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

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.

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

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.

Finally Due!

We are finally getting up to date on the blog front. Nothing note worthy happened mid/late January... Nico's oxygen requirements yo-yo'd slowly up and down but nothing too drastic. He seemed to plateau. The only thing we do know about Nico's personality is that he will not be rushed, so we sat patiently and kept getting our reassurances from that doctors that all was fine. On Jan 19 he received a certificate and a cot quilt to mark his 100th day in the NICU. The nurse/ admin clerk showing me all the hand made quilts, telling me about the group that makes them said "and at 200 days, you get a full blanket". I didn't mean to but I must have given her a death stare because her face fell and she quickly said "Not that you'll be here then, I am sure..." I DON"T WANT A BLANKET! I CAN BUY A BLANKET! In saying that, it is a really cute quilt he got. I was very aware of how many more types of breathing support methods he would have to go through and the fact that he was officially still on conventional ventilation, albeit through prongs, was wearing me down. A few days after the 200-day-blanket conversation with the admin clerk/ nurse, I asked one of Nico's regular nurses whether she thought we would be here long enough to get a blanket. She looked at me in a serious but sweet way and said "Mmmm, maybe. But not in this Bay at least" Pfff. Whoever said honesty was the best policy may have needed to test the theory in multiple situations. Spirits were low. I knew she had to prepare me and not give any false hopes or expectations, but that knowledge wasn't enough to get rid of the feeling that I had just swallowed rocks. The heavy stomach lingered for days. About a week ago, I went in and found a CHANGE had been made!! His breathing rate had been reduced from being given 50 automatic breaths to 30, meaning he is given more opportunity to take his own breaths over the top of the ventilation. The next day the pressures decreased, not to a low pressure but still a step in the right direction. My early morning check in on Saturday 30 January nearly had me bouncing of the walls. "We actually changed him to CPAP at 4am and his oxygen requirement hasn't really increased, he's good" I did some silent dancing around the house, Saturdays are my husband's turn to sleep in. CPAP basically holds the lungs open a little, to make taking breaths less tiring for baby. If his lungs were to deflate fully, like ours can, it would be hard for him to get them back up. It was explained to to us like how blowing up a new balloon is harder than one with a small breath in it already. This way, the hard work is already done. This was not the only big step the day held for the wee man. When I arrived to see him, the nurse was holding up a syringe of milk for him... I think I neglected to mention this part of Nico's battle previously. He has/ had chronic reflux so to minimise this, the doctors replaced the tube to his stomach with one that the weaved through his stomach, basically straight to the intestines I suppose. They then used a drip to give him a continuous feed. The sight of the nurse holding a syringe meant one thing: no more drip feeding! No drip feeding meant no bypassing the stomach. Nico was back to "regular" feeds of 16 mls on the hour, every hour. He seems to have taken very well to his new ventilation and feeding program as he has been much more settled and sleeping a lot better. One theory is that he enjoys feeling full. I also think it must be more comfortable to take your own breath than have it forced into you with all that pressure. Whatever his reason, I am just stoked that nearly 48 hours, he is coping still just fine!

Mini Milestones

Beginning of January, apart from Nico's "episodes", also brought with it some fabulous, tangible progress, or at least token signs interpreted as progress.

• He reached 1.5kg
• He got to wear clothes
• He moved to cot
• He had his first bath

Until 4 months ago, I never would have thought dressing my baby would have been called a milestone. Surely it is a given: have baby, dress baby. Obviously not. I walked into the Bay and saw an open cot squeezed in between Nico and his neighbour ... I thought "Hmm.. obvioulsy tight for space!" which had I thought about it, would have realised was a ridiculous assumption. A NICU is not somewhere you can just squeeze in extra beds. Each station has so much built in equipment, if it was to be full, new babies have to get moved to another hospital. The open cot was for Nico!

I was so excited. Not only would this make touching him and seeing him so much easier, I also knew it meant CLOTHES!! He was in hospital clothes the first day since no one had told me he was moving, but the next day I couldn't wait to fill his litte drawers with his tiny clothes. I couldn't believe he almost fitted shop bought clothes! 00000 were almost the right length although they swam around his middle.

