Bereaved: Arabella

27TH APRIL 2015 – 16TH MAY 2015

FOREVER 19 DAYS OLD

I remember the day so well, it feels like just yesterday. Friday 31st October 2014 & I was 13 weeks 5 days pregnant. I was still only just in the timeframe to have the nuchal scan & the receptionist had only just managed to squeeze me in for this appointment a few days prior. There was no reason for me to have the nuchal scan but the midwife at my 12w appointment suggested it & I was eager to see our beautiful baby. Daniel was in the middle of doing a hospitality course so I went along to the scan alone & promised to get him photos. They were busy & running late & I was told I had a bit of a wait so I phoned work to let them know I would potentially be late for work. I never made it in to work that day. The sonographer did the scan, printed off a couple of photos, told me the thickness that they measure at the back of the neck looked fine but said she saw something else that concerned her. I suddenly felt panicky but tried to remain calm. She said that someone else would need to talk to me & to wait back in the waiting room until I was called. I don’t know how long I sat in the waiting room & then I was told I needed to go up to another level to speak with some Dr. I don’t recall much of the conversation except the words congenital diaphragmatic hernia. I could hardly pronounce it let alone know what it meant. These words changed our lives forever. Everything the Dr was telling me all sounded positive, she kept talking of the best possible outcome until I asked her what was worst case scenario & she told me that if could be life shortening. I burst into tears. How could this be happening to me? I already had had 1 healthy baby so what went wrong this time? Was it something I did? The Dr went on to reassure me that it was nothing I did that caused this. She then told me she would send off a referral to Mater Mother’s in Brisbane for another scan to confirm the diagnosis. She said I would most likely here from them early the following week. I left the hospital dazed, numb & sobbing. I called work in tears telling them I wouldn’t be in. I called my sister to fill her in. I then went to wait for Daniel to finish his course for the day. I don’t remember if I called or texted to say something was wrong with the baby but he didn’t stay at his course for the remainder of that day.

The next few days I turned to Dr Google. I read everything I possibly could & then some. I couldn’t sleep. I was sick with worry. Monday came & went with no calls from the Mater hospital. I was getting anxious. Tuesday came around & still nothing so I called them instead to see what the holdup was. They informed me that they had received the referral on the Monday afternoon & had immediately sent off a fax request to TBH (Toowoomba Base Hospital) for my ultrasound results but they were yet to receive them. The lady I spoke with, had just 10mins prior to my phone call, been trying to get hold of the ante-natel clinic with no luck. I told her I would call them myself. After 4 attempts I finally got hold of them. Whomever I spoke to was under the impression the results had already been faxed but said she would fax them right away. Later that afternoon the Mater called to confirm I had an ultrasound booked at 2pm Thursday. Thursday couldn’t come fast enough.

During this week I also made contact with the family liaison contact from CDH Australia. I was added to the private Facebook support group & introduced myself almost immediately. This group has been an absolute godsend throughout this journey & I honestly don’t know how I would have coped without them. Friends & family support as much as they can but unless you have been through this, you can’t completely understand what it feels like.

Thursday finally rolled around & we headed to Brisbane for our appointment. Our scan confirmed the diagnosis of CDH. Our baby’s stomach & bowel were in her chest & her heart had been pushed across to the right-hand side of her chest. We were offered a termination but declined. We were also offered amniocentesis to rule out any other chromosomal abnormalities. Thankfully we didn’t have to decide there & then but were told to go away & think about it. A follow up appointment & another scan was scheduled for 2 weeks later.

Before our next appointment in Brisbane we had a follow up at TBH. The Dr we saw there was fantastic & helped explain things very simply to us. It was at this appointment we got the results of our nuchal scan back. I had been too busy focusing on the CDH that I hadn’t even given this anymore thought. Our results showed a 1:4 chance of Trisomy 18. What was trisomy 18? What would this mean for us if our baby had this? The only way to get a definite diagnosis was to have the amniocentesis which we had initially decided against. I left that appointment feeling crushed. Thankfully for this appointment & every other one after, I had Daniel by my side. As we headed back to our car I pulled out my phone & googled trisomy 18. “Not compatible with life” appeared everywhere I looked. The tears started to flow. Why me, why us, why our beautiful baby?

Over the next couple of weeks we tossed around the possibility of having the amniocentesis. I lost so much sleep over it, it invaded every waking thought. Eventually Daniel & I decided we didn’t want to go ahead with the procedure. Regardless of the outcome we would continue with the pregnancy. We decided then that any time at all with our baby was better than none at all. Our scans also hadn’t shown any physical markers for Trisomy 18, it was only my bloodwork, so we felt comfortable with the decision we had made. It wasn’t set in stone though & we decided if they picked up any physical markers at the next scan then we would re-visit the idea of amnio again. After we had made our decision, I was able to sleep again at night.

The following months consisted of many trips backwards & forwards to Brisbane for regular scans. This became our life. Our 16 week appointment brought some concerns for bubs kidneys & whether or not they were functioning but the following appointment all was fine. FETO was also raised & we were introduced to our case manager. She spoke to us about having to relocate to Brisbane closer to my due date but noted that she would help organise all of that for us & there would be financial assistance via the Patient Travel Subsidy Scheme (PTSS). This was another weight lifted from my shoulders.

There were days where I struggled a lot. I was following so many other stories of CDH babies- overseas & always scrolling through the American CDH page. I remember one day just falling apart after reading of another baby who lost his fight with CDH. It gutted me to the core. This was the reality we were facing. After that breakdown I stayed mostly off those sites & instead just talked to everyone in the support group. Daniel kept me going through it all. He remained positive & optimistic no matter what.

Tuesday arvo the Mater called to confirm I had an ultrasound booked at 2pm Thursday. Our 19 week appointment showed slight compression of Arabella’s heart but structurally it still looked fine. Her LHR was 56% which was good news. Once again amnio was suggested, but we were also told we could hold off until 32 weeks so that if the procedure did cause bub to come early, at least she had a decent chance of survival. We also found out at this appointment that we were expecting a little girl. This had been my gut instinct the whole way through. Daniel & I were both so excited. Before the CDH diagnosis we had planned to keep the sex a surprise but given what we were facing, we decided we wanted to know what we were having. I am so very glad we made this decision. This appointment would also be our last for 4 weeks. We got to spend Christmas & the New Year without trekking backwards & forwards to Brisbane for appointments.

January 2015. It was a New Year & big year ahead for us. Our 23 week appointment was nothing but good news. Our little girl’s weight & length was spot on average for a healthy baby. We saw the cardiologist & he was very happy with bub’s heart & had no cause for concern. Her LHR had increased slightly & the amount of right lung growing meant we weren’t a candidate for the FETO surgery. The Dr said that day that for a baby with CDH, our little girl was definitely doing everything right. Our case manager also had a date for us to be in Brisbane & that was April 5th when I was 36 weeks along. I was relieved to have a date so I could start to make plans to relocate. This meant though that I would need to break my lease for the house I was renting but in the grand scheme of things it was a small sacrifice to make.

A few days after our 23 week scan we had to make the trek back to Brisbane to have an MRI done. That was definitely an experience I would rather not re-live. Given how crazy & active our little girl was, I spent a lot the time in the tunnel holding my breath so they could get decent pictures of what they needed. We would get the results of the MRI at our next appointment.

Our 26 week appointment was pretty standard. The results from the MRI showed a small amount of liver in bub’s chest & the sonographer wasn’t able to get a good view of the heart & lung as our little girl was just being very stubborn. The Dr we saw that day was once again happy with her progress, said he would put her LHR at above 56% & given the amount of lung growth he wouldn’t classify her case as severe therefore meaning we still weren’t candidates for FETO. We took all these things as a positive. At this appointment I raised the possibility of Trisomy 18 again. It always played on my mind. The Dr was quite surprised that our nuchal scan results had shown a 1:4 chance & said he would’ve said less than 25% chance. This eased my mind somewhat. We told that at our next appointment we would meet the neonatologists & be given a tour of the NICU. It was all systems go from here.

