| We are finally getting up to date on the blog front. Nothing note worthy happened mid/late January... Nico's oxygen requirements yo-yo'd slowly up and down but nothing too drastic. He seemed to plateau. The only thing we do know about Nico's personality is that he will not be rushed, so we sat patiently and kept getting our reassurances from that doctors that all was fine. On Jan 19 he received a certificate and a cot quilt to mark his 100th day in the NICU. The nurse/ admin clerk showing me all the hand made quilts, telling me about the group that makes them said "and at 200 days, you get a full blanket". I didn't mean to but I must have given her a death stare because her face fell and she quickly said "Not that you'll be here then, I am sure..." I DON"T WANT A BLANKET! I CAN BUY A BLANKET! In saying that, it is a really cute quilt he got. I was very aware of how many more types of breathing support methods he would have to go through and the fact that he was officially still on conventional ventilation, albeit through prongs, was wearing me down. A few days after the 200-day-blanket conversation with the admin clerk/ nurse, I asked one of Nico's regular nurses whether she thought we would be here long enough to get a blanket. She looked at me in a serious but sweet way and said "Mmmm, maybe. But not in this Bay at least" Pfff. Whoever said honesty was the best policy may have needed to test the theory in multiple situations. Spirits were low. I knew she had to prepare me and not give any false hopes or expectations, but that knowledge wasn't enough to get rid of the feeling that I had just swallowed rocks. The heavy stomach lingered for days. About a week ago, I went in and found a CHANGE had been made!! His breathing rate had been reduced from being given 50 automatic breaths to 30, meaning he is given more opportunity to take his own breaths over the top of the ventilation. The next day the pressures decreased, not to a low pressure but still a step in the right direction. My early morning check in on Saturday 30 January nearly had me bouncing of the walls. "We actually changed him to CPAP at 4am and his oxygen requirement hasn't really increased, he's good" I did some silent dancing around the house, Saturdays are my husband's turn to sleep in. CPAP basically holds the lungs open a little, to make taking breaths less tiring for baby. If his lungs were to deflate fully, like ours can, it would be hard for him to get them back up. It was explained to to us like how blowing up a new balloon is harder than one with a small breath in it already. This way, the hard work is already done. This was not the only big step the day held for the wee man. When I arrived to see him, the nurse was holding up a syringe of milk for him... I think I neglected to mention this part of Nico's battle previously. He has/ had chronic reflux so to minimise this, the doctors replaced the tube to his stomach with one that the weaved through his stomach, basically straight to the intestines I suppose. They then used a drip to give him a continuous feed. The sight of the nurse holding a syringe meant one thing: no more drip feeding! No drip feeding meant no bypassing the stomach. Nico was back to "regular" feeds of 16 mls on the hour, every hour. He seems to have taken very well to his new ventilation and feeding program as he has been much more settled and sleeping a lot better. One theory is that he enjoys feeling full. I also think it must be more comfortable to take your own breath than have it forced into you with all that pressure. Whatever his reason, I am just stoked that nearly 48 hours, he is coping still just fine! |
From Little Things... Big Things Grow
Sunday, January 31, 2010
Finally Due!
Finally Due!
