~Our Journey~

Our journey started the end of November 2007 when we discovered we were expecting another baby. I estimated the due date to be 25-07-08.It was a very scary but exciting time.

I couldn’t wait until 20 weeks for an ultrasound so I asked my GP to book me in for one. We had our first ultrasound on the 15^th of December to evaluate dates. The findings were single viable foetus. No maternal or foetal abnormalities are identified. A normal foetal heart tone, yolk sac and embryonic pole were identified. The foetal heart rate is 127bpm. The gestational sac volume is normal. There is a good decidual reaction. Approximately 6 weeks and 3 days. EDD by ultrasound 6/8/08.

After the ultrasound we went home happy knowing our little jelly bean was real.

Our first midwife appointment was on the 5^th of February, everything so far was progressing nicely. They did the usual routine blood tests and made another ultrasound appointment for the 26^th of February.

26^th February: The sonographer started the ultrasound by measuring the baby’s head, by these measurements she concluded that it was to early in the pregnancy to do the ultrasound. She estimated that I was only 16 weeks. We had to make another appointment for three weeks. Our next appointment would be for the 19^th of March.

Before the next ultrasound I had a check-up with one of the doctors at the hospital, the pregnancy was progressing well.

19^th March: The day ours lives were going to change. We went in to the ultrasound wondering if they could tell us the sex of the baby. During the ultrasound I noticed the sonographer was spending a lot of time looking at the heart, I never questioned why. When I had ultrasounds with Thomas he was always laying so they couldn’t get a good view of the Spine and Heart, so I just assumed it was the same this time. I asked if she knew if we were having a boy of girl, at this stage she couldn’t tell. Everything was growing normally. The ultrasound took over an hour. Just as I had finished getting cleaned up the sonographer came back into the room and told us she needed the radiologist to look at the pictures of the baby before we left. We were left standing around for 15 minutes wondering what was going on. When she eventually came back into the room and told us the radiologist needed to get some more pictures of the baby’s heart. Lying on the bed with the sonographer focusing on the heart her supervisor came in. while he was looking at the heart I asked if there was a problem, he replied that he thought there was a hole in our baby’s heart. He then went on to tell us that most of the time the hole closes up before birth, or shortly after with very few babies needing surgery to fix it. They then continued talking in whispered tones in medical talk so we couldn’t understand what they were saying (very scary when they do that). He told us that he would put a recommendation in his report that we went to see a specialist at Liverpool Hospital. The sonographer also change of due date to the 25^th July.

My next clinic appointment wasn’t until the 28^th of March, we had what seemed like a long wait (it was only a week) to find out what was wrong with our baby. With the Easter long weekend coming I wasn’t able to change my appointment to get in any sooner. I called on the Tuesday and ask the midwife if she could give me the result of the ultrasound as it was driving me crazy not knowing if our baby had a heart condition. She told me that the report stated the baby had no abnormalities. This allowed us to relax a little. Finally Friday was here and we could find out if there was anything wrong. I had the usual check up everything was progressing well. I then asked the midwife about the ultrasound results, she looked them up and saw that there was a recommendation for us to go for further scanning of the baby’s heart. She didn’t seem to think there was anything wrong as most of the people she referred to this specialist ended up having nothing wrong. She told us to go home and rest as my blood pressure was a little high, she would call later that day with a time and date for the specialist. Our appointment was for the following Thursday the 3^rd of April.

3^rd April: We asked Brad’s mum Joy to watch Thomas while we went to have tests done for the baby. At this stage we hadn’t told anyone about the potential problems with the baby. We arrived at the specialist with hopes that we were just going to get better pictures of the baby and be told that nothing was wrong. We met Dr John Smoleniec. He started the scan asking a few general questions. After he had completed the ultrasound and I got cleaned up he then sat us down and told us that our baby had Hypoplastic Left Heart Syndrome, one of the most serious and rarest heart conditions.

John then went through the diagnosis and explained to us what the condition was. He told us the three options that we had open to us: termination, palliative care and a series of operations. John also told us the statics associated with this condition. The baby had a 60-75% chance of survival if we chose to have the operations.