Brain explosion are the words that come to mind when I think back on our 28 week appointment. We were at the hospital for 4 hours. In that time I had another scan done, we saw our midwife, met our social worker, met one of the pediatricians, met one of the surgeons, met a NICU nurse as well as having a tour of the NICU. The amount of information we were given through meeting all those medical professionals was overwhelming & took some time to process. Bub was yet again stubborn for the scan so they weren’t able to get a good look at her lung & heart but the Dr said the lung was definitely still growing, she was still growing well & no other organs seemed to be shifting. The surgeon we spoke to that was brilliant. From all of our scans & MRI results he told us he would put our little girl in the low-moderate risk category & definitely the lower side of moderate. He reiterated the point to us that no definite prognosis could be given & he didn’t like to use odds or statistics because they were just that. I remember so clearly that he finished up saying that if the surgical team were to place bets, that we would have a successful outcome given the risks appeared lower than they had seen in other CDH bubs. These words haunt me on regular basis now.

The appointments seemed to come & go so fast towards the end. I was exhausted & just wanted it all to be over. Our 30 week scan showed a healthy baby, a good heart with no compressed arteries & a decent amount of right lung. It also showed that I had polyhydramnios so they needed to keep a closer eye on me & monitor my amniotic fluid levels. They discussed that this increased my chances of pre-term labour & that they would drain the excess fluid if got any worse. I was told to slow down & take it easy. Given that I had a 3 year old at home, was still working sometimes up to 10 hour shifts on my feet & trying to pack up a house, I knew this would be hard to do. I made the decision after this that I would finish up work at 34 weeks instead of 36 weeks like I had originally planned.

Before our next scan in Brisbane we acted like a typical family expecting a new baby. We had some beautiful maternity photos done. It was so nice to relax & celebrate the pregnancy.

32 weeks came around fast & this was the quickest appointment we had had so far. Bub was as healthy as can be & my amniotic fluid levels, whilst still high, had remained stable since my last scan so a drain wasn’t needed. It was this scan that we took Lucas along for the first time. His world around him was changing & he had started acting up at daycare. Taking him to that appointment was the first step in preparing him for everything that was to follow. He loved seeing his baby sister on the big screen but was also quite confused as to how she got there from my tummy.

Our 34 week appointment was our last scan in Brisbane before we had to relocate. My fluid levels had once again increased but they still didn’t feel the need to do a drain. Everything was looking stable with bub & she was measuring a healthy 2.7kg. Prior to this appointment I was also diagnosed the gestational diabetes. This just felt like another weight added to our already very heavy load but I took it in my stride & dealt with it as best I could. Thankfully I was able to control it just with diet. Heading back to Toowoomba from this appointment felt like we had a closed one chapter in our lives, ready to embark on another.

The travelling back & forth to Brisbane was tiring. It was also a lot of juggling work around appointments as for each appointment I would need the whole day off work & then making sure my mum was able to pick up Lucas if we weren’t going to be home before daycare shut. We treated the pregnancy as normal as we possibly could. We shopped for baby clothes, discussed names & slowly brought everything we needed for our little girl. Lucas was looking forward to being a big brother & Daniel couldn’t wait to see his little girl for the first time. Every kick & hiccup from her we took as a positive. She was such an active baby & would keep me awake for hours on end with her kicking. Daniel would play games with her, poking my stomach until she’d kick him back. These are memories we will never forget.

Between the appointments in Brisbane, I also had to keep up with regular appointments at Toowoomba hospital. I found these appointments infuriating & emotionally exhausting. I can recall seeing one Dr twice in that time, every other time it was someone new. The wait in the waiting room was long; the Dr would get our file then disappear into their office. Eventually they would resurface, with a look of pity on their face, calling us into their room. They would go through the diagnosis with us, ask us if we had any questions then suggest we go back to Brisbane for a follow up scan. Sometimes I wanted to just scream at them. The only reason we had to go to these appointments was so that we could get a referral back to the Mater as I still wasn’t technically their patient until we were living in Brisbane. To say I was relieved after the last appointment is an understatement.

The Thursday before Easter we had a 4D scan done in Toowoomba. It was purely for our enjoyment & one of the best things we did. Being able to sit & watch our little girl was breathtaking. She was so active & pulling all sorts of faces. We even saw a smile. For a fleeting moment all was right with the world, there was no prodding my belly to move bub into a better position, there was no medical terminology & there were no rs. We even splurged & got a bear with a recording of Arabella’s heartbeat placed inside. It’s as though a part of us knew these minor details would be so important to us in the weeks that followed.

April 5th snuck up on us so quickly. I had thought by finishing up work 2 weeks earlier would free up some time so I could perhaps relax a little & catch up with friends before we moved down to Brisbane, but that never happened. Lucas flew down to NSW with his Uncle for Easter while we moved ourselves down to Brisbane & got somewhat settled. We were given accommodation at Reg Leonard House. It was a tiny unit with bedroom, longue & kitchen all in one room then the bathroom. As small & frustrating as it was, it was home to us for the 6 ½ weeks we lived in Brisbane.

Our 36 week appointment showed everything tracking along as well as it could be. Arabella’s weight was estimated to be 7lb 1oz. The scan showed mild cardiac compression but still satisfactory cardiac function. They also scheduled my induction as this appointment. We finally had an end date. The only thing that could have changed the induction date was me needing insulin for the gestational diabetes. I had a follow up with the obstetrician on the Friday & he was very happy with my blood glucose levels & no insulin was required so induction plans were to stay as they were.

37 weeks came & went. We had another appointment at the hospital to touch base with the neonatologist. Our case had been discussed at the Dr’s meeting the previous week so they wanted to touch base with us again. Our scan from the week before showed some more of Arabella’s abdominal organs had shifted upwards into her chest cavity pushing her heart further to the right & affecting the growth of her right lung. Given that this had occurred so late in our pregnancy, the Dr didn’t think the growth of the right lung would be too badly affected as a lot of what lung was able to grow, would have already grown. We saw our midwife again, had a CTG which showed a nice strong heartbeat & were told our induction had been brought forward 1 day to ensure there would be enough available beds in the NICU among other things.

April 22nd, 38 weeks & 3 days pregnant, saw us at a very last scan. Arabella was estimated to be approximately 8lb 9oz. She put on a brilliant acrobatic show for us & was practicing lots of breathing. Unfortunately with the shift of organs they were also seeing kidneys & liver lobe in the chest cavity. Her heart rate was also quite low so the Dr requested a CTG be done. If her heartrate didn’t stabilise they would bring the induction forward. After an hour or more of being hooked up to the CTG, the Dr’s were happy with Arabella’s heart rate & we were allowed to leave.

The weeks in Brisbane, before Arabella was born, passed fairly quickly. Having Lucas with us 24/7 was tiring, especially trying to keep him entertained when I was struggling to even walk, but somehow we managed. We rode the bus into the city, went to a football game, went on a ferry ride, swam at Southbank, rode the ferris wheel, visited the botanical gardens & went to the dinosaur expo.

Well the time had come, our bags were packed, there was no going back now. Lucas was staying at his Uncle’s place & we headed up to the hospital to start the induction process. After an examination & the cervical gel applied, we were admitted to a room on level 10. Daniel & I hardly slept that night & for the first time since the diagnosis, Daniel let his guard down. He admitted he was scared of what was to come & questioned what we would do if Arabella didn’t make it. As much as I held the same fears, I was relieved that he was letting out his emotions. At 5.30am the nurse came to tell us the birth suite was ready for us. I had so many emotions running through my body. I had everything crossed that the gel had worked & that they would be able to break my waters. They could. I was so relieved. Unlike my induction with Lucas, my body seemed to respond a lot better this time. I lasted a few hours without any pain relief. Once it got too much I opted for the gas. By this point I felt like I was starting to lose control & stress out so I asked for an epidural. It was another hour before the anesthetist arrived so I’m very glad I asked for one when I did. My labour seemed to slow down a little after the epidural took effect but again nothing in comparison to my first labour with Lucas.

At 3.23pm on April 27th 2015 Arabella Jade Chesterfield-Kneen entered the world ready to start her fight. Daniel was able to cut the umbilical cord before they took her from the birth suite into the adjoining resus room to intubate & get her ready to transfer up to the NICU. Having her taken straight from me was heart-wrenching. I just wanted to hold my little girl. As we had previously decided, Daniel went with Arabella. Once she was intubated & before they moved her up to the NICU to start putting lines in & make her comfortable, Daniel came back to me to tell me she was ok & that she had even opened her eyes. This helped me to remain calm as he then left me again to travel up to the NICU. The midwives & Drs were fussing around with me which kept me distracted.

