Nico has been home for over 7 months now.
I'd love to confirm that the roller-coaster ends when you leave the NICU/SCN bubble but unfortunately, for us this was not the case. . You know hen the roller coaster has done one lap, the guy asks "Anyone want to get off before the next lap?" He ignored our shouts of "Let us off, we've had enough!"
We have been in and out of hospital about 6 times in as many months for Nico's chronic irritability. The first 3 months or so he slept great at night and only woke for feeds. In the last 4 months tho I can count the times I (and he) have had more than 2 straight hours sleep on one hand. He got to a point of screaming, not crying, screaming, 9 hours a day. At worst it has been 18 hours, only pausing to cat nap for 30 minutes at a time. In a word: unmanageable. He goes completely rigid whenever he screams and it is almost impossible not to read "pain". So we take him to the hospital for answers:
First: Bronchiolitis.
Next: No answer. "Must just be behavioural but he is failing to thrive (500g weight gain in 3 months) so we will look into that" and his nasal gastric tube was put in after 3 months without it. He started to put on weight and was sent home, irritability forgotten
Then: "Brain irritability, it happens with premmies, he will grow out of it"
etc etc.
It has been so frustrating and saddening to see your little fighter, someone who has already worked so hard to stay in the world, struggling with something he can't communicate to you.
We have been seeing various specialists, respiratory, gastro-enterology and scariest of all specialist areas: neurology.
A few months in, during one of our first return visits to the hospital, the neurologist came by in case it was seizures. Luckily he happened to see one of these rigid screaming episodes and categorically said it was NOT seizures. I was happy and not surprised. He asked me as a mother, what my instincts said. Unrelated to the screaming, I told him was worried about cerebral palsy purely because I had just met 3 premmies with CP and knew that up to 25% of micro premmies developed this. I wasn't really prepared for his response of "Well, with the history, all we can do is put it together like a story, and in this case, knowing he had a brain haemorrhage, seeing some things like how his hands are so clenched and he doesn't really make controlled movements, the pieces fit. There is no test we can do, it will just be a wait-and-see how his development goes over the next year."
What do you do with that? Prepare for the worst, hope for the best. The prepare for the worst part, I can do. Research research research. What do I get? Nothing.
He is 14 months old as I write. 10 months corrected. He smiles and gurgles. He has the best laugh in the world. It's a real chuckle and the moment it starts, the 2 hours of screaming that may have just left you in tears yourself, is instantly forgotten. It makes everything right again.
Apart from that, he hasnt met any milestones. The only planned movement he makes is swatting the bottle away when he is being fed. There is no reaching, rolling or putting things to his mouth He has just gotten a tooth but since he doesn't have the know-how to hold something and put it to his mouth, teethers are pointless. I remember telling the social worker in the early NICU days, maybe due to the brain haemorrhage or when he got resussed, i cant remember, that I couldn't picture how we would cope with a toddler and a major disability if it Nico's prematurity were to cause him problems. Her answer was "But you would just evolve with him" and I didnt really know what she meant. I do now. Cerebral Palsy is now treated as a given. There was not a specific time when the tentative "yes it is a possibility" changed to "Yes, it is confirmed" , it just.. evolved.
Cerebral palsy doesn't really have a definition. The term cerebral palsy is completely useless to a parent wanting to know what life holds for their child. Cerebral palsy, as a term, SUX.
All i got from god only knows how many hours of reading was that he may not be able control his hand very well so writing may be messy - OR - he may never be able to walk, speak, use his arms or hands or any motor skills like that. How's that for a sliding scale of what the future might be.
From Little Things... Big Things Grow
Saturday, December 4, 2010
Can someone please lend me a crystal ball?
Nico has been home for over 7 months now.
I'd love to confirm that the roller-coaster ends when you leave the NICU/SCN bubble but unfortunately, for us this was not the case. . You know hen the roller coaster has done one lap, the guy asks "Anyone want to get off before the next lap?" He ignored our shouts of "Let us off, we've had enough!"
We have been in and out of hospital about 6 times in as many months for Nico's chronic irritability. The first 3 months or so he slept great at night and only woke for feeds. In the last 4 months tho I can count the times I (and he) have had more than 2 straight hours sleep on one hand. He got to a point of screaming, not crying, screaming, 9 hours a day. At worst it has been 18 hours, only pausing to cat nap for 30 minutes at a time. In a word: unmanageable. He goes completely rigid whenever he screams and it is almost impossible not to read "pain". So we take him to the hospital for answers:
First: Bronchiolitis.
Next: No answer. "Must just be behavioural but he is failing to thrive (500g weight gain in 3 months) so we will look into that" and his nasal gastric tube was put in after 3 months without it. He started to put on weight and was sent home, irritability forgotten
Then: "Brain irritability, it happens with premmies, he will grow out of it"
etc etc.
It has been so frustrating and saddening to see your little fighter, someone who has already worked so hard to stay in the world, struggling with something he can't communicate to you.
We have been seeing various specialists, respiratory, gastro-enterology and scariest of all specialist areas: neurology.
A few months in, during one of our first return visits to the hospital, the neurologist came by in case it was seizures. Luckily he happened to see one of these rigid screaming episodes and categorically said it was NOT seizures. I was happy and not surprised. He asked me as a mother, what my instincts said. Unrelated to the screaming, I told him was worried about cerebral palsy purely because I had just met 3 premmies with CP and knew that up to 25% of micro premmies developed this. I wasn't really prepared for his response of "Well, with the history, all we can do is put it together like a story, and in this case, knowing he had a brain haemorrhage, seeing some things like how his hands are so clenched and he doesn't really make controlled movements, the pieces fit. There is no test we can do, it will just be a wait-and-see how his development goes over the next year."
What do you do with that? Prepare for the worst, hope for the best. The prepare for the worst part, I can do. Research research research. What do I get? Nothing.
He is 14 months old as I write. 10 months corrected. He smiles and gurgles. He has the best laugh in the world. It's a real chuckle and the moment it starts, the 2 hours of screaming that may have just left you in tears yourself, is instantly forgotten. It makes everything right again.
Apart from that, he hasnt met any milestones. The only planned movement he makes is swatting the bottle away when he is being fed. There is no reaching, rolling or putting things to his mouth He has just gotten a tooth but since he doesn't have the know-how to hold something and put it to his mouth, teethers are pointless. I remember telling the social worker in the early NICU days, maybe due to the brain haemorrhage or when he got resussed, i cant remember, that I couldn't picture how we would cope with a toddler and a major disability if it Nico's prematurity were to cause him problems. Her answer was "But you would just evolve with him" and I didnt really know what she meant. I do now. Cerebral Palsy is now treated as a given. There was not a specific time when the tentative "yes it is a possibility" changed to "Yes, it is confirmed" , it just.. evolved.
Cerebral palsy doesn't really have a definition. The term cerebral palsy is completely useless to a parent wanting to know what life holds for their child. Cerebral palsy, as a term, SUX.
All i got from god only knows how many hours of reading was that he may not be able control his hand very well so writing may be messy - OR - he may never be able to walk, speak, use his arms or hands or any motor skills like that. How's that for a sliding scale of what the future might be.
I'd love to confirm that the roller-coaster ends when you leave the NICU/SCN bubble but unfortunately, for us this was not the case. . You know hen the roller coaster has done one lap, the guy asks "Anyone want to get off before the next lap?" He ignored our shouts of "Let us off, we've had enough!"
We have been in and out of hospital about 6 times in as many months for Nico's chronic irritability. The first 3 months or so he slept great at night and only woke for feeds. In the last 4 months tho I can count the times I (and he) have had more than 2 straight hours sleep on one hand. He got to a point of screaming, not crying, screaming, 9 hours a day. At worst it has been 18 hours, only pausing to cat nap for 30 minutes at a time. In a word: unmanageable. He goes completely rigid whenever he screams and it is almost impossible not to read "pain". So we take him to the hospital for answers:
First: Bronchiolitis.
Next: No answer. "Must just be behavioural but he is failing to thrive (500g weight gain in 3 months) so we will look into that" and his nasal gastric tube was put in after 3 months without it. He started to put on weight and was sent home, irritability forgotten
Then: "Brain irritability, it happens with premmies, he will grow out of it"
etc etc.
It has been so frustrating and saddening to see your little fighter, someone who has already worked so hard to stay in the world, struggling with something he can't communicate to you.
We have been seeing various specialists, respiratory, gastro-enterology and scariest of all specialist areas: neurology.
A few months in, during one of our first return visits to the hospital, the neurologist came by in case it was seizures. Luckily he happened to see one of these rigid screaming episodes and categorically said it was NOT seizures. I was happy and not surprised. He asked me as a mother, what my instincts said. Unrelated to the screaming, I told him was worried about cerebral palsy purely because I had just met 3 premmies with CP and knew that up to 25% of micro premmies developed this. I wasn't really prepared for his response of "Well, with the history, all we can do is put it together like a story, and in this case, knowing he had a brain haemorrhage, seeing some things like how his hands are so clenched and he doesn't really make controlled movements, the pieces fit. There is no test we can do, it will just be a wait-and-see how his development goes over the next year."
What do you do with that? Prepare for the worst, hope for the best. The prepare for the worst part, I can do. Research research research. What do I get? Nothing.
He is 14 months old as I write. 10 months corrected. He smiles and gurgles. He has the best laugh in the world. It's a real chuckle and the moment it starts, the 2 hours of screaming that may have just left you in tears yourself, is instantly forgotten. It makes everything right again.
Apart from that, he hasnt met any milestones. The only planned movement he makes is swatting the bottle away when he is being fed. There is no reaching, rolling or putting things to his mouth He has just gotten a tooth but since he doesn't have the know-how to hold something and put it to his mouth, teethers are pointless. I remember telling the social worker in the early NICU days, maybe due to the brain haemorrhage or when he got resussed, i cant remember, that I couldn't picture how we would cope with a toddler and a major disability if it Nico's prematurity were to cause him problems. Her answer was "But you would just evolve with him" and I didnt really know what she meant. I do now. Cerebral Palsy is now treated as a given. There was not a specific time when the tentative "yes it is a possibility" changed to "Yes, it is confirmed" , it just.. evolved.
Cerebral palsy doesn't really have a definition. The term cerebral palsy is completely useless to a parent wanting to know what life holds for their child. Cerebral palsy, as a term, SUX.