| We are finally getting up to date on the blog front. Nothing note worthy happened mid/late January... Nico's oxygen requirements yo-yo'd slowly up and down but nothing too drastic. He seemed to plateau. The only thing we do know about Nico's personality is that he will not be rushed, so we sat patiently and kept getting our reassurances from that doctors that all was fine. On Jan 19 he received a certificate and a cot quilt to mark his 100th day in the NICU. The nurse/ admin clerk showing me all the hand made quilts, telling me about the group that makes them said "and at 200 days, you get a full blanket". I didn't mean to but I must have given her a death stare because her face fell and she quickly said "Not that you'll be here then, I am sure..." I DON"T WANT A BLANKET! I CAN BUY A BLANKET! In saying that, it is a really cute quilt he got. I was very aware of how many more types of breathing support methods he would have to go through and the fact that he was officially still on conventional ventilation, albeit through prongs, was wearing me down. A few days after the 200-day-blanket conversation with the admin clerk/ nurse, I asked one of Nico's regular nurses whether she thought we would be here long enough to get a blanket. She looked at me in a serious but sweet way and said "Mmmm, maybe. But not in this Bay at least" Pfff. Whoever said honesty was the best policy may have needed to test the theory in multiple situations. Spirits were low. I knew she had to prepare me and not give any false hopes or expectations, but that knowledge wasn't enough to get rid of the feeling that I had just swallowed rocks. The heavy stomach lingered for days. About a week ago, I went in and found a CHANGE had been made!! His breathing rate had been reduced from being given 50 automatic breaths to 30, meaning he is given more opportunity to take his own breaths over the top of the ventilation. The next day the pressures decreased, not to a low pressure but still a step in the right direction. My early morning check in on Saturday 30 January nearly had me bouncing of the walls. "We actually changed him to CPAP at 4am and his oxygen requirement hasn't really increased, he's good" I did some silent dancing around the house, Saturdays are my husband's turn to sleep in. CPAP basically holds the lungs open a little, to make taking breaths less tiring for baby. If his lungs were to deflate fully, like ours can, it would be hard for him to get them back up. It was explained to to us like how blowing up a new balloon is harder than one with a small breath in it already. This way, the hard work is already done. This was not the only big step the day held for the wee man. When I arrived to see him, the nurse was holding up a syringe of milk for him... I think I neglected to mention this part of Nico's battle previously. He has/ had chronic reflux so to minimise this, the doctors replaced the tube to his stomach with one that the weaved through his stomach, basically straight to the intestines I suppose. They then used a drip to give him a continuous feed. The sight of the nurse holding a syringe meant one thing: no more drip feeding! No drip feeding meant no bypassing the stomach. Nico was back to "regular" feeds of 16 mls on the hour, every hour. He seems to have taken very well to his new ventilation and feeding program as he has been much more settled and sleeping a lot better. One theory is that he enjoys feeling full. I also think it must be more comfortable to take your own breath than have it forced into you with all that pressure. Whatever his reason, I am just stoked that nearly 48 hours, he is coping still just fine! |
Monday, January 25, 2010
Mini Milestones
Beginning of January, apart from Nico's "episodes", also brought with it some fabulous, tangible progress, or at least token signs interpreted as progress.
Until 4 months ago, I never would have thought dressing my baby would have been called a milestone. Surely it is a given: have baby, dress baby. Obviously not. I walked into the Bay and saw an open cot squeezed in between Nico and his neighbour ... I thought "Hmm.. obvioulsy tight for space!" which had I thought about it, would have realised was a ridiculous assumption. A NICU is not somewhere you can just squeeze in extra beds. Each station has so much built in equipment, if it was to be full, new babies have to get moved to another hospital. The open cot was for Nico!
I was so excited. Not only would this make touching him and seeing him so much easier, I also knew it meant CLOTHES!! He was in hospital clothes the first day since no one had told me he was moving, but the next day I couldn't wait to fill his litte drawers with his tiny clothes. I couldn't believe he almost fitted shop bought clothes! 00000 were almost the right length although they swam around his middle.
About 4 or 5 days later, I was in for my second surprise "Are we going to bath him today with his weigh?" the nurse asked me. I grinned and told her he had not had a bath before... I thnk she was almost going to say "Well we won't do one, maybe there is a reason" but the ecstatic look on my face must have persuaded her otherwise. I was too scared to actually hold him in the bath so two nurses did that part, and I washed him. Again, who knew this would be a milestone? He did so well...he didn't have any big desat's, he didn't require any higher oxygen and when we put him back in bed, apart from a bit of a grump as I dried him off... he was a happy lil man.
The next bath, 2 days later, I held him and washed him while the nurse held his prings in... and the 3rd bath, I did all on my own. Finally I felt like a parent! Saying that sounds like I hadn't yet bonded with Nico, but that would be far fromthe truth, I had bonded, but felt entirely useless and like a bystander in my baby's life. I'd gotten to change nappies and check temperatures regularly and give him cuddles of course, but nothing had felt quite as "he's really my baby and he WILL come home with us!" as that moment.