John then asked if I would like to terminate, which was not something I was thinking about at that time. Once that was decided we were told there was a high chance we would have to move to Melbourne if we want the operations done, because he wasn’t sure if they had/were doing them in Sydney yet. There also seem to be a narrowing on the artery that joined the lungs and heart, which would cause some restriction in the growth of the lungs.

We decided to have the operations done to give our little angel a chance at having a long life. We were referred to Dr Garry Sholler a cardiologist at Westmead Children’s Hospital. We went home not really understanding what was going on.

We then had the hard job of telling our family and friends that our baby had a very serious life threatening heart condition.

John made us an appointment to see Dr Sholler on the 9^th April. It was very stressful on us not knowing much about the problem. So I did a lot of research on the net to see if I could find out more about it, I came across a lot of families who had been through it and had good outcomes, which gave me hope that our little one would be fine. Then I found Hearts or Hope and read the stories of the little ones who didn’t make it. Now I didn’t know what to think.

Before our appointment with the cardiologist I had thought about what would happen if I was to have a termination. I did some reading about what would have to happen if I wanted one. I found out that they would induce me and I would then give birth to a live baby and watch while they done nothing to help the baby breathe or live. At 26 weeks I decided I didn’t want to do that, knowing that babies born at this age can survive. If I had to give birth to a live baby I wanted to do everything possible for a chance at have a full life.

9^th April: After a very stressful morning our time had come to see the doctor that would tell us the much wanted and needed information. Dr Sholler started the consultation with yet another ultrasound to confirm the diagnosis, he also did a foetal echo. The baby had some flow through the left side which we got told was a good thing. After the ultrasound was done Garry wanted to talk to us about how we wanted to proceed. We talked about the operations as that is the option we decided on. He told us the chance of survival had gone from 60-75% to 80% chance of survival. He told us they were doing the ops in Sydney, but we had to speak to the surgeon to see if he was available to do it, as there is only one in Sydney. We told him that we wanted to speak to the surgeon before making a decision about where to have the ops done. We left that afternoon with more questions than we had answered. We had to organise an appointment with the surgeon Dr David Winlaw, Tuesday the 15^th April.

 While we were waiting to see the surgeon, I had people constantly asking me about what was going on, how they were going to fix the problem, who was going to do what and where where we going to have it done. This made life even more stressful for us.

15^th April: I asked my mum to come with us to see the surgeon to watch Thomas while we spoke to Dr Winlaw. We went in hoping to get more answers. Speaking with the surgeon he answered most of our questions about what would happen during the operations. He checked his calendar and was available to do the operations in Sydney for us, but told us that Westmead didn’t have the ICU care that the baby would need after surgery. David told us that the odds in Sydney were no where as good as Melbourne. Mum got to ask the surgeon questions which helped to put her mind at ease. I asked about the chance of having another baby born with the same problem, David told us it goes from being a 1-2% chance like every other pregnancy to 8% chance, which I don’t think is enough of a chance to not think about having more children. David told us there was a 20% chance of brain damage, or some kind of mental developmental delays. Brad asked David if it was his family member where would he go. David replied that while he was confident he could do the op he wasn’t confident in the ICU care. So I decided then and there that we were going to Melbourne. The surgeon told us he would inform Dr Sholler of our decision and he would start getting things organised for us to leave, and to expect a phone call from Melbourne soon.

On the 18^th I had another general check up. I was doing well considering what was going on, the only thing was I had slightly high blood pressure, the midwife wasn’t to concerned, as I was seeing the same midwife I had during my pregnancy with Thomas and I had high blood pressure with him. She suggested I see a doctor the following week to make sure it was ok for me to continue my pregnancy care under the midwife not the doctors.

Doctor’s appointment Monday the 21^st April, he didn’t see any reason for me to be placed under doctor’s care as the baby was growing well and there weren’t any other complications. Sometime before my next appointment I received a call from one of the midwives from The Royal Women’s Hospital Melbourne, we spoke for awhile (not that I can remember what we spoke about), and she informed me that we had to be in Melbourne on the 23^rd June. To get to know my way around and meet the doctors that would be caring for my baby and I. the midwife requested that I go for regular ultrasounds to much sure the baby was growing and there weren’t any further complications.

