Our first baby, the beautiful Nathan Brian Garcia, was born on November 3rd 2002. It was an excellent labour, natural with my waters breaking spontaneously. Very spontaneously, as Nath was actually five weeks early!!! I had bled on and off for the first three months of my pregnancy but after that the pregnancy was uneventful except for the daily bouts of vomiting right up until the birth.

When Nath was born, he was blue. But he scored 9 on the Apgar scale and five minutes later scored a ten. He was experiencing respitory distress, and the paediatrician at Osborne Park hospital decided to send us to Perth children's hospital, PMH, just to be sure. I accepted this well, but as he was taken away and I made my way back to my room with an empty cot awaiting me, I began to cry. I was sharing a room with 3 other women all receiving visitors and I felt quite sad, but was reassured that tomorrow I would be with Nathan.

The next day, I moved into PMH right next to the Neonatal unit. My husband Brian and I were able to share a room for what we were told would be two weeks. Nathan was diagnosed with immature lungs, was intubated, with wires through his belly button, an IV, NG tube and would need some surfactant to help his lungs develop fully. His breathing was still very laboured and he wasn't responding to the surfactant as quick as they had thought. However, after 4 days he had been extubated, and was now recovering well. His only problem now was Jaundice so under the lights to sunbake he went. Doctors were surprised how well he was responding to the fluro lights and commented he was doing extremely well. On day 5, Nathan's sats had begun to drop to around the mid 90s to low 90s. Being the mother, I was concerned but was reassured by the nurse that it was just the stupid sats probe and she would get another one later. Brian also commented on day 5 that Nathan was looking grey, but was told it was just because of the fluro lights. Brian and I were starting to feel relaxed, so off we went down the street to get photos developed at a near by chemist in Subiaco. As we arrived back into the Neonatal unit, a young nurse ran up to us, panic stricken, saying she was just about to start looking for us as there was a problem with Nathan. The nightmare had begun. I remember rushing in to see my son and about 10 people were around his incubator and as I ran up to him, shaking and panicking, 2 nurses pulled him from the incubator and onto an ohio. He looked like he was dead. He was grey and lifeless. Adrenaline ran through my body and I was inconsolable. There was confusion and Brian kept asking what happened. They explained he had crashed in a heap and they thought it was an infection. Just at that moment, a parent came up to me and told me my mum was on the phone. I ran away from Nathan and went into the parent room where the phone was. I started crying saying I didn't want my son to die and I was shaking like a leaf. I couldn't believe what was happening. Mum told me to calm down, take a breath, and put the phone back down. She told me sternly to go back and see what was happening and to come back and tell her. I went back out and there was a cardiologist taking an echo of Nathan. It was cardiac!!! I was actually relieved as my husband had open heart surgery when he was 2 days old and he was alive so I thought they can FIX this!!! I went back on the phone and was completely relieved. I hung up and Dr Dorsonga, the head cardiologist in PMH, took Brian and I into his office. I remember his exact words.

"The news is not good"

We then sat through the worst meeting of our lives and were told of the surgery in Melbourne. He told us to seriously think of both options...compassionate care and Melbourne. We had decided straight away it was Melbourne. My husband was fighting back the tears. Dr Dorsogna was very good to us and gave us the worst possible outcome but also told us there was another boy living in Perth who to look at him you wouldn't know he had anything wrong with him. I later found out that was little James Crisp!!!

We had to wait 24 hours. Nathan needed to stabilise before we even thought about travelling. He DID!!! I was so scared though I remember saying to my mum I thought Nathan would die in Perth. I thought I could feel it. I was wrong.

We boarded the Qantas domestic plane on Sunday, six days after his birth. The first row of seats were stripped to fit all Nathan's equipment. Our lovely nurse Kylie and the doctor sat right next to him. Brian and I sat 6 rows back. We knew there was a risk flying as all the cabin pressures changed the pressures of his pumps and that meant the Prostin. Kylie was very good though and was a star!!!

As we descended, Nathan's pumps all alarmed. Kylie was up fixing it all but I couldn't bear it. I buried my head in my jacket and held onto my husband's arm so tight.

We finally landed in Melbourne and the ambulance was there to greet us. Many people stopped and stared. I was a WRECK!!! Bri and I caught a taxi. My fear was the ambulance with Nathan in it would drive past us with sirens on. God I was so worried about my sick little boy.

At last we saw our boy in ICU. He looked really good. I didn't know any of the nurses and was so depressed that they wouldn't look after my baby well enough. What a fool I was. These people were to become my sons lifeline for the next 4 months.

We met Dr. Brizard and were told everything about the operations etc, and that Nathan's operation was scheduled on Tuesday morning. I had 2 days to wait so I read some of the posters on the wall in ICU. I came across a poster of another hypoplast by the name of Noah Amarant. I read his lovely poster and by the end of it I realised what a long road we all had in front of us. Tuesday came and in he went for his Norwood. Dr. Brizard rang on the mobile and told Brian the operation was very difficult and Nathan's tissues just tore every time he tried to sew his heart. Brian thought he was dead but then Dr Brizard said in his fantastic French accent..."but he is okay now" Brian was relieved but I wasn't. I had read the poster. I had the knowledge. I was scared.

