already 32 weeks. I thought we would forever be 20-something weeks.
She has grown a lot this past week. Her face is chubby now. She put on some chubs around her hands, arms, legs, and bum. She looks a lot like a full term baby but in a small scale. She sleeps a lot and poohs a lot. When she opens her eyes, she focuses attention to those black-and-white pictures I put up on the walls of her incubator. Her oral motor skills are a lot more developed than two weeks ago. She sucks on her soother vigorously, taking a break every 5 seconds. When milk goes into her feeding tube, I put a little bit of breastmilk on the soother so that she can start to associate sucking with feeling full in her stomach. I also wanted to introduce the milk to her taste buds so that she wouldn't find it strange when we start to actually breastfeed. She seems to like the milk taste. She now gets 20 ml of milk every 2 hours.
Picture from July 14: Too bad we can't really see her face because of the CPAP mask and hat
I cannot believe she is already 32 weeks. I thought we would forever be 20-something weeks.
She has grown a lot this past week. Her face is chubby now. She put on some chubs around her hands, arms, legs, and bum. She looks a lot like a full term baby but in a small scale. She sleeps a lot and poohs a lot. When she opens her eyes, she focuses attention to those black-and-white pictures I put up on the walls of her incubator. Her oral motor skills are a lot more developed than two weeks ago. She sucks on her soother vigorously, taking a break every 5 seconds. When milk goes into her feeding tube, I put a little bit of breastmilk on the soother so that she can start to associate sucking with feeling full in her stomach. I also wanted to introduce the milk to her taste buds so that she wouldn't find it strange when we start to actually breastfeed. She seems to like the milk taste. She now gets 20 ml of milk every 2 hours.
Picture from July 14: Too bad we can't really see her face because of the CPAP mask and hat
Monday, July 11, 2011
Emilia's eye exam
Emilia had a Zone 2, Stage 0 result from her eye exam this morning. This is a very good result... meaning the blood vessels are growing normally in her eyes. However we still need to wait and see if the blood vessels will continue to grow normally into Zone 3 also. Her follow up exam is in 2 weeks. Hopefully her vision won't be impacted. I am just glad that she tolerated the exam well and has not developed ROP at this point.
Sunday, July 10, 2011
Why is Stevie Wonder blind?
Why is Stevie Wonder blind? He was a preemie too, though only by 6 weeks, not 15 weeks like Emilia. Nonetheless, he had a condition called Retinopathy of Prematurity (ROP). ROP is caused by abnormal growth of blood vessels on the retina of the eye, which in severe cases causes the retina to detach. Also, in the 1940's and 50's, a lot of preemies became blind because of high concentration of oxygen being blown into their lungs. At that time, they thought oxygen was good for preemies with breathing difficulities... little did they know that excess oxygen could cause ROP.
Tomorrow, Emilia will get her first - yes, the first of a series of - eye exams. The eye exam is to check whether she has developed ROP and how sever it is. Normally this is checked after 32 weeks of gestational age or 4-6 weeks after birth, so tomorrow is about the time she should get her eye exam. I already read about ROP a while ago and knew an eye exam was coming soon, but I cannot help worrying about it already, knowing that Emilia has been swinging a lot in her oxygen saturation level.
Tomorrow, Emilia will get her first - yes, the first of a series of - eye exams. The eye exam is to check whether she has developed ROP and how sever it is. Normally this is checked after 32 weeks of gestational age or 4-6 weeks after birth, so tomorrow is about the time she should get her eye exam. I already read about ROP a while ago and knew an eye exam was coming soon, but I cannot help worrying about it already, knowing that Emilia has been swinging a lot in her oxygen saturation level.
Subscribe to:
Posts (Atom)