About 4 or 5 days later, I was in for my second surprise "Are we going to bath him today with his weigh?" the nurse asked me. I grinned and told her he had not had a bath before... I thnk she was almost going to say "Well we won't do one, maybe there is a reason" but the ecstatic look on my face must have persuaded her otherwise. I was too scared to actually hold him in the bath so two nurses did that part, and I washed him. Again, who knew this would be a milestone? He did so well...he didn't have any big desat's, he didn't require any higher oxygen and when we put him back in bed, apart from a bit of a grump as I dried him off... he was a happy lil man.

The next bath, 2 days later, I held him and washed him while the nurse held his prings in... and the 3rd bath, I did all on my own. Finally I felt like a parent! Saying that sounds like I hadn't yet bonded with Nico, but that would be far fromthe truth, I had bonded, but felt entirely useless and like a bystander in my baby's life. I'd gotten to change nappies and check temperatures regularly and give him cuddles of course, but nothing had felt quite as "he's really my baby and he WILL come home with us!" as that moment.

I don't like Thursdays

The steroids got weaned down over the course of 7 days, His oxygen requirement had come down well... it wasn't at the perfect 21% but it came down to low 30's, his lowest since the honeymoon first week he was born. One fact about oxygen I forgot in a previous blog is this "Parent's mood and attitude to the world directly correlates to their neonate's oxygen requirements" Low 30's therefore made us see beauty in the weeds growing along the freeway.
I also neglected to mention that Christmas fell during this time. If I were a psychologist, I would think the fact that I neglected to mention it may also be a reflection of my guilt. Our 21 month old got a few presents and a big girl bed etc etc but she didn't get a Christmas. She got breakfast with our new neighbours, a trip to see her brother and some ham for dinner, but she didn't get a Christmas. Ok, she is not even two, she will not be scarred for life, I know this. If I was in a less woe-is-me frame of mind I would even realise that it was never going to be a big traditional Christmas as I was meant to be 7 months pregnant so we were not going to visit our family in NZ, it was always going to be just the 3 of us.

Anyway... boxing day, at 11 weeks old, my husband had his first cuddle and things were looking pretty good. Pop quiz : What happens when roller coasters go up?
New Years Eve. Thursday. We are having a barbecue at our place with 4 couples and their toddlers. I called the hospital for my update and although Nico was fine, the nurse told me that 2 hours ago they had had to resuscitate him! I asked if I should come in but she said that there was really nothing to worry about, he was doing fine until it happened and he was doing fine again now so it must have just been something in his airway. I hung up not feeling fantastic but I also knew I needed a night with good company so I tried on my happy face mask and made it fit. I called the hospital every 1 or 2 hours and got the same report, he was settled and well. To state the obvious, it played on my mind all night and even when we went to the hospital at 10am the next day I couldn't shake it. All i was thinking was "Did he actually die?" I couldn't talk to my husband about that kind of thing, he would tell me to stop being melodramatic and secretly go into a darker place than he (we) already was. It took about 3 days til I just had to tell someone what I was thinking. I chose carefully as the 'wrong' answer (ie the one I was not fishing for) could have made me feel worse, but also not someone who would just go "Of course not honey" just to appease me. I asked a wonderful person via Facebook chat, she had been here on NYE so knew what I was talking about. She took a moment to think, talked to her husband about it and came back with the perfect answer
Q If you get resuscitated, does that mean you died? A: No. It just means you could have if they hadn't intervened.
When we did go in the next day, it was the same nurse looking after him who had been there when it happened. She said it was actually quite amazing because usually they are slow to pick up after something like that but her words were "Once he came back, he opened his eyes and looked at us as if saying 'Umm... excuse me. What are you doing? Back off' and was back to his normal self"
I approached the doctors to ask if I should be concerned and they explained it was 'purely mechanical' and there was no problem with him, he must have just had some secretions blocking an airway.
The fact that that happened then, in hind sight, was the best thing that could have happened. If it didn't happen, there would have been chaos the following Thursday. The whole hospital would have heard a call over the PA "Adult Code Blue, NICU Bay 8. Adult Code Blue, NICU Bay 8" as I had went into cardiac arrest.
After arriving at the hospital at 6am (as I usually do on Tuesdays and Thursdays to have a full day with our almost 2 y/o) I was elated. His oxygen was great, he was really settled and looked fabulous. While his nurse was doing handover at her other crib, I watched his SpO2 (blood oxygen saturation) drop and drop and not climb up like it should. When it got to 50% I motioned quietly for one of the nurses waiting her turn to come over and check him. She looked, said he was ok and we both watched. Next thing his heart rate plummets from his usual 170 to 40 and still dropping. Docs are called and come running. Around a crib that can hardly fit 3 people around it, there are 2 doctors and 4 nurses. Needless to say, I was not in the huddle. I was pacing around reminding myself of last Thursday and how it had been perfectly fine, so fine they hadn't even bothered to call me to tell me it happened, just waited til I rung.
5 -10 minutes later, I was beside him again, he had slightly high oxygen requirements but was settled and behaving normally. When I called that afternoon, his oxygen was even better than it had been pre-episode. The nurse and I concluded that the doctors hypothesis was incorrect, there was no blocked airway, Nico simply did not like Thursdays.