12^th May: We had another ultrasound with John. The baby is growing well (just over 1.5kg), with no other abnormalities found. There was another complication I was producing to much amniotic fluid which could cause me to go into premature labour. John wasn’t too worried about it he just suggested that I see him again in a few weeks. In the meantime if I had any pains or concerns to go to the hospital. I reported this to the midwife in Melbourne she told me the same thing that John did, also that I may need to be in Melbourne if it caused any complications, and to keep her updated.

Appointment on the 16^th May:  baby growing nicely, blood pressure to high. Not worried about the extra fluid.

Went to the obstriction on the 29^th May, he told me that I should be going to Melbourne as soon as possible just to be on the safe side incase I did go into labour, it would be better for the baby, if I delivered in Sydney he would have to be flown down to Melbourne which is very risky. I called the midwife as soon as we got home to tell her what the doctor had said, she told me to get packed and ready to leave and she would speak to the obstriction down there to find out when they wanted me down there.

From memory she called back a week later and told us to be there on the 10^th June. And that she had organised accommodation across the road from the Women’s hospital, and to go for another growth scan. As the cardiac surgeons wouldn’t operate on a baby less than 3kg.

4^th June: had a different doctor do the ultrasound as John was busy. Dr Alan Adno. Baby growing nicely, 2.3kg now. The doctor was worried about the extra fluid (polyhydramnios). Everything else was good with no sign of heart failure. I asked if we could find out the sex of the baby, it’s a BOY. (We got a picture to prove it).

6^th of June: the day before we left I decided to give Thomas a first birthday party, also to say goodbye to everyone Mum, Greg, Joy, Aunty Elaine, Nan, as we didn’t know when we would be seeing them again.

7^th June: Left home for Melbourne the start of our big adventure. Drove to the farm stayed for the night, Jim, Bev, Brad and Samuel went down to Megan and Carlos farm for some fireworks as it was the Queens birthday weekend. Thomas was very sick so we stayed at the farm in the warm.

8^th June: Mid-morning we left the farm for Wangaratta. Stopped for lunch at Gundagai, to see the Dog on the Tucker Box. We also stopped at Holbrook to see the big submarine. Thomas was feeling better today. Arrived at Wangaratta and settled in for the night.

9^th June: Left Wangaratta about 10am, drove to Glenrowan and saw the big Ned Kelly. From there we drove to Melbourne. Once we arrived in Melbourne (about 1pm) found our apartment and relaxed for the rest of the day.

10^th June: We had a slow morning before arriving at the Royal Women’s Hospital for a 1:30pm ultrasound got told I have too much amniotic fluid, followed by a check up with the obstetrician; all is well with Zac. Got told that because of the extra fluid I have it could bring on premature labour, also the danger if my water broke (the cord could come out before Zac.) Also went over a few things that would happen while we are in Melbourne. A very long day.

12^th June: We for a walk down to the Royal Children’s Hospital (RCH) for morning tea with HeartKids. We met some very friendly and helpful people. Wandered around the hospital. On the walk back to the apartment we stopped for a little play in the park, we discovered that Thomas doesn’t like the swings or the slippery dip.

13^th June: Had an appointment with a paediatrician, we waited for 3hrs before they moved the appointment to Tuesday.

14^th June: Went exploring to day, found Brunswick shopping centre (where we would go to get our groceries). Contractions started today.

15^th June: Went to Church today Scots Presbyterian (the first Presbyterian church in Melbourne), the congregation is very friendly and welcoming. Had to leave and go to the hospital as I started to worry about the contractions I was getting and not feeling Zac move all morning. Had a check up and they ended up keeping me in for the night.

16^th June: Brad had a rough night with Thomas. I was discharged from the hospital at 1pm; contractions ended up being tightenings, got told that they could go away or stay until I had Zac. Went home and relaxed for the rest of the day.

17^th June: Had appointment with the Paediatrician to discuss what was going to happen in the time after birth till he got transferred to RCH. Obstetrician appointment everything ok with Zac. Moved over to Max’s Place, across the road from RCH.

