Today, I told Emilia's respiratory therapist, Rosa, about Emilia being re-intubated. Rosa told me not to despair. Given that Emilia was born very prematurely and she was only 28 weeks and 6 days (corrected age), she would probably be on and off the ventilator until at least she was 31 weeks (next 2 weeks).
Rosa said:
"If you look at the 2 weeks today, it seems like a really long time and it's hard to bear. But if you look at it as 2 weeks of Emilia's whole life, it is a very short period".
Somehow it consoled me. It helped me put my worries into perspectives and also look at Emilia's life outside the incubator and NICU, beyond this 100-day journey.
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.
Wednesday, June 22, 2011
NICU roller coaster
The life in a NICU is a roller coaster, I was told by virtually everyone I met in the last three weeks. The roller coaster may take a very sudden unexpected turn at times, and yesterday was one example.
Emilia was in a good condition until yesterday afternoon. During the morning round, all the doctors cheered that she was doing very well and they were happy. Suddenly in the late afternoon, she was desatting and the nurse had to turn up the oxygen level a bit. At night, around 1:30am, I called the NICU to check how she was doing. Something inside me was not quite settling and I wanted to speak to the nurse before I went to bed. She said Emilia had a lot of spells in the evening. She was not tolerating the milk well (meaning a lot of milk was remaining in her stomach and it had a greenish colour). She had lost 30g since the day before yesterday. They had just taken some chest and abdominal X-rays and were waiting for the results. She was likely going to be intubated again and her feedings had been on hold since 8 pm.
What a sharp downturn this was - all the bad things that could happen were happening, all at once. First, as any Korean would do, I blamed myself for all these bad things that happened. I had been too content, too happy with her progress and I was celebrating too early and it spoiled it all. I must have brought bad luck because I told everyone she was doing so well and we were going to have a smooth sail finally. It is bad luck to say such thing. You never celebrate for something you have not attained (yet) for sure.
Any mother would be distraught by hearing such news over the phone in the middle of the night and I was no exception. I cried in the bed, and cried some more when I first saw her in the morning. She had the breathing tube through her nose instead of the CPAP mask. During the round, the neonatologist told me she wanted to check if Emilia had any bacteria in her lungs. She too was surprised by the sudden change.
Emilia's feeding stopped altogether. TPN is back on, along with the antibiotics that she just came off two days ago. She will probably lose some more weight today and the next few days. Maybe back to 900s. Even 800s.
Yes, the life in NICU is really an emotional roller coaster. We celebrate and grieve little things each day. Important milestones achieved are overturned the next day. A week's progress is unexpectedly backtracked to point zero. When things look so gloomy, suddenly your little one just picks up and makes a big step forward, lifting all the saddness and uncertainty. This has been repeated for 22 days already and I still have at least 78 more days of this roller coaster.
Being the person I am, it is very difficult to be an upbeat, optimistic, "half-full glass" mother. However I will try to think positively and give strength to my little girl. I feel it's the only thing I can do for her now.
Emilia was in a good condition until yesterday afternoon. During the morning round, all the doctors cheered that she was doing very well and they were happy. Suddenly in the late afternoon, she was desatting and the nurse had to turn up the oxygen level a bit. At night, around 1:30am, I called the NICU to check how she was doing. Something inside me was not quite settling and I wanted to speak to the nurse before I went to bed. She said Emilia had a lot of spells in the evening. She was not tolerating the milk well (meaning a lot of milk was remaining in her stomach and it had a greenish colour). She had lost 30g since the day before yesterday. They had just taken some chest and abdominal X-rays and were waiting for the results. She was likely going to be intubated again and her feedings had been on hold since 8 pm.
What a sharp downturn this was - all the bad things that could happen were happening, all at once. First, as any Korean would do, I blamed myself for all these bad things that happened. I had been too content, too happy with her progress and I was celebrating too early and it spoiled it all. I must have brought bad luck because I told everyone she was doing so well and we were going to have a smooth sail finally. It is bad luck to say such thing. You never celebrate for something you have not attained (yet) for sure.
Any mother would be distraught by hearing such news over the phone in the middle of the night and I was no exception. I cried in the bed, and cried some more when I first saw her in the morning. She had the breathing tube through her nose instead of the CPAP mask. During the round, the neonatologist told me she wanted to check if Emilia had any bacteria in her lungs. She too was surprised by the sudden change.
Emilia's feeding stopped altogether. TPN is back on, along with the antibiotics that she just came off two days ago. She will probably lose some more weight today and the next few days. Maybe back to 900s. Even 800s.
Yes, the life in NICU is really an emotional roller coaster. We celebrate and grieve little things each day. Important milestones achieved are overturned the next day. A week's progress is unexpectedly backtracked to point zero. When things look so gloomy, suddenly your little one just picks up and makes a big step forward, lifting all the saddness and uncertainty. This has been repeated for 22 days already and I still have at least 78 more days of this roller coaster.
Being the person I am, it is very difficult to be an upbeat, optimistic, "half-full glass" mother. However I will try to think positively and give strength to my little girl. I feel it's the only thing I can do for her now.