The next few hours came & went & due to emergencies in the birth suite it was around 7pm before I was transferred up to a ward. My little girl was already a few hours old & I had only seen pictures of her. I desperately needed to see her but I also needed to see Lucas. Mum brought him up to the hospital to see me before visiting hours were over. Lucas was very eager to see Arabella so Daniel took him down to the NICU to meet her. I wanted to go with them but it would have all been too rushed. I still remember Lucas bursting back into my room a little while later saying “guess who I just saw?” He was beaming with pride, such a proud big brother. By the time mum had had a quick visit & I had eaten some dinner, it was close on 10pm before I finally got to go down to the NICU.

Seeing Arabella for the first time was confronting, beautiful & amazing all rolled into one. She was so perfect. She was stable, only on conventional ventilation with 45% oxygen & remaining steady. I didn’t want to leave her but with some gentle persuasion from Daniel reminding me how exhausted he was from keeping everyone updated all day & the nurses reassuring me it was ok to leave, I reluctantly went back to the ward with Daniel. Mum was staying in our unit for the night so that Daniel could spend the night in the hospital with me. The saying, no news is good news, playing through my head as I attempted to get some sleep. Somehow I managed to fall asleep only to be woken at about 4am to the phone ringing. I was frozen, I couldn’t move, my heart felt like it was going to explode out of my chest. The dread & fear raced through my body, I couldn’t answer the phone. I somehow managed to wake Daniel & get him to take the call. He took the call & then mumbled something to me about her not doing too great & needing some sort of medication before rolling over & going back to sleep. Daniel still doesn’t recall taking that phone call. About an hour later the phone rang again, this time I managed to answer it. It was the Dr on duty & she wanted us down at the NICU before 8am to have a chat with us. That fear & dread was lurking nearby.

That first night after Arabella was born saw her have a serious crash. Her heartrate skyrocketed, her blood pressure dropped & she had mild pulmonary hypertension. When we saw her that morning she was heavily sedated & paralyzed. She had high temperatures, very poor kidney function & they suspected an infection as well. Her heart rate was reading at 212. I was speechless. How could this happen like this? How could she come out ok then just crash? Little did we know that this would be a regular occurrence over the next 19 days. That first day after Arabella was born seemed to really take its toll on Daniel. As he left that night with Lucas I knew I needed to get out of the hospital & back to my boys. The following morning I was discharged as I requested. Physically I don’t think I was ready to leave the hospital but I could see Daniel needed me with him. Now was my time to be strong for him, just as he had been for me.

Our amazing social worker had been able to organise with Mater Childcare for Lucas to attend during that week that Arabella was born. This definitely lightened the load for Daniel & me. Lucas would visit Arabella before he went to daycare of a morning & then again in the evening. During the day Daniel & I would spend most of our time at the hospital. I was expressing milk for Arabella & rather than pump at the hospital, I would always go back to the unit instead. This was my way of ensuring I got some fresh air & decent food into me. It was also a chance to process everything that was happening.

Wednesday night brought talk of her surgery possibly happening the following day. She had slowly stabilised since her crash that first night. Her kidneys had started working & they didn’t need to keep her paralyzed. Baby steps we kept reminding ourselves. It was early hours Thursday morning that we witnessed first-hand what happened when Arabella crashed. A small line changed would send her heartrate up towards the 200 mark & her somewhat stable blood pressure would plummet from around the 45-55 mark down into the low 20’s. No matter how many times we saw her crash, I don’t think it ever got any easier, we just learnt to deal with it. On the inside my gut would churn but on the outside I would remain calm & talk slowly to Arabella.

The rest of Thursday ticked, by with no further indication of when her surgery would happen. Arabella kept steady & stable most of the time. When she was handled though, it was a different story. Our baby girl was fighting so hard yet the smallest movements caused her so much stress. She was so fragile. We had literally just got back to our unit when the NICU called saying that her surgery was scheduled for the following afternoon. Daniel raced down to the daycare to get Lucas before we went back up the hospital to meet one of the surgical team & sign the consent forms. We stayed with Arabella for a little while so Lucas was able to spend time with her. He absolutely adored her.

Friday 1st May 2015. The day had arrived for Arabella’s surgery. It was a wet & miserable day in Brisbane. Lucas & Daniel went & visited Arabella while I rested up at the unit. I knew it was going to be an emotionally exhausting day. Lucas then went off to daycare for the day & at 12.30pm Daniel & I headed back up to the hospital. We arrived just as the nurses were about to call us asking us to head over. The surgeons had phoned & they wanted Arabella prepped & ready to go. The surgery was to be performed at Lady Cilento Children’s Hospital so Arabella had to been transported across. Given how unstable she had been, they decided to transport her in her own bed rather than having to move her into the transport crib. The process of getting her ready to transport was like organised chaos. The surgeon & anesthetist had requested we accompany Arabella to LCCH so they could speak with us before the surgery. Shortly before 2pm we got the call that they were ready for her. Once the ward services men arrived we headed off. It is approximately a 10 minute walk through the connecting hospitals but it felt like an eternity. I remember standing in the elevator hoping & praying I wasn’t going to pass out. There were 2 wardens to push the crib, a Dr to bag Arabella as she wasn’t connected to the ventilator, 2 nurses to accompany the crib & take over other items & another person to wheel the nitric over. The nitric was just a back-up in case they need it. As we got to the entrance to the theater rooms we gowned up & headed in. We were able to wait in a little room outside of the theatre where both the surgeon & anesthetist spoke with us. We then said our goodbyes as Arabella was taken into the theatre. She travelled over very well & was nice & stable when she was taken into surgery. I couldn’t stop the tears from flowing after she was taken into surgery. I was just praying she would be ok. Given that we didn’t know how long she would be in surgery & what would happen afterwards, we had organised with my dad to take Lucas back to his place on the coast for the night. Dad needed to leave Brisbane by 2.45pm that afternoon. He needed Lucas’ car seat & clothes for the weekend & to be able to pick him up from daycare. I was confident that we would be back at the unit in time to organise all this but I was wrong. Just as we walked into theatre I sent dad a text message to say don’t worry about it all because time was running out & I hadn’t organised anything for him. It turns out that in our rush up to the hospital earlier that afternoon I hadn’t locked the unit behind us. So while we were talking to the surgeon & anesthetist Dad had managed to get into the unit, get the car seat & then ring my sister to see what clothes he should grab for Lucas. Daniel that morning had told the daycare that Lucas’ pop would be picking him up so dad was also able to get him from daycare without any drama. I breathed a sigh of relief when dad called to say he had Lucas with him. Now we just had to wait.

Daniel managed to sleep but I couldn’t switch off. I aimlessly scrolled through Facebook & browsed the net, watching & waiting for my phone to ring. 7pm came & there was still no word. I was stressed & anxious. At 8pm we finally got the call from the surgeon. I listened carefully to everything she said then hung up the phone. I wasn’t able to tell Daniel anything as I just burst into tears. Arabella had been out of surgery & back at Mater Mother’s since approximately 6.30pm. I was angry & frustrated, but also relieved that she had made it through the surgery. The surgery had gone ok. Her bowel, stomach, small intestine, large intestine & spleen were all in her chest cavity. The liver thankfully had remained down. She has a very small amount of left lung & it was barely functioning. The middle part of the diaphragm they managed to stitch back together but around the left side was completely destroyed so they had to use a patch to close the hole & sew the patch to her ribs. She was placed on the high frequency ventilator for the first time since she was born. Seeing her on this sort of ventilation was very full on at first, seeing her little body shaking/vibrating so vigorously took a bit of getting used to, but as the days passed I noticed it less & less. We were warned the next 24-48 hours she would be quite unwell given how much they had had to handle her bowel. We stayed with her for a few hours after her surgery until we felt comfortable enough to leave her. When we left her that night she was stable & resting but also on the nitric again to treat her pulmonary hypertension.

Each morning we would call the NICU to get an update on how she had been overnight. It was usually mid-morning before we would go up to the hospital each day. It was a routine that worked for us & then we would usually stay late into the night with her when it less hustle & bustle in the NICU.

