Today we would like to introduce little Mr Cooper 😊 Thank you Cass Maree for sharing your story 😊 This is Coopers story: My pregnancy was fairly normal. I didnt even believe the results when they came in. I found out at 4 weeks that i would be a mum. I was placed in high risk from the start due to my mothers history with GD & BP issues with pregnancy. I had one early scare around 8 weeks where specialists thought i might have had cervical cancer but further testing turned up negative. I was working two jobs to pay off some debt before bubs arrived. I almost cancelled my bi monthly check up at 25+2 but decided to just go & return to work that friday night to finish my scheduling. Everything was fine until my BP was taken. 10 times with several different cuffs. A urine test showed protein. You are not going back to work the dr said, you are going to hospital. my parents drove me to womens assessment at LMH. I was told i showed signs of hypertension & faced being put on bed rest for the remainder of my pregnancy. One dr drew bloods & was confident id get sent home on strict bed rest. He even handed me papers to leave. Changeover occurred & a lady dr saw me 20 mins later & re drew blood. She said the prior sample had clotted & results were inconclusive she wasnt so keen to send me home yet. Next thing i know im being admitted with possible pre eclampsia & injected with medication to bring my BP down. It was 8pm friday 30/03/12 & nurses were doing a scan of my baby to see his growth. They werent happy. He had stopped growing. I was stressing, lying in a bed on labour ward listening to other women birth their babies whilst mine wasnt even fully developed. I was told i would stay at LMH until 32 weeks when they would deliver my baby. Within moments i was to have drips inserted, a cathetar & steroid injections. One drip was to stop me having an eclamptic seisure. The steroids were for my sons immature lungs just in case i was told. I was confused & scared. my situation kept changing which made me stress about the outcome. My BP at this time was 159/109. LMH can only care for babies born after 32 weeks. A group of medical staff were arguing in the corridor about my situation. I was sent in an ambulance at 1am to Womens & Childrens hospital in Adelaide as the magnesium sulphate wasnt reducing my BP. Listening to my unborn childs heart rate on the monitor was my only comfort. Despite everything his heartbeat was strong & stable. At 8am that same day i was to have a scan that would decide our fate. At midday a team of drs came in to tell us news that changed our lives forever. Your baby isnt growing. The placenta is dying. The only blood flow he is receiving is being sent to his brain. Your kidneys & liver are starting to fail. We have booked surgery for 1pm. Please sign these papers for an emergency caesarean. I was devastated. My body had failed my child. Too small. Intrauterine growth restriction. I remember being told that if i had to be cut in an L shape that id never carry babies ever again & that they would do everything to save my future pregnancies. I dont care, just save this pregnancy i begged. We were told based on the projected growth my baby had a 60% chance to survive. I wasnt able to prepare for this. We didnt get a NICU tour. No preparation. My unborn child didnt even have a name yet. At 1.47pm 31/03/12 my son was born weighing 560g (1 pound 2oz). Apparently he suffered seisures at birth. His chance of survival dropped to just 35%. There is nothing more scary than waiting for your baby to cry post birth when you cant even see them. My Cooper was brought over to my face before he was whisked away. I greeted my son & wished i could hold him. He opened his eyes for my voice. & then he was taken away. Next time i see my fragile baby he is hooked up to several wires & machines. The neonatologist told us that he fought hard to breathe on his own. So hard that they had to sedate him & ventilate him. Later that same night post op, it was explained what happened during surgery. The surgeon had to make the incision in my uterus higher than normal for a c section. Whilst i can have future children, i will never be able to carry a baby to term or have a natural birth as my uterus will rupture. But all i could think about was my baby, nothing else mattered. Cooper came off ventilation after about 10 days & then i would have my first cuddle with him. Slowly the drips were removed one by one & we opted into the respiratory study. Cooper was put on CPAP. & we hated it. He tolerated moments without it on, breathing on his own but would tire quickly. The CPAP covered most of his face & head. It damaged the bridge & septum of his nose. Head of neonatology offered to take Cooper off CPAP & put him on optiflow. Sadly we had to cease the study to do this. Now only one tube covered his little face & he was more comfortable. Cooper had to have 8 blood transfusions during his hospital stay. He also developed cholestasis. Cholestasis is failure of bilirubin secretion, resulting in conjugated hyperbilirubinemia and jaundice. There are numerous causes & to this day, it was never identified what caused Coopers cholestasis. Specialists resulted the TPN & prematurity was the cause but it was never confirmed. Cooper had to have frequent liver function tests as the cholestasis affects the livers ability to process toxins, fat soluble vitamins, minerals etc. my son struggled to gain weight & for a child born the size of a tub of butter, it was concerning. Biliary atresia is progressive and we were advised they had to start treatment of symptoms to protect his liver otherwise he would develop cirrhosis which can be fatal in babies. Cooper was put on ursodeoxycholic acid & a cocktail of vitamins including A, D, E and K as well as high calories added to his milk. His tummy often became distended & NEC was always the fear but it is also common in babies with cholestasis to have distended tummies. Slowly Cooper was weaned off of oxygen. Once in cot oxygen he was able to transfer from NICU to Special care around 11 weeks into our stay. I was to also discover through one of my own check ups that my own liver was damaged from the Pre E. i had to be careful what i ingested & followed up for the next 8 months. Cooper had two surgeries during his 120 days in hospital. Bilateral inguinal hernias. His bones also became brittle from the cholestasis. His arm was fractured by me holding him. I was devastated. My sons bones were so brittle a touch could fracture them. He developed retinopathy from oxygen which slowly went away. Every day was hard but nothing like the day i was changing his nappy & he went completely blue. You never want to be the person who the code over the PA system is about. He aspirated liquid into his lungs & thankfully avoided a return NICU. Cooper couldnt maintain his temperature even well after he no longer needed the humidity crib. He had to have a special bed with a heating pad. We called it his king size suite. Discharged 31/07/2012, two weeks post his expected due date. We spent 120 days in hospital. Cooper came home on round the clock medications & supplements for his liver. I even had to wake in the night to give him medicine. We had to have regular LFTs to monitor his levels (blood tests). Normal bili levels are
Posted on: Sat, 15 Nov 2014 00:07:07 +0000
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