All i got from god only knows how many hours of reading was that he may not be able control his hand very well so writing may be messy - OR - he may never be able to walk, speak, use his arms or hands or any motor skills like that. How's that for a sliding scale of what the future might be.
Sunday, May 30, 2010
We got him!!
Tuesday 18 May: At 7 months and 5 days old, we got our baby boy!! There are no words to explain what that felt like. Like there are no words to explain the feeling when you first see your newborn. Completely amazing, new and scary but so natural. After several hours of waiting around while forms got signed, meds got ordered and the doctors did their final exam of our little man, we bundled him into the capsule, thanked everyone and ran out the door. There really was a huge, audible sigh of relief as we walked out the double glass NICU doors and realising that we would never have to go back in there (unles we want to visit)
The seven months flashed through my head and it suddenly hit me that we had been through something pretty intense. I know I have thought this before but not sure if I have written it but it doesn't actually feel as bad or as stressful as it should have. I am sure there were days where I was about to have a complete mental breakdown but that has faded from my memory. I can't visualise him being the size of my hand anymore. I know his arm was thinner than my finger but I just can't picture it. Thank god for photos, thank god for this blog and thank god for Nico.
Brooklyn was at daycare so we made a quick stop to get her. We'd been telling her for a few days that he was coming home but the look on her face when she saw him in the car was priceless. She was so excited and wanted the sun shade off him just so she could look at him the whole way home. It was the sweetest thing to see her little brain processing this and the smile that just never stopped. She calls him "Little Man" and didn't leave his side the whole afternoon. We still get a runnig commentary of what Nico was up to too : "Leeko's awake!" "Leeko's crying" "Leeko's ungy" (we still aren't sure if that means angry or hungry)
His night times are fabulous. He falls asleep about 7 or 8 pm, has a feed at 10.30 and then I wake him whenever I wake up in the night, usually around 2 or 3am for a feed. I wouldn't bother but we have a few feeding issues so I need him to get in as many feeds as possible. If he feeds well, this gets him through til 7.30am, if not, there may be another feed at 6am.
Daytimes are HECTIC!
I am sure we will settle into a better pattern but at the moment, his feeds take up to an hour, every 3 hours and he is often unsettled. This doesn't leave me much time for good quality time with Brooklyn and as fabulous of a toddler as she is, her behaviour is already showing me that she is feeling it. At least they are both asleep by 8 and I get some wind down time now though. This is a new thing to me as the last 7 months have been filled with hospital visits, expressing or work, and before that, I worked 4 evenings.
If anyone has any suggestions (I have probably tried them all but worth asking) about feeding, here is our problem:
About 60% of the time, whether it's bottle or breast feed...Nico will feed for a few minutes (sometimes we won't even get that far) and then stop and clamp his mouth shut/ arch his back/ turn his head/ scream. One or all of the above. He does have reflux, he has medication for that. He is best at the night feeds when I wake him, he will still often only have one side (not enough, my supply is crap after 7 months expressing) but at least he is calm and getting a positive association happening.
We got him!!
Tuesday 18 May: At 7 months and 5 days old, we got our baby boy!! There are no words to explain what that felt like. Like there are no words to explain the feeling when you first see your newborn. Completely amazing, new and scary but so natural. After several hours of waiting around while forms got signed, meds got ordered and the doctors did their final exam of our little man, we bundled him into the capsule, thanked everyone and ran out the door. There really was a huge, audible sigh of relief as we walked out the double glass NICU doors and realising that we would never have to go back in there (unles we want to visit)
The seven months flashed through my head and it suddenly hit me that we had been through something pretty intense. I know I have thought this before but not sure if I have written it but it doesn't actually feel as bad or as stressful as it should have. I am sure there were days where I was about to have a complete mental breakdown but that has faded from my memory. I can't visualise him being the size of my hand anymore. I know his arm was thinner than my finger but I just can't picture it. Thank god for photos, thank god for this blog and thank god for Nico.
Brooklyn was at daycare so we made a quick stop to get her. We'd been telling her for a few days that he was coming home but the look on her face when she saw him in the car was priceless. She was so excited and wanted the sun shade off him just so she could look at him the whole way home. It was the sweetest thing to see her little brain processing this and the smile that just never stopped. She calls him "Little Man" and didn't leave his side the whole afternoon. We still get a runnig commentary of what Nico was up to too : "Leeko's awake!" "Leeko's crying" "Leeko's ungy" (we still aren't sure if that means angry or hungry)
His night times are fabulous. He falls asleep about 7 or 8 pm, has a feed at 10.30 and then I wake him whenever I wake up in the night, usually around 2 or 3am for a feed. I wouldn't bother but we have a few feeding issues so I need him to get in as many feeds as possible. If he feeds well, this gets him through til 7.30am, if not, there may be another feed at 6am.
Daytimes are HECTIC!
I am sure we will settle into a better pattern but at the moment, his feeds take up to an hour, every 3 hours and he is often unsettled. This doesn't leave me much time for good quality time with Brooklyn and as fabulous of a toddler as she is, her behaviour is already showing me that she is feeling it. At least they are both asleep by 8 and I get some wind down time now though. This is a new thing to me as the last 7 months have been filled with hospital visits, expressing or work, and before that, I worked 4 evenings.
If anyone has any suggestions (I have probably tried them all but worth asking) about feeding, here is our problem:
About 60% of the time, whether it's bottle or breast feed...Nico will feed for a few minutes (sometimes we won't even get that far) and then stop and clamp his mouth shut/ arch his back/ turn his head/ scream. One or all of the above. He does have reflux, he has medication for that. He is best at the night feeds when I wake him, he will still often only have one side (not enough, my supply is crap after 7 months expressing) but at least he is calm and getting a positive association happening.
Sunday, May 16, 2010
The Home Stretch
Nico was scheduled for a hernia repair on Wednesday 12/5/10. His 7 month birthday. He was to be transported by ambulance back to Monash but no-one knew exactly when or to which ward. The lovely team at Casey were on the phone most of Monday trying to get him a bed in the Paeds ward instead of Special care Nursery but to no avail. In fact, when I arrived there on Tuesday ready to ride the ambulance with him, I was told there were no beds anywhere and not to hold my breath for the move and even perhaps start processing the idea of him not having his operation the next day. No beds in Special Care, no beds in Paeds... we'd try again in the morning. When I visited later that night, they had word that he was moving at 10 am and going to the Paeds ward. This was great news, I'd still be able to take Brooklyn and he'd be in the same quiet atmosphere as he had been the last 3 weeks. 
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
The Home Stretch
Nico was scheduled for a hernia repair on Wednesday 12/5/10. His 7 month birthday. He was to be transported by ambulance back to Monash but no-one knew exactly when or to which ward. The lovely team at Casey were on the phone most of Monday trying to get him a bed in the Paeds ward instead of Special care Nursery but to no avail. In fact, when I arrived there on Tuesday ready to ride the ambulance with him, I was told there were no beds anywhere and not to hold my breath for the move and even perhaps start processing the idea of him not having his operation the next day. No beds in Special Care, no beds in Paeds... we'd try again in the morning. When I visited later that night, they had word that he was moving at 10 am and going to the Paeds ward. This was great news, I'd still be able to take Brooklyn and he'd be in the same quiet atmosphere as he had been the last 3 weeks.
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
Monday, May 3, 2010
Sleeping Over
As I wrote last week I had reservations about Nico moving to the Paeds ward... after 6 and a bit months in a nursery it was really strange, maybe even scary. I was not sure the nurses had the experience of dealing with these ex-micro prems or understand what he needed. Ask me today and I will tell you something different,. He is in the right place for his age (corrected at least) and development. The nurses AREN"T used to dealing with a micro prem, they are used to dealing with regular babies and children and Nico is now one of those. He just needs some extra monitoring. I need to get this into my head and they have done this without knowing. I don't have panic attacks when the monitor is turned off, unless he is left alone without it. I don't constantly feel like he is just going to stop. I feel like he is mine and I can do what I want with him, without permission from anyone and even without having to tell them that is what I am about to do. I am sure it sounds ridiculous but this is all new to me. "Can I feed him?" "Can I bath him" have become "Oh, I fed him an hour ago because he was hungry" and "We'll be in the bath if you are wondering where we are"
The only thing I do notice that I don't like is that nurses expect me/ us to be like any other sick child's parent as opposed to a long term NICU parent with other commitments, and want us there 24 hours a day virtually. Many seem to get exasperated, or at best suprised, when we leave and look at us like terrible, uncaring parents. I understand that Nico is there for 3 weeks to them. but overlook that we are now in the 7th month of his stay. It's just not feasible. Comments like "He has been unsettled since 8pm, we are busy and don't have time for this" and "You know you can stay here the night, there is a bed?" however they are meant, just come off as harsh.
I have spent every spare moment there though, it really has been great. Strangely enough, I have seen less of a few people I did when the hospital was further away because of this which I feel bad about but I know they understand. It's just been so nice to have him near and be able to comfortably spend hours on end in his room. I don't have to do 6am and 8pm visits anymore because I was only doing them to spend time with Brooklyn in the day but now Brooklyn can come and her friends can come to visit her there! It has freed up so many restrictions and made my life simpler in many ways, more full on in others.
I had my first sleep over with him on Monday last week. I was a wee bit scared at the idea for purely selfish reasons: How much sleep will I get??? I already have to function on 6 hours sleep (divided in two parts to express) and barely get by and I was expecting him to shorten this even more. I fed him at 11.00, he woke at 3 and when I snuck out to get home for Brooklyn at 7.30, he was still asleep. It was just like being at home but with cuddles and a squeaky sofabed. Surely this was a fluke? I tried again a few nights later: SAME THING. That's when I really started to feel ready for him to come home, he doesn't need hospitals and doctors and nurses and blood tests and and and... he just needs a watchful eye and a bit of oxygen.
i am cutting this short because it's 11pm, I just finished work, and am off to the hospital for my 3rd sleepover. I am staying there until heading to work at midday tomorrow. Such a luxury
The only thing I do notice that I don't like is that nurses expect me/ us to be like any other sick child's parent as opposed to a long term NICU parent with other commitments, and want us there 24 hours a day virtually. Many seem to get exasperated, or at best suprised, when we leave and look at us like terrible, uncaring parents. I understand that Nico is there for 3 weeks to them. but overlook that we are now in the 7th month of his stay. It's just not feasible. Comments like "He has been unsettled since 8pm, we are busy and don't have time for this" and "You know you can stay here the night, there is a bed?" however they are meant, just come off as harsh.
