September 2008: The Story So Far ....
Samuel's Heart Benefit update
On Wed Jun 4 at 11.20am (two weeks early), Samuel William Shepherdson was born at the Women's & Children's Hospital. I did apologise to Daryl (Samuel's Daddy) for stealing his thunder as it was also his 43rd birthday, but what better present to give him than a second son - a little brother for Thomas (who was 13.5 months old at the time). By the way, I am 40… with two little babies… and wishing that I had the energy of a 20 year old!!! Samuel was born by an emergency caesarean section - in hospital terms it was a Code Green! His heart rate would drop to around 78 bpm every time I had a contraction. The normal rate is between 120-160 bpm. At the time when they raced me off to theatre (in the fastest pace possible) his heart rate dropped to 48 bpm and stayed there for four minutes. Had they not been so quick to react, he would have died.
As I lay on the theatre table I watch the doctor cut me open and deliver Samuel in the reflection of the silver theatre lamp above me. They even let Daryl stand up and watch. After we both had a quick hold of Samuel, the midwife and surgeon told us that he was a bit floppy and needed to be looked at by a doctor. From there I was wheeled into the recovery room and Daryl had to go home to be with Thomas who was being looked after by his big sister Rebekah (Daryl's 14 year old daughter) and his 75 year old mother, Edie.
For four hours I lay in recovery, waiting to hear what was wrong with him, but no one came to see me and my midwife was legally not allowed to tell me anything. Eventually, the midwife in the recovery room let me use the phone to call Daryl. I was crying and going out of my mind because I didn't know what was wrong with our newest son and no one was coming to tell me anything. It was then that Daryl told me that Samuel had been diagnosed with Down Syndrome - or Up Syndrome as we now like to call it. For those of you who may not know, the surname of the man who discovered the condition was Down, which is a bit unfortunate when you think about it, but I digress.
Eventually my midwife Jenny was allowed to bring him into me in a humidity crib and I lay there crying, blaming myself for making a sick little boy and hoping that he would forgive me one day. It's amazing the gamut of emotions that someone can go through when they find out their little baby is not well. At our age, we hadn't planned on having another baby, but I didn't even know I was pregnant until I was 18 weeks along. I just thought that I was putting on weight from all the secret stashes of Raspberry Bullets that I had been eating!
Samuel was sent straight to SCBU (Special Care Baby Nursery) so I wasn't able to have him in my room with me. At first I was really worried that I would not be able to bond with him, but after three days of feeling like I was losing my mind in how I was blaming myself, it was no problem at all and fell in love with him as much as I did with Thomas. I was so grateful for the hoards of visitors that I had because it helped to distract me and stop me from worrying so much. I will always be grateful for that. Instead of handing him over for a hold, they would wheel me up to SCBU and I would introduce them to our newest edition. I really wanted him to be in my room with me, but the midwives were fantastic in both looking after him and teaching me how to feed him, through the naso-gastric tube and breast feeding. It's an entirely different technique to feed a Down's baby who has a long tongue and low muscle tone.
Anyway, three days later they told us that he also has an AVSD: Atrioventricular Septal Defect. What this means is there are two holes in the septum; the muscle that divides the two sides of the heart. What this does is send some of the oxygenated blood back to the lungs instead of to the body, pushing out the blood that is still needing to be oxygenated. This means that his oxygen levels are lower than normal, his lungs fill with excess fluid which requires diuretics to help move along, his breathing is laboured, he tires easily, and needs to be repaired by surgery which only happens in Melbourne.
Robert and Jane Childs have always been like a second family to me and have been adopted as the non-biological grandparents to both Thomas and Samuel. I've been an active member of SCALA since 1992 (I think); performing duties as a member of the Board Of Directors, MC at on performance nights, judging in the FOOM Song Competitions and radio announcer when we ran SCALA On Air on Coast FM. It's a fantastic organisation and the reason why I have continued to write and perform my songs over the years - besides the pure love of it of course!
Although some of the costs are covered by the government, others are not, and parents who have to travel to Melbourne with their babies are often out of pocket. Knowing this, Robert decided to help raise some money for us to help buffer those costs and set about organising "Samuel's Heart Benefit".