- He reached 1.5kg
- He got to wear clothes
- He moved to cot
- He had his first bath
Until 4 months ago, I never would have thought dressing my baby would have been called a milestone. Surely it is a given: have baby, dress baby. Obviously not. I walked into the Bay and saw an open cot squeezed in between Nico and his neighbour ... I thought "Hmm.. obvioulsy tight for space!" which had I thought about it, would have realised was a ridiculous assumption. A NICU is not somewhere you can just squeeze in extra beds. Each station has so much built in equipment, if it was to be full, new babies have to get moved to another hospital. The open cot was for Nico!
I was so excited. Not only would this make touching him and seeing him so much easier, I also knew it meant CLOTHES!! He was in hospital clothes the first day since no one had told me he was moving, but the next day I couldn't wait to fill his litte drawers with his tiny clothes. I couldn't believe he almost fitted shop bought clothes! 00000 were almost the right length although they swam around his middle.
About 4 or 5 days later, I was in for my second surprise "Are we going to bath him today with his weigh?" the nurse asked me. I grinned and told her he had not had a bath before... I thnk she was almost going to say "Well we won't do one, maybe there is a reason" but the ecstatic look on my face must have persuaded her otherwise. I was too scared to actually hold him in the bath so two nurses did that part, and I washed him. Again, who knew this would be a milestone? He did so well...he didn't have any big desat's, he didn't require any higher oxygen and when we put him back in bed, apart from a bit of a grump as I dried him off... he was a happy lil man.
The next bath, 2 days later, I held him and washed him while the nurse held his prings in... and the 3rd bath, I did all on my own. Finally I felt like a parent! Saying that sounds like I hadn't yet bonded with Nico, but that would be far fromthe truth, I had bonded, but felt entirely useless and like a bystander in my baby's life. I'd gotten to change nappies and check temperatures regularly and give him cuddles of course, but nothing had felt quite as "he's really my baby and he WILL come home with us!" as that moment.
Mini Milestones
Beginning of January, apart from Nico's "episodes", also brought with it some fabulous, tangible progress, or at least token signs interpreted as progress.
Until 4 months ago, I never would have thought dressing my baby would have been called a milestone. Surely it is a given: have baby, dress baby. Obviously not. I walked into the Bay and saw an open cot squeezed in between Nico and his neighbour ... I thought "Hmm.. obvioulsy tight for space!" which had I thought about it, would have realised was a ridiculous assumption. A NICU is not somewhere you can just squeeze in extra beds. Each station has so much built in equipment, if it was to be full, new babies have to get moved to another hospital. The open cot was for Nico!
I was so excited. Not only would this make touching him and seeing him so much easier, I also knew it meant CLOTHES!! He was in hospital clothes the first day since no one had told me he was moving, but the next day I couldn't wait to fill his litte drawers with his tiny clothes. I couldn't believe he almost fitted shop bought clothes! 00000 were almost the right length although they swam around his middle.
About 4 or 5 days later, I was in for my second surprise "Are we going to bath him today with his weigh?" the nurse asked me. I grinned and told her he had not had a bath before... I thnk she was almost going to say "Well we won't do one, maybe there is a reason" but the ecstatic look on my face must have persuaded her otherwise. I was too scared to actually hold him in the bath so two nurses did that part, and I washed him. Again, who knew this would be a milestone? He did so well...he didn't have any big desat's, he didn't require any higher oxygen and when we put him back in bed, apart from a bit of a grump as I dried him off... he was a happy lil man.
The next bath, 2 days later, I held him and washed him while the nurse held his prings in... and the 3rd bath, I did all on my own. Finally I felt like a parent! Saying that sounds like I hadn't yet bonded with Nico, but that would be far fromthe truth, I had bonded, but felt entirely useless and like a bystander in my baby's life. I'd gotten to change nappies and check temperatures regularly and give him cuddles of course, but nothing had felt quite as "he's really my baby and he WILL come home with us!" as that moment.