19^th June: Thomas and I went to HeartKids morning tea. Met with our social worker Alison Ballie, had a tour of 7west the cardiac ward that Zac would go to after leaving the ICU, Also had a tour of the ICU (very scary place). Then we met with the cardiac surgeon Dr Christian Brizzard, he made sure we knew what was going to happen during the first operation, also told us what to expect after the op.

20^th June: I went to meet the chaplain Keith Bell at the hospital today to find out about getting Zac bapitised. Then explored the hospital a little more found the child care and starlight room.

21^st June: Shopping and exploring today. Very cold. Still having cramps, so not really wanting to do too much. Made a wrong turn while exploring and ended up at Flemington Racecourse. Also saw a War Memorial.

22^nd June: Brad and Samuel went to church this morning; Thomas and I stayed home as I wasn’t feeling very well, and was having cramps, which had gone by lunch time. Very cold again today stayed home and watched DVD’s.

25^th June: Went for a walk up to the new Women’s Hospital for a look around.

26^th June: Had appointment with Social Worker at the Women’s and Centrelink. Morning Tea with HeartKids, then went shopping at Doncaster.

27^th June: Had another ultrasound today the doctors starting to worry about all the extra fluid I have. Saw the obstetrician they are talking about inducing me around the 37 weeks, also got told that if I am too uncomfortable and can’t sleep they will do a fluid reduction before then. Other then that all is ok with Zac.

29^th June: Went to church. Went to Westfield’s at Airport West. Did some shopping.

30^th June: Took the tram into the centre of Melbourne today had a look around and explored the city. Samuel and Thomas loved the trams. Great family day but very tiring.

1^st July: Had a heart trace doctors worried about Zac’s movements, the fluid also because I can’t sleep. Turns out I have 5 litres of fluid almost double what I should have. After an hour of waiting they decide I should stay in the night for bed rest while they decide what to do next. Got told they will induce me the next day, an hour later they decide it would be better for Zac if I have a fluid reduction to help minimised the risk of going into labour. Had the Amino reduction, they only got 1 litre because I was having contractions, they put the needle down between Zac’s face and the cord, he then thought it would be fun to grab hold of the needle and wave it around. They also did a 3D ultrasound, we got fantastic pictures of Zac; it is amazing to see how much detail there is. I was kept in hospital overnight because of the risk that I would go into labour. After a very long day Brad took the boys home around 9pm.

2^nd July: Brad and the boys came for a short visit then back home for lunch. They came back after lunch; I got discharged at 6pm. Before we left I got told that they would be inducing me within the next week.

3^rd July: Went in for a heart trace. Then to the HeartKids morning tea.  Joy and Brad’s older son Ashley boarded a bus and headed down to Melbourne, as they wanted to be down here for the birth. 

4^th July: Brad went out early to pick up Joy and Ashley from the coach terminal.  After breakfast we all went down to the Women’s for another heart trace and a check up. Talked about when to do the induction we decided on Thursday unless it needed to be done earlier. Until then I had to have daily heart traces done to make sure everything was ok with Zac as he isn’t moving much. Got told to rest as much as possible, as I would need to be well rested on Thursday.

5^th July: Heart trace done everything still ok. Did shopping and spent the rest of the day inside.

6^th July: Heart trace done everything ok. Went to church, very cold so we spent the rest of the day inside.

7^th July: Thomas Birthday. Heart trace done took hours as Zac kept moving and they couldn’t get a constant trace of his heart. Went to the park after we left the hospital. Went home for lunch and had Thomas’s birthday cake. Then spent the rest of the day inside.

8^th July: Trace done and over quickly. We went to the park for a play, then to the shop for a few things. Thomas not very happy we think he might be getting another tooth.

9^th July: Had a Centrelink appointment and social worker appointment before the heart trace today. Joy took the boys to the park while we were going to our appointments. They met us just as we were finishing the heart trace; we then went down to the café for a hot chocolate before going home. Home for rest this afternoon as tomorrow will be a long day.

10^th July: Today is the day, up early and down to the hospital at 6:45am. Up to have a heart trace; they aren’t sure if there is an ICU bed for Zac, waited until 8:30am got told they wouldn’t be doing it today as there aren’t any beds for Zac. Got told to call the hospital after 8:30am, the next morning to see if they could do it then. Went back to the apartment very disappointed. We took the boys out for a while. Brad took Joy, Ashley and Samuel to the coach terminal as they had to go home, all disappointed they won’t be there when Zac was born. Thomas got his 7^th Tooth.