Saturday, the day after her surgery was a big day for us. They managed to wean Arabella completely off the nitric & her oxygen was down to 45%. She also woke up properly for the first time, showing mummy & daddy her beautiful eyes. Our beautiful girl was going great guns. Sunday saw her oxygen down to just 30%, one of her heart/blood pressure medications completely weaned & the Dr had been able to hear some bowel sounds, which was progress. She was still retaining a lot of fluid & bringing up large amounts of secretions from her gut. An x-ray showed her bowel was quite large but that was expected given the handling of it during surgery. They were doing 4-hourly blood gases with the results determining how & when they could wean her medications & oxygen. At that point her blood gases weren’t bad but they weren’t good either. The plan put in place was to take everything slow & steady & let Arabella call the shots. This meant keeping her very calm, minimal handling, no over-stimulation & let her body do what it needed.

Monday saw her weaned off her other heart/blood pressure medication but her oxygen increased for additional support whilst her body adjusted to doing things on its own. This was another positive step forward but unfortunately too much for Arabella to handle. Our nurse that day was absolutely amazing & a voice for Arabella. After being poked & prodded by the surgeons Arabella would decel very fast & she felt like rather than improving, Arabella was just playing catch up. She was mottled & cold & not in a good way. The nurse suspected an infection & after a quick consult with the Dr, a course of antibiotics was started. After a few hours there was still little change in Arabella so they made the decision to put her back on the nitric. Almost instantly she started to pick back up again. That night she was still struggling, they were using warming blankets to warm her hands & feet, her pain relief & sedation had been increased to make her more comfortable & she had been put back on one of the heart/blood pressure meds.

The days came & went with constant juggling of her medications, nitric & oxygen. Arabella was up & down all the time. She had definitely picked up an infection which they suspected to be sepsis but the antibiotics appeared to be working. At this stage she started showing signs of anemia so a blood transfusion was mentioned. Even with the infections Arabella was a little trooper. She woke again on the Tuesday & spent 1 ½ hours awake watching us, staring at us & holding our hands. She was so alert & we felt things were heading in the right direction.

Lucas had gone back to Toowoomba with my mum to try to re-instate some normality in his life. As far as we were concerned we had a long road ahead of us in Brisbane with Arabella so we began to put plans in place to help give Lucas stability & us time to concentrate on Arabella whilst still being able to have quality time with Lucas. Wednesday night Arabella had her first bowel movement & was beginning to handle her cares a lot better with littler crashes & quicker recovery times. By the Thursday morning she had been weaned off the nitric & blood pressure meds once again & was handling her cares well. Given how stable she was at the time I went back to Toowoomba for the afternoon. Lucas’ daycare was holding a Mother’s Day evening for all the mums & kids & I wanted to be a part of that for Lucas. While I was away in Toowoomba Daniel let me know that they had to put Arabella back on the nitric & blood pressure meds to give her a little extra support but they had begun weaning these again by the time I arrived back in Brisbane that night. Daniel was also able to help give Arabella a bit of a wash down, help weigh her & she spent some awake again.

Friday saw a few things change & not necessarily for the better. On a positive note they were able to finally start giving her some milk feeds but on the downside the infection levels in Arabella’s bloodwork had increased not decreased like they should have if the infection was under control. She was already being treated with an umbrella antibiotic that covered blood infections so there had to be another source of infection elsewhere. More tests were done to find the source of the new infection. I had brought Lucas back to Brisbane with me on the Thursday evening. Mater childcare had said they would take him as we needed which was a huge help. 5pm that Friday afternoon, while we were picking Lucas up from daycare & sending him off to the coast again, Arabella had another massive crash after they had suctioned her breathing tube & turned her to her other side. Her oxygen had to be increased right up to 100% & they had to increase the nitric as well. She was due another milk feed but they had to stop that due to the amount of secretions they brought up when they cleared the gastric tube. We arrived at the hospital about half hour after the crash & could instantly tell she wasn’t in a good way. She was very pale, grimacing & frowning with pain. I felt utterly helpless & wished I could trade places with her. I just wanted to pick her up & cuddle her. I spoke with her nurse regarding the frowning & grimacing & she agreed with me that Arabella didn’t look comfortable. After clearing it with the Dr, she was given a dose of paracetamol. It took a while to start to work but you could tell when it had started to work as Arabella settled down a lot. While she was somewhat settled we ducked off to have some dinner before heading back to the NICU for a few more hours. While we were gone, Arabella’s nurse separated her pain relief & sedation into separate lines so that boluses of morphine could be administered as needed without further sedating her. This particular nurse was our earth angel. She had her own special relationship with Arabella & would always ask to be her nurse on her shifts. She was a huge part of our journey whilst in the NICU & we will always be eternally grateful for everything she did for us. We returned after dinner to a more settled little girl. We spent a few more hours by her side before heading off to get some sleep. Not long after we had left Arabella had yet another crash. This time it came out of nowhere, there was no trigger for it. They had her maxed out on her oxygen & nitric & had to give her some morphine boluses. There was no pattern to her crashes.

Throughout the course of Saturday they once again started to wean everything & given that her gastric aspirations were clear overnight, they once again started her feeds. The main point of these feeds was to line her stomach & to be able to give her an oral form of the nitric rather than her being hooked up to a machine. We had a big talk with the Dr on duty that afternoon. On an overall basis Arabella had plateaued since Wednesday but had made a little bit of progress that day. Her words to us were “she’s sick, but she’s stable sick”. The results from the cultures taken the day before showed another 2 types of infections growing. The chance of her having both infections was pretty slim but they once again used an antibiotic that could treat both types of infections. She wasn’t digesting her feeds but they kept on going with them. Her nurse at that time told us that given how sick Arabella was, we just needed to take everything an hour at a time & to take comfort in the small positives even if they didn’t last for long. Any positive was better than nothing at all. And we held on tightly to every little positive right until the very end.

Sunday was mother’s day. Just before 9am we received a call from the Dr saying that they were going to give Arabella a blood transfusion as her hemoglobin levels were still quite low. I gave verbal consent over the phone & signed the paperwork at the hospital later that day. She was given 80ml of blood & wow what a difference did that make. Arabella was pink & rosy again, no longer the pale colour she had been the past couple of days. She was handling her cares better & recovering faster after a crash. Her swelling had increased & urine output was lower but we were told the Dr’s weren’t too concerned. They could give her something to help increase her urine output but as they had just given her a blood transfusion they were worried it would cause issues with her blood pressure & electrolytes. She also began to finally start digesting her feeds. It was a good day & what we felt would finally be a turning point.

Wrong again. Why was this happening? Why was she stable one minute then at maximum support the next? The emotional exhaustion was kicking in big time & taking its toll on me. She’d had another bad night. They were giving her lasics to increase her urine output to help reduce the amount of fluid she was retaining. Her hands & feet were so swollen, puffy & tight looking. I hated seeing my baby girl like this. She’d stopped digesting her feeds again & there was bile coming up from her gut again. They started her on an IV form of nitric since the oral form wasn’t being digested. It felt like we’d taken another huge dive & needed to start climbing again. The rest of the day played out nice & steady. The IV form of nitric was working, her blood gases had improved, and she was digesting her feeds again and so began the weaning process once more. We desperately wanted to hold our little girl but we blessed enough to have her spend an hour awake with Daniel & I. Even after everything she was going through she still managed to give us hope. Hope is what got us to where we were so we weren’t about to give up. Seeing Arabella wiggling around more than normal renewed our strength & lifted our spirits. That Monday night Daniel took Lucas back to my mum’s in Toowoomba. It was weird being alone in the unit that night but I spent quite a few hours sitting up in the NICU with our little princess.