Can we go just go home ... I am so over it!!

So the steriods were given... little Nico and his failing lungs needed to grab on to this opportunity and grab it quickly as there was no Plan B. I was calling every few hours and the oxygen requirements were coming down but oh-so-very-slowly. From all accounts, it was possible that he could show marked progress after 24 hours, by 12 hours he was better than ever and still improving.
I was on the top of the world and decided that I would be starting the nursery. Obviously this had not been something we were in a hurry to do before his early arrival and not something we wanted to do the first few weeks in case it served as a permanent reminder should all not go so well. The rollercoaster was on rapid climb... unfortunately there are rules known by all roller coaster fanatics. There is only one reason for a climb and that is to plummet somewhere twice as fast.
A side effect of steriods, and one we were well aware of, is that it lowers the immune system. Giving Nico steriods when he wasn't even finished antibiotics was not optimum. The next phone call we got was to advise me Nico had a cold and " we have put him in a box." It was pretty obvious that this was not a literal term but it still didn't paint pretty pictures in my mind. A "box" is simply a tape square on the floor around his isolette where nurses and visitors must wear mask and gloves when opening his little portholes. It was more for the other babies in his Bay than for him. The steroids were stopped after 2 days of a 5 day course. A cold was not a big deal but it would be unwise to continue. Another slow 3 weeks ensued and he remained in the box. No cuddles. Barely any skin to skin touch. They did allow me to not wear gloves after a few days but it was limited.
So many times I fantasised on walking in, putting him in a car seat capsule hidden perfectly in an oversized bag and walking out. I was done. I could look after him at home, I had watched them long enough. SpO2 goes down, turn O2 up. Simple. We'd be fine. Then I would reprimand myself for even implying that these absolutely inspirational miracle workers in the NICU had such an easy job.
His oxygen requirements climbed slowly but steadily and I was anxious to get the steriod course done again. He finally got 3 negative test results in a row and the steroids were allowed to be reattempted. 3 days later he was extubated (tubes out) at 10 weeks old and put onto CPAP - basically allowing him to breath on his own by keeping his lungs slightly inflated to make it easier for him, like a balloon that has already had a breath put in. It is given through nasal prongs and therefore much less invasive. The CPAP didn't last long but thankfully they were able to avoid reintubation and be ventilated through the prongs.

10 days went by peacefully...

The worlds longest rollercoaster begins

The change to HFO ventilation felt like a huge, horrible step backwards... a sign things were not going well. Then came the next hit, knocking our spirits for 6 - the heart duct had to be surgically closed. Our little man, not even a kilo in weight, was having an operation. This time I didn't need to be prompted to ask questions. I had a million of them. How often does this op get done? What are the risks and side effects? What will they do? Could it not work? What if they didn't do it?

