Cathal's Big Adventure

We Were On...

2010-05-03T19:34:00.004+01:00

THE TELLY!!!!

Cathal, unfortunately, was not too happy about being there, as you can see from the clip. Every time I spoke he got even more upset ("don't tell them Mammy...DON'T TELL THEM ANYTHING!!!"). But didn't Nan P do well

Grandparents Unite!

Vote For....

2010-04-24T19:20:00.002+01:00

THE SPECIALS

has been nominated for two Webby Awards, Best Documentary Series and Best Reality. You can vote for them here. Click on the appropriate category, register to vote, and click till your hearts content. If they win, the cast get to go to New York, wouldn't that make a great episode!

A message from The Specials from KADA Films on Vimeo.

Hip Hip HOORAY!!!

2010-04-18T19:39:00.004+01:00

A few days ago, Cathal's cardiologist gave him the all clear....

That's right, Cathal's heart is looking fantastic.....wohoo!!!
We were in and out of the doctors office in 5 minutes, RECORD TIME...

And guess what, our cardiologist doesn't want to see him for another year :-)

I've had a big cheesy smile on my face all week

Hip Hip HOORAY!!!

My heart? There's nothing wrong with it now,
it's as good as perfect

Happy Birthday Cathal

2010-03-09T18:58:00.012Z

Two years ago today (10/03/08), our little boy was born. A few hours later, he was whisked away to Crumlin Children's hospital where he was diagnosed with having a couple of major heart conditions.

A brand new Cathal

One year ago today (10/03/09), Cathal was in ICU just 24 hours after having his big heart surgery, and things were looking a bit hairy. We did not know if he would make it through the night.

About 4 weeks after surgery

Today (10/03/10), I am glad to report that it is Cathal's birthday...HORRAY!!!! He's a big boy now, and full of big boy ideas, tantrums and laughs.

He is here, he is healthy, and he is thriving. To celebrate our boy, and to start putting together some happy memories of his birthday, we decided to hold a big birthday party for Cathal last Sunday. I would firstly like to thank everyone who came, everyone who helped set up the room and clean up, and those who helped out with food, balloons and the sound system (you all know who you are).
I would also like to thank everyone who put money into the Heart Children Ireland box. Cathal already has far too many toys, and we thought that the money that is spent on birthday presents would be better used helping out other cardiac children. I know a few of you brought him a present too, and you really shouldn't have...but thank you too :-)

A grand total of 445euro & 10cent was collected on the day.....Amazing!!!!!!
Again, THANK YOU

And finally,
Happy Birthday Cathal

All dressed up for the party
(and ready to be an emergency page boy if the need should arise)

This party is not too bad Mammy

Pour grand-père

2010-02-26T20:34:00.001Z

Joyous anniversaire grand-père :-)

Comunication

2010-02-10T19:48:00.005Z

Even though Cathal may not be doing that well on the gross motor side of things, his speech and communication in general are coming on leaps and bounds. We could not be happier with him. He is babbling away, he has lots of conversations that we can't understand and he tries to talk to other children (not to adults.....what he has to say is a big secret and is on a needs to know basis, grown ups don't need to know). The reason that we can't understand half of what he is saying, is because we are pretty sure he is babbling in Russian. The variety of sounds he is able to produce is incrediable.

Apart from babbling, he is imitating a huge amount. He can say "READY, STEADY, GO!", although, when it comes out of his mouth it usually sounds like "eeeddy, deeeddd, OUOUOUOU!". But he has the intonation and an approximation of the words, and that is the first step. He dosen't have any clear words yet, but we are getting close.
Over the last three months, using a check list that Downs Ed have published (Vocabulary Checklists and Record Sheets: Checklist 1- First 120 words), I have realised that Cathal understands about 120 words (not all of them published on the checklist, but extra ones I've had to add), he can understand and sign 70 words, he immitates 30 words and he can spontaneously say 28 words (we are usually the only ones that understand). He still cannot say any words clearly enough for others to understand. But according to Downs Ed, on average, a child with downs syndrome will be able to learn to understand and sign or say 100 words. I think we are doing pretty well here, and I have to say, when I first ran through the check list and totted up the numbers three months ago, I was very surprised as to how much Cathal actually understood. I'm very proud of my little boy.

A few things have focused us in his speech. The first was something I read very early on in his life, from various sources. Talk, Talk, Talk.....talk about everything to your baby, describe what you are doing, what they are doing, what is around them....keep chatting. Not an easy task for me, I have to say, I tend to be more direct in my language, I get to the point quickly, and once it's said, that's it. I would be "quiet" in nature. I have learned to keep talking to Cathal though, and I hope it shows.

Speech and Language therapy is also hugely important, if only to give the parent ideas and focus. Unfortunatly, there is a huge lack of S&L therapists in this country, and not every child gets what they need. We've been lucky to be able to avail of it through Cathal's services and therapy has paid off for us.

Reading a lot! We keep a stack of books by the side of the bed, and usually while I am getting ready to get up, the Dad is reading books to Cathal in our bed. We read him a bed time story every night as part of his bed time routine (at the moment, the favourites are Where the Wild Things Are, The Very Hungry Caterpillar and Aliens Love Underpants). We label pictures, ask him to point to different characters and objects. We animate the story by screaming along with the Wild Things, or dancing around excited when the Aliens find underpants. This all helps to build understanding and it makes talking and reading a lot of fun.

Recently, we both also completed the Hanen "It takes Two to Talk" course. I cannot recommend it highly enough. It above all gives the parent the tools in facilitating the child's language development by using a few simple strategies. The one thing that really stuck out for me through the 8 week course, was how I don't give Cathal enough time to respond. Now, I count to 10, and it works. We both saw a huge leap in his communication very soon after we started the course, maybe because we knew what to look for in him.

Lamh has been another invaluable tool. He is signing more and more all the time. Especially now that we have the Lamh a song DVD. He watches it about 3-4 times a week, he knows all the songs by heart, he signs his own version of the words, and for weeks I end up staring blankly at him while he pats his tummy. I had to sit down with him to watch the entire DVD to figure out that he was signing "animal" completely incorrectly!!! When he pats his tummy now, I know he wants to sing Old Mac Donald...

So he might not be able to stand up, but he can chat till the cows come home!

A little taste of Cathal signing and singing along to his favourite DVD

Time For Some Updates, First Stop, Physio

2010-01-31T19:59:00.005Z

Physio, physio, physio.....ahhhhh...it's hard work for a little boy, especially when he is absolutely, positively, not one tiniest little bit interested in standing.

Sure, who needs standing, he can bum shuffle with lighting speed (if you don't believe me, check this out, second video down). He can get everywhere he needs to, to cause complete and utter destruction to his surroundings. Please consider the following photographic evidence as proof:

"Time for a tea break I think!"

"The cat likes to scavenge, doesn't he?"

Rolling is not a bad method for chasing a balloon or his own version of commando crawling (I really mean dragging himself along on his belly), is very useful when your fool of a mammy puts a biscuit 6 feet away from you in an attempt to make you crawl.

For months we have been trying to get him to stand:

in front of the TV, watching High Five, and getting him to dance -He is sooooo over that now, and after an episode of this, mammy's patience wears very very thin......
in front of the full length mirror, singing a song- bored with that now too
against the sofa with the cat just out of reach- he'd much prefer to sit and try and lure the cat instead

So now our physiotherapist has given us a new technique, which involves both parents, a special song to sing only when he is standing (not choosen yet, anyone have an idea for a good standing song?). I hope this one works!! We also have to get him to "crawl" up the top step of the stairs, and I discovered this morning, that leaving the basket of washing just out of his reach is his motivator to do it.

He's getting too heavy, and I have this sinking feeling of dread that I will be carrying him until he goes to school....arghhhhhhh

And it's not that he can't bear weight, he just won't. His knees stay together, his hips don't splay out, he's just a big lazy bum. The laziest child ever to grace the face of the planet.

He's always been a bit behind in terms of physio, I firmly believe that his surgery and subsequent recovery played a big role in this. Only on Friday did he sit up on his own, with no help or support, from his belly. He hasn't done it since. But now I know he can do it!!!...

Actually, now that I think about it, maybe he can stand, maybe he CAN walk....he's fooling us all, he just wants to be carried everywhere, FOREVER....

I'm on to you mister, from now on, it's going to be hard work in physio all the way

I Heart You?

2009-10-31T20:09:00.003Z

I know (slap on the wrist), it's been far too long.

I promise to be a better blogger
I promise to be a better blogger...
I promise to be a better blogger...... is that enough? Do I have to write it out 100 times?

Did you know, that there are currently over 100 children in Ireland on a waiting list for cardiac surgery. Did you know that 25 of those children URGENTLY need surgery. So what's the hold up? The surgeons are there, the surgical staff are waiting, even the theatre is open for business.

ICU beds.....they are at a premium in Crumlin hospital. There are only 8 ICU beds for those 100 children.

Eight

Now, the HSE are promising to make FOUR more ICU beds available in 18 months. We all know that those 25 children who need urgent surgeries can't wait 18 months, and I doubt the other 75 can either.
Crumlin is the only hospital where cardiac children can attend. They can't be transferred somewhere else, they can't decided to go to a private hospital for care. We claim that we care for and cherish our children in this country. I don't see any of that care, do you?

Meet Jake, his surgery was cancelled, 2 hours before he was due to be operated on.
"This is Jake he is 14 months old and has Down Syndrome. He also has a minor hole in his heart that he needs to have repaired by open heart surgery. Jake was due to have his surgery on October 5th 2009 in Crumlin Childrens Hospital, Dublin, Ireland. Jake did not have his surgery as there was no ICU bed available for his surgery because of the cut backs and sever shortage of funding. The HSE and the government don't seem to care about Jake or the other 150 children who are awaiting heart surgery at this very minute. These children are ticking time bombs who's hearts could give up at any minute and they will DIE before their time.
I know this because I am Jake's mother and i'm begging you to print off the pioster available on this website and send it to Mary Harney, Minister for Health and beg for the lives or our children. Imagine, in this day and age I am begging for my sons life and that all the other children made to suffer because of our so called leaders who seem to want to line there own pockets before worrying about the country's Health Service. My son needs to have his operation by the time he is 18 months old so he can have the full potential from it. We have 4 months left. We as parents are running out of time and fast. This is happening everyday and we are not alone."
Copied from Jake's website

Meet Joy who is fast running out of time.
"Our daughter Joy is awaiting open heart surgery and is on an indefinite waiting list. Her health is deteriorating daily and we are fighting for her and all the other children in her predicament. Funding needs to be made available for existing ICU departmen and for at least another theatre day. We are asking the governement and each person who cares, to push this situation to be fixed, and fixed it can be."
Copied from Joy's website.

Just two of the twenty five children who need help now.

You can see more of their stories here, here, here and here

The Frontline on RTE1 discussed this issue, which you can see here. Do you believe what the HSE are telling us, I don't... I don't have any faith in them any more.

Hello Kitty

2009-08-30T16:58:00.003+01:00

Last Tuesday, we adopted the newest member of the family. Can you guess which one it is?

The fluffy white one by the way!

I like having a pet, always had one. We had cats growing up, the Dad had dogs. There where also gerbils, a hamster called Spartacus, and now there is Marvin the cat. And what a good cat he is. He still needs to learn some of the ground rules of the house, like no cats aloud on counter-tops and tables, but he has been great with Cathal. Cathal loves him, one of the reasons we decided to get a pet was so that it might encourage Cathal to get moving across the floor, other than rolling. The first day Marvin was home, he was on the couch, Cathal was on the floor, and Cathal tried to pull himself up against the coffee table to get a look at the cat. There was about a centimetre of space between the floor and his bum for 20 seconds.....the Dad and I were floored.....that's the first time he has attempted any kind of pulling himself up. I think we made the right decision. Cathal is also very good at rubbing him, although he does get a little over excited and tends to then hit or grab the cat's skin and pull. And the cat just takes it.

Pheeeewww!

And where did we find such a fine cat I hear you ask?

From the DSPCA. Marvin was abandoned. His right front leg got broken some how, his family brought him to the vet, the vet fixed him up, and then the family would not collect him and refused to answer the phone. He was there 4 weeks before the vet brought him to the DSPCA. In these tough times, people just can't afford their pets, and it is happening more and more. Although I sympathise with his previous owners, I still don't understand how some one can do this. At least they brought him to get treatment, but still.

When Cathal was born, we should have just sent him back too, "Sorry, this ones got a messed up heart, he's gonna cost too much to fix, take him back".

When you take on a pet, you take them on for life....Marvin is only 2, not a very long life so far.

So, to recap, we have a son who has CHDs and downs syndrome, and a cat with a dodgy leg (he has a big limp) which will probably develop arthritis in his old age which won't be covered by pet insurance!!! What are we like?

But, Marvin is the right pet for us, his personality and temperment fits us and Cathal perfectly, it's what's inside that counts :-)

A Very Interesting Talk Coming Up

2009-08-09T13:33:00.012+01:00

I am very excited to tell you all about a very generous offer. Victor J Bishop, dad to Emmanuel aged 12, has offered to give a talk on "How to teach your toddler with DS to sight-read". Victor is visiting Ireland to attend the World Down Syndrome Congress with his son, who has been invited to play the violin and give a presentation. Victor taught his son to read from an early age, and has offered to impart his experience and advice to our little Baby/ Toddler and Parent group.
This talk will take place at 11am on Monday the 17th of August at the Carmelite Centre. It will take place during the regular group, so babies, toddlers, siblings, parents, early intervention staff.....EVERYONE....is more than welcome to join in.
I am going to take as many notes as I can in my scrawling handwriting and then copy them up here for anyone who can't make it. There will be tea and coffee and biscuits. Keep an eye on the left hand side for updates on the group and the next meeting date.

Now, on to more important stuff. We are just back from our holidays, Costa del Cork and Costa del Clare. Here are some of our favourite holiday snaps!

Fota Island, in the Rain... it's holidays, where is the sun?

Bouncy bounce
(Fota, Cork)

What the hell is all this golden grassy stuff, this "one with nature"
is not that great Mammy
(Ballymaloe House, Cork)

CHICKENS!
(Ballymaloe Cookery School & Gardens, Cork)

PIGS!!!
(Ballymaloe Cookery School & Gardens, Cork)

DUUUUUCKSSSS!!!!!!!
(Dromoland Castle, Clare)

those are very tall cliffs Mammy
(Cliffs of Moher, Clare)

At last, something I can get my hands into....
(please note, this baby was dry...)
(Doolin, Clare)

Rock pool + toddler = very wet trousers
(Doolin, Calre)

Official Down Syndrome Dublin Parent & Toddler Group

2009-06-25T09:27:00.002+01:00

Following on from Ava's Mum's tireless organising, the Carmelite centre will host the first 'official' parent and baby/toddler down syndrome Dublin group meeting on Mon 6th July from 11 a.m. to 1 p.m. Please let me know if you can attend and more importantly spread the word in your services. Siblings are also very welcome. Please bring some small toy or something to keep everyone occupied and a packet of biscuits or anything tasty to keep parents occupied. There is a tea and coffee station there.
The Carmelite centre have stated this is a trial for them too so depending on how we get on Mon 6th of July they will confirm if we can continue to Sept. It would be great if we could get a good number to show up. There is paid parking behind the centre, the directions to get to it are:

Approach Aungier Street from the Camden Street/Wexford Street direction, past the Church and go left at the lights and then immediate left.
There are also lots of buses going down that road, and the Luas is very close by!!!

