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

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

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