Between us we decided that everyone who would play on the night would be people that I have performed with in the past. So, we went about enlisting the talents of some fellow SCALA Members. Unfortunately, Corey Stewart was out of town at the time, Jo Stutley was unable to play on the night, and although Martin Dodd also came along, he had a festered finger from a splinter and so couldn't play guitar - all of which was such a shame. But, for those who were available, it was decided that they each play three of their original tunes.
Realising how many people intended to come along on the night, Garth, owner of The Joiner's Arms Hotel, moved the stage to where it could be seen by both the performance area and the bar. It was a good thing too as the evening was bigger that even I could have imagined. The place was packed almost to the rafters and filled with people who had come along to support my little boy - including quite a number of people I NEVER expected to see. That was the first of many unexpected surprises.
So, the night began with me playing a song by myself, although I did have Ms Adrienne Sheerin joining me on her trusty snare and brushes. I was then joined on stage by Sarah Clifton where she sang harmonies to a song that we wrote together called Stomping Ground. After that, I handed my beautiful Maton guitar, Mia, to her and together we sang a song she wrote about me called Bits In The Butter. It's a bit of a tongue-in-cheek song about being 'anal in a bit of an obsessive compulsive way' that everyone got a laugh out of.
From there the wonderful Fred Chiapolino jumped up on stage. I did harmonies to Where Are Your Thoughts Tonight and then left Fred to do two more tunes. If you had listened closely, you would have heard both Caroline Perks and I singing our harmonies from the audience.
Up next came No Friends For Rolland Rommany (Caroline Perks and the equally talented Ziggie), closely followed by Casey Finlay (ex-Krusader Rabbit) and her partner Ricky Hooper.
Next on stage was the tall and lovely David Robinson. I sang one of his three chosen songs with him called Here I Am. There's actually a guitar riff that I would normally play to that song, but I couldn't remember it, so I sang it instead. It still sounded great and I had fun doing it. Occasionally we smiled at each other as we sang; pleased that we were actually pulling it off!
Following David was Edel Perth and her new duo Combee. Their song about Adelaide in festival time went over really well. Then Mr APRA himself, Gary Burrows, took to the stage. Gary also has some great songs and a lovely voice too. His song Mama is one of my personal favourites.
The penultimate act was Feelso… which is Caroline Perks and myself - and of course Adrienne. We performed three of Caroline's songs, the final being the very upbeat country tune Ode To My Aria. It's a song about her old nylon-stringed guitar that one day snapped at the top of the neck and spent the rest of its days sitting in a corner collecting dust. It was eventually replaced by a lovely black steel-stringed Epiphone. The 'hook' of the song is a line that goes "I wanna play for you Caroline; I'm a guitar with the blues." But, unbeknown to me, Caroline had gone around to everybody, one by one, and told them to all sing "I wanna play for you Catherine…" I totally wasn't expecting either that line or the entire audience to be singing it, and I completely lost it. I lost my place, I lost my harmony and I cracked up laughing - with an odd tear or two! The only thing I didn't lose was the guitar chords I was playing. It was such sweet thing for her to do and I love her for that!
I was to end the night with a couple of songs, which I did… well almost did. I nearly made it to the end of my second attempt of Coffee In The Ashtray, but was so overwhelmed by the entire evening that I completely forgot my guitar chords, and finished the song with an impromptu and rather abrupt ending. Thankfully, the audience still applauded and I was still smiling.
To be honest, my head really was spinning all night. I couldn't believe how many people were there and how many truly wonderful friends I had made for myself over my years of being with SCALA. It was completely overwhelming and humbling, to say the least. I've never been hugged and kissed so much in my life, or felt so loved and supported, and it was really hard to get from one end of the room to the other without being stopped by someone. Don't get me wrong, I'm certainly not complaining, it was just hard to not be in tears of over-joy!!!! Like I said, my head was spinning.
Many of those friends that came along handed me envelopes during the night, which I didn't actually open until I got home; Daryl and I just stared at each other in disbelief at the generosity shown. Some had sold CDs at gigs and donated the proceeds, and one friend had even been to see a friend of hers who was in hospital at the time for an operation of her own and she sent along a contribution. That was pretty amazing!