Spread the word.....and join in for fun, tea and chat

Location shown as point "B" on the map below.

The Carmelite Community Centre
62 Aungier St
Dublin

01 400 5955‎

View Larger Map

A Big Big Thank You to All of You Out There

2009-06-23T21:39:00.004+01:00

Finally, with much anticipation, it is my pleasure to announce the grand total of funds collected for my first attempt at the Mini Marathon in aid of Down Syndrome Ireland and Heart Children Ireland.

Drum rolls please...............

865 Euro

Thank you to everyone who contributed, to Kate for collecting at the JH Testimonial back in May (and to all those who donated, to my two cousins who are 9 and 6 years old who dug deep into their savings, to all my family and in-laws, all my friends for being so generous, the Dads work mates for chipping in (including the Enniscorthy branch for secretly setting up a collection box), all those who donated via the magical Pay Pal gadgety thingy that the very clever Dad found and set up for me, to my sister in-law for collecting at her work place and doing the marathon in aid of Heart Children Ireland. I hope I remembered every one.......

Thank You

Bye Bye Crumlin

2009-06-13T21:04:00.002+01:00

There are some things that really stick out from CAthal's stay at Crumlin Hospital, those first 24 hours in ICU, getting a birthday balloon that floated out of a box from Ava, getting out of ICU, not being able to hold him for several weeks because he was in too much pain, Cathal getting withdrawal symptoms while coming off the IV morphine, getting a really cool slinky from Noah, the days when we thought his chylothorax would never heal to name but a few. And to be honest, I don't think I can go through them all again, not even to write it all out here. I'm done now with the whole surgery and the 6 weeks we were there. I feel like I've gotten it all out of my system, well, almost everything. Maybe this coincides with writing my last post and sharing our experience, when we had kept it to ourselves for so long. Maybe it has to do with getting the all clear from Cathal's cardiologist a few weeks ago, and the surgical team this week. Needless to say, Cathal is back in action, back on a full fat diet after having had to endure fat free food and fat free milk for 11 weeks, and he is back to his old cheeky self.

But what I really still can't get out of my head is the sight of the parents sitting outside ICU waiting to see their babies or waiting to hear the news. To get to either cardiac ward, you need to pass ICU, and there is always someone there waiting to get in. At weekends it is even worse, news, good and bad is delived outside those lift doors on the bank of seats. I will never forget any of the children that were in ICU at the same time as Cathal. There was Jenny John next to him, a beautiful little Indian girl from Kerry, who's Mother, Father, big brother and big sister were waiting for her to get well. We ended up being neighbours on the ward too, and she got out a few weeks after us. A 6 month old little girl who had surgery only a few days before Cathal, her parents only got 2 days notice that she was scheduled for surgery. She barely pulled through and was discharged around the same time as Cathal. Adam, the little boy who was in surgery the same day as Cathal in the morning and got home a couple of weeks before us.
Across from us was a tiny baby boy, maybe only a few days old, his Polish parents keeping a vigle by his bed side. After a few days, he went to surgery and came back still hooked up to the Heart and Lung Bypass machine. He had two ICU nurses at all times, one for him and one for the machine. He passed away a few days later.
The sixth child in ICU around the same time was a 16 year old boy. The first time we saw him, we were both very shocked. You get used to seeing tiny babies and young children in ICU, but to see an older, bigger child is like glimpsing into your posible future, and all I could think about was Cathal at that age, lying there. Cathal may need a valve replacement in 15-20 years time, and even though this is unlikely to mean he will need open heart surgery, you can't help but wonder if he will visit ICU again. I have this niggling gut feeling that the 16 year old boy had downs syndrome too, which only hits home even more that this could be what is waiting for us. This boy had his entire family close to him. Parents, brothers, sisters, Aunts, Uncles, Grandparents, cousins, all of them would wait to hear some news, for days on end waiting on the ground floor by the fish tank. His parents would take turns to check him in ICU every hour, only staying for 5 minutes at a time. If we found it distressing to see him there, I can't imagin how hard it was for his parents.
He never woke up.
I will never for the rest of my life forget the wail from his mother as she was told he had passed away. Again, this news was delivered in a lift lobby, on a weekend, when the hospital was short staffed, for all to hear.

And then there are the parents and children we got to know on the wards, so many happy endings, a few uncertain endings with trips to Great Ormond Street planned, and one very sad one. All these parents and children will remain with me and I will never forget them.

The last two apointments Cathal has had in the hospital, he has had to have x-rays. Everytime I hit the button for the lift, my heart jumps up into my mouth and I get an unwavering urger to run out of there as quickly as possible. All the feelings come flooding back, and I suppose they always will. But one thing I noiced last week was how quiet things are up there.

3 weeks ago, St Josephs ward was closed, 25 beds closed indefinatly. One brand new surgical theatre was also closed. It is likely another 2 wards will be shut and possible another theatre over the summer months. And all this for a measly amount of 9million euro. This is how much Crumlin Hospital are over budget, so what do you do when you are over budget? Well of course, didn't you know? You take away vital care for sick children.

Taken from the Irish Times, May 13th 2009:

The hospital plans to close several wards and theatres, and have some 8,000 fewer outpatient attendances this year in a bid to stay within budget. It is currently facing a deficit of €9.6 million.

The hospital board has drawn up a break-even plan that includes the closure of a ward of 25 beds with effect from May 2009 and closure of some 20 more beds in July and August.

Our Lady’s also plans to cut out patient appointments by 15 per cent, shut one theatre for July to December 2009, close two theatres for July and August this year and grant unpaid leave to staff who have expressed a voluntary interest for those two months. Temporary/agency staff contracts will also cease.

PICU 2

2009-05-27T20:00:00.002+01:00

We finally got home at about 11pm on Monday night after Cathal's surgery, after seeing him safely and comfortably settled in ICU. I think we might have phoned them to check on him before going to sleep, and again during the night, and the following morning as soon as we got up. The advantage of buying our house where we did, is that we are only 5 minutes away from the hospital. A stroke of luck. We never felt the need to book into parents accommodation, and I am so grateful that we were able to sleep in our own bed. And sleep we did, exhausted from the previous days events.

We got in to see Cathal early the next day, and he was stable. His nurse catered to everything, constantly checking his drugs, taking observations every 30 minutes. She told us that he was doing well, and she was not concerned about him. But during the day, his health started to deteriorate, slowly, so slowly we did not see it.
Paediatric Intensive Care is an intense place. It is a large open room with 6 beds, and two isolation rooms just off the main ward. Each patient has their own nurse. There is always a couple of nurses that run errands. If a nurse has a patient, they are not aloud leave until the end of their shift for infection control. There is a team of registrars, at least two that are constantly doing rounds. Then there is also the aesthetic team, renal, repository and cardiac teams to name but a few. All in all, with all the traffic, it is actually a quiet and peaceful place, even the alarms don't sound urgent. Each one is slightly different, and none of the staff jump when they go off. There is a sense of calm professionalism that surrounds each person which I found very reassuring. They also enforce "Quiet Times" between 7.30am-8.30am, 1pm-3pm and 7.30pm-8.30pm. No parents aloud in PICU during these times. We always took the opportunity to go home, sit for awhile and rest.

On Tuesday the 10th of March (Cathal's first birthday, we got back to ICU at 8.30pm, after the change of shift and hand over. We will never forget his nurse that night. She is the only person we met there who did not radiate that sense of calm. As soon as we reached his bed side after washing our hands and putting on our aprons, she told us she was very worried, he was very sick. There were several doctors close to him, discussing him. Cathal had forgotten to turn his kidneys back on after the surgery, and he was swollen from head to toe with excess fluid. All this extra fluid was then putting pressure on his fragile heart, which in turn was causing hit to work harder, which made it tense up, which in turn would cause his kidneys to shut down. A catch 22. The surgeon was phoned, the cardeologist was called, several options put forward, several drugs administered to get things going. But nothing was working. After several phone consultations with the surgeon, a plan of action was decided upon. But in the mean time, Cathal's nurse kept repeating "I'm very, very worried about him". Maybe she thought she was preparing us, but all it did was give us a sence of foreboding and extreme worry that was not in anyway helpful.

We were kicked out at 10.30pm, not knowing if we would see him alive again.

The renal team were called to put a catheter straight into his bladder. The plan was to kick start his kidneys by pumping fluid into his bladder, and then removing it the same way it went in, which should, in theory start his kidneys working again. His IV fluids were also reduced, every millilitre was counted to make sure that more fluid was coming out than going in.

In the meantime, we sat and waited in the ICU waiting room, exhausted, shattered and petrified. All I could think was that it was not possible for us to loose him, we had committed too much to Cathal, we had put everything into him, all our hopes, love and devotion, and this was not how it could end. This is the second time in his short life that I could feel him slipping away. I didn't call anyone to tell them how serious Cathal's condition was that night, how could I ask people to expect the worst when every time I thought of him leaving us, my mind would totally and completely reject the idea.

Finally, god knows at what time, we were told that it was starting to work. He was expelling more fluid than was going in. Everyone could breath. Once we were reassured by everyone that he was out of danger, we bleary made our way home for some broken sleep.

It was only when his consultant recently told us that he did not know if Cathal was going to pull through or not that night, that we really realised how close he was to dying.

I am sure your all glad that you know there is a happy ending to this story, I certainly am!

Down Syndrome Dublin; Speech and Language Survey

2009-05-25T19:59:00.003+01:00

Would you be interested in receiving subsidised Speech Therapy for your child with ds in the Dublin region?

Please fill in this form and send it back to the address on the form to help the DS Dublin Branch establish what the demand for this service would be.

Walking Around

2009-05-15T14:55:00.004+01:00

I'm taking a little break here to let you all know that I am going to slowly walk the Women's Mini Marathon on Monday the 1st of June. I am collecting money for Down Syndrome Dublin and Heart Children Ireland.

DS Dublin hope to employ a Speech and Language Therapist for it's members. This would mean that S&L would be available to children and teenagers at a subsidised price. A private S&L session costs about 90euro an hour, DS Dublin hope to offer the same thing at half the price.

Heart Children Ireland do brilliant work supporting children and families in hospital. They have provided a play room on one of the cardiac wards, employed supporting staff like a play therapist and paid for vital life saving equipment, to name but a few things.

I am going to split the money between the two charities, straight down the middle. If you can donate anything, please do. Just select the amount you would like to donate and click on the "Give" button on the left. You do not need to be a PayPal account holder, all major cards accepted.

Thank you!!!

Surgery

2009-05-04T22:19:00.001+01:00

At 2pm on Monday the 9th of March, Cathal was called to surgery. We were brought down to the surgical reception, the ward nurse carrying his 2 files (he now is on his third) and Cathal’s cardiac liaison nurse following us. Then the hand over, the surgical nurse ran through the check list again with us and the ward nurse.

X-ray- check; Blood tests- check; teddy- check

When every one was satisfied that Cathal did meet all the criteria, and had passed all the tests, we were brought through to theatre. I hope you never have the misfortune to bring a child to surgery in Crumlin, but if it happens, focus on the little signs over the doors, they are fantastic. I know….what an odd thing to notice when you’re going for major heart surgery. There are a few art instillations scattered around the hospital, most people will know the fish tank, which is a submerged Dublin featuring Busaras and Croke Park. The new surgical wing has it’s own instillations. Each door has a sign with something comforting written over it. I can’t remember the exact wording of the signs, but over Recovery it has something along the lines of “In here you wake up all better”. Over one of the anaesthetic rooms: “Were you go for a big sleep”. So among the maze of white corridors there are little snippets to keep your mind off what is about to happen, they keep you some what sane.

We got to the anaesthetic room, and we both gave Cathal a big hug and kiss. He was completely unaware of what was happening….and then the mask went over his mouth, and neither of us will ever forget the look of sheer panic in his eyes. He cried for his Dad, then for his Mammy. He had only started to use Mama and Dada in context, but by God, he was using them in context that day. I will never forget that moment for as long as I live, his eyes were welling up with fear, he didn’t understand, and all we could do was hold on to his hands, helpless. All of a sudden he was asleep, one final hurried kiss and he was whisked off us, the team busy getting to work, against a clock. We were quickly ushered out, the Dad trembling, me sobbing.

K (our liaison nurse) talked to us the whole way out, and explained what the procedure would be from then to surgery. We arranged to meet in a couple of hours. 4pm, and we are waiting for K. She comes over to us, bad news, Cathal is still not in surgery. He is all ready to go, but the little boy before him had some complications, and they are just finishing up. OK….. more waiting.

I am a bit hazy on the events of the day, the times that things happened, all I know is that we met every couple of hours for up dates. In between, we wandered around the hospital, sitting in the lobby, in the canteen, in the coffee shop, outside surgery. Endless waiting.

I can’t even remember what time the surgery ended, or what time the surgeon came to speak to us. All I know is that it was about 10.30 that night that we finally got to see our little boy back in ICU, cold, puffy, but still with us.

The surgery itself was a success. They patched up his Complete AVSD using a type of nylon I believe. They also repaired his Tetralogy of Fallot as best they could, by removing all the excess muscle from the right ventricle and widening the pulmonary artery. They did have to leave in some external pacing wires, he was having some funny heart rhythms before they closed up, mostly because of the right ventricle, but more on that later.

When we got in to see him in ICU, he was on countless drugs, morphine being one, drips, respirator, 3 chest drains, catheter and an external pace maker. In a way, we were lucky that Cathal had already had an operation, only that can prepare you for how your child will look. Of course, this was worse, more of everything…..more intense.

We were told that the next 24-48 hours would be critical, in high sight, surgery was the easiest bit.

Counting Down

2009-04-30T21:20:00.001+01:00

Firstly, apologies, I meant to update this last week, but I’ve been finding it tough to get started. We have all been home a week and a half now, and getting back into the swing of things. So, I’ll start at the start, and slowly work my way through the last 8 weeks or so. It will take a few posts, it might get a bit teary, but don’t worry, there is a happy ending.

About 8 weeks ago, the cardiac secretary phoned me to tell me that Cathal was scheduled for surgery the following week, March the 9th.

Shock

I only heard half of what I was told. “Come in on Thursday for echo, ecg and x-ray, and then come in Sunday to be admitted”……OK…..

I rang the Dad immediately, in floods of tears and chocking voice I told him the news.