- He reached 1.5kg
- He got to wear clothes
- He moved to cot
- He had his first bath
Until 4 months ago, I never would have thought dressing my baby would have been called a milestone. Surely it is a given: have baby, dress baby. Obviously not. I walked into the Bay and saw an open cot squeezed in between Nico and his neighbour ... I thought "Hmm.. obvioulsy tight for space!" which had I thought about it, would have realised was a ridiculous assumption. A NICU is not somewhere you can just squeeze in extra beds. Each station has so much built in equipment, if it was to be full, new babies have to get moved to another hospital. The open cot was for Nico!
I was so excited. Not only would this make touching him and seeing him so much easier, I also knew it meant CLOTHES!! He was in hospital clothes the first day since no one had told me he was moving, but the next day I couldn't wait to fill his litte drawers with his tiny clothes. I couldn't believe he almost fitted shop bought clothes! 00000 were almost the right length although they swam around his middle.
About 4 or 5 days later, I was in for my second surprise "Are we going to bath him today with his weigh?" the nurse asked me. I grinned and told her he had not had a bath before... I thnk she was almost going to say "Well we won't do one, maybe there is a reason" but the ecstatic look on my face must have persuaded her otherwise. I was too scared to actually hold him in the bath so two nurses did that part, and I washed him. Again, who knew this would be a milestone? He did so well...he didn't have any big desat's, he didn't require any higher oxygen and when we put him back in bed, apart from a bit of a grump as I dried him off... he was a happy lil man.
The next bath, 2 days later, I held him and washed him while the nurse held his prings in... and the 3rd bath, I did all on my own. Finally I felt like a parent! Saying that sounds like I hadn't yet bonded with Nico, but that would be far fromthe truth, I had bonded, but felt entirely useless and like a bystander in my baby's life. I'd gotten to change nappies and check temperatures regularly and give him cuddles of course, but nothing had felt quite as "he's really my baby and he WILL come home with us!" as that moment.
Saturday, January 23, 2010
I don't like Thursdays
The steroids got weaned down over the course of 7 days, His oxygen requirement had come down well... it wasn't at the perfect 21% but it came down to low 30's, his lowest since the honeymoon first week he was born. One fact about oxygen I forgot in a previous blog is this "Parent's mood and attitude to the world directly correlates to their neonate's oxygen requirements" Low 30's therefore made us see beauty in the weeds growing along the freeway.
I also neglected to mention that Christmas fell during this time. If I were a psychologist, I would think the fact that I neglected to mention it may also be a reflection of my guilt. Our 21 month old got a few presents and a big girl bed etc etc but she didn't get a Christmas. She got breakfast with our new neighbours, a trip to see her brother and some ham for dinner, but she didn't get a Christmas. Ok, she is not even two, she will not be scarred for life, I know this. If I was in a less woe-is-me frame of mind I would even realise that it was never going to be a big traditional Christmas as I was meant to be 7 months pregnant so we were not going to visit our family in NZ, it was always going to be just the 3 of us.
I also neglected to mention that Christmas fell during this time. If I were a psychologist, I would think the fact that I neglected to mention it may also be a reflection of my guilt. Our 21 month old got a few presents and a big girl bed etc etc but she didn't get a Christmas. She got breakfast with our new neighbours, a trip to see her brother and some ham for dinner, but she didn't get a Christmas. Ok, she is not even two, she will not be scarred for life, I know this. If I was in a less woe-is-me frame of mind I would even realise that it was never going to be a big traditional Christmas as I was meant to be 7 months pregnant so we were not going to visit our family in NZ, it was always going to be just the 3 of us.
Anyway... boxing day, at 11 weeks old, my husband had his first cuddle and things were looking pretty good. Pop quiz : What happens when roller coasters go up?