The PDA ligation was one of the most common operations on prem babies and involved keyhole surgery to put a little clip on the duct. It was as risk free as any operation could be and had no side effects. If I had have gone with my heart, I would have been an emotional wreck, so I put on my pragmatist hat and sucked it in. I sent Geoff along on the morning of the operation to sign the consent forms. There was no way I could go in today, all I would have thought as I looked at his tiny face would have been "Is this the last time...?"

I pottered around home playing with Brooklyn (20 months) watching the clock, waiting for the phone to ring... it didn't ring til 3 or 4 in the afternoon. Success, he did well but I was advised - for my own sanity - to wait an hour or 2 for him to really settle and not need so much monitoring. I was also warned he had a 'drain' in his side as there was a leak in his lung which would close on its own but the leaking air had to be diverted for obvious reasons.

From weeks 4 to 7 things were fairly slow, his oxygen requirements were up and down and his saturations were swinging all over the place still. There was an attempt to change him to regular ventilation again but it failed. He had several infections and was on and off antibiotics so often I couldn not keep up.

The 'novelty' had worn off and I was ready to walk in there, pack him into a car seat and take him home, I was so over it. The frustration was driving me insane. I had really thought that in 7 weeks we would have seen some progress but apart from weight gain... nothing. We had a family meeting with the doctors and I expressed my concerns. They assured me it was common and it was not neccesarily a bad sign. We talked about steroids and they said once the antibiotics had finished, if were happy to start, they would commence. The aim was to get his lungs stong enough to extubate (take out tubes) and have him on CPAP which is a form of nasal ventilation.

Side swiped once again, we got a call at 7pm, just 5 hours after the meeting, saying Nico had been in 100% oxygen and still not coping for the last 2 hours. They were starting the steroids immediately as an emergency intervention. There went another night's sleep.

Going home without my baby

The previous blogs were all written 3.5 months ago, when I came home from hospital and our son remained. I did not sleep more than 3 hours a night for 3 nights so stayed up and wrote it as therapy. It worked.

Now to get up to speed... I will likely miss a lot but I hope I can remember most things since I am doing this for myself so in years to come, I can remember how far we have come

Seeing Nico for the first time since delivery was a mix of emotions. I actually felt that I was going to pass out. I am not sure whether it was from being overcome by Nico's tiny little body covered in foil, the NICU environment (my dad describes it as walking into a space ship) or simply from getting up and having a shower less than an hour after delivery, cold corridor and then into the hot NICU bay.

He was in an open crib with a foil blanket (see previous post picture). A tube down his throat for ventilation, a line in his belly button for blood pressure I think, two IV lines, a sat probe around his foot, 3 pads on his chest for heart and breathing monitoring and possibly a tube down his nose for feeds but that may have been the next day or 2. His skin was transluscent and had no fat underneath making him quite a frightening dark red colour. I immediately became grateful for the time I had to ask all my questions before birth so it was not such a huge shock. I clearly remembered feeling so wrong asking "What will he look like? Like what do we need to be prepared for?" before he was born, as if I was worried he would be deformed or something. I was discharged 36 hours after Nico's birth. I was glad to go in some ways. After nearly a month, my own bed and real food was my idea of heaven. I hated leaving without my litle man though. It just happened that we went down the lift with a couple taking their baby home... and a pregnant women coming in the door as we left. I felt a bit jealous but I thought it would be worse. I had 2 friends due to give birth within the same week as me so it was nice to know I wouldn't crumble at the sight. And so began the transition to our new home/hospital life. The first few weeks I had the same emotions every visit. Anger as I arrived. Parents should not have to "visit" their newborn! Fear as I walked through the hospital. What if they tell me he is in a bad way Anxiety as I got to the door of his bay. Would I see 10 doctors swarming around him Intense happiness seeing my little man just fine, sleeping soundly in his isolette The first week was fabulous. He did so well. He dropped the standard 10% of weight (down to 640g!!) and although not breathing himself, was not needing much extra oxygen. The world revolves around oxygen requirements in this land and the lower the better. He had a Grade 2 bleed on the brain, this was fine and would likely resolve itself. He also had a duct to his heart that hadn't closed, again, this would probably resolve itself in time. Things you learn quickly about oxygen in NICU Oxygen saturation (SpO2) should be between 86-94% for bubs under 36 weeks SpO2 quickly tells you if you baby is 'happy' or not. High=happy, low=not SpO2 being at 100% for too long can cause blindness for Sp02 being low (less than 75 ish %) for a long period will cause brain damage The aim is to get oxygen requirement to 21%, air. High oxygen requirements are not good, means lungs not doing well Nappies were changed 6 hourly along with taking his temperature. Meds were given at their various intervals. We felt useless at first but then Geoff changed his nappy at 3 days old.. I was more hesitant and waited til day 6. Feeds started after a few days at 1 ml per hour. At about a week old we got a call at 10pm telling us he was not really coping on the standard ventilation and had to be changed to a High Frequency Oscillator. HFO. I just said "Ok...", hung up and wondered what it all meant. I didn't think to ask any questions and the next morning the nurse laughed and told me the doctor thought I must have been a bit bewildered since I didn't say much. The machine made his chest, and therefore his whole body, shake as it gave him 900 breaths per minute. Not a typo. 900. It also made a constant rattling noise. It was not until seeing him that I understood why they called. Not for permission but to stop parental heart attacks. Note to self: when hospitals call to tell you stuff, ask questions.