11^th July: rang the hospital at 8:30am they didn’t know anything and would call us after they spoke to RCH. They called just before we went out to get a few things for Thomas, to let us know they couldn’t induce me today, but they would be able to do it tomorrow as they were holding a bed for Zac.

12^th July: Today is the day we hope, up early again down to the hospital at 7am, Thomas didn’t like being woken up. All booked in waiting in the delivery suite they just want to double and triple check that there is a bed for Zac. After we got the all clear I got the first lot of gels at 11am, nothing happened, got told we could go for a walk around as long as I didn’t leave the hospital grounds. Doctors came back in at 5pm to check on my progress. Tried to break my waters didn’t work so they decide to give me another lot of gels. Had a trace done, I then went to get up and felt my waters break (took a while to convince the midwife), midwife told me to walk up and down the halls but not to leave the delivery ward, contractions started just after dinner. They were small just uncomfortable not painful. Thomas went to sleep we made him a bed under a desk where he would be out of the way when things got going. At 11pm the doctor came back in to check my progress I had dilated to 4cm turns out it was only my hind waters that broke. They then broke my waters, contractions started almost right away. After they broke my waters Zac’s heart rate was dangerously low, they tried a number of times to put a clip on his head to monitor his heart rate. My heart rate went up very high they were worried about me having a heart attack.

13^th July: Serious labour pains started just after midnight, a large number of doctors seemed to just appear out of no where. Thomas woke up with all of the noise and excitement. He woke up just in time to watch as Zac’s head entered the world, he pointed and kept repeating bubba bubba. The delivery stopped just before Zac’s head was out due to the cord being around his neck, after the doctors got him untangled, they placed him straight onto my stomach. Zachariah Ronald made his much anticipated arrival at 12:28am, 8lb 5oz 22 inches long. APGARS- 1 min = 9 APGARS 5 mins = 9. No stitches needed. Before they started cleaning him up Brad and Thomas both got to cut the cord. During the time the paediatrician was monitoring him and cleaning him up all I  wanted was to know is if he was born breathing as I couldn’t hear him crying, the doctors lifted him up over everybody that was in the room so I could see that he was crying and a nice healthy pink body with a very purple bruised face. After they had cleaned him up we got our first real cuddle, before they had to take him away to the special care nursery, to preform the necessary test before his transfer to RCH. After I got the feeling back in my legs and got cleaned up it was straight up to see our little boy. Zac was doing well breathing on his own. After seeing him and making sure he was ok Brad decided to take Thomas back to the apartment to try and get some sleep. I wanted to just sit there and watch Zac but I needed some sleep as it was going to be a long day. Just after 8am one of the nurses came into me and asked me to go straight to the special care nursery, at this point I didn’t know what to think as I was told he would be moved to RCH within the first three hours. There wasn’t a problem with Zac they just needed some information and a few forms signed so they could transfer him. After seeing him leave with the fantastic people from NETS, I called Brad to see if they got any sleep and to let him know that Zac had left, then went back to my room to wait for the doctors to discharge me and get more sleep.

10am: Brad was back at the hospital with me when the doctor came in to ask how I was feeling and give us some info on what to do if I wasn’t feeling well and needed to come back to the hospital, he told me I could leave after lunch if I could walk out of the hospital unaided, but I had to go stay in the postnatal mother’s unit in RCH (which made me closer to Zac so I didn’t mind).

1pm: We went straight to RCH to see how Zac was doing. He was stable with mild sedation, got told he may be going into surgery tomorrow. After spending a few hours watching as the nurse took care of our little boy and I got another cuddle, Thomas was starting to get hungry and tired. Saying goodnight to Zac was hard but we all needed some sleep. After saying goodnight to Brad and Thomas, I went back to my room for a good nights sleep.