Thursday came, Cathal and I went up to the hospital to get all the tests and checks done. I completely underestimated what it takes to be admitted for surgery. There were blood tests, x-ray, echo, ecg, MRSA swabs, urine sample, stool sample (luckily he gave those to the nurse on the day, and we didn’t have to store any in our fridge), consent to be signed, checklists to go through, cardiac liaison nurse to speak to. We spent the entire day in Crumlin, from about 10 in the morning, to 6.30 that night. I came home with a starving, exhausted child, a splitting headache and an unusable bathroom. Oh yes, you see the same week we got the news, our one and only bathroom was being ripped out and replaced…..good timing!!! Luckily, the guys doing our bathroom were amazing, and stayed till 11 on Friday night to finish the bathroom, so that they would not need to come back the following Monday, surgery day.

The weekend was spent franticly cleaning the house, getting in supplies of soup, dinners, biscuits and sweets. And also, having a small birthday celebration for the man in question.

Sunday….the day we go in to hospital. We were given a great tip off, don’t get admitted until about 4.30. Admissions close at 5, so get in just before they close. I stayed the night in the room with Cathal, on the floor on a mattress that can only be described as rock like. A tip for all those sleeping on those mattresses in Crumlin, make sure to get a light coloured one, they are softer, newer and you aren’t actually lying directly on the floor. Avoid all dark blue and green ones, these are instruments of torture. Cathal thought it was hilarious that I was on the floor, at 4 in the morning, he was lying on his tummy looking down at me grinning. Cathal was supposed to be first into surgery the following morning, so had to fast from 6am. But, things got switched around, and he ended up second on the list. He had to keep fasting through it all. He kept his spirits up, he was flirting with the nurses, sleeping, doing well. By about lunch time though, he had had enough and just ignored everyone, licking his lips with thirst, looking down at his sheets forlornly.

Finally, at 2pm, on Monday the 9th, he was called for surgery

Monday is the Day

2009-03-06T21:06:00.002Z

On Monday, I got the call I've been dreading, the one I've been hopefully anticipating.

Cathal has his date for surgery.

He is scheduled for his full heart repair on Monday the 9th of March, the day before his first birthday.

Any one fancy a party in ICU?

An AGM Update

2009-02-28T21:05:00.005Z

Last Monday night, the Dad and I trundled into town to attend the DS Dublin AGM. The flyer that came in the post a few weeks before mentioned speech and language, and we were hooked. Who does not want to hear about a way to provide your child with speech and language. We parked on Exchequer street, almost infront of the meeting location, very handy. It felt like it's been years since I've been out in town at night. This is as close to a night on the town it gets for us at the moment.
When we got to the meeting, with plenty of time to spare, we sat down with Noah's parents for a little chat before hand. Things kicked off after 8, the usual AGM stuff....
Then, the S&L proposal. DS Dublin have been putting in a lot of research into hiring a S&L therapist. Some of the other local branches have been able to get this up and running, Kerry, Limerick, Galway, to name but a few. All have done it their own way, but it has been done. The proposal is to follow the Kerry model, and it seems that they have been very helpful in giving advice.
Kerry have managed to hire a senior S&L therapist through additional membership and increased fundraising. Their therapist travels to three locations in Kerry once a week, and the famillies in that area then go to her/him. The courses run in 8 week blocks, with a 6 week break between. You atend a one on one session every two weeks. It cost €40 per session (as oposed to about €90 privatly). The fact that Kerry have been able to offer this has attracted more families to join their branch, thus brining in more money in membership and fundraising. This extra money pays for the therapisit's travel costs and it also pays for the three locations which are needed. DSI head office look after the payrole for the therapist. A senior therapist was hired at first to set everything up and put the systm in motion. Once this is done, a gradute can be hired at a much reduced cost to assist the senior therapist.
To me, this sounds fantastic. It can only be beneficial to all of us. However, aparently the membership of the Dublin branch only stands at 300. To me, for the size of this city, it sounds tiny. Where is everyone? Maybe because we are new to all this, we've been very enthusiastic about joing the branch. I mean, the talks that are organised, I think, are well worth the €20 joining fee. As far as I know, in the next few weeks, a questionaire will be sent out to all members asking if they feel that this would be a service they would like to avail of. There will be a sub-commitee set up to orgainse the logistics of the whole thing, and members will be asked to volunteer. I've voluenteered to help, even though we are lucky to have access to a S&L therapist now through our services provider, who knows what might happen in the future. It's better to have a back up of some kind. It seems that there is a lot of work involved in the set up, but once it is up and running, it runs itself.

And this leads me nicely to fundraising for this worthy cause. Last year, DS Dublin got 100 women to run/ jog/ walk the Women's Mini Marathon. They asked for 20 members to bring along 5 friends to make up the number. This year they are looking for 250!!!! So do it now, registeration is open....I'm signing up, hopefully, I'll get to do it, as long as the little fella isn't in the hospital with his heart..... So I'll be houding you all for a couple of euro a few weeks before the race. Would you like to sign up?

Can I do the Marathon on this?

And on a little personal note, a friend of mine is flying the coup, and moving to the sunny beaches of the Caymen Islands. Nice work if you can get it!!! Unfortunatly, due to a very important french relative (my god mother) flying in yesterday, we could not make it to her leaving party last night. So Lisa, have a great time, I am so jealous that you get to live under the sun for a few years...... We will all be over to invade your place for a holiday, I promise.....

Another Ticker Update

2009-02-24T22:25:00.001Z

Last week Cathal went to see his cardiologist, and it looks like he should be all fixed up by June (fingers, toes, arms, legs crossed). We'll see, I am still not going to hold my breath just yet, and we'll be taking it with a pinch of salt when that date comes in. In the meantime, his dodgy pulmonary artery has grown again, from 5mm to 7mm.

More posts and updates to come.......soon.......I promise

Happy Valentine's Day

2009-02-12T20:35:00.003Z

Now, I'm not the most romantic person around, actually, I'm a bit of a bah humbug when it comes to Valentine's Day (after all, you should make the effort every day), but now I have no excuse. So forget those overpriced roses and the dodgy marzipan chocolates, get out there and find a Windmill for a measly €2 on the 13th and 14th in aid of Heart Children Ireland.

My Little Boy

2009-02-04T21:48:00.002Z

Yes, that's it, the little baby is gone, only to be replaced with a little boy. I started to notice this change last week with a trip to the hairdressers. While I was there I decided to ask the hairdressers advice on the best way to tackle my son's mullet. I know what you are thinking, surely we did not leave him almost 11 months in 1985, but he was born with a rat's tail, and it was starting to get a bit too long for comfort. She offered to trim it for me there and then, so now my little baby looks like a little boy. Don't worry, the front wasn't touched, it's still as long and silky as ever. But it has changed him, he's grown up some how. When the other staff realised he was getting sheared, they came bounding towards me....
"Is he getting his first hair cut?"
Yes
"Are you going to keep his hair?"
Emmmm.....am I? Is that what's done now, gosh, I don't want to look like a bad Mammy.....Of course I'm going to keep it.
So now I have a little plastic bag, somewhere in the bookcase (well I think that's where I left it) with a little bit of baby hair in it.

Recently we've come to realise that between the growth spurts, the teething, the crankiness and tiredness, there is a little personality, a real little person emerging. I have come to the conclusion that he's a bit mad, possibly a little hyper active and a little comedian. He's trying to be more active, still no crawling, but he is rolling, in one direction , down the centre of the sitting room. He hits everything and shakes it to see what it does. Wooden spoons are used as drumsticks, tiny stuffed cloth animals are used as teething rings. He is exploring everything and anything you give him (except food.....typical). I scour the house for something new to give him. At the moment his favourite things are the plastic insert of a biscuit packet, a string of beads, and a rubber spatula.

He is also discovering his voice, raspberries are the way forward in communication it seems. I can't leave a room without waving good bye to him or he starts shouting after me. Whining and pretend crying are being used as blackmail.

He's got a thing for the ladies too, he flirts while we do the weekly shop, beams at any woman who talks to him.
"Hello, will you be my new Mammy?"

Sleeping 12 hours at night time, and taking long afternoon naps is now a thing of the past, apparently sleeping is for girls!

I can barley remember the days when he was tiny, sleepy and placid. Now all he wants to do is bounce and wriggle in my arms, while simultaneously hanging out of my hair, pretending to be Tarzan (my head is not a jungle!).
How fast time passes. What new trait will tomorrow bring?

Health up date: Just like Noah, Cathal had his eye test recently, and he has been given the all clear. He can see!!! No "wobble" in his eyes, no cataracts, just a strong possibility that he is a little long sited, but nothing that needs a prescription just yet. Next eye test is this time next year. Keep yer eyes peeled.....

Wanna be in My Band?

2009-01-30T21:17:00.001Z

A & E is So Much Fun

2009-01-11T16:46:00.004Z

Ah yes, he is keeping us on our toes, this little one. It all started last night, while Cathal was asleep. We noticed that he was short of breath and a little wheezy. So this morning, when he was still no better and he had an annoying cough that sounded more like a bark, we decided to visit our local A & E in Crumlin. And a good thing too. Turns out when we got there that his oxygen saturation levels were low, even for him.....between 58 and 60 (normally he is between 75 & 80). His chest was listened to in great detail, the doctor looked down his throat and discovered that his throat and airways are a bit inflamed. So yet another virus strikes again. When will they end?

A few doses of inhalers were administered, a steroid and after a few hours, he was jumping around the place. Ahhh......it's good to be able to breath again. His sats jumped up to 79/80 so we were let go....wohoo!!!

We've been given an inhaler to give to him as he needs, but he hates it. It's a two person job. How I'm going to give it while The Dad is at work, I don't know. Any takers??

They All Said It was Just Man Flu

2009-01-07T16:20:00.008Z

I was sick!

You may have heard, I was sick over Christmas. I had a rotten time, big swollen runny eyes, nose that was so stuffed up and runny I couldn't even breath, a horrible cough and a sore throat. To top it all off, those parents of mine opened most of MY presents while I tried to get a bit of kip on the big day itself. Bahumbug to them anyway. But don't worry, I got my own back, I managed to rub my nose in my mammy's face lots of times while pretending to give her those cute sloppy kisses. Ha, she fell for it, the fool, and I managed to spread....I mean share my germs. Sharing is Caring!!! She's still a bit sick, but well enough to look after me.
And I was teething and have nothing to show for it. Poo to Christmas. It's a bloody pain.

But I have managed to eat my way through most of my presents now. They all taste delicious by the way, hmmmm.....wooden toy trains are tasty. Those pesky parents keep trying to give me bits of orange and "healthy" biscuits to chew on, but toys are so much nicer.

Don't forget, my Nanny has organized a grand-parents day on the 14th....check on the left for more details and such. I'm off to have a bath now, I love my bath!

Heart Update

2008-12-16T15:56:00.004Z

I know, I've been incredible lazy the last few weeks. What can I say, lots to do at the moment it being the festive season and all that.

Anyway, Cathal went for his regular 2 monthly(ish) check up to have his heart looked at, and I am pleased to announce that he is doing great!!! We had a target weight to reach (8kg) and he weighed in at 8.27kg. And that's all down to me I might add, he's not a great eater, not a big fan of solids, so yes, I'm proud (see that light? It's me beaming with pride). We were also told that his pulmonary artery has grown a little. BIG JUMP FOR JOY! If it keeps growing little by little, it should make the operation a little less tricky. Surgery should be around spring/ summer. So now we keep waiting.

But poor Cathal, he did not like having the echo done. All it is is a scan, but as soon as Dr.McM put the gel on his chest, he screamed blue murder, and kept screaming. Even when he was dressed and we were sitting at the desk, every time he looked round to Dr.McM, he would start off again. My son knows how to hold a grudge, that's for sure.

This book is good mammy, can't wait to find out what happens

And Cathal met Santa, although he was more interested in pulling the little girls hair. At least he didn't try to pull Santa's beard, he would be on the naughty list for life otherwise!

Great Hair Day

2008-11-13T16:21:00.002Z

Part 2 of Health Health Health

2008-11-06T21:19:00.002Z

Ok, here goes again. Health continued.....

There is a very small risk of Cervical Spine Instability in children with down syndrome. This occurs at the top of the neck and affects the two small bones in the spine that allow nodding (like yes/ no). It is very important not to ignore the signs and to seek specialist attention. Apparently it is very curable with a very small operation. Look out for:

pain at a spot near the hard bump behind the ear
A stiff neck which doesn't get better quickly
Alteration in the way a child walks or he/ she looks less good on their feet
Deterioration in a child's ability to manipulate things with their hands
Incontinence developing in a child who has previously had no problem

Coeliac Disease is an intolerance to gluten. The lining of the small intestine becomes damaged reducing the person's ability to absorb certain foods. The symptoms are diarrhoea/ constipation/ chronic tiredness/ anaemia. The risk in children with down syndrome is just under 18%. Joan stressed that it is very easy to test for. When you are getting bloods done to check your child's thyroid, request a test for coeliac disease too. Sure, while the needle is in there, you might as well take a little extra blood to test for this, and what's the harm in getting it done once a year along with the thyriod. This condition is life long and requires a gluten free diet (no cereals). Check out the Coeliac Society of Ireland and the Coeliac Society UK for more information. The Down's Syndrome Medical Interest Group recomend screening.

As we all know, there can be (well lets face it, it's very likely) Speech and Language Problems in children with down's syndrome. Receptive language skills are increased, expressive language skills are decreassed and grammer can be more difficult. No speech and language problem is unique to children with down's syndrome and it can be linked to hearing impairment like otitis media with effusion (???) and fliud in the middle ear without signs/ symptoms of ear infections. The trick here is to start therapy the moment your child is born (which all parents do anyway). Feeding, family talk, touching, looking, listening, encouragement are all important speech therapy you can do at home, and formal S&L is also important.

CONSTIPATION!!!! I have some lovely pictures and diagrams in my notes, but you will all be sad to know, that they are a bit too small to scan in and post here (and I am far too lazy to dig the scanner out and plug it into the computer), so I'll save you the details. Lets just say that normal poo for a child should be smooth, soft and snake/ sausage shaped. If it's hard and lumpy (or worse)......CONSTIPATION. If it's little soft blobs (or worse again) with clear liquid ....DIARRHEA. If it's a baby (Cathal), in my experiance, anything goes. Anyway, for constipation, introduce more fibre (fruits, prunes, cereals), increase water or juice, take more exercise, cut down on high-fat and high sugar foods, encourage regular bowel movements and go to the GP if the poo is softer (could be hypothyroidism). Also, another tip that Joan had was if your child seems to be straining, hold your child against you, their back to your tummy, bring their knees up to their chest and give a big hug! Aparently this gets things moving.