Tuesday morning brought further bad news & I had to face it alone. Daniel was still in Toowoomba & wouldn’t be back until the afternoon. Yet again Arabella had a bad night. The IV form of nitric wasn’t doing what they hoped & they had to stop all weaning. She was once again almost at maximum support. She was now small intestine, large intestine & spleen were all in her chest cavity. The liver thankfully had remained down. She has a very small amount of left lung & it was barely functioning. The middle part of the diaphragm they managed to stitch back together but around the left side was completely destroyed so they had to use a patch to close the hole & sew the patch to her ribsThere were 2 wardens to push the crib, a dr to bag Arabella as she wasn’t connected to the ventilator, there was 2 nurses accompanying the crib & taking over other items & another person to wheel the nitric over. The nitric is just a back-up in case they need it. As we got to the entrance to the theater rooms we gowned up & headed in. We were able to wait in a little room outside of the theatre where both the surgeon & anesthesitist spoke with us. We then said our goodbyes as Arabella was taken into the theatre. She travelled over very well & was nice & stable when she was taken into surgery. There were 2 wardens to push the crib, a dr to bag Arabella as she wasn’t connected to the ventilator, there was 2 nurses accompanying the crib & taking over other items & another person to wheel the nitric over. The nitric is just a back-up in case they need it. As we got to the entrance to the theater rooms we gowned up & headed in. We were able to wait in a little room outside of the theatre where both the surgeon & anesthesitist spoke with us. We then said our goodbyes as Arabella was taken into the theatre. She travelled over very well & was nice & stable when she was taken into surgery.There were 2 wardens to push the crib, a dr to bag Arabella as she wasn’t connected to the ventilator, there was 2 nurses accompanying the crib & taking over other items & another person to wheel the nitric over. The nitric is just a back-up in case they need it. As we got to the entrance to the theater rooms we gowned up & headed in. We were able to wait in a little room outside of the theatre where both the surgeon & anesthesitist spoke with us. We then said our goodbyes as Arabella was taken into the theatre. She travelled over very well & was nice & stable when she was taken into surgery.11 days post-op & they had hoped there would have been more improvement then there had been. She was testing them but they still had options. The neonatologist had decided he was going to speak with the Drs over in PICU at LCCH about what else they could do for Arabella. ECMO was also mentioned as a last resort. I was gutted. I knew she was sick but this was hard to hear. They put a plan in place to keep her muscle relaxed/paralyzed for the next few days in hope that her body could get the rest it needed. They were hoping that the rest would start to give them some room to move with her ventilation settings. Her little body had been through so much & she needed a break. I was all for keeping her muscle relaxed as I had felt she had been pushed too hard. The constant up & down & weaning of medications was mentally exhausting for me, let alone what it was doing to her.

I remember sitting by Arabella watching a couple across the room. They were deep in conversation with a Dr & a couple of nurses. I saw them begin to cry, I saw the tissues being handed to them. My heart broke for them. I knew they were being given bad news. What I didn’t know was that less than 24hrs that would be me sitting there crying.

Tuesday night I had Daniel back by my side & what a relief that was. The NICU Drs had a chat with the PICU Drs that evening. After assessing her case, PICU were able to able to advise NICU where to go next. In PICU things are done differently, they have different protocols & guidelines to follow. These simple changes meant there was some room to move whilst her body rested. The cardiologist was called in to do an echo on her heart. This caused yet another crash for Arabella & she took an hour to recover from it. The cardiologist was very concerned about her heart. The echo showed her right ventricle was working far harder than the left ventricle. The only way to fix this was to get the pulmonary hypertension under control. She was on every medication possible so it was back to playing the waiting game. How was it all going so wrong? We were at the stage where we should’ve been reducing the medications, getting her off them not increasing them & adding more. Things were looking grim but I knew we weren’t at the end of the line. There was still ECMO. That magic word that had been tossed around since we were pregnant. It saves lives, I’d read the stories. I knew of babies with odds far worse than Arabella that had been saved because of ECMO.

Wednesday morning I called the NICU for an update. There was nothing new to report except that the Dr had requested a meeting with us. I was worried. I didn’t rush to get ready that day. Subconsciously I think I was trying to put off the meeting with the Dr for as long as I could. There was no set time the Dr wanted to see us, they knew we spent a lot of time with Arabella so the nurse was happy to just give the Dr a call once we were up in the NICU. Just before midday we made the 5 minute trek up to the hospital. When the Dr came in to see us, he pulled up a chair as did Arabella’s nurse. Stay positive I told myself. I don’t recall much of that conversation. I don’t know if I ever will. I do remember asking the Dr about ECMO. She wasn’t a candidate. Why? I was so angry & bitter. Why mention this procedure to us as often as they had only to then turn around & say she wasn’t a candidate. As if we hadn’t been tormented enough already. The tears began to flow. We needed a miracle. Every day since Arabella was born I had a group of contacts in my phone to update on her progress. After this meeting with the Dr I had no idea what to tell them. I simply sent them a message saying Arabella was fighting hard but we were losing the fight. I also added she wasn’t eligible for ECMO & that we need a miracle to bring her home.

I needed some fresh air & to clear my head. Dad met us at the hospital about an hour after he got my text message. We went across the road to the Brewhouse to have a drink & try to process everything that we had been told. My brother also met up with us there. I sat & cried. I couldn’t do anything else. I didn’t know what to say or do. I felt like my heart had been ripped out of my chest. After our drink we headed back to our unit for a bite to eat before we went back up to the hospital. The unit was a 5 minute walk away. As soon as we got back to the unit Daniel realised his phone wasn’t in his pocket. I didn’t have it either. He legged it back to the pub to see if it was there. He returned shortly after without the phone. The pub had CCTV footage but the manager had to access it & when Daniel had gone down to the pub he wasn’t there. Daniel was told to come back in an hour & they would view the CCTV footage. We tried calling Daniel’s phone but it went straight to message bank. I called my brother to see if he had seen it. Nobody knew anything. Daniel retraced his steps to make sure he hadn’t dropped it. It was nowhere. At 3.30pm he went back down to the Brewhouse to speak with the manager. He reviewed the CCTV footage & sure enough the phone had been left laying on the couch we were sitting at earlier & someone picked it up, put it in their pocket   & left. We were crushed. On the phone there were so many photos of Arabella. Daniel had taken way more photos then I had. He also had the last photos of Arabella awake. We needed that phone back. In my frustrations from the day’s events I took to Facebook to vent. A wonderful friend did up a post with the details of the phone being stolen & why we so desperately wanted it back. The post went viral. The amount of people that shared our post was phenomenal. We called Daniel’s phone company to cancel the sim card & lock the phone down. We also reported the theft to the police.

I had spoken with our social worker earlier that afternoon explaining how angry & bitter I felt about everything. She told me that if I wanted to reschedule another meeting than she could arrange it. I needed time to process it all before I spoke to the Dr again. I spent most of Wednesday night researching CDH studies & ECMO studies. I needed to understand why Arabella wasn’t a candidate. In the short time we had been in Brisbane we felt like we were medical professionals in our own right. We had learnt so much medical terminology in just over 2 weeks. I was so thankful for this because as I sifted through various articles on the internet that night I found myself understanding so much of what I read. I came to the conclusion myself that Arabella wasn’t a candidate for ECMO & I felt at peace with everything.

By the time Thursday morning arrived our Facebook post was everywhere. We had a few journalists contact us for a story as well as a reporter from Channel 7 News. If this is what fame was like, Daniel & I didn’t want a bar of it. We desperately wanted our phone back but we also needed to stay focused on Arabella. I gave permission for dad to speak on our behalf regarding the phone. He met with the channel 7 reporter for a brief interview with a plea for our phone to be returned. It aired on the 6pm Brisbane news. A journalist for Kidspot also got hold of the story & after speaking with my brother ran an internet article with the potential to reach thousands. Our story was everywhere, our precious little girl was spreading her magic & raising much needed awareness for CDH. Lucas was due to come back to Brisbane that day & Daniel was going to meet mum halfway to Toowoomba to pick him up. In the end we both decided we would go for the drive. Being at the hospital we felt so helpless. We were barely even allowed to touch Arabella due to her being muscle relaxed. She had started to move again so they had to up her sedation & paralytic. The drive to meet mum gave us a chance to talk freely about things. I tried to raise things with Daniel regarding the possibility of her not making it but he just saw that as me giving up. I was in no way giving up on Arabella but I was also being realistic about how things were going. When we finally got back to Brisbane with Lucas he was already asleep so both of us couldn’t go back up to the hospital to visit Arabella. I made the decision to not see her again that night. I couldn’t face it alone. Daniel went to see her again. He told me later on that he had a long talk with the nurse caring for Arabella that night. She had 36 years of nursing experience & had worked with many CDH babies. Daniel asked her for her own honest opinion of Arabella’s outcome. She told him she didn’t think that Arabella would survive.

A call to the NICU on Friday morning brought no changes. Arabella was on maximum support & they just altered her meds as needed. The Dr had requested another meeting with us that would be scheduled once we arrived at the NICU. Daniel & I were back on the same page about where things were headed. The walk to the hospital that day was hard. Walking into the NICU I felt like the walls were closing in on me. I could hardly breathe & I felt like I was going to be sick. We requested our social worker be with us for the meeting with the Dr. When the Dr arrived & we were taken to a quiet room. We all sat down & he just simply said to us that he assumed we knew why we were there & that unfortunately there was nothing further they could do for Arabella. They wanted to stop the paralytic so she could start to wake & that all the decisions from there were up to us. I remember saying how much this sucked & that it was my sister’s birthday the following day. Arabella couldn’t die that day. The Drs agreed we could keep her on the paralytic until the Saturday to buy us some time but also stressed the point that if she went downhill fast there was little they could do. How could we be forced to make such horrible decisions? How could we know when enough was enough? How could we let our little girl go?