I have spent every spare moment there though, it really has been great. Strangely enough, I have seen less of a few people I did when the hospital was further away because of this which I feel bad about but I know they understand. It's just been so nice to have him near and be able to comfortably spend hours on end in his room. I don't have to do 6am and 8pm visits anymore because I was only doing them to spend time with Brooklyn in the day but now Brooklyn can come and her friends can come to visit her there! It has freed up so many restrictions and made my life simpler in many ways, more full on in others.
I had my first sleep over with him on Monday last week. I was a wee bit scared at the idea for purely selfish reasons: How much sleep will I get??? I already have to function on 6 hours sleep (divided in two parts to express) and barely get by and I was expecting him to shorten this even more. I fed him at 11.00, he woke at 3 and when I snuck out to get home for Brooklyn at 7.30, he was still asleep. It was just like being at home but with cuddles and a squeaky sofabed. Surely this was a fluke? I tried again a few nights later: SAME THING. That's when I really started to feel ready for him to come home, he doesn't need hospitals and doctors and nurses and blood tests and and and... he just needs a watchful eye and a bit of oxygen.
i am cutting this short because it's 11pm, I just finished work, and am off to the hospital for my 3rd sleepover. I am staying there until heading to work at midday tomorrow. Such a luxury
Sleeping Over
As I wrote last week I had reservations about Nico moving to the Paeds ward... after 6 and a bit months in a nursery it was really strange, maybe even scary. I was not sure the nurses had the experience of dealing with these ex-micro prems or understand what he needed. Ask me today and I will tell you something different,. He is in the right place for his age (corrected at least) and development. The nurses AREN"T used to dealing with a micro prem, they are used to dealing with regular babies and children and Nico is now one of those. He just needs some extra monitoring. I need to get this into my head and they have done this without knowing. I don't have panic attacks when the monitor is turned off, unless he is left alone without it. I don't constantly feel like he is just going to stop. I feel like he is mine and I can do what I want with him, without permission from anyone and even without having to tell them that is what I am about to do. I am sure it sounds ridiculous but this is all new to me. "Can I feed him?" "Can I bath him" have become "Oh, I fed him an hour ago because he was hungry" and "We'll be in the bath if you are wondering where we are"
The only thing I do notice that I don't like is that nurses expect me/ us to be like any other sick child's parent as opposed to a long term NICU parent with other commitments, and want us there 24 hours a day virtually. Many seem to get exasperated, or at best suprised, when we leave and look at us like terrible, uncaring parents. I understand that Nico is there for 3 weeks to them. but overlook that we are now in the 7th month of his stay. It's just not feasible. Comments like "He has been unsettled since 8pm, we are busy and don't have time for this" and "You know you can stay here the night, there is a bed?" however they are meant, just come off as harsh.
I have spent every spare moment there though, it really has been great. Strangely enough, I have seen less of a few people I did when the hospital was further away because of this which I feel bad about but I know they understand. It's just been so nice to have him near and be able to comfortably spend hours on end in his room. I don't have to do 6am and 8pm visits anymore because I was only doing them to spend time with Brooklyn in the day but now Brooklyn can come and her friends can come to visit her there! It has freed up so many restrictions and made my life simpler in many ways, more full on in others.
I had my first sleep over with him on Monday last week. I was a wee bit scared at the idea for purely selfish reasons: How much sleep will I get??? I already have to function on 6 hours sleep (divided in two parts to express) and barely get by and I was expecting him to shorten this even more. I fed him at 11.00, he woke at 3 and when I snuck out to get home for Brooklyn at 7.30, he was still asleep. It was just like being at home but with cuddles and a squeaky sofabed. Surely this was a fluke? I tried again a few nights later: SAME THING. That's when I really started to feel ready for him to come home, he doesn't need hospitals and doctors and nurses and blood tests and and and... he just needs a watchful eye and a bit of oxygen.
i am cutting this short because it's 11pm, I just finished work, and am off to the hospital for my 3rd sleepover. I am staying there until heading to work at midday tomorrow. Such a luxury
The only thing I do notice that I don't like is that nurses expect me/ us to be like any other sick child's parent as opposed to a long term NICU parent with other commitments, and want us there 24 hours a day virtually. Many seem to get exasperated, or at best suprised, when we leave and look at us like terrible, uncaring parents. I understand that Nico is there for 3 weeks to them. but overlook that we are now in the 7th month of his stay. It's just not feasible. Comments like "He has been unsettled since 8pm, we are busy and don't have time for this" and "You know you can stay here the night, there is a bed?" however they are meant, just come off as harsh.
I have spent every spare moment there though, it really has been great. Strangely enough, I have seen less of a few people I did when the hospital was further away because of this which I feel bad about but I know they understand. It's just been so nice to have him near and be able to comfortably spend hours on end in his room. I don't have to do 6am and 8pm visits anymore because I was only doing them to spend time with Brooklyn in the day but now Brooklyn can come and her friends can come to visit her there! It has freed up so many restrictions and made my life simpler in many ways, more full on in others.
I had my first sleep over with him on Monday last week. I was a wee bit scared at the idea for purely selfish reasons: How much sleep will I get??? I already have to function on 6 hours sleep (divided in two parts to express) and barely get by and I was expecting him to shorten this even more. I fed him at 11.00, he woke at 3 and when I snuck out to get home for Brooklyn at 7.30, he was still asleep. It was just like being at home but with cuddles and a squeaky sofabed. Surely this was a fluke? I tried again a few nights later: SAME THING. That's when I really started to feel ready for him to come home, he doesn't need hospitals and doctors and nurses and blood tests and and and... he just needs a watchful eye and a bit of oxygen.
i am cutting this short because it's 11pm, I just finished work, and am off to the hospital for my 3rd sleepover. I am staying there until heading to work at midday tomorrow. Such a luxury
Sunday, April 25, 2010
Closer to Home
What a mega fortnight!! It's been crazy good and crazy not-so-good but whichever way I look at at it, its been progress.
Nico had his hernia operation on 14 April. I went in early in the morning to give him his "last" feed before he was Nil By Mouth. His operation was scheduled for 1pm and since it was a breastfeed topped up with EBM, he was able to feed until 9am. If it had been formula it would have been 7am. It felt awful leaving him to get back to my daughter but since my husband was going to the hospital and would stay with him until he went in to surgery, I felt ok. If only the op had been on the Tuesday when Brooklyn was in daycare and I took the day of work for it, then I would have been able to be there all the way through.
He came out at 3.30 but they didn't ring me like I had asked them to. I was a bit annoyed but they thought that telling my husband he'd be out in an hour and a half was enough. Grrr. So when I called to find out what was going on and they said all was well and he was out, I raced to the hospital (35 min trip). He was on double the amount of oxygen he had been on (0.5L) but aside from that, he was great. I asked the nurse what painkillers he was on, expecting morphine or something... the answer "Panadol". Seriously?? Panadol?? Not even Panadeine or Panadol Forte (does that exist?) just regular old panadol.
On Friday morning, I was in the shower when the phone rang. Brooklyn NEVER answers the phone but I figured it was her dad so I said "Get the phone. Push the button. Say Hi Dada" SHe did the first two but said nothing. "Is there someone talking?" I asked "Yes" "Is it a Dada?" "No" She handed it to me and I dubiously said hello. The Nurse Unit Manager was at the other end and telling me that NETS - Newborn Emergency Transport Service - had been booked to take Nico to our local hospital between 1.30 and 3pm TODAY. Hurrah. He would stay there til his second hernia operation in a month and then come home. So excited. I dropped Brooklyn at daycare and met my husband there for an already scheduled "Family Meeting" with Nico's team. They just went over the plan, checked we were ok with him being home with oxygen and gave us the finer details of "The Plan"
He was loaded up in the van and I met them 5 minutes after they they arrived (I had to make a stop to get Brooklyn) at Special Care in Casey hospital. It only as 6 cots, and they are only isolettes or hose "tubs" newborns go into. Nico is 5kgs, seeing as newborns are around 3 to 3.5, you can imagine he looked "snug".
After 6 days, he was moved to the paediatric ward. Not because he was gettting any better or because they couldn't take care of him in SCN, just because he was too big for the tub and they didn't want to bring a cot in. I was petrified and sad. He just seemed to small for a kids ward. He would be in a single room... what would he do all day? There would be no nurses dealing with other babies for him to listen to, no parents to eavesdrop on, no babies crying to drive him mad. Just a little man in a big room. Alone. I already have major issues with the little amount of time we get to dedicate to him given our less than ideal circumstances (no family and working 3 days) so this just made me feel even worse. BUT then I realised something. It was a single room, it was big, it had a door... Brooklyn could come with me. It had a playroom and portable oxygen for Nico.. we could stay as long as I wanted, she would be happy there for days.
I have to admit, and it is nothing against the nurses, but I still have my reservations about whether it is the best place for him. I worry about stimulation and development. I worry that the nurses are used to children not babies and most patients are pre-op, post-op or have asthma. I know that sounds like I am trivialising the ward but that's not the intention. I am just saying 6 month old micro prem babies with Chronic Lung Disease are a completely different needs group. Not harder, easier, better or worse, just different. I went in one day and his oximeter was off. OFF. This is the monitor that ensures his lungs are doing their job. If he pulled the prongs out of his nose (which is not likely but definately possible) well.. lets just say it would not have been good. I think they were given a bit of training/bollicking for that as it has not happened again since and his oximeter goes everywhere with him. It sounds so funny to say that as Nico has never "been" anywhere, except once to the operating theatre and then the NETS ambulance. Now he goes places. He goes to the room with the bath in it, he has been down to diagnostic imaging twice, to the playroom a few times and I am even allowed to take him downstairs and outside in the pram. I haven't yet but once our pram wheel is fixed, noone will stop me.