Sleep, the holy grail. Sleep all depends on age, if the child is well/ unwell, hot/ cold, hungry/ thirsty, teething, learnt behaviour. If sleep problems continue, write a record (when did it start/ happen, time it takes to go to sleep, time the child actually sleeps and what position the child sleeps in the bed/ cot) Chat to your GP, or Joan.....she seems to have all the answers and asks all the right questions.

Understanding Behaviour, it all has a purpose. Either to get atention, start social contact, escape/avoid, obtain objects/ events, express emotion or reduce stress, sensory stimulation. Again, it's the same advise as sleep, take a note of the behaoviour, when, where, why and listen to your gut instinct.

Dental Health, but sure that's all the usual stuff!! No need to explain.

Independance can start from 1 year old. For example, when out and about, sit the child in the trolley and have them get the cornflakes. Have a list of shopping with pictures to illustrate what is needed. This can give children pride in the ability to put items into the trolley. So while doing the shopping, you are practicing and teaching coordination, S&L, physio and OT. Be inclusive from an early age, get involved in the community, local events, drama, football, swimming.

And finally, you, the parent. It's important to take care of yourself, take time for you. We are all running around from one appointment to another, and just sitting down to relax and to be relaxed around your child is the best thing. The hoovering can get done tomorrow, the washing can wait another few hours. When playing with your child, just play with them, drop the down's syndrome for one day each week and do what you want.

"It's in the the atmosphere of love and acceptance that the best growth occurs"

Joan Murphy
Clinical/ Research Nurse Specialist
Department of Paediatrics/ TCD
Phone: 01 8963785/ 4142000/ bleep 7193

Health Health Health Part 1

2008-11-04T20:54:00.003Z

Last week, DS Dublin held a talk about the typical and common health issues in children and adults with down syndrome. It was such an informative and interesting talk, I've decided to transcribe the notes we were given, and try to add in what I remember. So I'm afraid this might not be too interesting to some, but to others, I hope it helps.

The talk was given by Joan Murphy who is a clinical nurse specialist in Tallaght Hospital. She works closely with Down Syndrome Ireland and she is available to all parents who have children with down syndrome, by email, phone and through the hospital. You don't need to be her patient, just give her a call and she'll answer any question. And if she dosen't pick up, then try again or leave a message. I'll include her contact details at the end.

The major treatable health problems are heart, growth, thyroid, hearing, vision and development & learning abilities/ gaps. Early identification and intervention are essential.

Family centred care is very important. The well being and rights of the child are priority. Parents are the key to the child's health and well being. Parents are the experts for their child. In other words, if you have a gut feeling that something is just not right, get it checked out. If you are not happy with your doctors explainations, give Joan a call!

A key resource in health matters is a book called "Medical Management of Children & Adolescents with Down Syndrome in Ireland". It is a medical guideline for the profesionals, but it's no harm to know where to get it and the checkup table on page 19 is in my opinion essential to have.

Growth should be charted on a down syndrome growth chart. As long as your child is following their curve, then all is fine. If they start to drop significantly or jump, then contact Joan or your consultant. Another great book for feeding in young children is "Supporting Feeding and Oral Development in Young Children". I have found this to be a great resource, and I dip in to it from time to time. Joan also recomended "The Down Syndrome Nutrition Handbook".

45.7% of babies born with down syndrome have Heart Problems.
20% of those are innocent murmurs
25% have an Atrioventricular Septal Defect
17% have an Atrial Septal Defect
15% have a Ventricular Septal Defect
11% have a Patent Ductus Areriosis
7% have an ASD VSD
2% have a PDA VSD
3% have a Pulmonary Hypertension
Check out Heart Children Ireland for explainations on these and support.

Thyroid screening is very important and should be carried out on an on going basis (at least once a year). A blood smple can be taken from just a finger prick. Underactive thyroid is the most common problem and it's side affects are tirdness, lethargy, over weight. About 4% of thyoid problems are caused by an over active thyroid and side affects are sweating and other things I can't remember......(sorry!). The improtant thing is too look out for changes in your childs energy levels, seemingly going backwards in terms of speech for example, check their growth chart, and then get it checked out.

Hearing screening is also very improtant. It can be done in three stages. The first is an otoscopy to test the external ear and the tympanic membrane. The second is a tympanometry to test the middle ear (eardrum and ossicle mobility). And the third is a DPOAE and measures cochlear function. Now, all this is absolute gobbledy goup to me, but basicly, there is a fourth test, the big brain wave one that does the job of the other three, which for the life of me I can't remember the name of. I would suggest you get that one for a little baby, but it's good to know that each section can be test seperatly. For more information on hearing loss and problems, check out the NDCS and "Down's Syndrome and Childhood Deafness".

50% of children will require glasses for their vision. Now hang on....I'd say 50% of the general popuation need glasses, and Cathal is going to get his shockingly bad eyesight from me anyway! Back to the point. Early detection in short & long sightedness, strabismus, cataract and glaucoma will prevent an unnecessary secondary handicap. So it's important to be on the look out for lazy eyes, squiting and anything that just dosen't look right.

I am going to take a break here, and continue this in a few days time! Stay tuned for more...

Joan Murphy
Clinical/ Research Nurse Specialist
Department of Paediatrics/ TCD
Phone: 01 8963785/ 4142000/ bleep 7193

Is He Suffering??

2008-10-30T21:41:00.004Z

According to TV3, he is. There I was, watching the news this evening, the headline report "The government does another u-turn on the budget"....horah! However, my joy was dampened slightly. During the course of the report, they showed a woman and photos of her daughter, and the report spoke over these images, " ....., who's daughter suffers from down syndrome...."

YES, that's right, every person who has down syndrome is suffering from some kind of dibilitating disease. I imediatly checked Cathal over, he has a cough and a sore throat. I've taken this to be a sign of his suffering, and I've quarintined him so that he can't infect anyone else with extra random chromosomes. I URGE YOU TO DO THE SAME!!!

Honestly, who let that one slip by? Surely someone who works in TV3 has a relative, friend or knows a friend of a friend who has a disability. Surley someone could have spotted this gross misuse of language. I don't know. It just throws the "ahh, god bless him" back in your face. So I've written to them, expressing my concerns....we'll see what comes of it.

On a lighter note, we had the DCA assesment yesterday. After waiting 6 months, we had a 10 minute appointment. We all met a lovely doctor for about 10 minutes, who then told us we that the DCA is automatic. Well, why on earth did we need to wait 6 months for a 10 minute appointment. There you go, another example of a waste of time and money by the HSE. Oh dear, well at least it will all be backdated, so I'm thinking of it like a savings account.

I have to ask, what next? Answers on the back of a postcard addressed to "the boy suffering from down syndrome" if you please.

Happy Halloween

2008-10-25T14:44:00.003+01:00

Roarrrrrrrrrrr!

Thank you so so so much to South Dublin Dad, South Dublin Mam and Ava for finding the costume. He was a big hit at school yesterday

Know Your Child's Rights

2008-10-16T20:51:00.004+01:00

Last Friday, the Ombudsman for Children, Emily Logan, came to John of Gods in Islandbridge for a bit of a chat. Well, my eyes were opened. Not only do we have an Ombudsman for Children in this country, we have some one who is prepared to fight for the rights of our children, especially our special children (and yes, I know, all children are special). It was a wonderfull talk, and unfortunatly I can't recall it word for word, or even attempt to transcibe most of the content here, there is one underlying feeling I'd like to share with you all.

If you have hit a brick wall. If you feel that your childs right to education, medical treatment, housing, and anything else listed on the UN Convention on the Rights of the Child, has been comprimised in any way, go to Emily. If you have exausted all local options, the principal of the school, the GP, the consultant, the HSE, the councillor, the TD (and any one else who will listen).....go to Emily. That's what she is there for, to help you fight for that Special Needs Assistant, that vital operation and ICU bed, that home especaily adapted to your childs needs.

So check out their website, bookmark it, know that there is hope, there is some one out there who can compel others to do what is best for your child.

Know Your Child's Rights

Feelin' the love

2008-10-07T21:29:00.003+01:00

Now, I'm not into chain mails, or any of these if you don't send this on to 57 people your tomato plants will die and your apple tree shall be fruitless. When ever I get them, I tend to ignore them....delete......DELETE

But how can I resist.....Hammie, Maman (Nan P) you shouldn't have....

x 2

So here goes, I'm to nominate 7 others. I'm not going to dish out the rules (I'm such a rebel), but I am going to let those who I nominate to do what they will, and if they want to keep spreading the love, then go ahead. And these blogs are all ones that I check on a daily basis, ones that I really do love, and you can find them all on the left hand side.

Numbero Uno: Hammie, Hammie, Hammie. The first blog I read, and one of the two that inspired me to get all creative and start my own. Your honesty is refreshing, you tell it as it is. Your such an insperational person, and I only hope that I can be half the woman you are.

Second: Nick, you have a great way with words, and your blog also got me going to write. Most of all, you get this award for all the support in the early days, for all the advice and information, but especially for sharing Jacobs early days with me through your blog, and assuring both of us (the Dad and I) that we were not alone.

Three: Sesame, internet addicted, vomiting bug fighting super mammy of four, living in her house on the hill (sounds like a nursery rhyme). I love reading about your life and your kids adventures (do I sound like a stalker now?) All us special mammies need to sick together, support one another, make each other laugh from time to time, and that's what you do.

Quatrième: And now for a bit of nepetism, Nan P. Ahh, you know, sure I had to nominate you (I'll never here the end of it if I don't :-) ). No, honestly, your support in Cathal's life has been fantastic, as has all the famillies, both sides. And once he is old enough, you can babysit him for whole weekends if you like....in your place.....(see, booking her already)

5th & 6th: Noah and Ava Cathal's Thursday buddies, both have wonderful parents who have decided to blog about their babies to share the ups and downs of having children with downs. Noah's dad's musings pre baby I think are so ensightfull and touching, they made me shed a little tear, and before Noah was born and we had even met him, I was constantly checking back for news. Ava's parents have such a great sence of humour (check out the passport photo) her blog just gives you a lift when you need it. Loving the holiday picks.

Seacht: And last but not least, Eadaoin. I went to college with Eadaoin (my second stint), and she actually worked where I work for a while too, before embarking on her travels. I love reading about what she is up to, the work she is doing, the amazing places she is visiting. She is doing such wonderfull work, looking after and helping lots of children with special needs who would otherwise be lost and forgotten. This is something I don't think I would have the courage to do (says the mammy of a baby with special needs!), to leave the comfort of home, and travel to a strange country, only to be attacked by giant flying coakroaches.

So these are my seven, do what you will with it my pretties!!!

Can He Hear?

2008-10-05T21:26:00.003+01:00

Last Wednesday, we had a busy day, Cathal was pulled and proded and made to show off all his skills and fire eating skills. The day before, we got a call from our public health nurse (who we've met only once), to be told that Cathal was due his 7 month hearing test. So even though we were due the same day at the Coombe for the usual check ups, we walked down to the clinic, in the freezing wind. Cathal was all wrapped up in a hat, a blanket and his big cousins beautiful winter coat, you couldn't even see him in the buggy!!!!
Anyway, we got in to see a different public health nurse to the one who called the day before. She proceded to do the regular checks for a 7 month old:

Asking if he reached for toys. Yes he does that, she then put a clear boring plastic rattle on the table in front of him to see if he would grab it. He just looked at it...."Well, what am I supposed to do with that?"
She then sat him up, not very well, to see if he can sit up. Yes he can do that, if you position him well and let him find his centre. He of course started to tilt a bit...
He was attentive to her, watched her. "Oh, you must play with him all the time, you can really see that in him". I do, I do!
His weight, length and head circumference was checked, (7.59kg, 68cm, 44cm....hmmmmm, are you sure?)

Then she informed me she needed to get another nurse to help with the hearing test. After about 3-4 minutes, back she came with another nurse in tow. I'll pause here to tell you what I think happened outside the room. By the way, I hadn't mentioned any of Cathal's little extras.

Nurse A: "I've got a woman in there with a little baby, and I think he has down syndrome."
Nurse B: "Really?"
Nurse A: "Yes, and I don't think she knows, she didn't say anything about it."
Nurse B: "Oh my goodness, bless her!"
Nurse A: "What will we do?"
Nurse B: "I'll take a look when we go in, and I'll chat to her."
Nurse A: "Right so, god bless the little fella"

So in they both came, nurse B takes a good look at him, "Isn't he lovely, he's gorgeous". Glowing mammy holding him, beaming with pride.
Nurse B: "You know, there used to be an activity group up in such and such a place, run by such and such a person, and you know, it was for all babies, not just for...."
No. 1 Mammy with a slightly dropped jaw: "He already attends John of Gods, and he's in early intervention, there's a whole rake of people supporting him thanks."
Nurse B: "That's wonderful"
Nurse A, slight look of relief on her face: "Wonderful"
Nurse B: "He's great though, really great, you must play with him and talk to him all the time!!"

Well, what else would I do all day with him. They must see a lot of babies who are just left in a corner for the day with no stimulation.

Anyway, finally the test started. I was sitting in the middle of the room with Cathal in front of me on the edge of my lap. Nurse B stood in front of him while nurse A hid behind me. Nurse B made a funny noise and went:
"Cathal!!!!"
while making a funny face, then she stopped suddenly, crossed her arms and tilted her head to the side. He's looking at her going,
"What the hell just happened?"
Nurse A in the meantime leaned over my right shoulder and started to whisper at Cathal,
"Pshwshwsh...pshwshwsh...Cathal Cathal Cathal"
And he turned to face her,
"What?"
Nurse B, made her funny nosies again infront of him....
"Ohhh, she did it again"
Nurse A repeated the whispering on his left. By this stage though, he'd cop'd on and he knows that the woman infront of him is far more entertaining, so he didn't pay a blind notice to the other one.

So they swithed places and started again. This time he just ignored them completly.
"Bored now!"

Then there was the, "Well, I'm sure he is fine, he can hear on the right anyway". I went on to explain that I already know he can hear, due to the magical test they did in Crumlin. "Oh, that's wonderfull, we'll repeat this test anyway in a couple of months". "He's great". "Bless him".

To say I had to try and contain the laughter is an understatment. Can't wait for the next one!

Just a note on the weight, length and head measurments, in the Coombe that same afternoon, they were all taken, and there may be a few discrepancies. Lets study them shall we?

Public Health Nurse Coombe
Weight: 7.59kg
Height: 68cm
Head: 44cm

Coombe
Weight: 7.4kg
Height: 70cm
Head: 41.5cm

I am more inclind to believe the Coombe to be honest. So to all those breastfeeding mammies who are told that their baby is too light and needs to be topped up, or even put on formula, because just look at that weight, don't do it. All scales are different, different times of the day appear to produce different results, judge your baby, not the numbers.

Regarding the Coombe visit, he's doing very well, growing perfectly according to the down syndrome growth chart, but I knew that anyway.

Drum Roll Please....