After the Drs & nurses left it was just Daniel, our social worker & me. Tears were shed, laughs were had & plans were made about how things would go from here. We wanted heartfelt to come in & do photographs & we wanted castings of her fingerprints done so that later we could have it imprinted in jewellery. Our social worker set off to put our plans into action & we then started to make the dreaded phone calls. I rang my sister & told her she needed to get on a plane. Her first words were “no I don’t” before she burst into tears. I told her I was sorry but she needed to get here asap. I knew mum was already on her way so I didn’t want to call her & upset her whilst driving. After another brief visit with Arabella & a chat with the lactation consultant about how to suppress my milk supply we headed back to our unit for some lunch. We ran into my brother on his way in to see us. We broke the news to him then. He was gutted. We were at the unit just going through things when we got a call from the NICU to say Arabella’s saturations were dropping quite low & they felt it best we head back over to the hospital. Was this it? Were we going to lose her this quickly? I wasn’t ready to say goodbye. As we raced back to the hospital my brother walked down to Mater childcare to pick Lucas up & bring him up to us at the hospital. Thankfully Arabella stabilised again & everyone that was on their way got up to the hospital to see her. Many tears were shed. Members from both mine & Daniel’s families were there. As the night went on everyone left us. Mum stayed in our unit with Lucas whilst the rest of my family went back to the Gold Coast. Heartfelt were booked for midday on the Saturday as was the lady who does the fingerprint jewellery. Our favourite nurse was back with us that night. When we first walked back into Arabella’s room she gave me the biggest hug ever. At least in such a horrible situation we had someone who knew Arabella well. Sitting by Arabella’s crib that night we decided it was time to turn of the paralytic. It was only Daniel’s Aunty & Uncle left to arrive & they would be arriving mid-morning Saturday. The paralytic would take some hours to wear off so we decided to head back to our unit to attempt some sleep. We were assured if anything looked like it was going downhill with Arabella then we would be phoned immediately. Somehow we managed a little bit of sleep that night & there were no phone calls from the NICU.

Saturday morning felt like we were getting ready for a big event. In a way we were. Daniel & I headed up the NICU once we were both showered & dressed. Heartfelt & the finger print lady would be arriving by midday & we wanted to spend some time with Arabella before they arrived. The fingerprint lady arrived just after 11am. Daniel had ducked off to meet his Aunty so I stayed with Arabella until he got back. While Daniel was gone Arabella started to wake up & open her eyes. I made sure to take lots of photos as I was unsure how long she would stay awake for. Once Daniel got back with his Aunty I raced back down to our unit to get Lucas so we could have photos done with him. We wanted him to be as involved with everything as much as he possibly could. Back at the unit my sister & her partner had arrived as had my best friend & her mum so, including my mum & Lucas, they all came back up to the hospital to see Arabella & essentially say their goodbyes. We were pulled up by the lady on reception telling us only 2 people were allowed through at a time. Having to tell them my daughter was going to pass away, therefore we were all allowed in to be with her, was one of the hardest things I have ever had to do. I felt sick to my stomach having to utter those words. It was the first time I really had to acknowledge it out loud to an outsider but it most definitely wouldn’t be the last.

Our original plan with Heartfelt was to have photos of Arabella with just myself, Daniel & Lucas but it didn’t turn out that way. The Heartfelt photographer spent just over 3 hours with us & our extended family. It was like our own little celebration, the family & friends drifting in & out during those 3 hours. As all this was happening Daniel & I were always consulting with the nurses & slowly turning off all her medications. Our plan was to be able to have our very first cuddles with her while Heartfelt was there to capture the memories. Given how unstable Arabella could be, we were advised that moving her from her bed could be too much for her body so we needed to be prepared that she could pass there & then. We decided that once she came out of her crib that she wouldn’t go back in & we would allow things to happen as they needed. Arabella was awake for over 2hrs, showing off her beautiful eyes to everyone & taking in everyone around her. There came a point when I could see she was tiring & Daniel & I decided it was time we held our beautiful girl. With a great deal of effort, Arabella was placed into Daniel’s arms. The rest of my family had come up from the gold coast so they too were able to have photos taken with Arabella. Daniel held Arabella first. It was the most beautiful moment watching him hold her for the first time. She gazed into her daddy’s eyes & slowly drifted off to sleep. After a while Daniel & I swapped positions so that I was able to hold her. The feeling of her warmth & soft skin will stay with me forever. She was absolute perfection. I don’t know how long we stayed sitting holding her, staring at her & just loving her. Our family & friends wandered in & out. Lucas came & spent some time with us. The love for his sister was undeniable. We had been given a memory box by our nurse earlier that morning & in the box were 2 bears, one bigger than the other. They were sibling bears. Lucas had one & Arabella had the other. Lucas played with Arabella & the bears, he talked with Arabella, held her hand & gave her lots of kisses. He sat on our laps for a while & at that point Arabella woke up again. She knew her brother was there & she had to check him out once last time. I could have sat for hours nursing our little girl but the noises from the NICU & her ventilator were starting to get to me. As much as I didn’t want to say goodbye, I needed for Daniel & I to be alone with Arabella. I asked everyone to say goodbye & then asked the nurse to take Arabella off the ventilator so we could move to quiet room to be alone with her.

I carried Arabella out of ICN1 & into a small room just up the hall. The nurse bagged her & Daniel carried the morphine pump. We entered the room & sat down on the couch with Arabella. The nurse said when we were ready she would stop bagging & take the tube from Arabella’s throat. Daniel froze. I asked him was he ready & he said “no, don’t do it.” My heart stopped, I could see the pain on his face but I could also see our little girl struggling. I told him we needed to let her go, she was looking uncomfortable. Daniel nodded & I then told the nurse we were ready. I held my breath as she stopped bagging & removed the tube. Finally we could see just how beautiful Arabella was without any tubes connected to her face. I told her how much we loved her, how proud of her we were & that she could go whenever she was ready. She took a few breaths, opened her eyes to look at us one last time, made a little peaceful sighing sound & then she was gone. The sound she made will stay with me forever. It was the only sound we ever heard her make. We never even got to hear her cry. Shortly afterwards the nurse came back to us, she removed the morphine line & had the Dr come in to confirm she was gone. The Dr also discussed with us the option of having an autopsy carried out. We didn’t have to make a decision there & then although Daniel & I both knew what our decision would be.

A room up on the 9th floor had been organised for us, so we wrapped our precious little girl in her blankets, placed her in her crib & wheeled her up to the 9th floor. We were given our own private room where we were able to spend as long as we wanted with Arabella. We had already decided we would spend the night with her so my sister went back to our unit to get us an overnight bag & a few other things we wanted.

My mum, sister & Lucas came & visited us in our room. They nursed Arabella & gave her lots of cuddles. Daniel called the Heartfelt photographer to let her know where we were so she could come & take more photos as planned. Once she arrived, we bathed Arabella for the very first time & dressed her in the little outfit we had purchased the Saturday before she was born. The photographer spent a while with us, capturing beautiful photos we will treasure for a lifetime.

Lucas spent this time with us, loving & doting over his sister & then my sister & her partner took him back to the coast with them for the night. Daniel’s brother, brother’s partner & nephew also spent some time in the room with us. It all felt so right & natural being there with Arabella, telling stories & just being a family. They are memories we will treasure forever.

Our angel nurse was on that night & she was meant to be looking after Arabella. Given that Arabella had already passed, she was instead assigned to look after us for whatever we needed. She put together Arabella’s memory album from the memory box, cut a lock of hair for us & got 2 more sibling bears that “weren’t ugly” as she put it. She even did up a little gift pack to keep Lucas occupied while he was with us. Over the course of the night she floated in & out, sitting & talking with us, nursing & cuddling Arabella & even having some photos taken with her. A heart-breaking time made somewhat easier by such a loving person.