I have been able to spend twice if not 3 times as long with him in the day as I could previously. Mainly because he is closer but also because he is not in a nursery where we get a seat beside his crib and that's it. On Friday I spent from 9 til 11 there, dropped Brooklyn off at daycare and went back at 12.30 after popping home for lunch, and stayed til 5. Then I went back at 9pm for his feed when my husband went to bed. It was bliss. We sat in the bouncer, we played on the floor, we fed, he napped... all the things a regular mum and baby get to do.. minus the housework :D
Nico had his hernia operation on 14 April. I went in early in the morning to give him his "last" feed before he was Nil By Mouth. His operation was scheduled for 1pm and since it was a breastfeed topped up with EBM, he was able to feed until 9am. If it had been formula it would have been 7am. It felt awful leaving him to get back to my daughter but since my husband was going to the hospital and would stay with him until he went in to surgery, I felt ok. If only the op had been on the Tuesday when Brooklyn was in daycare and I took the day of work for it, then I would have been able to be there all the way through.
He came out at 3.30 but they didn't ring me like I had asked them to. I was a bit annoyed but they thought that telling my husband he'd be out in an hour and a half was enough. Grrr. So when I called to find out what was going on and they said all was well and he was out, I raced to the hospital (35 min trip). He was on double the amount of oxygen he had been on (0.5L) but aside from that, he was great. I asked the nurse what painkillers he was on, expecting morphine or something... the answer "Panadol". Seriously?? Panadol?? Not even Panadeine or Panadol Forte (does that exist?) just regular old panadol.
On Friday morning, I was in the shower when the phone rang. Brooklyn NEVER answers the phone but I figured it was her dad so I said "Get the phone. Push the button. Say Hi Dada" SHe did the first two but said nothing. "Is there someone talking?" I asked "Yes" "Is it a Dada?" "No" She handed it to me and I dubiously said hello. The Nurse Unit Manager was at the other end and telling me that NETS - Newborn Emergency Transport Service - had been booked to take Nico to our local hospital between 1.30 and 3pm TODAY. Hurrah. He would stay there til his second hernia operation in a month and then come home. So excited. I dropped Brooklyn at daycare and met my husband there for an already scheduled "Family Meeting" with Nico's team. They just went over the plan, checked we were ok with him being home with oxygen and gave us the finer details of "The Plan"
He was loaded up in the van and I met them 5 minutes after they they arrived (I had to make a stop to get Brooklyn) at Special Care in Casey hospital. It only as 6 cots, and they are only isolettes or hose "tubs" newborns go into. Nico is 5kgs, seeing as newborns are around 3 to 3.5, you can imagine he looked "snug".
After 6 days, he was moved to the paediatric ward. Not because he was gettting any better or because they couldn't take care of him in SCN, just because he was too big for the tub and they didn't want to bring a cot in. I was petrified and sad. He just seemed to small for a kids ward. He would be in a single room... what would he do all day? There would be no nurses dealing with other babies for him to listen to, no parents to eavesdrop on, no babies crying to drive him mad. Just a little man in a big room. Alone. I already have major issues with the little amount of time we get to dedicate to him given our less than ideal circumstances (no family and working 3 days) so this just made me feel even worse. BUT then I realised something. It was a single room, it was big, it had a door... Brooklyn could come with me. It had a playroom and portable oxygen for Nico.. we could stay as long as I wanted, she would be happy there for days.
I have to admit, and it is nothing against the nurses, but I still have my reservations about whether it is the best place for him. I worry about stimulation and development. I worry that the nurses are used to children not babies and most patients are pre-op, post-op or have asthma. I know that sounds like I am trivialising the ward but that's not the intention. I am just saying 6 month old micro prem babies with Chronic Lung Disease are a completely different needs group. Not harder, easier, better or worse, just different. I went in one day and his oximeter was off. OFF. This is the monitor that ensures his lungs are doing their job. If he pulled the prongs out of his nose (which is not likely but definately possible) well.. lets just say it would not have been good. I think they were given a bit of training/bollicking for that as it has not happened again since and his oximeter goes everywhere with him. It sounds so funny to say that as Nico has never "been" anywhere, except once to the operating theatre and then the NETS ambulance. Now he goes places. He goes to the room with the bath in it, he has been down to diagnostic imaging twice, to the playroom a few times and I am even allowed to take him downstairs and outside in the pram. I haven't yet but once our pram wheel is fixed, noone will stop me.
I have been able to spend twice if not 3 times as long with him in the day as I could previously. Mainly because he is closer but also because he is not in a nursery where we get a seat beside his crib and that's it. On Friday I spent from 9 til 11 there, dropped Brooklyn off at daycare and went back at 12.30 after popping home for lunch, and stayed til 5. Then I went back at 9pm for his feed when my husband went to bed. It was bliss. We sat in the bouncer, we played on the floor, we fed, he napped... all the things a regular mum and baby get to do.. minus the housework :D
Closer to Home
What a mega fortnight!! It's been crazy good and crazy not-so-good but whichever way I look at at it, its been progress.
Nico had his hernia operation on 14 April. I went in early in the morning to give him his "last" feed before he was Nil By Mouth. His operation was scheduled for 1pm and since it was a breastfeed topped up with EBM, he was able to feed until 9am. If it had been formula it would have been 7am. It felt awful leaving him to get back to my daughter but since my husband was going to the hospital and would stay with him until he went in to surgery, I felt ok. If only the op had been on the Tuesday when Brooklyn was in daycare and I took the day of work for it, then I would have been able to be there all the way through.
He came out at 3.30 but they didn't ring me like I had asked them to. I was a bit annoyed but they thought that telling my husband he'd be out in an hour and a half was enough. Grrr. So when I called to find out what was going on and they said all was well and he was out, I raced to the hospital (35 min trip). He was on double the amount of oxygen he had been on (0.5L) but aside from that, he was great. I asked the nurse what painkillers he was on, expecting morphine or something... the answer "Panadol". Seriously?? Panadol?? Not even Panadeine or Panadol Forte (does that exist?) just regular old panadol.
On Friday morning, I was in the shower when the phone rang. Brooklyn NEVER answers the phone but I figured it was her dad so I said "Get the phone. Push the button. Say Hi Dada" SHe did the first two but said nothing. "Is there someone talking?" I asked "Yes" "Is it a Dada?" "No" She handed it to me and I dubiously said hello. The Nurse Unit Manager was at the other end and telling me that NETS - Newborn Emergency Transport Service - had been booked to take Nico to our local hospital between 1.30 and 3pm TODAY. Hurrah. He would stay there til his second hernia operation in a month and then come home. So excited. I dropped Brooklyn at daycare and met my husband there for an already scheduled "Family Meeting" with Nico's team. They just went over the plan, checked we were ok with him being home with oxygen and gave us the finer details of "The Plan"
He was loaded up in the van and I met them 5 minutes after they they arrived (I had to make a stop to get Brooklyn) at Special Care in Casey hospital. It only as 6 cots, and they are only isolettes or hose "tubs" newborns go into. Nico is 5kgs, seeing as newborns are around 3 to 3.5, you can imagine he looked "snug".
After 6 days, he was moved to the paediatric ward. Not because he was gettting any better or because they couldn't take care of him in SCN, just because he was too big for the tub and they didn't want to bring a cot in. I was petrified and sad. He just seemed to small for a kids ward. He would be in a single room... what would he do all day? There would be no nurses dealing with other babies for him to listen to, no parents to eavesdrop on, no babies crying to drive him mad. Just a little man in a big room. Alone. I already have major issues with the little amount of time we get to dedicate to him given our less than ideal circumstances (no family and working 3 days) so this just made me feel even worse. BUT then I realised something. It was a single room, it was big, it had a door... Brooklyn could come with me. It had a playroom and portable oxygen for Nico.. we could stay as long as I wanted, she would be happy there for days.
I have to admit, and it is nothing against the nurses, but I still have my reservations about whether it is the best place for him. I worry about stimulation and development. I worry that the nurses are used to children not babies and most patients are pre-op, post-op or have asthma. I know that sounds like I am trivialising the ward but that's not the intention. I am just saying 6 month old micro prem babies with Chronic Lung Disease are a completely different needs group. Not harder, easier, better or worse, just different. I went in one day and his oximeter was off. OFF. This is the monitor that ensures his lungs are doing their job. If he pulled the prongs out of his nose (which is not likely but definately possible) well.. lets just say it would not have been good. I think they were given a bit of training/bollicking for that as it has not happened again since and his oximeter goes everywhere with him. It sounds so funny to say that as Nico has never "been" anywhere, except once to the operating theatre and then the NETS ambulance. Now he goes places. He goes to the room with the bath in it, he has been down to diagnostic imaging twice, to the playroom a few times and I am even allowed to take him downstairs and outside in the pram. I haven't yet but once our pram wheel is fixed, noone will stop me.
I have been able to spend twice if not 3 times as long with him in the day as I could previously. Mainly because he is closer but also because he is not in a nursery where we get a seat beside his crib and that's it. On Friday I spent from 9 til 11 there, dropped Brooklyn off at daycare and went back at 12.30 after popping home for lunch, and stayed til 5. Then I went back at 9pm for his feed when my husband went to bed. It was bliss. We sat in the bouncer, we played on the floor, we fed, he napped... all the things a regular mum and baby get to do.. minus the housework :D
Nico had his hernia operation on 14 April. I went in early in the morning to give him his "last" feed before he was Nil By Mouth. His operation was scheduled for 1pm and since it was a breastfeed topped up with EBM, he was able to feed until 9am. If it had been formula it would have been 7am. It felt awful leaving him to get back to my daughter but since my husband was going to the hospital and would stay with him until he went in to surgery, I felt ok. If only the op had been on the Tuesday when Brooklyn was in daycare and I took the day of work for it, then I would have been able to be there all the way through.
He came out at 3.30 but they didn't ring me like I had asked them to. I was a bit annoyed but they thought that telling my husband he'd be out in an hour and a half was enough. Grrr. So when I called to find out what was going on and they said all was well and he was out, I raced to the hospital (35 min trip). He was on double the amount of oxygen he had been on (0.5L) but aside from that, he was great. I asked the nurse what painkillers he was on, expecting morphine or something... the answer "Panadol". Seriously?? Panadol?? Not even Panadeine or Panadol Forte (does that exist?) just regular old panadol.