New Years Eve. Thursday. We are having a barbecue at our place with 4 couples and their toddlers. I called the hospital for my update and although Nico was fine, the nurse told me that 2 hours ago they had had to resuscitate him! I asked if I should come in but she said that there was really nothing to worry about, he was doing fine until it happened and he was doing fine again now so it must have just been something in his airway. I hung up not feeling fantastic but I also knew I needed a night with good company so I tried on my happy face mask and made it fit. I called the hospital every 1 or 2 hours and got the same report, he was settled and well. To state the obvious, it played on my mind all night and even when we went to the hospital at 10am the next day I couldn't shake it. All i was thinking was "Did he actually die?" I couldn't talk to my husband about that kind of thing, he would tell me to stop being melodramatic and secretly go into a darker place than he (we) already was. It took about 3 days til I just had to tell someone what I was thinking. I chose carefully as the 'wrong' answer (ie the one I was not fishing for) could have made me feel worse, but also not someone who would just go "Of course not honey" just to appease me. I asked a wonderful person via Facebook chat, she had been here on NYE so knew what I was talking about. She took a moment to think, talked to her husband about it and came back with the perfect answer
Q If you get resuscitated, does that mean you died? A: No. It just means you could have if they hadn't intervened.
When we did go in the next day, it was the same nurse looking after him who had been there when it happened. She said it was actually quite amazing because usually they are slow to pick up after something like that but her words were "Once he came back, he opened his eyes and looked at us as if saying 'Umm... excuse me. What are you doing? Back off' and was back to his normal self"
I approached the doctors to ask if I should be concerned and they explained it was 'purely mechanical' and there was no problem with him, he must have just had some secretions blocking an airway.
The fact that that happened then, in hind sight, was the best thing that could have happened. If it didn't happen, there would have been chaos the following Thursday. The whole hospital would have heard a call over the PA "Adult Code Blue, NICU Bay 8. Adult Code Blue, NICU Bay 8" as I had went into cardiac arrest.
After arriving at the hospital at 6am (as I usually do on Tuesdays and Thursdays to have a full day with our almost 2 y/o) I was elated. His oxygen was great, he was really settled and looked fabulous. While his nurse was doing handover at her other crib, I watched his SpO2 (blood oxygen saturation) drop and drop and not climb up like it should. When it got to 50% I motioned quietly for one of the nurses waiting her turn to come over and check him. She looked, said he was ok and we both watched. Next thing his heart rate plummets from his usual 170 to 40 and still dropping. Docs are called and come running. Around a crib that can hardly fit 3 people around it, there are 2 doctors and 4 nurses. Needless to say, I was not in the huddle. I was pacing around reminding myself of last Thursday and how it had been perfectly fine, so fine they hadn't even bothered to call me to tell me it happened, just waited til I rung.
5 -10 minutes later, I was beside him again, he had slightly high oxygen requirements but was settled and behaving normally. When I called that afternoon, his oxygen was even better than it had been pre-episode. The nurse and I concluded that the doctors hypothesis was incorrect, there was no blocked airway, Nico simply did not like Thursdays.
I don't like Thursdays
The steroids got weaned down over the course of 7 days, His oxygen requirement had come down well... it wasn't at the perfect 21% but it came down to low 30's, his lowest since the honeymoon first week he was born. One fact about oxygen I forgot in a previous blog is this "Parent's mood and attitude to the world directly correlates to their neonate's oxygen requirements" Low 30's therefore made us see beauty in the weeds growing along the freeway.
I also neglected to mention that Christmas fell during this time. If I were a psychologist, I would think the fact that I neglected to mention it may also be a reflection of my guilt. Our 21 month old got a few presents and a big girl bed etc etc but she didn't get a Christmas. She got breakfast with our new neighbours, a trip to see her brother and some ham for dinner, but she didn't get a Christmas. Ok, she is not even two, she will not be scarred for life, I know this. If I was in a less woe-is-me frame of mind I would even realise that it was never going to be a big traditional Christmas as I was meant to be 7 months pregnant so we were not going to visit our family in NZ, it was always going to be just the 3 of us.