That night, Saturday 16th May 2015, we spent our first & last night with Arabella. I cuddled her in my arms all night long. Daniel lay with us for quite some time, but given the bed was only a single, he eventually moved to the small couch near the window to sleep for the night. Daniel & I talked for hours with very little sleep had by either of us.

Our overnight stay was not without drama of its own. With meals we hadn’t even received trying to be collected & then only being sent a meal for one of us, people knocking & walking in before we would respond. Our room offering to be vacuumed, questions as to where the baby was & congratulations given to us. It was an absolute shamble & took its toll on Daniel. On the Sunday around lunchtime we called the NICU team leader to come & collect Arabella. Friends of ours had come from Toowoomba to spend the day with us & Daniel wanted out of the hospital sooner rather than later. The Dr on duty in the NICU also came to talk to us regarding the autopsy which we consented to & signed the forms. I would have gladly stayed longer but I wouldn’t force Daniel to stay. The nurse gave us the number for the bereavement midwives to call if we wanted to see Arabella again. Saying goodbye to Arabella & walking out of the hospital was a surreal experience.

We headed in South Bank with our friends & got lunch, ice-cream & went for a wander. My sister & her partner met us there with Lucas. Nobody knew what to say or how to react. It was eventually decided that we would all have a bbq dinner & drinks back at the unit that night. It was a fun night, kind of our own little celebration for Arabella. After our friends left & my sister & her partner headed back to the coast, I went to bed with Lucas. Daniel stayed up drinking with friends we had made with a couple 2 units down from us before coming to bed early hours of the morning.

The next few days were somewhat chaotic. We had a funeral to arrange, Centrelink forms to lodge, a unit to pack up & move back to Toowoomba as well as trying to process everything that happened. I was numb & didn’t know what to do or where to turn. We met with our social worker on several occasions to debrief & get help organising things. My family was at war with one another, everyone was fighting over finances, everyone wanted to help but I didn’t know what I needed done. I felt out of control. After a big chat with our social worker, I cleared my head & did what I do best. Control & organise! I made appointments to see funeral homes & the Toowoomba Garden of Remembrance & I basically told everyone else to butt out. This was our little girl & she was going to get the send-off she deserved, no expenses spared. The word funeral ate at me & sounded so morbid so instead we decided we were having a celebration of Arabella’s life & a Party Fit for a Princess to follow her memorial service. A party, something I love planning & since it was the only party I would ever plan for Arabella, I was going all out.

Being able to organise helped me take control of the situation we were in. I suddenly felt I had purpose again. On the Tuesday afternoon we decided we wanted to see Arabella again. My dad & brother also wanted to see her for cuddles but circumstances changed & they didn’t see her. We once again were given a private room on Level 9 & we spent a few hours with Arabella. One thing we hadn’t yet done was take Arabella’s footprints & handprints so the bereavement midwife helped us to do that. She brought in the ink stamping kit & we took plenty of prints. Mum & Lucas were both with us but mum left after a while as it got too much for her. Lucas sat & cuddled Arabella & talked to her. He played “this piggy went to market” with her as well. That night we got the entire unit packed up & into the cars. It was only the essentials left.

Wednesday was a hard day. We said goodbye to a place that had become our home, we said goodbye to the nurses in the NICU, our midwife in MFM & our social worker. We also said goodbye to Arabella. Her autopsy was scheduled for the following day so this would be the last time we saw her again until the funeral. Impressionable Kids came that morning & did castings of her hands & feet & once they had left we had another visit with our little Princess. The bereavement midwife on duty that day got us all hot drinks & biscuits for Lucas. She also had to talk to us about the forms we had signed for the autopsy. We had agreed to them retaining some of Arabella’s organs for analysis, providing that they were put back once they were finished with them. This was all good & well except this could take up to 6 weeks. We had a few options. We could postphone the funeral, we could have the funeral without her, we could say no to organ retention or we could still go ahead with it & they would return her organs to us at a later date so they could also be cremated & put with the rest of her ashes. I was so torn. I didn’t know what to do. We asked so many questions. Firstly what organs did they want to retain? Obviously it was her lungs but it was also her brain. I found it hard to breathe when we were told that. How could I consent to them taking her brain? Would she still look the same? Would I know her brain wasn’t there? Why did the need her brain? Why did we have to be making these sorts of decisions? Why, why, why? I just wanted my baby girl to be alive. It was so cruel that we were being forced to make these decisions.

Daniel remained calm & he seemed to know the questions to ask that would cement our decision. Why her brain? And would it give us answers? We were told that the brain is like a map to the human body. It can provide many answers to healthcare professionals. Given that Arabella had a condition that had been diagnosed prior to her death, there is about a 75% chance that retaining her brain would provide them with more information than if they didn’t retain it. It was for those reasons that Daniel said he was ok with it. And if Daniel was ok with it, then I was ok with it.

I didn’t want to leave Arabella but we had to be back in Toowoomba at 3pm for an appointment with a funeral home. We said our goodbyes & left the hospital. I grabbed the final few things from our unit whilst Daniel went down to the daycare to get Lucas’ bed sheets & thank them for everything. That was it, another chapter closing in our journey, and a new one just beginning.

The appointment at the funeral home was overwhelming. So many decisions to be made, so many questions asked & none of which we had answers to. When the $4000 price was handed down to us I was dumbfounded. This was our baby girl & those fees didn’t even include flowers or pamphlets. We both left with a sour taste in our mouths. It seemed all about profit to them.

On the Thursday my faith in humanity was restored when we met with another funeral home. The funeral director was such a wonderful lady. She talked us through everything, answered all our questions & put no pressure on us to make any rushed decisions. She was like another angel in disguise. As we left our meeting with her she told us she too had lost a daughter 26 years earlier to CDH. Her daughter lived for just 9 days. We knew then that this was the place we wanted to help organise Arabella’s celebration. The less than $1500 price tag was also very reassuring. This was including pamphlets & flowers & then we were also able to spend extra on what we wanted.

The good experiences didn’t last long. Trying to organise a place to have a memorial for Arabella was hard enough as it was without everything being about costs. The cheapest option we were offered we didn’t like so we asked what else was available. We were told “there are other options but they can get very expensive”. I politely said that money wasn’t an issue, this was for our little girl & somewhere we would visit for years to come. We wanted the best for Arabella & I think we were entitled to that. After finding out the rest of our options we left feeling a little more a peace. There was no rush to organise her memorial site but we had all the info we needed when we were ready to do so.

Over the following week everything came together piece by piece. We had various appointments meeting with a celebrant, organising somewhere to have the service & the party, meeting with the lady who designed the pamphlets as well as organising the party itself. I did majority of the organising myself & this definitely helped me with my grief. I was still Arabella’s mummy & I wanted nothing but the best for her.

The one thing that took a lot of thought & debate was having Arabella’s body brought to the funeral home in Toowoomba. Whilst it was something the funeral home usually does, it was also an option given to us. I was all for it, Daniel not so much. I felt that I needed to bring her home to Toowoomba ourselves but Daniel didn’t know if he would be strong enough to do it. I felt that while Arabella’s body was “here”, as in not cremated yet, that I had to do whatever I could for her. After much discussion we finally decided we would bring Arabella home to Toowoomba ourselves.

Wednesday 27th May, another day that I will never forget. Arabella would have been 1 month old. Her body was ready for collection in Brisbane so we made the dreaded drive to Brisbane yet again. It was different driving to Brisbane that day. The months beforehand as we had made that drive, were full of uncertainty & the unknown, but that day it was a more calm & peaceful feeling. While we had lost our beautiful baby, we were no longer faced with worry & stress. We parked at the entrance to Mater Mother’s & headed inside with a piece of paper authorising the release of Arabella to us. Given this wasn’t the ‘norm’ thing to do, we had a few minor hiccups but they were taken of care of quite quickly. We were finally re-united with our baby girl. She was just as beautiful as ever. Then came the question that many people had asked me, the question that had plagued my thoughts, how do I take Arabella out of the hospital? “You carry her out just as you would any other baby”, the bereavement midwife told me. So many feelings rushed through me, so many thoughts flooded my mind. This was it. I was taking my baby home. I was actually going to carry my baby out of the hospital. I was elated & nervous. The midwife offered to take us down the staff lifts then walk with us to our car for extra support. This made me feel a lot better. So off we went. On our way out to the car we ran into the surgeon that had operated on Arabella. We stopped for a brief chat as she looked at Arabella & commented on how beautiful she was & told us how sorry she felt for our loss. To everyone around we looked like any normal family leaving the hospital with our newborn, but it was so far from the reality of what it really was. We climbed into our car & made the tiring drive back to Toowoomba. I sat in the back nursing Arabella whilst Daniel drove. No words were exchanged on that trip home. It was a silent, reflective drive.