On Friday morning, I was in the shower when the phone rang. Brooklyn NEVER answers the phone but I figured it was her dad so I said "Get the phone. Push the button. Say Hi Dada" SHe did the first two but said nothing. "Is there someone talking?" I asked "Yes" "Is it a Dada?" "No" She handed it to me and I dubiously said hello. The Nurse Unit Manager was at the other end and telling me that NETS - Newborn Emergency Transport Service - had been booked to take Nico to our local hospital between 1.30 and 3pm TODAY. Hurrah. He would stay there til his second hernia operation in a month and then come home. So excited. I dropped Brooklyn at daycare and met my husband there for an already scheduled "Family Meeting" with Nico's team. They just went over the plan, checked we were ok with him being home with oxygen and gave us the finer details of "The Plan"
He was loaded up in the van and I met them 5 minutes after they they arrived (I had to make a stop to get Brooklyn) at Special Care in Casey hospital. It only as 6 cots, and they are only isolettes or hose "tubs" newborns go into. Nico is 5kgs, seeing as newborns are around 3 to 3.5, you can imagine he looked "snug".
After 6 days, he was moved to the paediatric ward. Not because he was gettting any better or because they couldn't take care of him in SCN, just because he was too big for the tub and they didn't want to bring a cot in. I was petrified and sad. He just seemed to small for a kids ward. He would be in a single room... what would he do all day? There would be no nurses dealing with other babies for him to listen to, no parents to eavesdrop on, no babies crying to drive him mad. Just a little man in a big room. Alone. I already have major issues with the little amount of time we get to dedicate to him given our less than ideal circumstances (no family and working 3 days) so this just made me feel even worse. BUT then I realised something. It was a single room, it was big, it had a door... Brooklyn could come with me. It had a playroom and portable oxygen for Nico.. we could stay as long as I wanted, she would be happy there for days.
I have to admit, and it is nothing against the nurses, but I still have my reservations about whether it is the best place for him. I worry about stimulation and development. I worry that the nurses are used to children not babies and most patients are pre-op, post-op or have asthma. I know that sounds like I am trivialising the ward but that's not the intention. I am just saying 6 month old micro prem babies with Chronic Lung Disease are a completely different needs group. Not harder, easier, better or worse, just different. I went in one day and his oximeter was off. OFF. This is the monitor that ensures his lungs are doing their job. If he pulled the prongs out of his nose (which is not likely but definately possible) well.. lets just say it would not have been good. I think they were given a bit of training/bollicking for that as it has not happened again since and his oximeter goes everywhere with him. It sounds so funny to say that as Nico has never "been" anywhere, except once to the operating theatre and then the NETS ambulance. Now he goes places. He goes to the room with the bath in it, he has been down to diagnostic imaging twice, to the playroom a few times and I am even allowed to take him downstairs and outside in the pram. I haven't yet but once our pram wheel is fixed, noone will stop me.
I have been able to spend twice if not 3 times as long with him in the day as I could previously. Mainly because he is closer but also because he is not in a nursery where we get a seat beside his crib and that's it. On Friday I spent from 9 til 11 there, dropped Brooklyn off at daycare and went back at 12.30 after popping home for lunch, and stayed til 5. Then I went back at 9pm for his feed when my husband went to bed. It was bliss. We sat in the bouncer, we played on the floor, we fed, he napped... all the things a regular mum and baby get to do.. minus the housework :D
Monday, April 12, 2010
The beginning of the end of the beginning
| I forgot to chronicle for a while. I was sidetracked by my parents arrival. With Nico's homecoming in mind, a few months ago a fab friend of mine offered to help me make curtains for his room as I was having trouble finding what I wanted in ready-mades. When I say 'help me', I would like to clarify that I know nothing about sewing I tried for 2 semesters over two years at the start of high school when it was mandatory. The only thing I remembered was making an N shape when threading the machine if done correctly. And then, I think found that actually the N shape means it is wrong.. as in if you see an N it means NO. I don't remember. Anyway. We started making the curtains 3 weeks ago on Tuesdays while our kids were in daycare. The 2nd Tuesday (week 23 of NIco's life), while making curtains, phone rings and I assume it is my husband calling after his visit to the hospital. I was right. Usually this conversation goes "Just finished at the hospital, he is good. I'll be home about 5" Not that day... "Well, the nurse asked the doctors those questions you asked her and got some answers" "Riiiiiiiight...?" "They think Nico will be on high flow next week. A week or two later he will move to our hospital. 2 or 3 weeks after that he should be home after a night back at the tertiary hospital for his hernia operation" I could have danced around the house for hours but I think I just looked at Friend, told her and we both had tears in our eyes. Then I called my mum. (They were due to arrive in a week and I wasn't sure if this news would delay that) It was surreal. Finally we were close enough, clear enough, big enough, well enough to be given some form of timeline. Whether Nico cooperated or not didn't matter, I knew it was just indicators, but that was enough. Not once in the almost 6 months at the hospital would anyone give us any idea of when we might expect anything to happen. Two days later he tried low flow for the first time. I wasn't told about it in advance, the doctors did their rounds, one of the more senior doctors said "I will just talk to the Fellow and see what he thinks" and 10 minutes later another doctor came back and said he was to go on the low flow for up to 8 hours or for as long as he tolerated. He had a nurse from Adult ICU, Heidi, who I took an immediate dislike to. It's really annoying having someone HOVER around you when your breastfeeding, giving you unsolicited advice you don't need. I'd been feeding him for 2 months and only stopped feeding my daughter 4 or 5 months before he was born, I think I might know a thing or two about it. She was on lunch when the doc came back so I had to wait for her return before he could change over. I told her and she got another nurse to show her what to do. He didn't cope well, his oxygen saturation yo-yo'd between 75 and 86% for about 20 minutes. The other nurses told Heidi he was not tolerating it and she just said "Ok... so when do I know that I should take him off." so they spelt it out " The doctors said to take him off if he is not tolerating. He is not tolerating" Heidi "RIght. But how long long do I give him desaturating. His respiratory rate hasn't changed". One nurse was obviously as fed up as I was with her and snapped " He's desating, he's not tolerating it, you don't wait". I looked at the meter and saw that it was not even set to the level the doctors requested but it was too late to ask them to try with it set correctly. He had been low for long enough. From an outsiders' perspective, this might sound weird, like why did I not tell them to sort him out earlier but 75% is not bad per se, cardiac babies are allowed/ expected sit in high 60's permanently if that is right for them, so it was not that he was in danger or struggling, he just wasn't in the parameters they wanted. So he had a few days rest and on Monday they tried again on Low Flow. He did fine. He never went back to High Flow. I still suspect that on the Thurday the meter was not correct all along... I am possibly just being a cynic. |
The beginning of the end of the beginning
| I forgot to chronicle for a while. I was sidetracked by my parents arrival. With Nico's homecoming in mind, a few months ago a fab friend of mine offered to help me make curtains for his room as I was having trouble finding what I wanted in ready-mades. When I say 'help me', I would like to clarify that I know nothing about sewing I tried for 2 semesters over two years at the start of high school when it was mandatory. The only thing I remembered was making an N shape when threading the machine if done correctly. And then, I think found that actually the N shape means it is wrong.. as in if you see an N it means NO. I don't remember. Anyway. We started making the curtains 3 weeks ago on Tuesdays while our kids were in daycare. The 2nd Tuesday (week 23 of NIco's life), while making curtains, phone rings and I assume it is my husband calling after his visit to the hospital. I was right. Usually this conversation goes "Just finished at the hospital, he is good. I'll be home about 5" Not that day... "Well, the nurse asked the doctors those questions you asked her and got some answers" "Riiiiiiiight...?" "They think Nico will be on high flow next week. A week or two later he will move to our hospital. 2 or 3 weeks after that he should be home after a night back at the tertiary hospital for his hernia operation" I could have danced around the house for hours but I think I just looked at Friend, told her and we both had tears in our eyes. Then I called my mum. (They were due to arrive in a week and I wasn't sure if this news would delay that) It was surreal. Finally we were close enough, clear enough, big enough, well enough to be given some form of timeline. Whether Nico cooperated or not didn't matter, I knew it was just indicators, but that was enough. Not once in the almost 6 months at the hospital would anyone give us any idea of when we might expect anything to happen. Two days later he tried low flow for the first time. I wasn't told about it in advance, the doctors did their rounds, one of the more senior doctors said "I will just talk to the Fellow and see what he thinks" and 10 minutes later another doctor came back and said he was to go on the low flow for up to 8 hours or for as long as he tolerated. He had a nurse from Adult ICU, Heidi, who I took an immediate dislike to. It's really annoying having someone HOVER around you when your breastfeeding, giving you unsolicited advice you don't need. I'd been feeding him for 2 months and only stopped feeding my daughter 4 or 5 months before he was born, I think I might know a thing or two about it. She was on lunch when the doc came back so I had to wait for her return before he could change over. I told her and she got another nurse to show her what to do. He didn't cope well, his oxygen saturation yo-yo'd between 75 and 86% for about 20 minutes. The other nurses told Heidi he was not tolerating it and she just said "Ok... so when do I know that I should take him off." so they spelt it out " The doctors said to take him off if he is not tolerating. He is not tolerating" Heidi "RIght. But how long long do I give him desaturating. His respiratory rate hasn't changed". One nurse was obviously as fed up as I was with her and snapped " He's desating, he's not tolerating it, you don't wait". I looked at the meter and saw that it was not even set to the level the doctors requested but it was too late to ask them to try with it set correctly. He had been low for long enough. From an outsiders' perspective, this might sound weird, like why did I not tell them to sort him out earlier but 75% is not bad per se, cardiac babies are allowed/ expected sit in high 60's permanently if that is right for them, so it was not that he was in danger or struggling, he just wasn't in the parameters they wanted. So he had a few days rest and on Monday they tried again on Low Flow. He did fine. He never went back to High Flow. I still suspect that on the Thurday the meter was not correct all along... I am possibly just being a cynic. |
6 months...