SCALA donated stacks of CDs for the raffle that Robert had going during the evening, as did David Robinson and Garth Dutton. Gloria Albanese donated bottles of wine and a basket of beauty products. My wonderful jeweller friend Roman Kielczewski ( see his website at www.zudesign.com.au) donated a man's silver ring [worth squillions] and Deanne Brown, who was working on the door, purchased four $25 dinner vouchers for The Joiner's to go into the raffle. Thank you to all of you. No one needed to go home empty handed because if they didn't win a prize, they could swap their raffle ticket for a SCALA CD of their choice.
The music really was fantastic and all the acts made for a marvellous line-up. Everyone played with the biggest smiles on their faces and I totally enjoyed getting up to perform with them where I could. I'm so grateful that all of those talented people I mentioned before were willing to donate their time to play for Samuel.
By the way, Samuel was at home with his Daddy and big brother Thomas. It would have been lovely for the guest-of-honour to make an appearance, but it was best to have him at home, safely tucked up in bed and away from any bugs that may have been floating around in the air - not to mention that it was pretty cold outside!
The combined door-takings and raffles raised somewhere in vicinity of $1405. That was something I didn't expect, but again, I am truly grateful for. The envelopes handed to me raised another almost $500! However, it hasn't stopped there. To this day, people are still donating on the SCALA website, and friends and family have also been as supportive. Even people I don't know (many of which are myspace friends of Caroline's, plus one lovely SCALA member from NSW) have opened their hearts to Samuel.
Robert has also informed me that a number of performers have gone on to donate their SCALA earnings to Samuel. I hope that those people are reading this because I really want to thank them for their kindness and generosity. I want to thank EVERYONE for their kindness and generosity. If this has taught me anything, it's shown me just how many wonderful people I have in my life and just how many genuinely lovely souls actually exist.
Waiting for the operation
At the time of writing this, Samuel is thirteen weeks old and we have had him home for only two of those weeks. For his other 11 weeks of his life, I have travelled to and from the Women's and Children's Hospital everyday, which is about a 65km round trip. As we are all well aware, petrol is bloody expensive, so some of the money raised has helped cover that cost. To be honest, if we hadn't received such generous help, there is no way that we could afford for me to go see him everyday like I do, and that would be truly heartbreaking. I need to see Samuel everyday as much as what he needs me to be there for him.
When we did have Samuel home for those two weeks, Thomas fell in love with his little brother straight away, giving him more kisses than I could convince him to give me. Fortunately, Thomas has turned into a little smoocher and is now happy to give me kisses whenever I ask. The other day, he was so happy about going for a drive with his Daddy that he actually kissed the car door. Funny little boy that he is!
Samuel is fed through a naso-gastric tube as it's too much work for him to breathe and swallow at the same time, though he gave it a good go for a few weeks. The milk is poured into a syringe which is attached to the tube and gravity allows it to flow into his tummy. After Samuel was born, I gave Thomas a baby doll when he came to the hospital to visit us one day. Once at home, I attached a tube to the doll and Thomas would sometimes sit there holding the tube in the air to feed his baby while I fed mine the same way. Unlike Thomas, I refrained from chewing my baby's face… ha ha! We would also bath Samuel in the big bath with Thomas, who was more than happy to have him lying on his legs while he held the tube in the air and imitated Samuel's rapid breathing.
Samuel was on strict four-hourly feeds. The 3am feed was the killer for me because he would sleep through and I would have to set my alarm to get up to him. Anyone with a baby will know that if your child cries in the night, you are up to them before you even think about it. However, getting up to feed a sleeping baby was REALLY hard. He would sleep through the tube feed and I would sit on the edge of my bed with my head resting on his cradle whilst holding the syringe of milk in the air! Those 3am feeds are the only thing I don't miss about not having him at home.
