Joel - By Lee Schaeche
On Sunday 3rd Feb 2002 at 30 weeks gestation, I was flown from Bunbury by RFDS to King Edward Memorial Hospital Perth. At 8.30 pm, I was rushed into theatre for an emergency caesarian due to pre-eclampsia. Once my Craig had arrived my blood pressure had come down and I was feeling a lot calmer myself, when a Dr walked in and told me their was a young lady who is having a baby at 24 weeks gestation and her baby had much less chance of survival. Craig & I agreed I was ok and that they should go and help her.
Then at 10.30pm I was wheeled back into theatre when the most awful thing happened. I felt the incision. By that I mean I FELT IT. It burned, it stung like crazy, I was crying and screaming. The Anesthetist and Surgeon agreed that my epidural had not been topped up enough so they put me under a general anesthetic.
At midnight I woke up in the Adult Special Care Unit asking for Craig who was right outside asleep on a chair. He came I and said honey you should see our boy, he is so cute, he doesn't look like an alien at all. He has the cutest little button nose like you and your cupids bow lips.
I woke up the next morning itching to see my boy. A nurse had to find Craig who was sleeping in our car because no-one had organised any emergency accommodation for him. Then at 10.30 Craig wheeled me down to the Special Care Nursery to see our boy.
I don't remember a whole lot about the first 4 days or so, due to the horrible experience and all the pethadine. I do remember now thinking, I don't feel like a Mother. This isn't how it's supposed to feel. You look at the baby and you say to yourself is he really mine.
When I held him all I could do was cry.
Joel was 10 weeks premature, weighed 1305g, 2lb 14oz. He was 40cm long and his head circumference was 27cm.
I am told he is the littlest CF child born to date. 
Mum and Dad arrived on day 4 from Victoria and disappeared with Craig for hours. I was so nervous, but then they showed up smiling and in walked my brother Glenn. All I could do was cry. Glenn had left his wife and 2 kids at home to come and see his baby sister.
We all headed down to see him and they all asked well, what did you call him? We just looked at each other and said Joel. Joel Raemond. Raemond after Dad (PA) Noel Raymond, spelt Rae for Craig's Mum Estella "Rae" who had died at Christmas just 6 weeks earlier.
Joel was going well until 2 weeks of age. He had been moved into an open crib which is such a good feeling after looking at your baby in a humidicrib for weeks. You can touch them whenever you want, and kiss them when they're in an open crib. I had returned from lunch with Mum only to find Joel back in a humidicrib.
The nurse explained he was not maintaining his temperature. I didn't leave his side all day. I called a nurse as I was alarmed by Joel's sickly salty taste when I kissed him and his smelly oily looking poos. I think she knew straight away what it was.
The Dr was held up so they convinced me to go and have dinner with Mum. We went to a lovely Restaurant in Subi for tea. I had barely eaten half and just said Mum can we please go back something is wrong with Joel.
When I got back the nurse had been trying to ring me on my mobile which was flat. The Dr was waiting for me. It took quite a while for him to tell me, he was quite adamant Craig be here. But Craig had returned to Bunbury to go back to work. We were moved into a bedroom right next to the nursery, I was white and trembling. Mum went and told Dr Smythe that Craig was on his way and she didn't think it would be good for me to wait 2 1/2 hrs not knowing what was wrong with my still high blood pressure.
Dr Smythe said "We think Joel has Cystic Fibrosis” I had no idea what it even was. Mum had tears explaining t to me. The Dr didn't elaborate much on what Mum had said.
My brother Steven and Dad had trouble finding Craig when he turned up at Steven's house. Steven said he was white as a ghost and couldn't drive. He hadn't been told what was wrong, just that something was wrong.
When Craig walked back into KEMH I couldn't hold back the tears telling him Joel had CF. He couldn't believe it. Joel was doing so well. We saw some people from PMH Respiratory Medicine the next day who explained what the next 4 or 5 weeks held in store for us.
Craig returned to Bunbury the next day, which upset me like hell. Little did I know he had received a letter from Worsley stating that if he didn't return to work he would be sacked. He returned to PMH every Friday night and went back to Bunbury every Sunday night.
I was moved to PMH and the next 4 weeks went from a basket case to practically a nurse. I learned to tube feed Joel with a syringe and encourage him to drink 5mls or more from a baby bottle once or twice a day. By week 6 he was drinking 35 mls.
I was learning as much as I could about CF and physio when on the Friday the Dr entered and said I could go home Sunday or Monday. Later that day a good friend of the family turned up with her boy who was born 9 days later. I said "Emma, you didn't have to come all the way up here to see me"
They think Jayden has Cystic Fibrosis too was Emma's response. I was devastated. Emma was admitted 2 floors below and once they had done the slat test she came up to me in tears. Right then my whole weekend was dedicated to Emma and Jayden. No sooner would I return to the special nursery and Emma would come up to see Joel or me. At one stage the Respiratory nurse co-ordinator came in to talk to both of us. I had just finished saying we will be a great support to each other when Liz explained to us that it would be a lot better for the boys health wise to not have any contact. We bawled! At least we had the phone!