14^th July: Got some sleep not much but enough to get me through the day ahead. Went to see how Zac was dong before meeting Brad and Thomas at the front entrance. He had a good night was still stable, the nurse informed me that surgery would probably happen Tuesday or Wednesday, then asked if I wished to cuddle him. After the nurse took Zac back and got him resettled in bed I went down to meet Brad and bring him back to the ICU. Got back to the ICU around 9am to be told they were taking Zac to surgery in half an hour. Brad got a cuddle while I organised for Keith to come and baptise Zac. While Zac was in surgery I had to go back to the Women’s for a check up, after that we went to do a little shopping to try and keep us occupied for a while. After an agonising 8 hour wait Brad got a phone call just after 6pm from Dr Brizzard to tell us that Zac was out of surgery. Zac had done well with no problems during surgery, and the next 24-48 hours would be hard on him and on us. We arrived to see him and were surprised by the amount of tubes in him, also by his chest still being open (nothing can prepare you for seeing you child like that). We were very happy to hear that he had done well and that he looked well. Dr Brizzard said he was very happy with him and confident he would make a quick recovery.

15^th July: Zac isn’t having a good day today. He is having oxygen and blood pressure issues. His pacemaker is trying to keep his heart in the right rhythm, and the doctors are considering putting him on the heart bypass machine (ECMO) to give his heart a rest. He doesn’t look well has a blue/grey colour to his skin. We went home for dinner around 6:30pm, the doctor called around 7pm to tell us that Dr Brizzard had been back in to see Zac and he is now stable. We went back to visit after feeding and bathing Thomas to see a different little boy to the one we left a few houra ago, he looked well. His skin colour was back to a nice pink colour and was warm to touch. I checked out of the hospital as Thomas needed me at home. Ashley and Samuel are happy to hear that Zac is doing well.

16^th July: Had another check-up with the women’s hospital today, the midwife is happy with the way I am healing and didn’t think I needed to go back for any further check ups. My father-in-law Jim and his partner Bev arrived to see Zac today. Zac was started on breast milk today 1ml an hour but it’s a start. It was a good day today.

17^th July: Zac is still stable and continuing to improve. Still has a lot of fluid around his heart so they can’t close his chest until they get a lot off. Went into the city for coffee with Dad and Bev, so we could have a much needed break. We then went our separate ways and met back at the hospital. Went out to dinner with Dad and Bev. Zac is being feed 4ml and hour today.

18^th July: Dad and Bev visited with Zac before heading out to explore the city. We spent the day going back and forth to the hospital; Zac is doing great except for the fluid around his chest. They are still draining heaps off but not enough to close his chest. Zac is up to 8mls an hour now and is doing well. They are reducing his meds and he is stable.

19^th July: brad went and picked up my Mum and Greg early this morning from the bus stop, we all then went over to visit our little boy. They have continued to reduce Zac’s meds; he is improving more and looks better every time we see him. Went home for some dinner then back to visit before bed to get told they will be closing his chest tomorrow.

20^th July: When we visited with Zac this morning his eyes were open. He looks great. I took mum and Greg out to see some of the sights of Melbourne (mum has never been down here before) to help pass the time during Zac’s surgery. Brad stayed at the apartment and waited for news. Zac didn’t do very well the doctors were forced to reopen his chest after his heart stopped. He is now on ECMO and not stable. If he stabilises over night they will try and take him off the machine tomorrow. I thought walking in to see Zac after surgery was hard but it took all me strength to walk into his room, I think it took this to make me realise how sick Zac is and that he could die at any point. Mum has decided to stay another night which I am very grateful for. Dad and Bev have also decided to stay for a while longer.

21^st July: Zac has stabilised but not as much as the doctor would like. We were informed that they would have to change his oxidiser in the ECMO machine as it has a blood clot. At this stage they are unaware of what is causing the clots. Had to take mum and Greg to the bus stop tonight for there trip back to Sydney, mum has to work tomorrow. Visited with Zac when we go back, they put off changing the oxidiser until later that night. Got home very late.

22^nd July: Arrived to find Zac is doing a little better, but still not as well as the doctors would have liked. He is awake and responding to our voices. Dad and Bev came in for a visit after lunch. The doctors gave us the news that Zac had to come off ECMO Thursday at the latest and his chances were slim (the longer he stayed on the machine the less chance he would ever come off it). Dad and Bev were a great support during this time. Brad called Phil and told him the news. Phil then organised for himself his wife Bev and Ashley and Samuel to arrive in Melbourne that night. Brad went to pick them up at the airport at 9:15pm. By the time we got back to the hospital the doctors had completely removed the oxidiser, his lungs were doing the work to oxygenate his blood.