| Nico is 6 months old. SIX MONTHS! When Brooklyn was 6 months, she had 4 or 6 teeth, she had a passport, she had been to NZ and the Gold Coast and was about to go to Europe. She'd been out for coffees and dinners, to beaches and parks. She'd stroked cats, rabbits and dogs and tasted pumpkin, apple and no doubt grass and dirt. She'd stayed in a hotel, at friends with us, at her grandparents. Nico has been to Bay 8, Bay 5, Bay 4, Bay 3 and now: BAY ONE : all within the 150 square metres that make up NICU. He has been in an isolette and 3 open cots. He has ingested milk, pentivite, ferrous, sodium, calcium, hydro, spiro, erythromycin, at least 4 different antibiotics. He's had one operation and is being booked in for a second to repair his hernia this week. He has been on 4 different forms of respiratory support and had IV lines in his arms, hands, legs, feet and scalp. He's been looked after by 30 people at a minimum. I can't really say whether it has felt like 6 months. It feels like forever. I don't remember a time before this crazy life of scheduling in babysitters for my daughter and driving hundered of kilometres a week to see my son. Crazy has become the norm. In saying that, when I write "it's been 6 months" and "Nico is 6 months old" it sounds ridiculous that it could possibly have been so long. Reminders are right in front of my nose though. Outside the NICU window is the 6 storey car park; a crevasse when we first arrived and we were assured we would not see finished. We put clocks forward in spring and we've put them back in autumn : visits after 7pm are done in the dark again. His weight flashes on the scales :4.6kg ... there never used to a number in front of that decimal point. A rubbish sized bag of clothes overflows on the nursing chair in his room, full of clothes he no longer fits. Brooklyn could barely copy us saying his name and had about 10 words in her vocab when he was born, now she says "Sit here. See Kiko photos" and "Kiko cuddles,happy now" I'm now the one recieving those "WIsh we were well enough to be in that Bay with you" glances as parents from further down the bays walk past, instead of giving them So in terms of happenings this week, the biggest is that he moved up to the top bay, Bay One and is certainly on the home stretch. Could still be 6 to 8 weeks away as his oxygen increased after a few days, he is likely getting a bit tired. It's great to be in Special Care instead of NICU but the level of care feels ... less caring. I guess they are more used to the sort term patients. I got REALLY annoyed TWICE tat Nico was given formula in a bottle against my wishes AND on top of this: there was EBM expired in the fridge. If they really had to give him bottles, even though he was only meant to have 4 per day, they could have at least used the EBM. I have supply issues as it is and the idea of tipping half a days worth was enough to send me into a fuming rage followed by tears. Thankfully we saved it by putting it in the freezer since it was only a few hours over their 2 day limit. Nothing else of any major significance. Just growing and feeding and the odd smile thrown in for good measure |
6 months...
| Nico is 6 months old. SIX MONTHS! When Brooklyn was 6 months, she had 4 or 6 teeth, she had a passport, she had been to NZ and the Gold Coast and was about to go to Europe. She'd been out for coffees and dinners, to beaches and parks. She'd stroked cats, rabbits and dogs and tasted pumpkin, apple and no doubt grass and dirt. She'd stayed in a hotel, at friends with us, at her grandparents. Nico has been to Bay 8, Bay 5, Bay 4, Bay 3 and now: BAY ONE : all within the 150 square metres that make up NICU. He has been in an isolette and 3 open cots. He has ingested milk, pentivite, ferrous, sodium, calcium, hydro, spiro, erythromycin, at least 4 different antibiotics. He's had one operation and is being booked in for a second to repair his hernia this week. He has been on 4 different forms of respiratory support and had IV lines in his arms, hands, legs, feet and scalp. He's been looked after by 30 people at a minimum. I can't really say whether it has felt like 6 months. It feels like forever. I don't remember a time before this crazy life of scheduling in babysitters for my daughter and driving hundered of kilometres a week to see my son. Crazy has become the norm. In saying that, when I write "it's been 6 months" and "Nico is 6 months old" it sounds ridiculous that it could possibly have been so long. Reminders are right in front of my nose though. Outside the NICU window is the 6 storey car park; a crevasse when we first arrived and we were assured we would not see finished. We put clocks forward in spring and we've put them back in autumn : visits after 7pm are done in the dark again. His weight flashes on the scales :4.6kg ... there never used to a number in front of that decimal point. A rubbish sized bag of clothes overflows on the nursing chair in his room, full of clothes he no longer fits. Brooklyn could barely copy us saying his name and had about 10 words in her vocab when he was born, now she says "Sit here. See Kiko photos" and "Kiko cuddles,happy now" I'm now the one recieving those "WIsh we were well enough to be in that Bay with you" glances as parents from further down the bays walk past, instead of giving them So in terms of happenings this week, the biggest is that he moved up to the top bay, Bay One and is certainly on the home stretch. Could still be 6 to 8 weeks away as his oxygen increased after a few days, he is likely getting a bit tired. It's great to be in Special Care instead of NICU but the level of care feels ... less caring. I guess they are more used to the sort term patients. I got REALLY annoyed TWICE tat Nico was given formula in a bottle against my wishes AND on top of this: there was EBM expired in the fridge. If they really had to give him bottles, even though he was only meant to have 4 per day, they could have at least used the EBM. I have supply issues as it is and the idea of tipping half a days worth was enough to send me into a fuming rage followed by tears. Thankfully we saved it by putting it in the freezer since it was only a few hours over their 2 day limit. Nothing else of any major significance. Just growing and feeding and the odd smile thrown in for good measure |
Thursday, March 18, 2010
Quality time with my special girl
Now that life is a bit of a logistical nightmare, I am understanding the meaning of "Quality Time". It's not that I didn't believe in it or understand it... I just thought it was for the dad's who didn't get home from work til their child's bed time.
Now I am the Invsible Mum. My time with Brooklyn has been cut down to maybe 1/4 of what it was. Not by 1/4. To 1/4. I wrote out a mini schedule with 2 times slots per day: AM and PM and 3 activities "Work" "Nico" and "Brooklyn" for the nurses so they knew when to expect me. Work got 3 slots, Brooklyn got 3.5 (in just 3 days), Nico got 5.5 and Saturday was left blank. Seeing this on paper, although completely skewed as of course I spend time with her each day, made me incredible sad. I wanted to cry. My little girl, my amazing little girl, was going through one of the funniest ages in her lifetime, and I was missing chunks of it.
Through this little exercise, I found Thursday's has become Brooklyn's day. It is the only day I have to devote the whole day to her. Even then I miss the start of it. I go to the hospital at 6am, feed Nico at 8 and get home by 9.30am. On Wednesday night I had our day all planned to makes sure that the time we did get was all about her.. not me or the house (although we did do a few groceries but the trip was to get her some fairy wings)
We started off the day outside where she had been helping her dad move some stones. We filled buckets, ran along the side of the house and searched for snails... something either her Nana or cousin taught her...
With fairies being her latest obsession, I was ordered inside to watch The Fairies which I had recorded for her the day before. We did the Boogie Woogie Sand Dance (sha-a-ake your bo-ot-tom), helped Harmony and Rhapsody write a letter and scoffed at the flying boat.
Just in time for lunch we cooked some muffins. She shook in the ingredients, mixed it up and most importantly, licked the spoon and bowl!!!
She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)
She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)After a nap we went to the shops and bought some fairy wings and playdough equipment. This resulted in a little fairy sitting at Brooklyn's table playing with playdough for the afternoon. Only after another trip to the beach in the flying boat with Harmony and Rhapsody though. With her wings and wand, obviously. It wan't until we put this on that she pointed out that she didn't have the "eyes" like the other fairies. Oh well. Thursday will come again next week!
Quality time with my special girl
Now that life is a bit of a logistical nightmare, I am understanding the meaning of "Quality Time". It's not that I didn't believe in it or understand it... I just thought it was for the dad's who didn't get home from work til their child's bed time.
Now I am the Invsible Mum. My time with Brooklyn has been cut down to maybe 1/4 of what it was. Not by 1/4. To 1/4. I wrote out a mini schedule with 2 times slots per day: AM and PM and 3 activities "Work" "Nico" and "Brooklyn" for the nurses so they knew when to expect me. Work got 3 slots, Brooklyn got 3.5 (in just 3 days), Nico got 5.5 and Saturday was left blank. Seeing this on paper, although completely skewed as of course I spend time with her each day, made me incredible sad. I wanted to cry. My little girl, my amazing little girl, was going through one of the funniest ages in her lifetime, and I was missing chunks of it.
Through this little exercise, I found Thursday's has become Brooklyn's day. It is the only day I have to devote the whole day to her. Even then I miss the start of it. I go to the hospital at 6am, feed Nico at 8 and get home by 9.30am. On Wednesday night I had our day all planned to makes sure that the time we did get was all about her.. not me or the house (although we did do a few groceries but the trip was to get her some fairy wings)
We started off the day outside where she had been helping her dad move some stones. We filled buckets, ran along the side of the house and searched for snails... something either her Nana or cousin taught her...
With fairies being her latest obsession, I was ordered inside to watch The Fairies which I had recorded for her the day before. We did the Boogie Woogie Sand Dance (sha-a-ake your bo-ot-tom), helped Harmony and Rhapsody write a letter and scoffed at the flying boat.
Just in time for lunch we cooked some muffins. She shook in the ingredients, mixed it up and most importantly, licked the spoon and bowl!!! She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)
She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)After a nap we went to the shops and bought some fairy wings and playdough equipment. This resulted in a little fairy sitting at Brooklyn's table playing with playdough for the afternoon. Only after another trip to the beach in the flying boat with Harmony and Rhapsody though. With her wings and wand, obviously. It wan't until we put this on that she pointed out that she didn't have the "eyes" like the other fairies. Oh well. Thursday will come again next week!