2008-09-28T20:59:00.004+01:00

It is with great pleasure that I am announcing the launch of a fantastic new Irish based website all about breastfeeding (my second favourite topic, the first being Cathal).

www.thebreastway.ie

A huge congratulations goes out to the creator of the site (well done boobies!!!), and to all the women and babies who turned out just over a week ago in Cabinteely to have pictures taken to help promote the site. A great day was had by all, even if we did look like a bit of a cult with Gingerpixel snapping our photos and Jo selling her nipple cupcakes.

Breastfeeding has become such an important issue to me, and the low precentage of women who do continue to breastfeed past 6 weeks is truely shocking. The majority of women feel let down by our health system in terms of support (no shock there, especially to us special parents too), many feel that they are doing something wrong when their 6 day old babies won't settle and everyone (including some health professionals) tell them that they should just pack it in, a bottle will sort them out. Only a few women seem to know that things get better, very quickly. Why is that?..... Lack of education, knowledge and support that should all be provided to any woman who decides to "give it a go".

But finally, there is a place where these women can go for honest, researched answers. So in the future, if you have a baby, and you think...hmmm....I would like to breastfeed, arm yourself with the knowledge and information, check out my breastfeeding links on the left hand side. And any questions that you might have, there is support out there.

Tick A Box

2008-09-15T21:20:00.006+01:00

This may surprise you, I may have fooled you up till now, but it's time to tell the truth.
I am a complete introvert....shocking, I know.

On my second attempt at college (the successful one), as part of my course, I had to do a bit of psychology. Nothing too taxing, bit more of an Idiots Guide. I remember very little of it, but what I do remember is one particular lecture about Jung's introverts and extroverts. We each took a little test to find out which box we fit into, and low and behold, I fit snugly in the introvert one. I was one of two or three out of a class of almost 30 to be like that. I've never been terrible social. Not that I don't go out, I just don't get the staying out very late, getting tipsy, having to shout over loud music. Do I sound like an old bat yet? Hang on, I'll just whip out my knitting and wave a needle around critically. I like to socialise in small groups of good friends, nothing too strenuous, with my own comfy bed waiting for me at the end of a long (no later than 1.30am) night.

But now I think that Cathal is changing all that. Suddenly, I am not happy to stay home and mooch around the house. Now I need company. I have never been very good at meeting new people, making new friends, but all of a sudden, I am craving chats and tea. Does mammyness do this to you? You make that extra effort because of your new little bunddle? You need to seek out adult conversation before you go mad singing Twinkle Twinkle Little Star for the 47th time that day?

The Mammy Box: Very soon after Cathal came home for the second time, a little summer walking group was formed, through the magic of RollerCoaster. We only got to go walking a few times before the rain drove us indoors, and chatting and tea took over.

The Special Mammy Box: Recently, a few of us mammies of babies with DS have been getting together once a week, in each others houses to chat and yes.....drink tea. Cathal has made some friends at this little get together, Ava, Noah, Liam and more recently Mannix.

The Breast Feeding Mammy Box: Also, in the last few weeks, I've been meeting a few other breastfeeding mammies to chat about, yes, you guessed it, breastfeeding. Again we all met through the amazing RollerCoaster.

The Baby/ Toddler Group Mammy Box: Tomorrow I am going to go to my first real, properly organised, baby and toddler group, to meet more mammies and babies. I'll drink more tea (I do like tea) and catch up with my sister-in-law.

The School Mammy Box: Don't forget that mammy, the most important one. We go to school once a week to sing songs and look at twinkly lights on the ceiling. There is also some tea involved.

A different Mammy hat to put on every day

That's my life now, different boxes that I tick, a range of different mammy jigsaw puzzles that fit together to make up a picture of me. For a complete and total introvert, I think I'm making great progress at socialising, if not for my sake, but for Cathal's. It's good to stimulate both our brains.

P.S. Cathal got his medical card today, I didn't even have to put up a fight!!

Counting Down

2008-09-06T21:58:00.008+01:00

Although I know what is to come (we have already had a taste), although I know my eyes will be red and swollen from crying, although I know I will not be able to sleep, I really cannot wait for Cathal to have his heart operation. I just want it behind us. The worry, the fear and the tears will all be worth it to get our lives back on track. It feels as though time has stood still, and all I am doing is waiting.
There is no date yet for the operation, all we know is that it should be around March, when Cathal is a year old. We will see his cardiologist (I really must learn how to spell that word) in about a weeks time, so maybe then we might be able to pry some information out of him. Until then, all we can do is wait and wait and wait....

I don't want to bring Cathal on holidays outside the country in case he doesn't have enough oxygen on the flight, or the cabin loses pressure. I don't want to bring him to a hot country, in case he gets too hot and too sweaty causing him to dehydrate, which could cause his shunt to clot. I don't want to be in a country where I don't speak the language and he might have to go to hospital. All these things play on my mind. It's much safer to stay at home, a 5 minute drive from Crumlin Hospital. What can I say, I'm a little paranoid about his heart. I think I have a right to be though, in all fairness!!!

So, what can I say, I'm looking forward to having my little boy, all patched up and ready to fight the world. The sooner the operation, the sooner that can happen.

For the moment though, Cathal is just happy to bake cakes and play computer games.

hmmm, orange and apple pie!!

staying up late to help out on a raid in WoW

A Bit of a Ramble....Forgive me

2008-08-30T21:47:00.004+01:00

When our little bundles of joys are born, they don't come with instructions. There is no Beginners Guide to Babies

Cry A= Hungry
Cry B= Thirsty
Cry C= I am so bored I am just going to keep shouting at you until you do something to entertain me

You are given the minimum training in the manic days after the birth.

Here is how to bath your baby without making him swallow half the contents of the bath.
Here is how you change a nappy without getting pee'd on.
Here is how to feed your baby (well in the case of breast feeding, the teaching is few and far between, but that's a whole different post).

So when you are handed your baby, and suddenly you are told that something is not quiet right, no one seems to want to explain to you the true meaning of your child's specialness. Fair enough, Cathal was sent up to Crumlin fairly soon after he was born, and we were not going to hang around for informtion. In Crumlin they were concerned about his heart, not his down syndrome, so no info there. Because half the babies on the heart ward had down syndrome, there are lots of Introduction to Down Syndrome "Welcome" Packs, supplied by DSI. This is how we got our introduction to exactly what down syndrome was. That and the wonderfull world wide web (where would we be without it!!). No one ever explained that he might have problems hearing, seeing, speaking, walking, crawling, ear infections, chest problems, more colds, thyroid problems, and so on and on and on and on........
We have found these things out over time, speaking to other parents, reading the books, the internet, anything we can get our hands on. There is no leaflet "What to expect for the next 10 years". I know that we can never predict what can happen, but maybe there should be a little something, like a person in each childrens hospital and maternity hospital who can sit down with the terrifed parents and explain things, what this syndrome is all about. It's taken so long to gleam all the information we've learned, and still I can't shake the feeling that we've been left in the dark. Maybe this is down to the way all the medical tests have been organised. Mystery appointments come through the letter box. As it happens, I have only recently found out that Cathal's original pedeatrician in the Coombe refered him to have his eyes and ears checked. Bloods are taken every time he goes to the baby clinic to check his thyroid, and again it took a couple of visits to find out why.

Should anything else be done for him? I really don't know.

The referal system for early intervention was never explained, or even where he was being refered to, again, left in the dark about my son. This could be down to poor comunication, lack of Mammy being able to think on her feet and ask the appropriate questions. It's still a little hazy as to what will happen when Cathal is a year and the Coombe will not look after his general health. We should be refered to someone else to take over the job, but this process is also a litlle unclear.

That's just the medical side, what about all those benifits and state aids that could help ease the medical finances? You are certainly not given a list of those. Should the Department of Health and Children or the Department of Social and Family Affairs not direct you to what help there is available. All it would take is a leaflet outlining all the benifits available to you, distributed in the childrens hospitals, in the maternity hospital, the socail workers. There are so many people who don't know what they are entitled to, for example, did you know that if your special child is not potty trained by age 3, you are entitled to free nappies....that one slipped you by did it? I'm not surprised. It's like drawing blood from a stone.

So you apply for all your bits and pieces to help make ends meet while you drive your precious cargo from physio to the cardieologist to early starters to anything else you can think of that might help in any way to make sure your baby reaches his full potential. And you agonise over whether you should go public or private and hope you can pay for it all, because you know that your baby will probably get better medical treatment if you go private. At the moment, we are private for Cathal's heart, we have helath insurance, but we go public for everyhting else, in the hope that nothing else crops up. If something does, by god we will go private with that too. We'll scrimp and save if we have to, but in the meantime I've applied for all we can apply for (I hope).

Recently, I sent in the medical card application form, however I foolishly filled it in Cathal's name and "modified" the form to include all Mammy and the Dad's financial details. Letter number one arrived:
"Dear Mr. Cathal,
Please forward you most recent payslip, travel to work expenses, loan payment details."

Well obviously because Cathal is 5 months old, he dosen't work, but they seem to have failed to look at his date of birth, and the 101 documents I attached with the form. So I walked down to the office with Cahal in tow.
"Hello, this is Cathal in the buggy, but all our info is with the form."
"Oh, well look at that, so it is. But you know you can add x and y if you like."
"I don't think I need it, Cathal should get this card because HE is entitled to it, due to his genetic and medical conditions you see."
"Oh no, it's all based on the finances"

Sigh. I could have told them we won't qualify under that. So I brought down documents x and y a week later, only to get in the post another letter, a few days later, asking for my most recent payslip, even though I had explained twice, in person, that my most recent payslip is dated January because I am on maternity leave. I rang them, and expalined this again. Now I am psyching myself up for the refusal letter that I know will arrive any day.

Why do they make it so hard? Why when I am already fighting they make me fight even more? His conditions are there in black and white, all typed out and signed off in triplicate from two hospitals, and yet they insist I take the long, round about way to get what Cathal is entiteled too.

The sad thing is, this is only the begining, there are a lot more fights to come, and already I feel tired.

Luckily, there are some people very willing and able to help. When Cathal came home after his operation in April, he was put on two very expensive drugs. The local chemist would not take payment for these drugs until we were all signed up on the same drugs payment card. Again, I sent in the application, but heard nothing back. I kept going back, trying to pay, but they would have none of it. Last week, I had to order another bottle of one of the drugs, and again, they would not take payment. Instead, they made me fill in an emergency form, and I payed for everything, including some tablets for the Dad under the same month, so in total, three bottles of Cathal's medicine and the Dads medicine cost €90, when in reality, I think it would have cost €300. Thank goodness for the good people out there.

The moral of this story is support your local chemist, none of those big chain ones. The family run chemist on the corner is the one that will look after you.

And Now He Can See You

2008-08-27T22:01:00.005+01:00

Official announcement number two:

Cathal can see

Yes, it may come as a shock, I know you were not expecting it, but it is true.

Seriously though, Cathal had his first eye sight test today. We spent all night learning his ABC's, and it turns out that he didn't even need to read a chart for the test. Oh well, I guess I'll just start him in school now that he knows how to read *sigh*.

At this age (between 5-6months) all they are looking for is that he can focus. I could have told them that. He was a little young for some of the pictures and he was more interested in the lovely doctors face than the picture cards (he's got a bit of a thing for pretty ladies at the moment), but she was very happy with him and is not concerned. His next eye test will be at the end of January, and this will determine whether he is long or short sighted and whether he will need glasses. Apparently there are glasses out there for little babies, and honestly, I'd say it is likely that Cathal will need them, if he is anything like his Mammy.

Some things you can't put down to the downs, like eye sight, if short sightedness runs in the family, well you've got a 50/ 50 chance of getting it anyway. So any child of mine runs that risk. Hopefully he will have 20 20 vision like the Dad. Some things you just can't blame on a dodgy chromosome, like a bad mood, poor sight, cutest nose in the world, super ticklish cheeks, neck and tummy.

Cathal is 50.5% me, 50.5% the Dad, 101% perfect.

On a separate note, I'd like to warn you all that Cathal has a bit of competition in the greater Dublin area. Yes, there are a few other little babies out there that are competing against him for the title of "Cutest Baby/ Toddler Who Happens To Have An Extra Chromosome" (I'm working on the title, the sash might be a little to big otherwise). The nominees so far are Noah, Ava (Cathal's debs date) and Liam. We've met them, and the competition begins in earnest. If you have a suitable candidate that you would like to enter, us Mammies are trying to meet and compete (well when I say compete, I mean eat biscuits, drink tea and chat) once a week. So if you'd like to join in, please feel free to e-mail me.

Rollin' Rollin' Rollin'

2008-08-22T20:02:00.003+01:00

Rollin' Rollin' Rollin'

The Worm

HAPPY BIRTHDAY!

2008-08-20T19:42:00.003+01:00

Happy Birthday (on the 21st of August) Nan P

Ahh do do do do do
Ahh do do do do do
Ahh do doooo do do do dooooo
Happy Birthday to you!!!

He Can Hear You

2008-08-14T22:19:00.003+01:00

It's official, Cathal can hear.

Yippy!!!

Yes, he had his first hearing test on Monday, very exciting. How do they test a 5 month olds' hearing I hear you cry, do they wear headphones, do they need to raise their little arms? Bleeepppp.....did you hear that love? Why yes I did Mammy.

No no, they stick three little sensors onto the baby, one behind each ear, then one on the forehead and connect them up to a computer. Then little ear phones are put in the ears and sounds are played. They measure the response through the brain, somehow, through the magic of science. They are able to measure from the outer ear to the 'hearing' nerve, so they know that Cathal can hear down to 20 decibels, which is what you need to hear language and speech. Right now though, they can't determine how he is processing what he is hearing, in fairness, he can't answer back yet. But I can already tell that he has selective hearing.....Cathal, Cathal.....shushh Mammy, I am watching the Olympics. Swimming is great, the water is so shiny and splashy.

Oh, and by the way, the baby needs to be asleep for the test....they need to arrive awake, and then sleep at the click of your fingers. So in preperation, I kept him awake all day, well, he slept 15min midday. He was a cranky, cranky boy going ino the test....poor little man. He went out like a light.

Honestly, while the test was being carried out, I started to get a little worried. The Dad got the jitters before me though, all of a sudden you think, what will we do if he can't hear? How would we cope with that one....We already have the heart, how could we deal with another issue? It's like a check list that we have to go through now with him,
heart? bad
hearing? good
thyroid? good so far
eyesight? that's next, in a couple of weeks

It's funny, we get these mystery appointments in the post. What's this for? Ummmmm, eyes maybe?

I think this will be what it will be like for the next few years, never mind the milestones and mental development, its all the health and medical issues that throw you. Hopefully, because we got the raw deal with his heart, we will have no other trouble. He is hitting the milestones like any other baby, so I have high hopes for him.....my little, smily, happy baby

To Work or Not to Work

2008-08-10T22:26:00.005+01:00

The question that all Mammies ask when they come up to the end of their maternity leave, "How can I possibly go back to work?" I was due back to work in September, when Cathal would be about 6 months old, but he is just far too little to leave for the whole day every day. At only 6 months old, how can such a tiny baby cope in a crèche, demanding the attention of a carer who has to look after two other babies and fight crime at the same time? Well this question has been racing around in my head for some time. Then, a couple of months ago, I started to hear the rumours, 5 people let go, a few weeks later 10 people let go, a few weeks later and they are asking everyone to take a 10% pay cut......what is going on???

