Lily Joy


On april 22, 2013 i showed up for my scheduled c section. Being my third c section i was feeling prepared but nervous for the pain that i knew was to come. Never in a million years was i to know about what would unfold that day. The doctors came to get me early as last time i had alot of trouble with the spinal block (6 attempts before they got the right spot) so as i went to the operating room my nerves were at an all time high. I got in the operating room sat on the side of the bed ready for the spinal block and began reading signs around the room to distract myself. Lucky enough first time was a charm and i was now lying down on the table waiting to meet my little prince or princess. My husband entered the room at i was given oxygen as i was having trouble breathing. Before long my wonderful obstertrician (who had also delivered both my boys) began working on me. Things were taking alot longer than normal and the doctors then told us that i was bleeding more than usual and everything became very chaotic in the operating room. After what felt like a life time of people running around my doctor announced its a girl! I immediately began crying as i was so sure i was having a boy and was so excited to have a baby girl. I then heard my baby girl make a small cry and my husband left my side to cut the umbilical cord. I watched as my husband walked backwards with a look i have never seen before. I then saw the midwife and nurses go for a box with a blue lid under where my baby was and i suddenly remembered all those signs i had read earlier and the one that said "emergency airway kept in blue box" or something like that. My world stopped and i remember screaming whats going on. My husband just looked at me and someone said "your baby is having trouble breathing, we are working on her -everything will be ok'. I then watched as they were preforming CPR on my newborn baby girl. Soon she was brought over to me looking a bit purple i told her i loved her and the midwife ran out the room with her in his arms, my husband followed. I was left there on the operating table crying, unable to breathe.. my world was crashing around me. I could hear in the corner the anesthesist on the phone whispering finding out how my lily was. I was told that she was still having trouble breathing and they were working on her. I was then moved to recovery where i continued to cry my eyes out. I remember asking the nurses if my baby was ok. They then gave me the routine everythings fine you will be back in your room soon. They obviously had no idea what had happened and i can remember screamin out 'can someone please call and find out if my baby is alive or not' everyone in recovery began staring and the nurses rang the nursery and still had no answers but said they would rush to get me up there as soon as they could. After a long 45 mins the orderly came to take ne to my room. He wheeled me out the elevator and into the ward as we went past the nursery i could see my husband standing over a baby hooked up to so many machines. I was histerical so the nurses decided they would wheel my bed into the nursery so i could be with my little girl. As my bed was put next to hers i could just see her lying there in her nappy with monitors covering her and this mask thing around her head into her nose (i later found out this was called CPAP.) I could only reach her toe but at least i could touch her if only for a little. A doctor then came over to me and introduced himself as a neonatologist -i had no idea what that even was. He told me that her condition was serious and that she needed to be moved to intensive care by ambulance asap. The moments that followed were a blur.. before long doctors and nurses came in and said they were from NETS the team who would be transporting her to intensive care at liverpool hospital. I was then given a moment to say goodbye to my baby and was wheeled back to my room. I sat in my room waiting for them to also come and get me to take me to the same hospital as my daughter was now in. As the hours went on i was more and more anxious and then came the horrible news that liverpool hospital maternity ward was full and there would not be a bed for me. My heart broke in 2. How could i stay in a different hospital to my baby daughter. What if i never got to see her again. My husband stayed with our baby sending me photos and giving me updates and my hospital set up a bed for my mum to stay with me so i was not on my own. That night was long and filled with tears. I could hear other babies in the ward crying all night but i focused on expressing milk. It would take me almost an hour to get 10 mls but i didnt care it gave me something to focus on and i felt like atleast i was doing something. As the next day came there was no change with my baby girl she was still unable to breathe on her own and in intensive care. The nurses got me up and washed and dressed. I had some family visit and my 2 boys jamie 3 years and tyler 1 yr came to visit. It was a very sad feeling to have all these visitors and no baby. As the day went on i was getting more and more depressed that i wouldnt get to see my baby. The hospital along with my obgyn then came up with a plan that i could get three hours leave a day to go visit and then would have to come back. I was so excited three hours was better than nothing. The hospital prepared the paperwork and i was released for a short period at my own risk they gave me the warning and risks involved with leaving just over 24 hours after my csection. I then got in the car for the five minute trip from sydney southwest private to liverpool public the drive had me screaming and crying in pain but as long as i got to see my daughter i didnt care. Upon arriving at the hospital my husband told me that it was a bit of a walk to get the the NICU he then tried to find a wheelchair but as i was not a patient at the hospital he was unsuccessful. I began to walk the 4 min walk took me over 40 mins it was excruciating but i didnt care i was making it to my baby. When walking into the nicu it was a whole new world like nothing i have ever seen before. The sights and sounds were so scary row after row of babys on machines. as we went past row after row eventually we