My miracle arrives (Birth story, too much information!!)

When we got there they told us they would organise the paeds to speak to us again and then start. I was thankful that they took hours as I just was not ready. Not that I would ever be. We talked to the paeds about what to expect when bub was born in terms of what would the room be doing. How many people, what noises etc. I did not want to be stressing that there were suddenly 10 people in the room and think that meant it was all going wrong. I asked if we should expect a scream (No) and how soon he would be whisked out of the room. I told anyone who would listen that I wanted an epidual ASAP as although I had a good labour with Brooklyn, it was only due to the epidural. The induction made me vomit between every 2 or 3 contractions and I did not want to add that to the stress. The anaesitist (sp?) refused to do it as my infection meant the risks were too high. Obviously I didn't want one either once he said that, but we agreed if my temp came down for a significant time, the antibiotics were woorking and I could have one. I felt as ready as ever and told the midwife to get things going.

About 5 the drip was started. At 7 we watched Home and Away...then Highway Patrol until we realised we were missing Top Gear. I am sure the midwife thought we were nuts. I just needed to pretend this was a regular night in hospital. At 8.30 she said "Well, nothings happened yet so I think you should not be expecting this bub tonight, this is going to take a while" 10 minutes later the TV was off and by 9pm I asked if we could now call it Established Labour. I went from nothing but slight tightenings to 2 minute contractions within that 30 minutes. I lay on the bed for the first 20 or so then whilst up for a toilet break, I found I much prefered standing. They were now a minute apart at 9.30pm. Standing became rocking, with DH pushing against my lower back. I was pretty happy with how it was all going and with a temp of 38.3 the epi was not an option anyway... little did I know what was about to come and how silly I had been to think I may still ask for one later in the night/ morning. After about 10 more minutes standing, I was over it. "Can I get swiss ball?" and I started rocking over that. I think it was only about 5 contractions on the ball at 30 second intervals until I said "Bucket!! I am going to be sick" and I was - In a voice I wouldn't recognise I said "There is something there" and threw up again The midwifed yelled at Geoff to hit the call button and told me there was a leg out. I tried not to vomit again as I knew it was forcing him out but I had to one more time. By then the 8 docs were in the room and telling me I needed to roll to my back. I refused. I wanted to, I just could not bring myself to move. They let me stay for a few more minutes but then said I HAD to get to the bed. Geoff and a doc pretty much picked me up and I somehow got to the edge of the bed. I had been and continued making my wild animal noises. I was insanely loud... but even at the time I was thinking "why are you making these sounds and what's with the volume... this is really not so bad" Next thing I know, I am shaking uncontrollably, not shivering, I mean full on almost Grand Mal seizure type shaking and listening to the machine that was ventilating my son. It was 10.15pm... less than 2 hours ago, I had been watching Jay Leno race around an airport runway. The shaking lasted a good 15 minutes. Geoff says he has never seen anything like it. They covered me in 2 warmed blankets but I just couldn't stop. I could see him flicking glances to where the docs were and then he got to go over and cut the cord... he came back looking so bewildered I wasn't sure what to think. I could tell he was absolutely overjoyed but petrified at the same time ... trying to contain his happiness incase it all went pear shaped, without looking like that's what he was doing . Nico got wheeled over and I saw this perfectly formed but tiny human with deep dark red skin. He was 710 grams, 32 cm. That crazy feeling of instant love washed over me for the 2nd time and I just got this sense that all was going to work out. I don't know what that means, but I know we will get there and life will be 'normal' again one day. All I can do is hope and pray that 'normal' means Mum and Dad watching their 2 kids playing at the park, taking holidays, fighting, performing skits to the family, making a mess...