Monday, March 15, 2010
Going with the flow
| So this time last week, high flow had been written into the plan but had not started.... now it's in full swing. Monday morning was to be Nico's first attempt at this and I arrived at the hospital on the biggest high. Brimming over with excitement, I burst into the bay and told the nurse Me"Hooray, high flow today for 2 hours!!". Nurse "Um, no. It says you can when feeding if needed" Me "Yesterday at the round the doctors were talking about it and said 2 hours a day" Nurse "No, it has high flow for feeding if needed, it has said that for days" Me "I know that, but we haven't been doing it because it wasn't needed, he can feed on CPAP but the doctors want him on 2 hours a day now if tolerating" Nurse "No, that's not what is written here" I was nearly going to grab a pen and write it on the damn plan myself, I was furious. Thankfully the rounds entered Nico's bay just as we were about to feed and I knew they would back me up. It was not Nico's assigned doctor but I like him and he does know Nico from a while back. My heart sank a wee bit when he said "I don't see the need to change anything on a public holiday" (ummm holiday? This is medicine not a corporate office... there is no holiday!!) but thankfully he continued with "But i strongly recommend trying him on high flow while you feed and hold him today so we can see how he goes" Hurrah! So out comes the high flow machine, off come the giant CPAP prongs and hat/ headband and on goes the tiny (in comparison) cannula of high flow. He looked so good!! Even though he still had all the velcro tape on his cheeks to keep it all in place, you could see so much more of him. He had a good feed and a nice long cuddle and did so well.. I was overjoyed. It was another sign that he really would come home. The next day they increased his high flow time to 2 hours twice a day and upped him to 2-4 suck feeds . He has his feeds 3 hourly so that means up to half of his feeds don't need to be tubed now!. It seemed to make feeding so much easier, but maybe he was just getting the hang of it. I was a little concerned about the bottle feeding, as I think I mentioned in previous blogs, but I had to be pragmatic and there was no way I could be there for 4 feeds a day and I did not want to hinder his progress by limiting to 1 or 2 per day. We had established feeding pretty well so he would be getting 1 or 2 bottles a day. The day after his first bottle, he all but refused to feed. I was a bit anxious that he had already goten his preference to the bottle but this was quickly appeased the next day when we had a 45 minute text book feed I actually became really happy with this development when I got to watch Geoff give him a bottle. I felt like they don't really get much 'special' time together. I know every moment is special but I mean Geoff doing something with Nico other than nappy changes and baths. This was just for them together. I have my feeding, he has his bottles. Perfect. Another day or two went by and again they increased his high flow to 2 x 4 hours and the next day: 2 x 6 hours a day!!! Half his day! He has had a few of his little episodes but nothing too major. The worst being this morning and I had a little panic at hearing his oxygen requirement went from 26-28% up to 40% but when I go there an hour later, it was back down to 28%. I have a feeling that it was due to having a nurse who didn't know him and she just increased it every time he had a little desaturation. My time management skills are being tested (and failing) but we are managing... it really is geting harder and harder to leave though. He is just so alert when he's awake And yesterday... maybe, just maybe... he smiled. |
Going with the flow
| So this time last week, high flow had been written into the plan but had not started.... now it's in full swing. Monday morning was to be Nico's first attempt at this and I arrived at the hospital on the biggest high. Brimming over with excitement, I burst into the bay and told the nurse Me"Hooray, high flow today for 2 hours!!". Nurse "Um, no. It says you can when feeding if needed" Me "Yesterday at the round the doctors were talking about it and said 2 hours a day" Nurse "No, it has high flow for feeding if needed, it has said that for days" Me "I know that, but we haven't been doing it because it wasn't needed, he can feed on CPAP but the doctors want him on 2 hours a day now if tolerating" Nurse "No, that's not what is written here" I was nearly going to grab a pen and write it on the damn plan myself, I was furious. Thankfully the rounds entered Nico's bay just as we were about to feed and I knew they would back me up. It was not Nico's assigned doctor but I like him and he does know Nico from a while back. My heart sank a wee bit when he said "I don't see the need to change anything on a public holiday" (ummm holiday? This is medicine not a corporate office... there is no holiday!!) but thankfully he continued with "But i strongly recommend trying him on high flow while you feed and hold him today so we can see how he goes" Hurrah! So out comes the high flow machine, off come the giant CPAP prongs and hat/ headband and on goes the tiny (in comparison) cannula of high flow. He looked so good!! Even though he still had all the velcro tape on his cheeks to keep it all in place, you could see so much more of him. He had a good feed and a nice long cuddle and did so well.. I was overjoyed. It was another sign that he really would come home. The next day they increased his high flow time to 2 hours twice a day and upped him to 2-4 suck feeds . He has his feeds 3 hourly so that means up to half of his feeds don't need to be tubed now!. It seemed to make feeding so much easier, but maybe he was just getting the hang of it. I was a little concerned about the bottle feeding, as I think I mentioned in previous blogs, but I had to be pragmatic and there was no way I could be there for 4 feeds a day and I did not want to hinder his progress by limiting to 1 or 2 per day. We had established feeding pretty well so he would be getting 1 or 2 bottles a day. The day after his first bottle, he all but refused to feed. I was a bit anxious that he had already goten his preference to the bottle but this was quickly appeased the next day when we had a 45 minute text book feed I actually became really happy with this development when I got to watch Geoff give him a bottle. I felt like they don't really get much 'special' time together. I know every moment is special but I mean Geoff doing something with Nico other than nappy changes and baths. This was just for them together. I have my feeding, he has his bottles. Perfect. Another day or two went by and again they increased his high flow to 2 x 4 hours and the next day: 2 x 6 hours a day!!! Half his day! He has had a few of his little episodes but nothing too major. The worst being this morning and I had a little panic at hearing his oxygen requirement went from 26-28% up to 40% but when I go there an hour later, it was back down to 28%. I have a feeling that it was due to having a nurse who didn't know him and she just increased it every time he had a little desaturation. My time management skills are being tested (and failing) but we are managing... it really is geting harder and harder to leave though. He is just so alert when he's awake And yesterday... maybe, just maybe... he smiled. |
Saturday, March 6, 2010
Whisper, whisper...
Hurrah... progress and then some more progress... and progess is also scheduled for tomorrow.
Nico must be over the whole giant prongs of CPAP and has decided he wants to get himself kitted out with something much more flattering and comfortable. So all week, obviously with with this in mind, he got his average oxygen requirement down to 25% (Our goal - "Air" - is 21%) I don't want my blogs to get technical, but: this doesn't mean that once he gets to 21% he'll be a regular bub and CPAP comes off. He still can't do the actual breathing thing without support to keeps his lungs inflated a little. But once in air, it means that his lungs are doing a good job at getting the oxygen to his brain/ blood. It is a step in the right direction for the next phase of assistance: High Flow (followed by Low Flow at which point he may be allowed home with his oxygen tank!)
Nico must be over the whole giant prongs of CPAP and has decided he wants to get himself kitted out with something much more flattering and comfortable. So all week, obviously with with this in mind, he got his average oxygen requirement down to 25% (Our goal - "Air" - is 21%) I don't want my blogs to get technical, but: this doesn't mean that once he gets to 21% he'll be a regular bub and CPAP comes off. He still can't do the actual breathing thing without support to keeps his lungs inflated a little. But once in air, it means that his lungs are doing a good job at getting the oxygen to his brain/ blood. It is a step in the right direction for the next phase of assistance: High Flow (followed by Low Flow at which point he may be allowed home with his oxygen tank!)
In conversation and off the record, one of the nurses said she thought he would be trialled on to High Flow soon. I know the nurses really don't have any say in this kind of thing and it is just guess work but just that little whisper of the words "High Flow" was enough for me. He has taken so long to make any progress on the oxygen front, I was elated. I thought he would never get there... well, ok...not literally. The next day I was told that if he was having trouble latching on for a feed, the doctors were happy to try high flow. He wasn't having trouble so we were advised NOT to go to high flow but again.. just the words were enough.
The same day they started to grade him up from 22ml per hour to 44ml every two hours. His reflux caused him a lot of discomfort so with any luck, feeding him less often would help out there. So every hour they minused a millilitre from one feed and added it to the next. The process took almost 24 hours: 22ml, 24ml, 21ml, 25ml, 20ml, 26ml, 19ml.........3ml, 41ml, 2ml, 42ml, 1ml, 43ml, 0ml, 44ml.
4 days later and he is now on 3 hourly feeds of 67ml! Thankfully that was a bit less of a process, involving 3 feeds at 2.5 hours apart and that was that. Breastfeeds of course are not measured but we guess and watch his behaviour. If he is grumpy, they top him up but that has only been once.
There is a downside to all of this. My life has just become that much more logistically complex. With 1 hour feeding, I could arrive any time and be guaranteed it was almost feeding time and that if he didn't feed first go, I would be there for the next one. Also, he was only needing 20 ml, so as long as I didn't express just before I left home (30/40 minute drive) it was fine. Now I have to be there at one if not two of his feeding times: 7.30 or 10.30am, 1.30, 4.30, 7.30 or 10.30pm.. and if we don't feed... well.. tough. Also since he needs over 60ml, I can't have expressed for the 2.5 hours before I leave home.. so need to take that into account when planning my day AND stick to the time .. precisely. My friend, Toushka, jokingly wanted to make me a schedule to fit in work, Brooklyn, expressing and visits.... not to mention general house/ family/ life stuff ...like eating. I think I might need her to do it.
So he grew and he grew and today when he was weighed he tipped the scales at a fab 3.54 kg. He's got his Fisher Price Rainforest mobile on his cot now and sits up in a feeding cushion a few times a day. The physio also brought him this weird chair that looks like a car seat stripped of its fabric. He needs to get some control and strength his head/neck/torso like a regular baby would from being picked up/ put down all day and sitting in bouncers and swings etc.
Since I am trying to blog chronologically... I finish with the last piece of news we heard today:
Tomorrow:
High flow for up to 2 hours!!!!!!!!!!!!!!!!!!!!!! Woohooo. The time will then increase according to how he behaved the day before ... fingers crossed!!!
Whisper, whisper...
Hurrah... progress and then some more progress... and progess is also scheduled for tomorrow.
Nico must be over the whole giant prongs of CPAP and has decided he wants to get himself kitted out with something much more flattering and comfortable. So all week, obviously with with this in mind, he got his average oxygen requirement down to 25% (Our goal - "Air" - is 21%) I don't want my blogs to get technical, but: this doesn't mean that once he gets to 21% he'll be a regular bub and CPAP comes off. He still can't do the actual breathing thing without support to keeps his lungs inflated a little. But once in air, it means that his lungs are doing a good job at getting the oxygen to his brain/ blood. It is a step in the right direction for the next phase of assistance: High Flow (followed by Low Flow at which point he may be allowed home with his oxygen tank!)
Nico must be over the whole giant prongs of CPAP and has decided he wants to get himself kitted out with something much more flattering and comfortable. So all week, obviously with with this in mind, he got his average oxygen requirement down to 25% (Our goal - "Air" - is 21%) I don't want my blogs to get technical, but: this doesn't mean that once he gets to 21% he'll be a regular bub and CPAP comes off. He still can't do the actual breathing thing without support to keeps his lungs inflated a little. But once in air, it means that his lungs are doing a good job at getting the oxygen to his brain/ blood. It is a step in the right direction for the next phase of assistance: High Flow (followed by Low Flow at which point he may be allowed home with his oxygen tank!)