It broke my heart to leave Emma on the Monday. I left her with my CD walkman and the CD 65 Roses by the Wolverines. Luckily Emma's stay was only short, 2 weeks I think. She learned all about CF and physio and was home before I knew it.
Ok so we broke the rules. We got one photo for David and Goliath. I mean Joel and Jayden.
The first year was so hard. Listening for crackles in the chest, how many pancrease, all the medications to remember etc. From 6 - 18 months Joel vomited on and off and got so constipated once my Paediatrician said he was fully compacted. A few days on laxatives and suppositories cleaned him out. I asked Dr Hu about the benefits of Soy and he said "My word" and also gave me some MCT oil (Medium Chain Triglyceride) which is easier to absorb than long chain tri's. Joel was so much happier days later, his eczema cleared up, his appetite improved, but then I had an appt with my usual Paed who insisted I put him back on cow’s milk. The very next day he was bound up again and vomiting. I didn't need anyone’s advice on what to do then. I switched him back to soy and he's been on it ever since.
Shopping for me was a real adventure. I would spend an hour in front of the yoghurt fridge checking all the nutrition information panels for the fattest yoghurts. I jotted the names of all the fat products down in a note book ready for the day. At 19 months Joel had another bout of vomiting so I drove up to PMH where he was admitted. I asked the Gastro Dr if they could do a Gastroscopy. Dr Mews talked it over with me and it was decided not to do it. After 2 weeks nothing was being done so I returned home to Bunbury.
A week later he was sick again so I rang Dr Mews and she booked the Gastroscopy. We drove up for Joel's day procedure and it turned out he had a swollen esophagus from all the vomiting he had done. That is why I couldn't get him onto solids!
Joel was put on omeprazole, acid reflux medication which regulates the acidity levels, which in turn makes his Pancrease work more efficiently.I then discovered natural things like Coconut Oil, Soy Lecithin, Almond or Hazelnut Meal and LSA MIX (Linseed Sunflower and Almond) Sounds hippy I know, but the next 3 months Joel put on over 600g per month. Marina my Dietitian was ecstatic when I told her.
Joel did well for so long until I was 33 weeks pregnant with Jeslyn. I had asked for his yearly bronchoscopy to be brought forward to before the baby was born rather than travel up and hang around PMH with a newborn for the day or what could be two weeks. Luckily I did. It turned out Joel had pseudomonas. He hadn't even shown signs of sickness yet which was lucky. It was explained to me that it was at like a pilot light stage and if he'd gotten a cold soon it would have taken off and started doing damage.
I returned to PMH with only 7 weeks until the baby would be born. I was feeling crappy and thought if one more person says boy your belly has dropped overnight, that I was going to have her right then and there. I shuddered to think she could be born at King Eddy. I first thought to ring St John of God in Bunbury to see if t were possible. I was working on front reception there until I had Joel. I spoke directly to the nurse Manager Maureen who said they would love to have Joel and his PICC line would not be a problem. I rushed down to Respiratory medicine and spoke to Dr Stick who agreed it would be ok to send Joel to Bunbury with his Picc line and in some Tobramycin.Well blow my hair sideways. I woke up that Saturday morning and Joel's picc line had broken off in his arm. He was to return to theatre, he was, he wasn't, it wasn't urgent, it was. They had trouble with this picc getting it to turn at his shoulder and thought a central line would be better. I was like just do it. Craig got he train up, at 4.50 my nurse Geoff said right, Joel's drank plenty of water, he's doing fine you can go, I was elated. I drove to the train station and picked up Craig who heard this little voice say "Daddy" form the back seat. We got on the freeway and Joel vomited all the way to Baldivis. We stopped and gave him some water and I cuddled him until he went to sleep.
We were admitted to the Regional Hospital for reasons that couldn't be helped at St Johns, but I was just glad to be home. Joel finished his course of antibiotics and we were home on the Friday. On the Sunday night Joel coughed and coughed so much there wasn't a 2 minute break in between coughs. I took him to Emergency and he was admitted to St Johns. At 3 am, we both couldn't sleep and I was wretched so I rang Craig who came and got Joel to sleep and tried to take me home. The Midwives tried to stop me on my way out but I wanted to go home to my bed.
The next night they grabbed me and admitted me. I didn't get to see the Obst Dr Jewell that night, he was delivering twins. I saw him Tuesday night and he decided I would have a caesarian at 9am the next morning.So now I know how it's supposed to feel when you have a baby! And that's all I could say. Isn't she beautiful, and this is how it's supposed to feel. What a high. Nanna C walked Joel up to my room to meet her, but he was a bit overwhelmed by the amount of people in the room. The next morning I asked if I could wheel her down to see him, and we did. He said "It's Sissy, It's Sissy, Sissy's here" and the name stuck.
Joel is now 4, and I think I'm a 3/4 full book on CF, and a full book on Joel. I have made a pledge to help the Mum's of Newly Diagnosed take some of the guess work out of feeding and caring by starting a site, which one day I'll get round to adding all the piles of information I have saved in word documents regarding feeding Joel at different stages in his life.
Joel has started Kindy at Carey Park Primary school and loves to tell people "I go to Kindy, on Thursday and we have fruit, and apple medi's!" (of course he has cream or yoghurt with his fruit!).