I also neglected to mention that Christmas fell during this time. If I were a psychologist, I would think the fact that I neglected to mention it may also be a reflection of my guilt. Our 21 month old got a few presents and a big girl bed etc etc but she didn't get a Christmas. She got breakfast with our new neighbours, a trip to see her brother and some ham for dinner, but she didn't get a Christmas. Ok, she is not even two, she will not be scarred for life, I know this. If I was in a less woe-is-me frame of mind I would even realise that it was never going to be a big traditional Christmas as I was meant to be 7 months pregnant so we were not going to visit our family in NZ, it was always going to be just the 3 of us.
Anyway... boxing day, at 11 weeks old, my husband had his first cuddle and things were looking pretty good. Pop quiz : What happens when roller coasters go up?
New Years Eve. Thursday. We are having a barbecue at our place with 4 couples and their toddlers. I called the hospital for my update and although Nico was fine, the nurse told me that 2 hours ago they had had to resuscitate him! I asked if I should come in but she said that there was really nothing to worry about, he was doing fine until it happened and he was doing fine again now so it must have just been something in his airway. I hung up not feeling fantastic but I also knew I needed a night with good company so I tried on my happy face mask and made it fit. I called the hospital every 1 or 2 hours and got the same report, he was settled and well. To state the obvious, it played on my mind all night and even when we went to the hospital at 10am the next day I couldn't shake it. All i was thinking was "Did he actually die?" I couldn't talk to my husband about that kind of thing, he would tell me to stop being melodramatic and secretly go into a darker place than he (we) already was. It took about 3 days til I just had to tell someone what I was thinking. I chose carefully as the 'wrong' answer (ie the one I was not fishing for) could have made me feel worse, but also not someone who would just go "Of course not honey" just to appease me. I asked a wonderful person via Facebook chat, she had been here on NYE so knew what I was talking about. She took a moment to think, talked to her husband about it and came back with the perfect answer
Q If you get resuscitated, does that mean you died? A: No. It just means you could have if they hadn't intervened.
When we did go in the next day, it was the same nurse looking after him who had been there when it happened. She said it was actually quite amazing because usually they are slow to pick up after something like that but her words were "Once he came back, he opened his eyes and looked at us as if saying 'Umm... excuse me. What are you doing? Back off' and was back to his normal self"
I approached the doctors to ask if I should be concerned and they explained it was 'purely mechanical' and there was no problem with him, he must have just had some secretions blocking an airway.
The fact that that happened then, in hind sight, was the best thing that could have happened. If it didn't happen, there would have been chaos the following Thursday. The whole hospital would have heard a call over the PA "Adult Code Blue, NICU Bay 8. Adult Code Blue, NICU Bay 8" as I had went into cardiac arrest.
After arriving at the hospital at 6am (as I usually do on Tuesdays and Thursdays to have a full day with our almost 2 y/o) I was elated. His oxygen was great, he was really settled and looked fabulous. While his nurse was doing handover at her other crib, I watched his SpO2 (blood oxygen saturation) drop and drop and not climb up like it should. When it got to 50% I motioned quietly for one of the nurses waiting her turn to come over and check him. She looked, said he was ok and we both watched. Next thing his heart rate plummets from his usual 170 to 40 and still dropping. Docs are called and come running. Around a crib that can hardly fit 3 people around it, there are 2 doctors and 4 nurses. Needless to say, I was not in the huddle. I was pacing around reminding myself of last Thursday and how it had been perfectly fine, so fine they hadn't even bothered to call me to tell me it happened, just waited til I rung.
5 -10 minutes later, I was beside him again, he had slightly high oxygen requirements but was settled and behaving normally. When I called that afternoon, his oxygen was even better than it had been pre-episode. The nurse and I concluded that the doctors hypothesis was incorrect, there was no blocked airway, Nico simply did not like Thursdays.
Can we go just go home ... I am so over it!!
So the steriods were given... little Nico and his failing lungs needed to grab on to this opportunity and grab it quickly as there was no Plan B. I was calling every few hours and the oxygen requirements were coming down but oh-so-very-slowly. From all accounts, it was possible that he could show marked progress after 24 hours, by 12 hours he was better than ever and still improving.