Unfortunately, at 7 weeks old, Samuel started to really struggle with his breathing and Dr Richardson, the Cardiologist at the WCH readmitted him to Rose Ward - the baby ward. We knew it would happen eventually, but it was so sad to not have him at home with us. He has been there for five weeks now and the nurses love him to pieces. Some call him their little boyfriend; others call him the ward mascot. He has oxygen almost constantly, but especially when he sleeps, and is always attached to a machine that monitors his heart rate and oxygen saturation levels. He has given the nurses a couple of scares, and once had a "blue-attack". The MET (Medical Emergency Team) were called and all was well again.
I must admit that although I would have liked to have been there to comfort him afterwards, I'm glad I didn't see it happen. I see him have little chokes sometimes, but I can calmly deal with it and then he is okay again, but that would have really shaken my nerves.
I've gotten to know all the nurses in Rose Ward and they are all just wonderful. I've also befriended a couple of mothers who have also had babies in there for a long time. We chat and ask about each others babies, and keep any eye out for them when one of us is not around. Many of the mums are there during the day, whereas I get there in the afternoon and usually leave around 10.30pm.
During the days I'm home with Thomas where he sticks to his regular routine of playing, watching Raggs and then having his afternoon nap, and when Daryl comes home from work, I head off to the hospital to be with Samuel. It's actually working out to be much easier for me this way; I spend quality time with Thomas during the day and quality quiet time with Samuel in the evening; bathing and feeding and giving him plenty of kisses and cuddles.
Samuel has got a little green toy frog in his cot that he loves and stares at and has even started reaching for - which is a good thing. He's also in a bay with other babies and lots of people walking around so he's getting far more stimulated than what he was when he was in a room by himself. He's very interactive with the nurses now; responding to their voices and things like that. I think the sweetest thing though is the fact that his heart monitor goes crazy when he sees me, and he wriggles around like a little worm until I pick him up and cuddle him. I like that!
I'm so lucky that Daryl is such a hands-on Dad, a very supportive partner and a genuinely loving and kind man. It's just sad that he and Thomas rarely get to see Samuel but soon he will be home and we can all be a family again.
Samuel's first operation date was cancelled at the last minute. Some of you may have seen on the news about the long waiting lists for paediatric heart surgeries. Samuel, unfortunately, is one of those kids that are caught up in all of that. A new date has been given for Tue Sep 16, but I'm not getting my hopes up just yet as that may also get cancelled at the last minute. Although Samuel won't get better until he has his operation, at least he is stable and being well looked after until his time comes. Some kids who are on the critical list have had their surgeries cancelled, which must be heart-breaking for the parents.
Samuel is growing into a lovely little baby, putting on weight, smiling and just getting on with things. Some people ask me if I am stressed with all the travelling and worry, but I'm actually not. I'm just doing what any Mum would do in my situation - caring for and loving both her babies, but just at different addresses. Samuel is the one doing all the hard work, and he seems to be coping quite well with it. He's the inspirational one, not me. Besides, collapsing in a heap isn't going to help anybody. It certainly won't make my life any easier, and it's not going to help Samuel's situation either. I've always felt like a strong person, but all this support from my friends and the love of my three boys has only made me stronger!!! Like I said, Samuel is the one doing all the hard work.
Now that I have probably worn your eyes out with my long story, I just want to thank everyone again for their kindness and generosity. Although most of the money has been put aside for our time in Melbourne, it has also covered the petrol costs of travelling to and from the hospital each day. So thank you.
Another big thank you must go to Robert and Jane Childs, to all those who played at Samuel's Heart Benefit and to everyone who has opened their hearts to our little boy. I wonder if he will ever understand the amazing effect that he has had on so many people. I am the luckiest woman to have three beautiful boys in my life and the most amazing friends that I could ever ask for!!!!
PS. I've been sending out regular updates about Samuel and his progress, which have included pictures and little stories. If you would like to be included, send an email to SCALA and your address will be forwarded onto me. Or you can check them out at the SCALA website. I'll be sure to let you all know how things go after Samuel finally gets the rejuvenated heart that he's been waiting for.
Copyright © Catherine Blanch 2008
UPDATE: Samuel had the heart operation on Friday, 19th September. As we go to print he's out of ICU and breathing without extra oxygen - all of which is good news.
Extracted from SCALA News # 115 (July/August/September 2008)