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.

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.

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.

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

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

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