The awful lead up to my marvelous Miracle

At midnight I call Geoff and tell him. His voice broke in disbelief "Ooh you are kidding?" and he made the journey in to the hospital. The doc did a scan a few hours later and the news was a bit better. I was not as dilated s he thought as my waters were 'bulging' and made an hourglass shape so in the spec exam, he was not actually seeing my cervix like he thought. Doc advised it would still be a while, days... maybe a week. Geoff slept in a bean bag next to me in the labour ward 'holding room' that night and I was moved to the ward the next day. They put me in a room with 3 new mothers. It was my lowest day and I had a hissy fit at every midwife who walked past me to get me the hell out of that room as it was just not fair. One told me it was just the way public hospitals were. Another asked if I was bothered by the noise. Did they not know what I had just been told and could they not imagine what it was like hearing all the congratulations when you think you have to prepare yourself for the death of a soon to be born child? I didn't get moved for 24 hours and I knew it wasn't their fault. I just wanted something to be angry about and I knew I had a legitimate reason there so I took advantage of it to release all I was feeling. (You can't just have a meltdown coz you're going into super prem labour you know! ) I called my Mum and Dad and they were on the next flight over from NZ, just 2 weeks after leaving. The paed's came and talked to us about stats and outcomes which was really good. The stats and outcomes were crappy, but at least we felt informed. The doctors told us that before 26 weeks, it is our choice whether they resuss the baby. We told them we were in the middle of the continuum - if the doctors believed he had a chance, they were to do what they could. If not, we did not want to prolong his pain. We started feeling more positive and all the docs were talking like I could still go for weeks as long as I got no infection. All was rosy again and in my new ward room, the waiting game began again. I had had my 2 steriod injections to help his lungs. They hurt like nothing else but I would have done it every day for months if I had to. It felt like someone took a big stick, jabbed it at your thigh then dragged it slowly down your leg. Dad had to go back on Sunday but Mum stayed and I told her when I got to 25 wks she could leave as I would no longer be so scared. The next day I was told I had a temperature and my heart rate was 100+ About 1pm Mum, MIL and my little princess were visiting when the docs came round. "You have an infection and we need to get the baby out" I felt fine - "Ummm... like... when?" "We are just calling labour ward to see if there is space" Stupid frigging roller coaster started again, I thought and all 3 of us started bawling. I called husband and by the time he got there, labour ward had called to advise that it was all systems go. 24 weeks exactly. The day I thought I was going to be starting work again!

Hospital... bedrest... surely you are exaggerating?