I work in the doomed construction industry, and it's all going to pot. In fairness, I do think most places had over hired a few years ago, and this little blip is now taking it's toll. So I weighed up all the factors. With Cathal's little extras, I had decided that going back to work full time was just not an option, after all, who would take him to "school" on Friday mornings to sing songs?

We did the maths, wages in, benifits in, mortage and childcare out, food and expenses out, and the sums just did not add up. I would be earning peanuts working 20 hours a week, and peanuts, although quiet tasty, just dosen't pay the bills. It was decided by a vote of three to nothing, that I will take the extra 16 weeks (genourosly) unpaid maternity leave, and add to that all the bank holidays and holidays I will rack up, I would not be due back to work till early 2010 (yippy, extra long holidays). By then, Cathal should be going in for surgery, so I am going to take at least a year of carers leave to help him recover from that little event.

And guess what, my employers are fine with this. It gives them breathing space, saves them a bit of cash in these tough times, and gives me time to concentrate on Cathal and help him achieve all that he can (he'll be playing Grade 6 air piano by this time next year).

So I going to be at home for about a year and a half, you know just lazing about, drinking cups of tea, watching Murder She Wrote and Dr. Phil (a deadly combination). I am looking forward to it though, I'm just not ready to join the workforce just yet, Cathal changed all that, I was totaly prepared to go back to work before he was born, but now his big smile tugs at my heart and I just can't leave him......*sigh*, the joys of motherhood.

Holidays....la la la la la Holidays

2008-08-07T19:33:00.005+01:00

I saw a sheep

We went on holidays, yippy! Three days in Westport, yippy? Our last holiday was two years ago. Those were the pre recession, pre mortgage, pre baby days....ahh, I remember them well, we were young, careless, free, we had a disposable income. Where did it all go? Because we knew that we would be buying a house the following year, we decided to splash out, we went on a Caribbean cruise and three nights in Miami (a far cry from Westport, let me tell you!)

This year, after all the stresses of the last few months, we decided to take a tiny break. With Cathal's little heart, we didn't want to go somewhere too far on a plane or too hot....the West it is then.

I must say, what a beautiful little town Westport is, it has won many tidy towns competitions and it shows. The air.....ohhh the air.....so clean and fresh. Cathal kept sneezing, not used to that pollution free, pollinated air.

We went on a little day trip to Achill too, magnificent. Delicious food, beaming sun, clean (cold) sea, sheep, what more could you want.

It was all too short though, next year, I've decided, that respite grant is going to be used on a big holiday (two week cruise anyone?)

Gosh, that water's cold and splashy Mammy

Merci aux “frenchies”

2008-07-29T21:32:00.005+01:00

Merci à tout le monde pour tous vos bons souhaits, et surtout pour tous les emails envoyés via Nan Pascale depuis le début.

Un merci spécial à la famille Claes pour la carte – photo de la réunion en juillet, et tous les beaux messages écrits dedans. Merci à tout le monde (branche Perrot, branche Claes et côté Citté) pour les beaux cadeaux. Cathal les apprécie . . . même s'il ne sait pas trop quoi faire avec certains, mais cela viendra!

Pleins de gros bisous à tous.

Cathal, Martin et Sylvaine

PS – Traduction: Pascale

1000

2008-07-29T21:32:00.004+01:00

Hip hip Horray!!!

My first 1000 visits to my little blog (well, 1025 as of midnight last night, to be exact).
Thank you to all of you who keep coming back to read and share

bouncy bouncy bounce

Happiness for me.....

2008-07-28T22:41:00.000+01:00

Just like Sesame, Hammie tagged me (I don't even know what this is!) to come up with six things that make me happy, so here goes:

1. Martin
The love of my life, my partner for the last 8 years, and the father of my beautifull little boy. He is my best friend (I know, get the tissues, it's all getting a bit weepy again), he is a rock in my life. When things get very hairy (and I ain't talking about my legs), I can break down and cry in his arms, and he takes it, and supports me. He is a mirror of me, we are so alike that I feel he completes me.

2. Cathal
My little boy who I cannot even imagine life without. He has introduced me to a world I hardly knew existed. We have already met so many kind and lovely people through him. I love when first thing in the morning, when the dad or I go into his room to get him up at 8.30/9, he is usually awake just looking around, sucking his fingers. It takes him about 5-10 seconds to recognise us, but when he does, he gives us the biggest, toothless smile in the world and his limbs swing up and down with excitment.

3. Lazy Sundays
I love nothing more than lazying on a sunday, get up late, breakfast, brush teeth at 1, eat junk all day, watch trashy tv (Murder She Wrote in particular), just being a pig. With Cathal, this hasn't happened for a while, and is not likely to happen until he is 14, can't wait!!

4. Holidays
Love holidays. Love sun. Love heat. Love walking around a new city. Love discovering lots of tasty places to eat. (The dad and I don't care for boozing, so we make sure to find all the best places to eat, including the best places for dessert. Other people drink, we eat sugar.)

5. Owning my house
Well, the bank owns most of it, but I can do what I like to it, and we both slept in a brand new bed for the first time when we bought our house (we are both products of the last recsession, hand me downs for both of us growing up)

6. Retirement
I can't wait to retire. I love it already. I am looking forward to that day when I know I never have to work again. I will be fighting for Cathal to be as independent as possible as an adult, if only so that the dad and I can retire and travel the world (selfish, I know, but who can pass up a permanant holiday)

Now your turn.... think of 6 things that make you happy, feel free to add them as comments below, or write them in your blog

The Muse
Travels of a Lemonead
Purring not Laughing

Breast Feeding, the taboo topic

2008-07-15T21:07:00.000+01:00

I have started this post so many times. Will I write it....no I won't, no, I will, nah. Well now I have finally decided to do it. Breast feeding is something that, to me, was one of the most natural things in the world and is now something I feel very passionately about. I was breast fed, so was my brother. The Dad was breast fed, the only one of four. My aunt has breast fed all three of her boys. My three sisters in law breast fed all their children. So of course I was always going to breast feed. I was shocked to find out that it's just not the norm in this country. The breast feeding rate is shockingly low, approx 40%, but I believe the number of women who continue after a few weeks drops again.

The one thing that you are not told is how bloody hard it's going to be for the first few weeks. Natural my arse. Nothing this "natural" should hurt this much (this goes for child birth too by the way, maybe I should have had that epidural). And it is hard, very very very hard.

I had planned to go to a local breastfeeding group the week before Cathal was born, but he had other ideas and entered this world on the day the group was on. So that was that, I really hadn't a clue. Then he just would not take to breast feeding when he was born. I now know that it was due to his sleepy, I've just been born, and I have downs, and low muscle tone all over, poor me thing he had going. Also, the three little heart conditions didn't help in any way. He wasn't breast fed at all the first day. He was put on a drip when he got to Crumlin that night, and I think I tried the next day, but now joy. The nurse was lovely, and did try to help, but she didn't really know what she was doing either. I think that the nurses and midwives in this country only get minimal training in breastfeeding, so can't give any practical or knowledgeable advice. They do try, but nothing beats first hand experience. This seems to be why so many women give up so quickly, the lack of good advice and the lack of support. A few posters in the maternity hospital and a leaflet I just happened to spot in one area was my guide before Cathal was born. If this is any indication of the support out there, it's not surprising why the numbers are low.

Luckily, one of my sister in laws had lent me her pump (thank you so much L!!) that she had finished using. This was a life saver, I was able to get my supply going and bottle feed Cathal EBM and he also got formula. I kept on trying to latch him on over the next few days, but he was so sleepy (very common for new heart babies), he would suck away for 5mins, then go to sleep. He was getting more and more jaundiced, which just made him sleepier. So, that was three things making him sleepy, downs, heart, jaundice. It was a vicious cycle. Even though I kept trying to latch him on, we would bottle feed him too. The routine for the day was, get up, express, go to hospital, spend all day there, home at about 10pm, express before bed while boiling everything that needed to be sterilized (including the actual motor part of the pump, it still works though), alarm set for 4am, get up express while falling asleep in the kitchen.

By the time he left hospital, I was expressing enough for him. I kept this up at home for a few days (and we bought a sterilizer, well worth it for the two weeks I used it). Then I hit a solid brick wall, I just coudn't do it. He wasn't getting it, I wasn't getting it, we were both all over the place. Expressing is such hard work, firstly, you feel like you belong on a farm, so that doesn't help your confidence, secondly, I could not express enough for Cathal. He wasn't latching on, I was so exhausted from the 10 days he was in hospital, I broke down. I remember crying in the Dad's arms saying that I needed to sleep just for one night. When Cathal got home, I would have to wake him up at 4am(too sleepy to wake himself up), try to feed him, which would take about 30-40min, then express for another 30min. I went out that evening to buy a box of formula (NOOOOO.....don't do it!!!) We made up a feed (it's far too complicated, you need to boil water, then let it cool, then exact measuring and mixing and then warm it up again!?! Takes 5 hours to make up a bottle) It did not go down too well, he threw most of it back up, awful gloopy stuff. Mister Cathal was used to booby milk and pre made little packets of formula, if you don't mind.

I posted my dilemma and crazy stressed out cry for help on roller coaster, and the fantastic ladies on the breast feeding board showed me the light!! Hallelujah, people who know what to do and what I am going through. They told me I was not alone. Most breast feeding women go through this, they sent me to Kelly Mom . This is an amazing website, full of practical, step by step, picture described latching on positions and other fantastic information. I tried the techniques, and low and behold, it worked!!!! Cathal was latching on. Good buy pump (or so I thought).

The second time Cathal was in hospital, I was able to breast feed him on demand in hospital, express enough for him during the evening and morning for the night nurses. He got formula once, by accident (don't ask, I am still raging about it). While he was in ICU, he was tube fed my milk, and I truly believe that because of this, he made such a speedy recovery. He was waiting 2 weeks for the operation and during these two weeks, there was a nasty tummy bug doing the rounds on the ward. Did he catch it? Not at all, he's a strong boy.

If you can breast feed, you should. Feeding a special needs baby though is tough, small mouth, low muscle tone, tongue tie, heart problems, all contributed to Cathal's slow start. But we got there. If we can do it, any one can, you just need the motivation, the drive to keep going.

It is hard to start, and painful, but it does get easier. Breast feeding is a supply and demand thing, no matter what size you are, you will always have enough (I am a testament to this, not too big on top am I). Trust is one of the things that you also need to learn. Your baby knows how much he needs, so no need to obsess over how many ounces he's taking, trust him.

I plan to breast feed up till he is a year old, so that he can get the full benefit of my immune system while he recovers after his big operation. I would encourage all the lovely mammies to be out there to try it, that's all, just try it, and give it a chance. You do grow to love it, eventually.

Not a boob in sight

Chapter 10: How Great My Son Is

2008-07-15T20:59:00.000+01:00

I am going to take a moment to list all the fantastic things that Cathal does. So much that we are told by the medical people can be negative, lots of "delayed development" is bandied about. The books outline all these delays in detail, the likely medical problems. Well, now I'm fed up with it all, I know all about the delays he is likely to have, and now I'd just like to focus on all the fantastic great things my son can do right now.

Numbero uno: When he is on his tummy, he can lift his head really high. He also now tries to tuck his knees under his bum and lifts it up. He manages to inch forward very very slowly. Only problem is he hasn't figured out how to get his right arm out from under him, so he doesn't get very far.

He laughs when he gets tickled under his arm and on his tummy.

He smiles at me when I pick him up out of his cot.

He has the best conversations and can make lots of different noises.

He holds his head up very well and can sit up with just a little bit of support from mammy and daddy.

If he goes to bed without his sleep bag on, he manages to get on his side and wiggles around so that he is lying across the cot instead of length ways.

I'm going to lie this way, if you don't mind

He loves listening to singing and smiles when we sing to him.

He is really great at shouting at me when he is not happy, and only a boob will comfort him (he has me wrapped around his little finger)

He can roll onto his side from his back and he can roll from his tummy onto his back.

He can through a punch at his toys that hang over him when he is on his play mat, chats to them, catches them with both hands and tries to get them into his mouth.

He can lift his legs up 90 degrees when he lies on his back.

He is still breast feeding, even with a bit of low muscle tone, a smaller than average mouth and a little tongue tie.

He plays peek a boo. If he is lying on Mammy or Daddy's chest, he looks up at us then flings his head forward to hide.

He likes watching Richard & Judy (well, this isn't necessarily a good thing, he likes looking at people on the telly).

Ohhh, look what Richard has said now!!!

Best of all, he has decided which fingers he prefers to suck. His middle and ring finger on his right hand, just like his Mammy and Mammy's brother used to do.

Baby on Board

2008-07-14T19:59:00.000+01:00

I don't know how many of you got a chance to see the latest edition of Baby on Board on RTE.

http://www.rte.ie/tv/babyonboard/s2_episode5.html

I bring it up because the similarities were uncanny. The couples son also had downs and four heart conditions (damn, he beet us with our measly 3 conditions). It was so nice to see others in the same situation, not that I would wish this on any one, but to see that we are not alone was a huge comfort. We recognised everything, the gauntlet of emotions, the door into ICU, the waiting room were you wait while your baby is in surgery, even our surgeon, Freddie (that's Prof. Freddie), was there. I did shed a few little tears, because even though we have been through a surgery, we haven't had the big one yet. It's the heart and lung machine that scares the bejesus out of me. The six hours of waiting doesn't help either. I wish we were on the other side, but we are not, and we still have to wait for the time to come. I try not to think of the upcoming surgery too much, you could start to get obsessed with it. The best thing, as with everything, is to take it one day at a time, and cherish every moment, even when all that Cathal does sometimes is scream in my ear the entire day.

Slowly, I have come to realise that we are not alone with Cathal, there is a huge community out there, and I am starting to get involved. I recently joined the Down Syndrome Ireland discussion form, and so far loads of people have said hello to me. I also sent in the application form to become a member of DSI (look at me being organised!!). Rollercoaster has been fantastic too, and it's there that Nick (Downsdad) introduced Jacob to me and sent me 'Welcome to Holland'. I realised that it was ok to grieve, and I found it easier to accept it all through Jacob's story. (Thanks Nick).

I would like to thank every one who has sent their best wishes and support over the last few months, and I hope you keep reading.

I have a feeling that I am going to meet a lot of good friends on this little journey that the three of us are on.