In conversation and off the record, one of the nurses said she thought he would be trialled on to High Flow soon. I know the nurses really don't have any say in this kind of thing and it is just guess work but just that little whisper of the words "High Flow" was enough for me. He has taken so long to make any progress on the oxygen front, I was elated. I thought he would never get there... well, ok...not literally. The next day I was told that if he was having trouble latching on for a feed, the doctors were happy to try high flow. He wasn't having trouble so we were advised NOT to go to high flow but again.. just the words were enough.
The same day they started to grade him up from 22ml per hour to 44ml every two hours. His reflux caused him a lot of discomfort so with any luck, feeding him less often would help out there. So every hour they minused a millilitre from one feed and added it to the next. The process took almost 24 hours: 22ml, 24ml, 21ml, 25ml, 20ml, 26ml, 19ml.........3ml, 41ml, 2ml, 42ml, 1ml, 43ml, 0ml, 44ml.
4 days later and he is now on 3 hourly feeds of 67ml! Thankfully that was a bit less of a process, involving 3 feeds at 2.5 hours apart and that was that. Breastfeeds of course are not measured but we guess and watch his behaviour. If he is grumpy, they top him up but that has only been once.
There is a downside to all of this. My life has just become that much more logistically complex. With 1 hour feeding, I could arrive any time and be guaranteed it was almost feeding time and that if he didn't feed first go, I would be there for the next one. Also, he was only needing 20 ml, so as long as I didn't express just before I left home (30/40 minute drive) it was fine. Now I have to be there at one if not two of his feeding times: 7.30 or 10.30am, 1.30, 4.30, 7.30 or 10.30pm.. and if we don't feed... well.. tough. Also since he needs over 60ml, I can't have expressed for the 2.5 hours before I leave home.. so need to take that into account when planning my day AND stick to the time .. precisely. My friend, Toushka, jokingly wanted to make me a schedule to fit in work, Brooklyn, expressing and visits.... not to mention general house/ family/ life stuff ...like eating. I think I might need her to do it.
So he grew and he grew and today when he was weighed he tipped the scales at a fab 3.54 kg. He's got his Fisher Price Rainforest mobile on his cot now and sits up in a feeding cushion a few times a day. The physio also brought him this weird chair that looks like a car seat stripped of its fabric. He needs to get some control and strength his head/neck/torso like a regular baby would from being picked up/ put down all day and sitting in bouncers and swings etc.
Since I am trying to blog chronologically... I finish with the last piece of news we heard today:
Tomorrow:
High flow for up to 2 hours!!!!!!!!!!!!!!!!!!!!!! Woohooo. The time will then increase according to how he behaved the day before ... fingers crossed!!!
Monday, February 22, 2010
4 times birth weight in 4 months!
This week was a fairly quiet one on the Nico front, bar one episode... the most important thing of the week is that we have definately mastered feeding. As long as he is not asleep or too agitated (by either his hernia or reflux... who knows), we have no problem getting him to feed at all. He is so content feeding, I still get a natural high just watching him and his monitors.
He is spending so much more time awake now. It is a bit of a double edged sword. I love that he is so awake and alert... he really studies your face and this surroundings. He loves to look at the activty bar stretched across his cot with its bright coloured toys, I can't wait until he actually purposefully reaches for them but I have no memory at what age this usually happens. I made a little video of him to share on Facebook. My parents haven't seen him since he was about 7 weeks old so it made their day to see him looking and acting like such a regular little newborn, just like he would have been this month had he not been born early... minus the prongs.
(Skip this paragraph if easily upset. I want this to remain in my head so have described it as vividly as possible from my POV)
On Friday... yes the same day as last week... he had another "dusky episode" in my arms. I had taken him out of his cot.. unfortunately when he was fast asleep (I only had an hour there as I had Brooklyn with me) His monitor was showing a "?" where it usually displays his saturations. This happens fairly often if it is calibrating or can't get a good trace so I just watched him. He was pretty upset, and I felt so bad for disturbing him. Then he stopped crying, Usually mothers breathe a sigh of relief but not me. He was grey. I am not a morbid person, and I hate to give horrible mental pictures but unfortunately the colour dragged my mind back 10 years to when I lost my grandfather and hadn't thought of it or seen it since. It was really eerie. Worse than the week before.. he was a purply blue then. This was just grey. He didn't go entirely motionless and he was still flicking glances at me albeit blankly.
Surprisingly, I didn't crack this time. I held him as two nurses prepared the Neopuff for resuss. They took him from me, put him in his cot, took off his prongs, pulled off his tapes and removed his feeding tube. He was given manual puffs of 100% oxygen about 15 times in the space of 1 minute and this pulled him back up. He was pushing on the nurses hand to get it off him. She had to hold it there giving the oxygen - but no breaths - for a further 10 minutes while they cut new tapes for his prongs and retubed him. Maybe if Brooklyn hadn't have been there, I would have freaked out more again but there is that invisible force that makes you a stronger person when your child is around. Like I don't scream at the sight of a spider if she is around. I avoid the room I saw it in, but I don't scream.
One great thing that happened this week though: Nico reached 3 kgs!! It took me by surprise as he was putting on about 150 grams every 2 days. Sometimes 180 grams. He is so much like a newborn now, it amazes me. I know it sounds logical... he was always going to grow and he WAS due 3 weeks ago but it still amazes me. I keep telling people how he is "like a real baby" and then I laugh at my stupidity... he isn't LIKE a real baby, he just IS one!
He is spending so much more time awake now. It is a bit of a double edged sword. I love that he is so awake and alert... he really studies your face and this surroundings. He loves to look at the activty bar stretched across his cot with its bright coloured toys, I can't wait until he actually purposefully reaches for them but I have no memory at what age this usually happens. I made a little video of him to share on Facebook. My parents haven't seen him since he was about 7 weeks old so it made their day to see him looking and acting like such a regular little newborn, just like he would have been this month had he not been born early... minus the prongs.
(Skip this paragraph if easily upset. I want this to remain in my head so have described it as vividly as possible from my POV)
On Friday... yes the same day as last week... he had another "dusky episode" in my arms. I had taken him out of his cot.. unfortunately when he was fast asleep (I only had an hour there as I had Brooklyn with me) His monitor was showing a "?" where it usually displays his saturations. This happens fairly often if it is calibrating or can't get a good trace so I just watched him. He was pretty upset, and I felt so bad for disturbing him. Then he stopped crying, Usually mothers breathe a sigh of relief but not me. He was grey. I am not a morbid person, and I hate to give horrible mental pictures but unfortunately the colour dragged my mind back 10 years to when I lost my grandfather and hadn't thought of it or seen it since. It was really eerie. Worse than the week before.. he was a purply blue then. This was just grey. He didn't go entirely motionless and he was still flicking glances at me albeit blankly.
Surprisingly, I didn't crack this time. I held him as two nurses prepared the Neopuff for resuss. They took him from me, put him in his cot, took off his prongs, pulled off his tapes and removed his feeding tube. He was given manual puffs of 100% oxygen about 15 times in the space of 1 minute and this pulled him back up. He was pushing on the nurses hand to get it off him. She had to hold it there giving the oxygen - but no breaths - for a further 10 minutes while they cut new tapes for his prongs and retubed him. Maybe if Brooklyn hadn't have been there, I would have freaked out more again but there is that invisible force that makes you a stronger person when your child is around. Like I don't scream at the sight of a spider if she is around. I avoid the room I saw it in, but I don't scream.
One great thing that happened this week though: Nico reached 3 kgs!! It took me by surprise as he was putting on about 150 grams every 2 days. Sometimes 180 grams. He is so much like a newborn now, it amazes me. I know it sounds logical... he was always going to grow and he WAS due 3 weeks ago but it still amazes me. I keep telling people how he is "like a real baby" and then I laugh at my stupidity... he isn't LIKE a real baby, he just IS one!
4 times birth weight in 4 months!
This week was a fairly quiet one on the Nico front, bar one episode... the most important thing of the week is that we have definately mastered feeding. As long as he is not asleep or too agitated (by either his hernia or reflux... who knows), we have no problem getting him to feed at all. He is so content feeding, I still get a natural high just watching him and his monitors.
He is spending so much more time awake now. It is a bit of a double edged sword. I love that he is so awake and alert... he really studies your face and this surroundings. He loves to look at the activty bar stretched across his cot with its bright coloured toys, I can't wait until he actually purposefully reaches for them but I have no memory at what age this usually happens. I made a little video of him to share on Facebook. My parents haven't seen him since he was about 7 weeks old so it made their day to see him looking and acting like such a regular little newborn, just like he would have been this month had he not been born early... minus the prongs.
(Skip this paragraph if easily upset. I want this to remain in my head so have described it as vividly as possible from my POV)
On Friday... yes the same day as last week... he had another "dusky episode" in my arms. I had taken him out of his cot.. unfortunately when he was fast asleep (I only had an hour there as I had Brooklyn with me) His monitor was showing a "?" where it usually displays his saturations. This happens fairly often if it is calibrating or can't get a good trace so I just watched him. He was pretty upset, and I felt so bad for disturbing him. Then he stopped crying, Usually mothers breathe a sigh of relief but not me. He was grey. I am not a morbid person, and I hate to give horrible mental pictures but unfortunately the colour dragged my mind back 10 years to when I lost my grandfather and hadn't thought of it or seen it since. It was really eerie. Worse than the week before.. he was a purply blue then. This was just grey. He didn't go entirely motionless and he was still flicking glances at me albeit blankly.
Surprisingly, I didn't crack this time. I held him as two nurses prepared the Neopuff for resuss. They took him from me, put him in his cot, took off his prongs, pulled off his tapes and removed his feeding tube. He was given manual puffs of 100% oxygen about 15 times in the space of 1 minute and this pulled him back up. He was pushing on the nurses hand to get it off him. She had to hold it there giving the oxygen - but no breaths - for a further 10 minutes while they cut new tapes for his prongs and retubed him. Maybe if Brooklyn hadn't have been there, I would have freaked out more again but there is that invisible force that makes you a stronger person when your child is around. Like I don't scream at the sight of a spider if she is around. I avoid the room I saw it in, but I don't scream.
One great thing that happened this week though: Nico reached 3 kgs!! It took me by surprise as he was putting on about 150 grams every 2 days. Sometimes 180 grams. He is so much like a newborn now, it amazes me. I know it sounds logical... he was always going to grow and he WAS due 3 weeks ago but it still amazes me. I keep telling people how he is "like a real baby" and then I laugh at my stupidity... he isn't LIKE a real baby, he just IS one!
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