23^rd July: we all visited with Zac this morning, the doctors and nurses were trying very hard at trying to improve his stats for tomorrow’s procedure. Phil and Bev watched the boys while Brad and I could have a long visit with Zac. He is still awake and looks at us when we speak to him. He grips our finger when we hold his hand. Brad and I went shopping while Phil and Bev watch the boys. Dad and Bev had to leave this morning sad to see them leave. Joy and Brad’s aunty Elaine arrived late this afternoon, we all visited with Zac until late tonight. Thomas caught a gastro bug from the ICU and is very sick.

24^th July: arrived early to spend as much time with Zac before his procedure. We were told they would start at 10:30am which became 11:30am then 12pm. Mum and Greg arrived in time to see Zac before the procedure started. I took the boys and Bev up to the HeartKids morning tea to pass the time. The doctors came in just as we got back, they were unable to take the bypass machine off today, and Zac really struggled without it. They decided to give him one last chance this time they would try a different approach tomorrow. They would not put if off again he had to come off the bypass. They also informed us that they would not be resuscitating him if he required it during the procedure. They told us it was a million to one chance that he would come off the bypass alive, if things went bad they would call Brad and me in to say goodbye. Ashley had to go home tonight. After Brad and Phil dropped Ashley at the airport we visited with Zac for a few hours he was still heavily sedated from the afternoon’s procedure.

25^th July: arrived early to see Zac. They started the procedure at 11:50am. We just sat around the lounge waiting for the doctor to come and tell us it was over, we got told in could take anywhere from half an hour to 2 hours but the longer the better. The doctors finally came in some time between 2:30pm and 3pm to tell us the good news that he came off bypass and is alive. We all went in to see him but were told not to touch as he needed to conserve all his energy to get better. We got told that he was critical and the next few hours would tell us if he would make it or not. We had a brief visit because of the x-rays and ultrasounds they had to do. Brad and Greg took the boys down for a play in the park. Brad, Greg and the boys went to see Zac around 5pm for a quick visit before, joining mum and myself for dinner in the café down stairs. Met with Joy and Aunty Elaine. At 6:30pm we went up stairs to see Zac, to be told that he had a leaky heart valve, and he was in critical condition. During the next 2 hours the doctors did everything they could think of to try and save Zac’s life, in the end his heart was just not strong enough to survive life. Brad and Samuel read “Guess How Much I Love You” to Zac. At 8:30pm they removed most of his wires, it was time to have our final cuddles and say goodbye to our beautiful baby boy.

While I was holding Zac everybody took turns in coming in and saying their goodbye. What seemed like a long time Zac’s nurse asked us if we would like to take out the breathing tube out, after the tube was removed I gave Zac to brad. Zac passed away in Brads arms. Zac then had to have his chest sewn up, seemed to take forever. Brad and I then went in to spend time with Zac and to bathe him, so we could present him to our family and friends. Before we bathed him the nurse and I took hand and foot prints we also got a plaster cast of his hand and feet, and a lock of hair. Everyone had a cuddle and said their private goodbyes. We decided to let the doctors do a post mortem so we could help other babies and their families as they are unsure of what went wrong with Zac. Time just stood still for a brief moment in time, it was then time to say goodbye and leave Zac behind one last time. We walked home numb and speechless.

26^th July: Phil and Bev had to go home this morning, we are so thankful for their love and support during this hard time. Phil took on the job of speaking to the funeral home for us. Our mothers then took us out to St Kilda Beach for lunch to try and take our minds off things. Samuel had started to show symptoms of the stomach bug Thomas has. Brad and Joy both got sick later that night. Thomas is getting better, but still sick. I realised today that Zac died on his due date.

27^th July: Mum, Greg, Thomas and I decide to go into the city today to avoid catching anything from Brad and Samuel. Before leaving I felt I needed to go back into the ICU, I had to do it now otherwise I don’t think I would have been able to. It was very hard and upsetting to see Zac’s bed empty and all the fantastic staff that took such great care of Zac while he was there. We also visited Joy, she is still very sick.