Bye Bye Pussy Cat

2008-07-14T19:46:00.000+01:00

I am so sad to announce the death of our pesky beloved cat Leo. He died on Sunday afternoon, while we were out. He seemed to be doing much better after just starting on some tablets and special food for his liver failure that was diagnosed about a week ago. Even though he was a pest, he was our likeable pest, and we miss him terribly.

Cathal and Leo on Sunday morning after kicking
mammy and daddy out of bed
"Now we can final get a bit of kip"

Chapter 9: They Have a Lovely Disposition

2008-07-08T20:20:00.000+01:00

Last week, Cathal and I popped down to our local GP clinic to get his first round of vaccines at the vaccine clinic. Our family GP doesn't do the vaccines, so that's why we had to go elsewhere. We got to the clinic not too late in the day, only two babies ahead of us. Apparently, only babies and oldies need to see the doctor, no in between people there at all in the waiting room. Then we had a lady sit beside us who just kept giving out about having to wait to see the doctor, first to herself, then to us, then to a man she knew on the other side of the room (sigh!).

One baby down, two babies down, OUR TURN.

The nurse took our details, looked Cathal over and then asked if he had any heart conditions. Oh dear, is it that obvious, can you see his heart through his chest? Oh, she saw he has downs, I get it now. She also asked the big one, did you know before he was born? Nope, but do see the previous post.
"Grand so, because he is a new patient here, I'll just get the doctor to give him a quick check."

The doctor came in, she listened to his chest to make sure his lungs were clear for the needles. He was kicking like mad, he spotted a lamp and was totally fixated and excited about it. But the shock of the cold stethoscope and a strange person touching him did not go down too well, and he started crying. We hadn't even started the injections yet.

As he was crying, the doctor turned to me and said, "Ahh, but they have lovely dispositions".
What's that now, babies? Well yes, they can be pleasant.
I replied with "I don't know about that, he can be a real terror".
To which she said "Ahh no, but really, they do".

Now, I only have experience with one little baby who happens to have downs, but he is a messer and can be the most frustratingly stubborn four month old in the entire world. He has days where he cries at everything, if he is on his matt, if you move him to the sofa, if you carry him around, if you look at him, god forbid if you try to kiss him when he is in a mood, anything will set him off. Then the next day he is sweetness and light and full of cheer. My head is wrecked. If there is a lovely disposition in there, it must be hibernating.

The nurse gave him the first needle in his right thigh. His answer to that was "That really, really hurts"
Then the second needle went into the left thigh....."JESUS CHRIST THAT F*CKING HURT LIKE HELL WHAT DO YOU THINK YOU ARE DOING MAMMY HOW COULD YOU I HATE YOU I HATE YOU I HATE YOU"

Remember dear, you have a lovely disposition. I finally got him calmed down by bouncing him up and down while he rested his chin on my shoulder and screamed in my ear. But I made a fatal mistake, when he stopped crying; I did the mammy thing, and kissed the back of his head....
"WHAT DO YOU THINK YOU ARE DOING YOU COW, I DIDN'T TELL YOU YOU COULD TOUCH ME EVER AGAIN, I HATE YOOOOUUUUUUUU"

disposition....lovely?!? Where's that doctor again, maybe she could prescribe one?

Funny the attitudes and preconceptions out there to disability or special needs. I often get comments in the local supermarket from the oldies "God Bless him". God bless you too, in the name of the father etc amen. No blessing required thank you, he’s just fine the way he is. No divine intervention necessary. If he gets another blessing like that, he is likely to spin his head around 360 degrees, not baptized yet!!!

I don't claim not have some of those preconceptions too, but I am learning, there is no norm, every one has their own character and way about them, and Cathal is no different.

Chapter 8: Did You Know?

2008-06-30T22:13:00.000+01:00

Whenever I meet other downs or heart mammies, this is one of the first questions I am asked. Did you know before he was born? No. But I wish I had. Most of the other mammies didn't know either. But I did meet one recently who did know about her daughters heart condition and down syndrome. I asked her if she was glad that she had found out, and she was. I believe in 20 week anomoly screening. This option should be given to every woman in this country. It seems at the moment that only a few hospitals offer it, the others are just too overwhelmed with the current population boom and just don't have the resources. Now as I've said before, I am young and the chances of my having a child with downs was 1:1200. That's nothing, but yet it happened. And we didn't know.

I am not angry that his three number 21 chromosmes were not picked up on. It's the heart that gets me. He has three major defects. The most noticable being the absence of the centre wall of his heart. How did no one see that? I'm a "first timer", and so was scanned at almost every visit in the hospital to check the heart beat.

"Hello"
"Hello, sit up there and we will listen to the heart and measure your tummy"
"bu doom... bu doom... bu doom"
"Fine, any problems?"
"Nope"
"Ok, see you in 8 weeks"

And that was it, two hours waiting and queing for five minutes with a doctor. The doctors had to get through so many women, they just didn't have the time to be thorough. I don't blame anyone, it's no ones fault that Cathal has a dodgy heart, I just don't understand how it was missed.

What would we have done? Well, nothing, but we could have been prepared. It would have made no difference to Cathal's health, and he would probably have been whisked off to ICU as soon as he was born. We would not have had the few hours with him that we did. On the other hand, we could have told our famillies before hand, calmly and face to face. We could have done all the research and have been ready to face anything. We could even have had all the forms ready to fill out, maybe partly filled, and have had a list of our entitlements.

I know that there is a fear that if people find out at 20 weeks, they may abort. That is a real concern, and I believe that in the US, if something is wrong, you are given a three week 'extension' in case you feel you can't cope with a special needs baby. This would never have been an option for us, from the moment I found out I was pregnant, I felt an unwavering urge to protect that little baby. Not the cluster of cells, the baby. The 12 week dating scan just reinforced that feeling ten fold. We could see him shacking his little closed fists at us, and we fell in love.

If we do have another in a few years (what do you think The Daddy?), I will be demanding every test in the book. We should be given the choice, I am a firm believer in choice.

Did you know? Would you have wanted to?

Chapter 7: Dealing with Downs

2008-06-26T20:42:00.001+01:00

Finally, the heart is behind us for a while. He will still be going to see his cardiologist (still can't spell that word) every few months, ("Nope, still not magically healed up yet") and we still need to watch his breathing and make sure he doesn't go blue. Surgery is planned for about next March, when he is one, so we have a breather to get on with our lives. Let the games and fun begin.

Just before Cathal went back into hospital for the second time, we had started to get our thoughts together about this whole extra chromosome thing. We got the "Starter/ Beginners guide" pack from Down Syndrome Ireland, read everything we could get our hands on, ticked off the physical traits that Cathal has (folded tops of ears?check. Wibbly wobbly neck? check. Small mouth? check. Squishy up flattened cute as a button facial features? check, check and check). We started to come to terms with the very likely possibility of low IQ, permanent help from us or others, delayed learning, risk of ear infections, poor eyesight (although that one he will get from his Mammy, and poor hearing too), dead straight hair (bohoooo.....he dosen't have mammys curls) and all the other things that come with having 3 number 21 chromosomes. We got our act together in terms of all the tax stuff and the other entitlements.

Lets pause here to analyis the forms that you need to fill out. The DCA (Domicillary Care Alowance) has to be the most ridiculouse form I have ever seen in my life. I read it, the Dad read it, then we looked at each other....what??? How do we fill this out. We thought about it for a couple of weeks, then asked our social worker, from the hospital, her advice on it and finally got it done. Sent it in with two letters, one from Crumlin and one from the Coombe, both confriming Genetic Testings on Cathal stating that he has Trisomy 21. A few weeks later, I got a letter in the post to say, oops....you forgot to send in his birth cert. Now I don't remember any mention of a birth cert, but when I sent it in, Cathal was in hospital, so the ol' head was all over the place. The letter told me that I could POST the birth cert into my local health office, and they would copy it and then POST it back. I do not think so. I have heard too many horrer stories of things going missing. So, I bundled Cathal into the car seat, and off we zoomed down to the health office. Hand over certificate to appropriate person, and wait for it to be handed back. The girl was lovely, and there was lots of ohhhing and ahhing at Cathals lovliness.
"So, it will probably be a few months before you get a doctors appointment for Cathal to be assesed for the allowance"
What now??? It's genetic. Do they do another genetic test then and there? Do they examin him with a check list for down syndrome.
"Ah now wait, he's missing a feature, he has two folds in the palms of his hands like everyone else, not one!!!! I believe Cathal's Mammy, that you are trying to trick us!"
I mean honestly, if they have the paper work and letters, what is a HSE doctor's report going to add in our case. At least it will be back dated to his birth (che ching).

A work collegue of mine also has a son with downs, and was a huge help and gave us great advice. He sent us on loads of information (thank you Fin!). The thing is you don't know what to expect and you don't know what the next step will be. The Coombe had mentioned early intervension to us. We did not have a clue what this meant. When Cathal went for his second check in the Coombe, I asked about the early intervention, and found out that we had been referred to St John of Gods about four or five weeks prior. I rang them up to see what was happening and what we should do to get things rolling. I was put through to another lovely social worker, who will be Cathal's social worker from now on, and she explained the situation. They had actually discussed him a few days previously, and she was hoping to come out and see me at home. Sure, no problem, just need to hoover first.

So social worker M popped out, took a brief family history, where Mammy and the Dad work, how long we are together (8 long years...and no Aunty Deutschland M, no wedding in the near or distant future). Next step was that social worker M would report back, and we could all go in to visit the head of the Menni services.

Two weeks ago we had that meeting. All we wanted was for Cathal to get started in early intervention as soon as possible. And that's what we got. He started last Friday, it was like going to school. There were two other children in the early starters (0-3yrs) group last week. We sat in a circle and sang songs (I even remeber one, and some of the lámh signs). We listened to music and shook rattles. Then there was snacks and painting time for the two older children while Cathal got a bit of booby time and Mammy got to speak to the other Mammies with a lovely cup of tea. They are also downs mammies, and one heart condition mammy, so lots to talk about. I don't think Cathal understood what was going on, but the important thing is that he is in, and now he should be getting the best care and best start in life possible. I think that this group will probably become very important for me too, I'll be meeting other special needs parents, it's that support and 'I am not alone in this' feeing that will keep me sane over the next few years. School again tomorrow, can't wait.

Cathal is the youngest child they have had at 3 months of age. Maybe we are the exception, maybe a lot of other famillies wait to proccess the information and diagnosis. But we have always felt that he is our boy, no matter what, and we want the best. If that means he starts early intervention very early, so be it, the better his start in life. We think forward, not back. Nothing we can do now can change who he is.

Cathal would not be Cathal without that extra chromosme. He would not be the beautifull baby he is today.

Happy/ Sad/ Happy/ Sad

2008-06-19T22:47:00.000+01:00

A Big Thank You

2008-06-19T21:17:00.000+01:00

We would like to thank all the staff in St Teresa's ward who took such great care of Cathal. They are all dedicated to each patient, and with out them, I don't know where we would be. During the time that Cathal was in hospital, I realised how hard the nurses work. In my opinion, they deserve everything they are asking for, reduced hours and higher wages. They work 12 hour shifts, rotating between day and night, and if a patient needs extra help or looking after, they will stay behind after their shift to make sure their patient is being looked after. Nursing is a vocation and I know that every one of those nurses love their work and would continue to look after people no matter what. We are truly lucky to have such dedicated people to look after us.

Chapter 6: The operation

2008-06-16T20:59:00.000+01:00

Sunday the 20th of April, we got to the hospital the about 8.30 in the morning, straight out of bed, no breakfast. We held on to Cathal's hands, kissed him on the check, stroked his hair. Then around 9, he was taken away to theatre. His nurse told us that it would be around two and a half hours before he was back, so we decided to go and get some breakfast. There was no point hanging around, we only live 5 minutes away. So we checked and double checked that they had both our numbers. When we got home we realised there was nothing to eat in the house. Since we had not been living there for the last two weeks, the cupboards were bare. We popped down to the local greasy spoon cafe on Sundrive Road to have a hearty breakfast of pig, pig and some more pig thrown in for good measure. We had only wasted an hour...hmmm what to do now. We were both itching to get back, just in case, so back to the hospital we went.

Being a Sunday, there was no one around. Usually, surgery is during the week so there is your clinical nurse there to look after you and keep you updated. No such luck on Sundays though. We went to the surgery floor to see if anyone was there who we could talk to, but the shutters in reception were closed and not a mouse was stirring. Up another floor to ICU and buzzed the intercom.
"Yes hello, it's Cathal's parents"
"Hang on just a minute"
Cathal's nurse came out to us and told us he was still in surgery, so he showed us to the special waiting room. This is a locked room only accessible by a key that the staff have. There is a couch, an armchair, coffee machine, water cooler, cd player, TV and a box of tissues, carefully and thought fully placed at an angle on a coffee table (it's funny the details you remeber at times like this). It was about 10.30 at that stage, another hour to wait. We switched on the telly, oh good, fuzzy reception. I remember that we watched an ancient episode of Animal Park, they were cutting weeds in a river. It is by far the dullest thing I have ever seen, and yet it was distracting enough. Every now and then, I would fade out and think about my little boy, in surgery, opened up. Stop thinking of that; what was that about the weeds again??

An hour later and the Dad started to get a bit twitchy, where are they? We should have heard, maybe we should go ask. Finally the ICU ward nurse came in to us, I think it was about 11.50. "Cathal is fine, he has just been brought back to ICU and we are cleaning him up. It should be another 30 minutes before he is ready." Thank God!! The dad said after she left, "I don't know about you, but that was the longest 3 hours of my life".

To be honest, the rest of the day and the following days are all a bit hazy. I sort of blanked out a little. The stress finally lifted, and a sense of peace and calm took over. I think that after half an hour we left the parent waiting room and again buzzed in to ICU. Our brave boy was there, with all his wires, IV's, drugs, morphine. The Dad was delighted, wohoo, they turned him into a transformer (before Cathal was born, he had suggested Megatron as a name). If you can't laugh or smile at these times, all you will do is cry, and I had cried more tears those three days than I cried my entire life.

The following days, we would visit about two or three times a day. Each time something had been taken away. One drug one day, another the next. Less things were being monitored each visit. Finally they started to tube feed him, 15ml every 2 hours, then that was upped to 28ml. His ventilator was taken out on the Tuesday and he was awake when we went in to him. That just lifted our hearts. He was finally back! On the Wednesday he came out of ICU. We got in that morning and buzzed in to ICU, "He's gone back to St Teresa's". We walked cautiously up the corridor peering into every room, and there he was. He had just been moved in. They were handing him over. When they had finished doing the paper work, we went into the room and there he was, my beautiful little son, awake and starving. He still had the feeding tube up his nose, but I had heard such horror stories of babies with downs forgetting how to feed or getting lazy about it, that I asked the nurse if I could feed him straight away.
"Of course you can"
So I picked him up very gently, so concious of his incision. Well, he remembered that the previous Saturday, he had been taken away in the middle of his dinner. He gulped the food down, poor little mite was starving. The following day, he was feeding so well, they took out the tube. The staff seemed surprised that he was doing this well, but they don't know that my fella is a real fighter and nothing gets between him and his grub.