Once we got back into Toowoomba we took Arabella to the funeral home. Daniel carried her in & yet again we said another goodbye. Another goodbye closer to our last & final goodbye. That night we went to a friend’s place to watch the state of origin, something I do every year. When I finally sat down that evening I was overcome with so much emotion. I was in such a daze. My emotions took quite a strong hold of me that night & I went from numbness to anger to tears. Laying in bed that night Daniel proposed to me. It was not how he had planned to propose but given my emotional state earlier that night, I had managed to completely botch his plans. We laugh about it now because it is definitely a story to tell for years to come. It is also ironic that I ruined his plans because Arabella had done the exact same thing the day she passed away. Daniel had originally planned to propose that weekend. Like mother, like daughter I say.

On Thursday we went back to the funeral home to re-dress Arabella in the angel gown we had made for her from Angel Gowns Australia. We had decided we wanted to do this ourselves at our first meeting with the funeral director. Her angel gown was just beautiful & she truly did look like an angel. Our angel.

Dressing her turned out to be a rather daunting experience. We were very under-prepared for the scars she would have as a result of the autopsy. I remember asking the Dr the day she passed away, if her scars would be as horrific looking as what is portrayed on television shows. He reassured me that this would not be the case. I also remember us asking the bereavement midwife if she would look any different after they had taken her brain & lungs. Once again we were assured that this would not be the case. Both of them were wrong on so many levels. Seeing where they had cut Arabella open & then stitched her back up brought tears to my eyes. He body was also distorted around her stomach & rib area. I felt sick to the stomach & I wasn’t sure if I could follow through with dressing her. I honestly felt like I was going to pass out or throw up. Those images are forever imprinted in my brain. Daniel only took a brief look before looking away. He asked me if I wanted him to go & get the funeral director to dress her for us but I said no. I pulled myself together & reminded myself this was my little girl. I was able to look past the scars & go about dressing her. Once I had her little jumpsuit on I was fine. Daniel then helped me to get her into her angel gown & put her little socks on. We took plenty of pictures of our little princess.

That evening we went out to Le Grezze to start to set up for Arabella’s party. Le Grezze is owned by the school my mother works at & they had let us have use of it for the whole weekend. With the help of friends, dinner provided by one of mum’s work colleagues & a few drinks, we had the place set up in no time. It looked stunning. I had very little sleep that night as I sat up to write my eulogy for Arabella’s service the next day.

Friday 29th May. Another date never to be forgotten. The day we said our final goodbye. Arabella’s memorial service was held at St Ursula’s College Chapel. We were also given the use of it by my mum’s employers. I was up early & at the chapel to set it up & finalise some last minute details before going home to get ready. Mum & her friend did the final running around for us picking up bits & pieces & getting last minute things we had forgotten. At 12.30pm we left our house & headed over to the funeral home to pick up Arabella. It was just another thing we wanted to do ourselves. We took her in her coffin to the chapel & sat her with her teddies, giraffes & sunflowers. She truly was stunning & the coffin was adorable. We had decided against the standard white coffin & instead went with an ‘environmentally friendly’ coffin. Yes this is how it was advertised. It was made of cardboard & covered in pink rattles, rocking horses & teddies.

At 1pm we opened the chapel to allow for people to view Arabella before the service. A photographer friend of ours also came & took photos of how the chapel was set-up & Arabella so that we would have those memories to look back on. Shortly before 2pm Daniel, Lucas & I said goodbye to Arabella before asking the funeral director to close the coffin.

At 2pm the service started & by 3pm it was over. It went off without a hitch. Daniel, Lucas & I along with immediate family, entered the chapel to a piece of music by Celine Dion & then before we sat down the 3 of us lit a candle in memory of Arabella. We had our celebrant open the service with words written by my Uncle who is the pastor of a church in Tasmania. My best friend & Lucas’ godmother read a blessing for us, my dad & Daniel’s mum spoke & then we had a friend of my brother’s sing a rendition of Halo. She had the voice of an angel & even tweaked some of the words to include Arabella’s name in the song. Following the song tribute my brother read a poem for us, my sister gave a tribute & then we had a photographic tribute to Arabella. There were 2 pieces of music played with a slideshow of photos that was lovingly put together by our photographer friends. Following this Daniel’s aunty read a poem on Daniel’s behalf & then with Lucas & Daniel by my side, I delivered my tribute. I thought I would be a blubbering mess but my little girl was looking out for me. I spoke with confidence & ease & farewelled our baby girl. It was one of the hardest things I have ever had to do, yet I did it with so much pride. The celebrant did the closing prayer & committal then asked for us all to take a few minutes to reflect as we had another moving piece of music play. Towards the end of the song Daniel, Lucas & I moved forward to extinguish the candle, a symbolic moment of a life short lived. Daniel carried Arabella’s coffin from the chapel & placed it into the hearse. Everyone filed out of the chapel behind us & all stood together as the hearse was shut. As the hearse drove away, the 3 of us released 4 beautiful butterflies. They were to represent our family of 4. One of the butterflies had trouble flying so it became Lucas’ pet for the next few days. Everything about the service was perfect. It was everything I had wished for. Our little girl had the most beautiful send off. After about half hr on mingling, lots of hugs & some tears, we headed out to Le Grezze to continue the celebration. We had beautiful platters of food put together by the kitchen staff at mum’s school, a beautiful cake given to us by a friend as well as the cake that we had ordered. A friend cooked up a bbq for dinner, we had our cakes for dessert when we announced our engagement & the kids toasted marshmallows around the bonfire. A few people stayed overnight.

Saturday night we did it all again on a lot smaller scale with just a few of our close friends. Over the course of the weekend we had 100+ people come & pay their respects. It was a wonderful time for Daniel, Lucas & myself to begin to recoup away from civilisation.

On the Sunday afternoon on our way back into town I finally had enough service to listen to a voice mail message I had received on our way out to Le Grezze on Friday afternoon. It was from a lady claiming that she had Daniel’s stolen phone. I asked for a photo of the phone & smiled the biggest smile when the picture came through. It was Daniel’s phone! Daniel was planning on meeting the lady in Brisbane the following day to collect the phone. For some reason I held off setting a time & place to meet & I am glad I did. On the Monday she handed the phone back into the police station where they were handling the case. Given everything we had going on, the officers were able to return the phone to my dad, who works in Brisbane, rather than have us make another trip down there. It was such a relief when we finally got the phone back from dad with all the photos still there. I hadn’t actually realised how many photos were on there of Arabella that Daniel hadn’t shown me. Arabella was definitely looking after us.

Over the following weeks reality of life without Arabella began to set in. We missed her like crazy. Things that I thought would get to me, didn’t, & things I thought wouldn’t get to me, did. Seeing her bassinet, the clothes we brought her & her highchair didn’t hurt like I thought they would. Although we had brought them for Arabella she had never been in any of them therefore the connection wasn’t as strong. The one thing that breaks me down is Lucas. He questions about where Arabella is, rip me apart. His asking if we can go to heaven to see Arabella, brings me to tears. His waking up crying in the middle of the night asking for Arabella, well there are no words, just a heart full of pain.

Our lives will never be the same again. There will always be something missing. I used to hear of stories of mother’s who lost their babies. I used to tell myself that wouldn’t be me. I used to think how could you survive a loss like that, how could you cope. I believed I would be the type of mother who would be hysterical & never leave my room, that my life wouldn’t be worth living anymore. The honest truth is that all of those assumptions were wrong. I am the mother who has lost a child yet I am still here, I am still standing & I am fighting. Arabella has given me a strength I never knew I had. Lucas gets me out of bed each & every morning. He wipes my tears when I cry & tells me that he misses Arabella to. The days where I can’t get out of bed, Daniel takes over. He gets Lucas off to daycare & brings me cups of tea & toast. My boys are my world & my little girl is my guardian angel.

Our journey is far from over & in a way it never will be. One thing I do know is that I have found a purpose & a drive I had forgotten I had. I will do whatever I can to make sure people know of CDH. I will donate, I will fundraise & I will support. CDH may have taken our little girl but it will not take our lives!