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
I am with you - i think he needs to be either in a group ward or somewhere with a central nurses station....do they have a monitor in there so someone can hear him at all times? I think you have to push for him to be with others. I guess it depends how much longer until you can take him home....does the hospitial have a volunteer program where you may be allocated a few helpers who could come and sit with him and chat to him etc...sending you lots of good wishes....
ReplyDelete