28^th July: Up early this morning just hanging around the apartment until it was time for Brad to take everyone to the airport for their flight home. When he returned we back into the ICU, Brad wanted to see everyone again before we left. While we were there Tom Rose the Chaplin, who was also great support the last few days of Zac’s life. We wanted him to write in the book he gave us to read Zac; Tom also gave me a poem:

For Zachariah Moore

As the sun went down

And the fireflies began to blink,

Christopher gently told Pooh,

“Promise me you’ll always remember:

You’re braver than you believe

and stronger than seem

and smarter than you think.”

“Oh, that’s easy,” Pooh replied.

“We’re braver than a bee and taller than a goose…or is that a moose?”

“Silly old bear,” laughed Christopher Robin.

“Just remember that even if we’re apart,

I’ll always be with you.”

Pooh looked up at his best friend.

“Yes, Christopher Robin.

And I’ll always be with you too.”

A.A.milne.

We left and went back to the apartment for lunch. After lunch I took Thomas for a walk down to the women’s hospital to cancel an appointment I had, also to meet with the midwives that cared for me before Zac was born and let them know what had happened. Brad and I then met up with Keith Bell. After dinner we thought Thomas needed to go back to the doctor as he seemed to be getting worse, they wanted to admit him for the night but we just couldn’t do it so we took turns of looking after him, he eventually went to sleep around 4am.

29^th July: Slept late today. We had to do a few things this morning before we returned to Sydney. Thomas getting better today. We met up with Alison Ballie who gave us some grief support counselling and an info pack of very helpful info. Zac’s post mortem was done today we won’t know the result for up to 6 weeks. Zac’s transport back to Sydney was organised, he will be leaving tomorrow morning. Spent the rest of the day packing.

30^th July: Finished packing, we waited for Zac to leave before we left. We left Melbourne about 10:30am. Drove through to Dad and Bev’s place, stopping at Tarcutta for a short visit with Bruce and Linda (friends from church). Arrived at Dads at 9pm. Not really in the mood to talk just wanted to go to bed.

31^st July: Thomas fell of the dining chair and now has a huge bruise on his forehead. We left Dad’s just before lunch in the hopes Thomas would fall asleep. Stopped for lunch at MacDonald’s in Goulburn. Brad organised with Phil to have all the baby things and bassinet removed form the house before we returned. We arrived home to a freshly cleaned house and a bunch of flowers. Our animals very well looked after while we were away. We were gone for 7 weeks and 5 days of an unforgettable trip.

1^st August: Went to the funeral home today to plan Zac’s funeral and burial service, the funeral will be held on Wednesday the 6^th of August the first due date given. It wasn’t as hard as I thought it would be. Brad and I saw Zac one last time today. I am so glad I saw him again I now know that he is in heaven and not here with us. Phil came over later that afternoon to plan Zac’s church and burial service.

3^rd August: Mum and Greg came with us to church for the first time since Zac was born. It was very emotional as we met with our church family, they have been so supportive since we found out Zac had heart problem. I told them I wanted them to wear bright colours, I didn’t want it to people to wear black, I wanted to celebrate Zac’s life.

4^th August: Went over the outline for the service with Phil this afternoon.

6^th August: Zac’s funeral. Our journey with Zac came to an end today. Mum read out a wonderful poem:

God’s Garden

God looked around his garden and He found and empty place

And then he looked down upon the earth, and saw your precious face

He put His arms around you, and lifted you to rest

God’s garden must be beautiful, He always takes the best

He knew that you were suffering; he knew you were in pain,

He knew you would never get well on earth again

He saw the road was getting rough, and the hills were hard to climb,

So He closed your weary eyelids, and whispered

“Peace be thine”

“It broke our hearts to lose you,

But you didn’t go alone, for part of us went with you,

 The day God called you home.”

Phil had done a wonderful job of the service at the church and the grave side. Mum, Greg, Dad, Bev, Julie and Ben came back to the house after the wake, they didn’t stay long as everyone was tried and emotionaly drained from the day.

Stay tuned for future updates.