I was on the top of the world and decided that I would be starting the nursery. Obviously this had not been something we were in a hurry to do before his early arrival and not something we wanted to do the first few weeks in case it served as a permanent reminder should all not go so well. The rollercoaster was on rapid climb... unfortunately there are rules known by all roller coaster fanatics. There is only one reason for a climb and that is to plummet somewhere twice as fast.
A side effect of steriods, and one we were well aware of, is that it lowers the immune system. Giving Nico steriods when he wasn't even finished antibiotics was not optimum. The next phone call we got was to advise me Nico had a cold and " we have put him in a box." It was pretty obvious that this was not a literal term but it still didn't paint pretty pictures in my mind. A "box" is simply a tape square on the floor around his isolette where nurses and visitors must wear mask and gloves when opening his little portholes. It was more for the other babies in his Bay than for him. The steroids were stopped after 2 days of a 5 day course. A cold was not a big deal but it would be unwise to continue. Another slow 3 weeks ensued and he remained in the box. No cuddles. Barely any skin to skin touch. They did allow me to not wear gloves after a few days but it was limited.
So many times I fantasised on walking in, putting him in a car seat capsule hidden perfectly in an oversized bag and walking out. I was done. I could look after him at home, I had watched them long enough. SpO2 goes down, turn O2 up. Simple. We'd be fine. Then I would reprimand myself for even implying that these absolutely inspirational miracle workers in the NICU had such an easy job.
His oxygen requirements climbed slowly but steadily and I was anxious to get the steriod course done again. He finally got 3 negative test results in a row and the steroids were allowed to be reattempted. 3 days later he was extubated (tubes out) at 10 weeks old and put onto CPAP - basically allowing him to breath on his own by keeping his lungs slightly inflated to make it easier for him, like a balloon that has already had a breath put in. It is given through nasal prongs and therefore much less invasive. The CPAP didn't last long but thankfully they were able to avoid reintubation and be ventilated through the prongs.
I was on the top of the world and decided that I would be starting the nursery. Obviously this had not been something we were in a hurry to do before his early arrival and not something we wanted to do the first few weeks in case it served as a permanent reminder should all not go so well. The rollercoaster was on rapid climb... unfortunately there are rules known by all roller coaster fanatics. There is only one reason for a climb and that is to plummet somewhere twice as fast.
A side effect of steriods, and one we were well aware of, is that it lowers the immune system. Giving Nico steriods when he wasn't even finished antibiotics was not optimum. The next phone call we got was to advise me Nico had a cold and " we have put him in a box." It was pretty obvious that this was not a literal term but it still didn't paint pretty pictures in my mind. A "box" is simply a tape square on the floor around his isolette where nurses and visitors must wear mask and gloves when opening his little portholes. It was more for the other babies in his Bay than for him. The steroids were stopped after 2 days of a 5 day course. A cold was not a big deal but it would be unwise to continue. Another slow 3 weeks ensued and he remained in the box. No cuddles. Barely any skin to skin touch. They did allow me to not wear gloves after a few days but it was limited.
So many times I fantasised on walking in, putting him in a car seat capsule hidden perfectly in an oversized bag and walking out. I was done. I could look after him at home, I had watched them long enough. SpO2 goes down, turn O2 up. Simple. We'd be fine. Then I would reprimand myself for even implying that these absolutely inspirational miracle workers in the NICU had such an easy job.
His oxygen requirements climbed slowly but steadily and I was anxious to get the steriod course done again. He finally got 3 negative test results in a row and the steroids were allowed to be reattempted. 3 days later he was extubated (tubes out) at 10 weeks old and put onto CPAP - basically allowing him to breath on his own by keeping his lungs slightly inflated to make it easier for him, like a balloon that has already had a breath put in. It is given through nasal prongs and therefore much less invasive. The CPAP didn't last long but thankfully they were able to avoid reintubation and be ventilated through the prongs.
10 days went by peacefully...
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