Later that evening, the tertiary hospital called. I was to be admitted tomorow morning and should pack a bag as I would be there at least a few days. I told my huysband and my folks then got on the net and researched. I read about the stitches they can do and prepped myself. In hospital I am told that the stitches are probably not the best option for me, I should just be on bedrest in the hospital... until delivery!! I thought it sounded very dramatic and explained that we had no-one to look after Brooklyn so they had to be sure. They had a scan booked for the Thursday so we would know more then. "Great... 4 days in hospital" Scan showed I was not all that short after all but I was now 1.5cm dilated. Different diagnosis, same outcome, same treatment. I had to stay. We would have to get the mother in law over from NZ for 2 or 3 months as mine couldn't take that kind of time away from her business or my dad. MIL doesn't drive, I made a big fuss about how I would not get to see my daughter etc and though it was what was going through my mind, I was more wanting to see if they were really so adament it was needed. We agreed I would stay til 24 weeks, have another scan and if nothing changed I could go home for the remaining bedrest and Geoff's mum would be Brooklyn's carer. I moved to "Medihotel", a ward where you don't get harassed by nurses, have your own room and generally look after yourself but have support if required. I was allowed to go to the bathroom and get food/drink etc but that's all. It was ok, I was bored out of my mind but that was ok. I just focussed on getting my next scan so I could go home. I rang work and said I would be back in a few weeks as I work from home and could do it from bed. After a week I noticed a bit of blood, just a speck. Went to mat ward, they said it was nothing much. This continued for a day or 2. I couldn't sleep with worry so at 11pm on the Wednesday I asked them to see if a midwife could be brought across to calm me down. We had a chat and I said "I'd know if my waters broke ay?" and she said likely there would be a slight pop but maybe not. Flashback: 24 hours. Little pop. I'd gone into denial as I remembered the feeling from February when I had my DnC. I tried to block that was what it was then too, I didn't want to believe my pregnancy was ending. The midwife said that she'd talk to doc and he may want to do a speculum but only if it was really needed as they are really trying to leave my insides alone. She was back 5 minutes later with a wheelchair. The most caring man Peter, did a spec at 11.45pm. He sat at the end of my bed and said the most haunting thing: "Now, I'd ideally like Geoff to be here when I tell you this... but obviously you want to know what is happening and that would be cruel" I knew it... "You're waters have certainly broken and you are quite dilated and effaced. I see the membrane bulging." I was 23 weeks and 1 day pregnant.

Stupid cervix!!

I went along for my 20 week ultra sound on Sept 17... so excited as we had decided to find out the sex of bub. I got through the 12 week scan perfectly this time round so what was there to worry about! The sonographer did her thing and about 5 mins later said she may do an internal scan after as well. She made it sound routine so I didn't really give it a second thought as she made her way around the bub telling us everything we needed to know. The scan was superb, or Geoff and I have gotten really good at reading them, not sure. I was elated. Then we found out it was a boy... even more good news, a pigeon pair sounded ideal. Next she brought back the internal scan idea. I was just going with it but Geoff was suspect. "Is there something wrong? Why are you doing this?" and she advised she was not getting clear measurements of the cervix. Fair enough. She advised us to wait in the waiting room while the obstetrician had a look at the measurements. It took about 15 minutes and all I could think of was "What is it with stupid scans? I am supposed to love them and now I get another one that stresss me out!" The obs came along and we were advised that my cervix was short and this generally meant I would be unlikely to make it to term, a nurse would take me through to the emergency dept. "WTF?????" Geoff and I just sat dazed as we waited in emergency hypothesising what I could possibly need to be here for. We have no family in Australia and came up with the scenario that I would be made to stay in hospital. "You'll have to live with my Mum for 3 months, she'll have to come over" "No, She couldn't do that, We'll have to send Brooklyn to her" and were interupted by someone taking us to the mat ward. I can't remember what I was thinking... it was just too unclear. A doc told us that I had 1.3cm of cervix compared to most which are over 3cm. I was also 3mm dilated but I had had a baby before so that part meant nothing much. The short cervix was an indicator but not a guarantee that I would have a prem baby. We left feeling pretty good and I was told to come back to see the Obs on Mon to discuss The Plan. Mum and Dad arrived for a holiday on Sunday and I went off to the obs alone. I would have to change to the Tertiary care hospital, I was told. They would do a management plan there. It may involve stitching me up. And this next bit: warning, not suitable for emotional people... the FEMALE obs tells me "The best thing would be if you went into labour in the next week so then it's a miscarriage. A baby between 24 and 28 weeks would just have so many issues, it would be too hard" Yes. That is pretty much verbatim. Nice work doc. I went home in a daze... Mum could see I looked a bit odd and asked if I was ok. I couldn't tell her the full story so I played it down and just said that I would probably not make it to 40 weeks. Then I cried some more