got to the second last row I could see a nurse doing paperwork standing over a baby and my husband then said that's our baby. I remember thinking how strange I can't even recognise my own baby. she was hooked up to so many machines and in this little Cribb but I had only seen in movies. I sat down beside her and put her tiny hand on mine.I could not believe that she was 1 day old and I was finally touching her hand for the first time. I was so happy to be with her but the tears could not stop rolling down my face. the nurse then introduced herself and told me that I would be able to have a little hold and hopefully that would help bring my milk in.I sat in a chair as the nurse organised all the cords and wires coming from this tiny baby and then put her in my arms. it was the most beautiful feeling ever I was finally holding my baby girl. I kiss her and told her over and over again how much I love her. after a few minutes past the nurse then told me but she would have to go back into her crib.I spent about half an hour with her and then you I would have to head back to my Hospital.the hospital organised a wheelchair so I did not have to walk all the way back. As my husband will be away I remember thinking please be here tomorrow please make it through the night please don't leave mummy. I cried all the way out of NICU, to the car and all the way back to my Hospital. the next day came and I was so excited to get up I go see my baby girl again. this time when I got to the hospital the doctor came to speak to us he told us that as well as being born with respiratory distress our baby girl was born with a heart condition called patent ductus ateriosis. he said this meant something in her heart had not closed when she was born and if you did not close on its own she would need surgery. my heart broke some more looking at my baby girl thinking what did she do to deserve this. I once again set aside my daughters ccribholding her hand telling her I loved her and singing her songs. before long my time is up and I had to get back to my Hospital. it was still just as hard to leave as she was not stable enough and I did not know if she would be there tomorrow when I came to visit. that night was especially hard when the nurse came to do her rounds I burst into tears she said what was wrong I said to her I need my baby girl the nurse then sat with me for ages why I cried my heart out I eventually cried myself to sleep. after a few days of the same routine I visiting my daughter for a few hours everyday eventually she came off CPAP. and we got the good news that she would be moving back to my hospital soon. on the Friday afternoon at 4 days old we were told tomorrow was the day. the next morning I woke up so excited got dressed and waited downstairs at my Hospital for the ambulance to arrive with Lily inside.she was taken to the special care nursery where I was told she would be admitted.she was now able to breathe on her own however was not strong enough to feed so she was still being fed through a tube. for the next 4 days she remained admitted to the special care nursery. I managed to finally breast feed her at about a week old.after a week and a half I was told I could finally take her home.when we got home I was terrified as I have never spent a night with her on my own I always had a nurse helping me and telling me what to do. when we got home I thought we were finally in the all clear however at 2 weeks old Lily spent the day in hospital again with severe vomiting. after spending the day in the hospital we were back home again. 1 week later at 3 weeks old I woke up to Lily beside me turning purple she was not breathing. I picked her up and began tapping her on the back I could not remember any of my first aid training and have no idea what to do. I rang triple 0 and was told an ambulance is on its way. Lily spent the next 15 minutes not being able to breathe properly. the ambulance arrivedand Lily was stable and was transported to hospital she spent the next three days hooked up to an oxygen monitor to keep an eye on her oxygen levels as they kept dropping. when her levels began to stabilize we were discharged and once again at home with our baby girl. the next week we had our appointment with the heart specialist to see if her PDA had closed.we were so excited to get the all clear from the heart specialist that her PDA had closed naturally and no surgery was needed. however in this visit we discovered that she had a pulmonary stenosis. as her older brother and myself had already been diagnosed with this it was a big shock. the next few months were filled with doctors check up and baby health clinic check ups to keep an eye on her and make sure she continue to put on weight and remain healthy. by 3 months old we were feeling that's the worst was behind us. that was until she got a cold. 1 day she became very tired was unable to feed and something just wasn't right with her breathing. we took her to the hospital wher we were told they would admit her observation. that night she was placed on high flow oxygen as her breathing was not very good. the next day the pediatrician came around an ordered a chest Xray we then found out that one of her lungs was filled with pneumonia. The results also came back from her test they had done the night before and she was diagnosed with meta pneumo virus. the nine days that she spent in hospital she was on oxygen, was now being tube fed by a machine, and was being fed fluid and antibiotics through a drip. after 9 days we were finally allowed to take her home. in the two years since she has been born Lily has had many doctors appointments and tests.she often has obstructive breathing and holds her breath and has had many small apnea episodes. She has had 7 or 8 admissions to hospital with breathing difficulties when she gets a cold or the flu. And is currently on the wait list to have surgery to fix a large upper lip tie and has been diagnosed with some mild developmental delays. Lily however is the happiest most friendly little girl your will ever meet. Everything she has gone through has made her stronger. She came into this world fighting and continues to takle any obstacle in her way

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