Monday, June 20, 2011
Emilia on full feed now
Emilia is now on full feeds - meaning she does not need to get nutients via IV any more. They call this fluid TPN. They will withdraw the TPN and keep her on breast milk only (via the feeding tube aka "OG tube"). She is fed 14cc of milk, every two hours. She has a bit of milk remaining in her stomach before the next feed, but so far the left over amount is not very concerning (about 2cc) and it seems that she's tolerating milk quite well.
She won't be breastfed until she turns 34 weeks (in gestational age) at which point she will learn how to coordinate sucking and swallowing. However this also depends on the baby's condition, as I heard some NICU moms talking about their babies not yet being able to be breastfed becuase of the ventilator. I hope Emilia will graduate from all respirators well before then... but I know I am being very hopeful.
She won't be breastfed until she turns 34 weeks (in gestational age) at which point she will learn how to coordinate sucking and swallowing. However this also depends on the baby's condition, as I heard some NICU moms talking about their babies not yet being able to be breastfed becuase of the ventilator. I hope Emilia will graduate from all respirators well before then... but I know I am being very hopeful.
Tiny Tiny Baby
Picture taken on June 12, 2011.
She's a tiny baby but gives us the biggest joy in life.
Emilia is on CPAP again
Emilia is (back) on CPAP. They "extubated" her in the evening and she's no longer on the ventilator. However I don't think her X-ray results were too impressive. I have a feeling the only reason they took the tube out was because she had been ventilated for 12 days already. The nurse told me that they try not to go more than 10 days and definitely not more than 14 days. Whatever the reason was, she is no longer tied to that stiff tube that goes into her nostril and I am happy for her. Now all she has to do is do well on CPAP so that she does not need to be intubated again. Emilia, let's surprise all the doctors and nurses! Keep on breathing!
Sunday, June 19, 2011
Emilia's now 1070g!
Emilia first hit one kilogram 3 days ago at 1010g. The next day she was 1050g and today she weighs 1070g. I am very proud of her. She has grown up a lot since her birth. Her head is bigger and her belly and legs are more plump. I hope she keeps it up.... Please don't drop to below 1000g...!
Oxygen Saturation
She's already 18 days old (28 weeks and 2 days gestation in corrected age).
Starting yesterday she showed low oxygen saturation level (they call this "desat").
Usually they want to keep the O2 saturation level between 85% and 95%. For some reason or for no reason, Emilia would desaturate to somewhere around 50% from time to time. When this happens her limbs even turn blue - it's very scary.
She was doing very well at 25%-28% O2 concentration. Then the next day, her O2 concentration had to be boosted all the way up to 52% because her oxygen saturation level would sometimes drop to below 50%. Today she was back down to 30-35% concentration and was doing very well for hours, and then suddenly the saturation level started to plummet... and more O2 had to be blown into her lungs. She swings so much that her saturation level varies from 100% to 52% in a minute. I really don't know why there is such a large swing. She's not consistently desaturated. It just happens once in a while and when it happens, she can't quite recover from it.
Blowing in high concentration of oxygen in a preemie's lungs is not a good thing because it causes damage to the lungs. However because when the baby desats, we do need to boost up the O2 concentration in the air she breathes in. You see, it's a dilemma - I don't want the nurse to turn up the oxygen concentration to 50% just because she's showing a bit of desat. Turning up oxygen too high could damage her eyes and lungs so I want the nurse to give her a chance to push herself to higher saturation. But at the same time, it is also nerve wrecking to see the O2 saturation number drop and hear the monitor continuously beep on your baby. I wonder if this means she will have to be changed from HFO to the other ventilation mode. Yes, as all the NICU people say, one step foward and two steps backward...
Starting yesterday she showed low oxygen saturation level (they call this "desat").
Usually they want to keep the O2 saturation level between 85% and 95%. For some reason or for no reason, Emilia would desaturate to somewhere around 50% from time to time. When this happens her limbs even turn blue - it's very scary.
She was doing very well at 25%-28% O2 concentration. Then the next day, her O2 concentration had to be boosted all the way up to 52% because her oxygen saturation level would sometimes drop to below 50%. Today she was back down to 30-35% concentration and was doing very well for hours, and then suddenly the saturation level started to plummet... and more O2 had to be blown into her lungs. She swings so much that her saturation level varies from 100% to 52% in a minute. I really don't know why there is such a large swing. She's not consistently desaturated. It just happens once in a while and when it happens, she can't quite recover from it.
Blowing in high concentration of oxygen in a preemie's lungs is not a good thing because it causes damage to the lungs. However because when the baby desats, we do need to boost up the O2 concentration in the air she breathes in. You see, it's a dilemma - I don't want the nurse to turn up the oxygen concentration to 50% just because she's showing a bit of desat. Turning up oxygen too high could damage her eyes and lungs so I want the nurse to give her a chance to push herself to higher saturation. But at the same time, it is also nerve wrecking to see the O2 saturation number drop and hear the monitor continuously beep on your baby. I wonder if this means she will have to be changed from HFO to the other ventilation mode. Yes, as all the NICU people say, one step foward and two steps backward...
Subscribe to:
Posts (Atom)