During the next 6 weeks, Nathan battled for his life. He was extubated and reintubated 5 times and developed NEC. His tummy was like a balloon, green to black bile was coming out of his NG tube and he didn't poo for 4 weeks. He was going to have to have an operation if the antibiotics didn't fix it but thank god they DID!!! He suffered three blood infections, three different irregular heart rhythms (SVTs, Bigeminies and ectopic). He needed his external pacemaker numerous times. His diaphragm was damaged in theatre
so he needed to have a plication of the diaphragm and hopefully his breathing would SLOW DOWN!!! Nathan was a train, chugging away at about 100 breaths per minute, severely tachycardic and tachyphneouc. At one point Dr Penny and Dr.Brizard feared he would not live, although Dr Penny only told us this when he was well. Nathan's heart was failing but would then get better. Nathan's pupils were extremely large and sluggish and so 2 brain scans were ordered but nothing was shown to be abnormal. On and on our journey went  with ups and downs. I was so terrified all the time that I used to make Brian call ICU because I could not bear to hear bad news every time I called. I used to go to bed only when I was very tired because I hated waking in the middle of the night and being alone with my thoughts and fears.

Finally we were told Nathan would probably not get off the respirator until his BCPS (Bi-directional Cavo-Pulmonary Shunt or stage 2). The next few days Nathan deteriorated with his sats going into the 60s. He sounded snuffly so Brooke the nurse decided to aspirate him. She was so shocked when she aspirated milk!!! And then Nathan cried and we all HEARD him cry. A doctor was called and it was revealed that the last doctor to  reintubate him actually hadn't put the respirator into his lungs but it was resting around where the CPAP lies. So Nathan had been on CPAP for the last 3 days without any of us knowing. I was on top of the world. My boy was on CPAP!!!

The next day Nathan was deteriorating again with sats going into the 50s. The nurse again aspirated him but couldn't get down as there was a blockage. The doctor on duty decided to pull the tube to see the problem. The problem was a 4 inch boogie from hell which was blocking 80 percent of the tube. Nathan breathed a sigh of relief and just looked around completely stunned that he could get air into his lungs. My poor baby!!! But now here he was, breathing on his own for the first time in his life, 7 weeks after birth. I was so excited, I couldn't stay away from ICU. I visited him with my dear friend Rose Mcgregor at 2 in the morning just to see his face. Brian and I made dear friends with Aaron and Rose. Their baby Robert was next to Nathan in ICU and was dying. Dr Brizard was going to try one more op on Robert and the operation was completely successful and Robert is now at home and is such a happy baby. Anyway, I was back to see Nath at 5am and just couldn't believe how handsome he was!!!

7 West was the new home for us for the next month. We met Otis and Chanice, fellow hypoplasts. They are both home and happy now. 7 west was a dream!!! Crying babies, baths, cuddles and breastfeeds. Nath crashed a few times. Actually, 2 days after we got there, we back to ICU for a night, but then we went back to 7West. Another time he crashed when Brian and I were in Highpoint shopping centre. Adrenaline again flooded through my body and when I arrived at RCH I decided I would run up the stairs and avoid those LIFTS. So off I darted in a dramatic run through the hospital, up to level two, level three and that's where I stayed until the lift came to pick me up and take me to the seventh floor. I was so unfit I couldn't do it. Nathan had bled from the bowel and had a cold. It turned out he had allergic colitis to the added protein in his milk.

Nathan was discharged for 3 weeks and it was bliss. As soon as he was discharged, Bri, myself, Nath, my sister Sarah and best friend Michelle went shopping. I felt like I was in heaven. Each minute that passed I fell more and more in love with my little tiny man.

Three weeks passed without a hitch until we had an appointment with Dr. Penny. He noticed Nathan was slightly cyanosed (I must have gotten used to it because I didn't) He was immediately admitted to 7West and a cardiac catheter was organised. Nathan sailed through the cardiac cath, but it was shown that his conduit (new Norwood) was narrowing, so the BCPS was scheduled for Monday morning.

Sunday night came and I sat in the ISO room with Nathan and began to RELAX for the first time!!! I knew we were almost there and I needed a packet of tissues to dry my eyes. But WAIT!!! I jumped the gun. Nathan had one more trick up his sleeve. Ten hours before his operation, Nathan needed a met call. I think it used to be called code blue. Anyway, it was an emergency. I watched on in horror as his sats went down to 37 at the same time his heart rate went over 200. Well, it was changeover time for the nurses wasn't it, so ALL the nurses ran to this ISO room. I was again beside myself, so much so that I collapsed and a nurse caught me. Nathan was rushed down to ICU for the night and guess what!!! He was fine. What a monkey.

The day of his BCPS came and went in a flash. Nathan was extubated about 20 hours after surgery and out of ICU in 2 days. We were discharged in a week and spent a week in parent accommodation. The plane ride home was one of the sweetest moments of my life.

Now we have been home a month!!! Nath is a far cry form the sick little boy in hospital. He smiles constantly, is completely breastfed, has started solids, shakes his rattles, and has just started the first signs of rolling over. Developmentally he is catching up incredibly fast although he is only newborn size. But his heart condition doesn't play a part in his every day life. There's only drugs in the morning and that is it!!! His checkups are at the moment once a month. I am just like any other mother with a baby dealing with the everyday things like changing nappies and settling my bubby. I don't know what the future brings for Nathan, but then again, I don't know what it brings for you and me either. We are all here today, so I plan to treasure every minute of it, no matter what the circumstances. Nathan has shown me to appreciate life and live today!!! I certainly do!!!

Monique