He was closely monitored, nappies weighed to make sure he was eating enough, he was supposed to be fed every three hours, but I cheated and fed him when he wanted which was every 2. He was given two diuretics, iron and aspirin every day. The aspirin is to keep the blood thin and stop the shunt from clotting over. He will have to continue taking this every day until the big operation. He has just been taken off one of the diuretics today and the iron (yippy, drug free baby, almost).They were also giving him a little Calpol. Poor guy, every time he coughed or sneezed he would cry with pain. By the Friday, his oxygen levels were not even being monitored when we were in the room. He was doing so well. We almost got home that day, but Dr.C wanted to keep him in over the weekend, just to make sure. However, his cannula was taken out, the last transformer part of him left. Finally, we had our baby back, no tubes or wires.

After an uneventful weekend, Monday final came around, and by 2.30 that afternoon, I was home with him.

Happy Father's Day

2008-06-14T20:16:00.001+01:00

Happy Daddy's day to the Dad, Grandad D, Grandad J and grand-pere

Chapter 5: The Day Before the Operation

2008-06-12T21:55:00.001+01:00

Saturday the 19th of April, I got to the hospital at about 9.30, the usual time. I had to leave the Dad behind, because he was too tired to get out of bed and wasn't ready. When I got to Cathal's room, he had the green tube back in his nose with the oxygen turned up very high. The blow bag and mask was also by his face. He was on a drip again and I noticed that there were extra medications in needle form by his bed. His nurse for the day (who's name I have shamefully forgotten) followed me in within seconds. She explained that Cathal had had a very serious spell at around 6 that morning. They had had to give him extra beta blockers directly into his blood through his cannula and they were keeping a very close eye on him. He was much worse. I rang the Dad in tears and he arrived in minutes armed with extra clothes and scratch mittens to keep his hands warm (they were freezing, even in the heat of the room).

At about 11, we went to the cafe for a bit of breakfast in a daze. When we got back to the room, we found out he had had yet another spell in our absence. The doctor came in to speak to us and explained that they were giving him the extra beta blockers each time this happened, and this seemed to be helping, his oxygen levels would come straight back up. We went to lunch around 1.30, got back to the room at 2 and he had yet another spell, while we were there. I'll never forget the feeling of complete helplessness as the red numbers kept dropping, and I could do nothing to raise them. All of a sudden, there was a flurry of activity in the room as nurses were coming in to check, putting him back on fluids, checking and double checking the product codes and dates on everything they were putting into his system. The doctor in the meantime was ringing the consultant on call to check if they should continue giving him the beta blocker or go straight to morphine. The tone in the room had rapidly changed. This was serious. I couldn't stand it any longer, I had to leave the room. I just stood in the corridor with my face in my hands crying uncontrollably. The Dad wrapped me up in his arms, and then a nurse brought us down to the parents room.

We sat and waited, tears still streaming down my face. As I've said before, I cried for three days solid, from the day before to the next. The ward nurse finally came down to talk to us (it seemed like an age, but was probably only a few minutes). She told us that they were still looking after him, the consultant had said to stick with the beta blockers. What she told us next will stick in my head for the rest of my life. They were going to move the crash cart up to his room and leave it outside, just in case......

His life was now in danger, well he moved up the waiting list fairly quickly that day. He wasn't critical any more, he was emergency. After about 10 minutes, I sent the Dad up to the room to check on him, "come and get me if he's ok". The Dad never came back, so I cautiously made my way up that long corridor and stood outside his room looking in. The Dad was holding him.
"Is he ok?"
I could not have gone back in if he wasn't.
"Yes he is"...

I think I held my little boy for the rest of the afternoon, clung to him more like it. The nurses were telling us that the surgeon on call had been phoned and he would operate the following morning. They promised that they would get Cathal into ICU that night before their shift ended. They were true to their word. At around 6 that evening, while I was in the middle of feeding him, they got the call, a bed was available. Some one had been kicked out to make way for him. The anaesthetist came to speak to us, they were going to sedate him tonight and get him ready for surgery now for the following morning. So off Cathal went, a bit angry at having been disturbed in the middle of his dinner, followed by nurses and a tank of oxygen. We didn't get to hold his hand as he was put to sleep, or reassure him. That was taken away from us, there was no time.

We were told that it would take a few hours before we could see him in ICU. So we packed up his stuff, said goodbye to the nurses and went home. Luckily, the frenchies (my aunt and cousins) and Nan P were at our house and they had dinner ready. So we ate with them and when they left to go home, we went back to see Cathal. It was about 8.30 that night.

He was in the far left hand corner of ICU. He was stripped of all his clothes. He was in an open incubator that kept him very warm and toastie. He had lines in his neck so that drugs could be administered straight into his system. He was on a ventilator to control his breathing and oxygen saturation levels. He had a blood pressure monitor directly inserted in a vain in his hand. He had a cannula and a catheter. He was all ready for the next days operation.

His nurse assured us that he was comfortable and that he couldn't feel anything. He also told us that the top of Cathal's right lung had collapsed. No wonder he was having trouble during the day. We didn't stay long. You can't stay more than 30-40 minutes in ICU, it's too hard. He was in the best of hands. Each patient there has their own nurse. There is also another 3/4 nurses floating around and a couple of doctors. It's a busy place. Readings of all the monitors, drips and medication dispensers are taken every 30 minutes. Alarms go off all the time, but they are very pleasant alarms, like chiming of bells almost. Cathal's nurse told us that we could bring in blankets, socks, anything we wanted for him.

Surgery would be around 9 the next morning.

Chapter 4: Back In Hospital

2008-06-08T21:47:00.000+01:00

Hospital Routine:
7.30: Mammy & Daddy wake up and eventually manage to crawl out of bed
8.00-9.20: Mammy expresses that nights milk for Cathal (welcome to the farm), showers, dresses, eats breakfast
9.30ish: Mammy gets to the hospital and has already missed Cathal's bath. Cathal is fed by Mammy and he's all excited about it, arms and legs kicking all over the place
10.00-11.59: Waiting around for possible doctors, nurses
12.00: 4ml of beta blocker please
12.05: More food please Mammy
13.20: Grandad J pops up for dinner in the canteen and Mammy tries to get away from Cathal to join him. Mammy franticly tries to find Cathal's nurse to tell her "I'm going for lunch, he's been fed, don't give him any more, back in 20min"
13.40-17.30: Waiting around for doctors, nurses and feeding Cathal
17.30: Hello Daddy, how was work?
18.00: 4 more ml of beta blocker.... yuck!! Bobbie please Mammy to wash that sticky taste out of my mouth
19.00: Try to get Cathal to sleep to get home for microwave dinner for an hour
20.00: Back in to feed Cathal and hope that the night nurse hasn't fed him yet
21.00-22.00: Put Cathal back to sleep and go home
22.00-23.00: Try to unwind, relax, chat and express again before bed

I did this every day for two weeks while waiting for Cathal's surgery to be scheduled. To keep his saturation levels up, he was getting 4ml of beta blockers every 6 hours to try and relax the overdeveloped muscel in his heart that was restricting blood flow to the lungs. But after a few days, this had to be upped to 6ml and a few days later, this was again raised to 8ml. But still the saturation levels were only just staying above 75%.

A week after he was admitted, he had a spell. This happens when his oxygen levels get very low but don't come back up without help. When this happens, we are to push Cathal's knees right up to his chin, a bit like rolling him into a ball, and this has the effect of pushing blood to the lungs and basicly getting the heart working properly again. Problem was this was now having little affect. We got into the hospital on the Sunday, and Cathal had a little green tube taped to his cheek blowing oxygen into his nose. There was also a drip in his room.What happened please??? Enter nurse; well, he needed a bit of help. Oh dear....

"What you lookin' at? I'll shoot you with my laser!!!"

In the meantime, more of Mammy's frenchie relatives arrived in the country for a week. "Bon jour"!! Not great fun, I was hoping to spend time with my aunt and young cousins, but Cathal had other plans for me. A few days later, I had a feeling that Cathal was getting a little worse. He was getting even more tired after feeding and was more lethargic in general. He had to have a little mask constantly beside his face to blow extra oxygen in his general direction to keep his saturation levels up. Things just kept going down hill while we waited and waited and waited...

On Thursday the 17th of April, Cathal had a whole slew of tests, ECG, Echo, X-ray, MRI, all of his heart. His bloods were taken to make sure their would be blood in the theatre for him. We had been waiting 10 days at this stage for surgery while watching our little boy slowly deteriorate in front of our eyes. The problem? He wasn't critical enough. There are 6 ICU beds, and none were available. He would need to go to ICU after his surgery to recover, so that was the hold up, a bed. They were full, sorry, no room at the inn. Emergency cases first, then critical. Cathal was 3rd on the critical list. All elective surgery had been cancelled, and he was finally scheduled to have surgery on the 21st of April. He would be exactly 6 weeks old, far too tiny to have surgery.

Friday the 18th of April, Cathal seemed worse again. The surgeon came for a visit to explain the surgery. They were going to put a 3mm shunt (a plastic tube) into Cathal, to divert blue blood going to the heart straight to his lungs. This would mean that more blood could get to the lungs thus temporarily fixing one of his heart conditions and getting him big enough for the big operation. Then surgeon number two comes in to get me to sign the consent form. Oh dear, this is all getting a bit scary. In the mean time, I asked for our cardiac nurse to pop down when the dad came back from work to go through everything with us and to prepare us for the surgery on Monday. She was on holidays, but her team mate (these amazing people work in pairs) called down to us around 7.30 that night. And this was when I started to cry, and didn't stop crying for 4 days. She went through every thing, if such a surgeon does the surgery as planned, this is where he will cut, this is the scar Cathal will have, and she went through exactly what would happen on the day. We could bring him down to the pre operation area, get gowned up, hold his hand as he was put to sleep, give him a kiss and wish him luck. She brought us to ICU, and the tears got worse. My baby can't come in here....... he can't have all these tubes and machines around him, he's too small.

8.30 that night, we went home starving, exhausted and in tears.

Interlude: The Neurotic Cat

2008-06-07T17:51:00.000+01:00

The beast

We have a cat called Leo. Leo is 15 or 16....well very old and completely neurotic. He's afraid of tinfoil, people, the cling film (because the box looks like the tin foil), the dishwasher door when its open and you put away dishes, children, builders, other cats, other peoples gardens, plastic bags and the evil hoover. He goes up stairs to bed and cries (can some one come up and tuck me in please), even though we have never gone up to him. He cries at you if you stand, if you enter the room, sits at the bottom of the stairs and looks up and cries.......need I say more

A little history of the cat please- Well, he did belong to Nan P, but she moved to the big smoke a few years ago and brought the cat with her. They both lived with us for a few months while her apartment was being built, and then the cat stayed with us when she moved out. That's how we ended up with an old crazy cat.

While Cathal was in the hospital the first time, there was little time for Leo, so he started to lick his fur off. He does this when he is stressed out. He picks a patch, licks off the fur, then starts on another patch and on and on it goes. Now he's been to the vet several times for this and they put it down to a flee bite.

I don't think so....it's all in his head!!!

Turns out I was right, the vet agrees with me. We had moved house, new carpets, middle of winter, and he did it again. You can see him twitching and then he licks ferociously at the spot. And then it cost €90 for the vet + steroids + antibiotics. Ah here now, it's a bloody old senile cat.

So baby comes home from hospital. What the hell is this thing!!! Lick, lick, lick. And then just as he is getting used to the bloody thing, it's gone again, and nobody is around to look after him. Lick, lick, lick. Luckily there were a few steroid tablets left, one a day in bit of raw mince....tasty. All sorted....

Until, one day, that squirmy thing is back again!!!! Lick, lick, lick, lick, lick.... And now he's taken to sleeping in the laundry basket.

I give up with this animal, I really do. But we love him anyway...

Chapter 3: Home at Last

2008-06-06T19:42:00.000+01:00

Finally, after 10 days we were home. We took photos of the whole event, leaving the hospital, in the car, at home in the car seat, at home out of the car seat. Here was this sleepy little bundle that we had to now look after. Because he had been a bit jaundiced, we made sure to feed him every 3-4 hours like clockwork. We set the alarm at night to make sure to get him up for a feed. We obsessed about his nappy content (OH MY GOD!!!! Take a look at just what came out of him!). Every thing was going swimmingly.

The Frenchies (Cathal's great grand parents) even flew over to see him with their own eyes and make sure he was ok. They are so chuffed with him, he's a special boy anyway, but even more special to have two great grand parents who adore and love him.

"Hello grand-mere, hello grand-pere"

With a French nan and lots of French relatives, Cathal is destined to be bi-lingual. Already Nan P speaks in French to him. Speech and Language is going to have a great time dealing with two languages.

A few days after he got home, we had the public health nurse around (ohhh, he's lovely). "Is he back to his birth weight?" No "Is he breast fed?" Yes. "Oh, well then feed him every 3 hours". Every 3 hours, when do I sleep?? The thing that I have now learnt about breast feeding is that it should be on demand, baby knows when he is hungry, and eventually we got it. It took two weeks to get it established, but we got there in the end, I put my foot down and decided that I was fed up with all this messing, and I fed him the way I wanted too. And do you know what, that's when he started to put back on the weight and growing in front of our eyes. But that's a whole different story and one that needs it's own dedicated chapter.

So things were going along swimmingly. Another public health nurse had to come out to redo Cathal's heal prick test (ouch). But that was fine, I can cope with that. No problem. Then, one day, about a week and a half after leaving hospital, I noticed that when I was changing Cathal, his face, especially around his mouth had turned very dusky. I felt his hands and feet and they were cold so I bundled him up in blankets and we both looked at him in different light. Hmmm, still a little blue, and he's a bit quiet. But he perked up after about 10 minutes, so we thought nothing of it. And anyway, he always looked a bit dusky all over, never pink anyway.

A few days later, we went to the baby clinic in the Coombe for his first 'Downs' check up. Crumlin look after the heart, the Coombe take care of the genetics. We met a lovely doctor Michael who looked far to young to be a doctor, I think he had just done his leaving cert. He said to us, well I'm sure it's no surprise, Cathal has Trisomy 21 (damn pesky extra chromosome). He checked Cathal's hip and toes, and bum and tummy. "Ahh yes, you see his low muscle tone, you'll have to watch that." Cathal has this sort of concave line down his tummy, because his abdomen muscles are a bit loose. Actually, all his muscles are a bit loose. He looks like a flattened out frog when he sleeps. The other things that we will have to look out for in future is his hearing, eyesight, thyroid levels, the list goes on. Dr Michael was lovely, very good with the baby, he even set up an appointment with the physiotherapist there and then, who gave us tips to help Cathal build up his muscle tone. Dr Michael even checked his oxygen saturation levels and they were around 82/83. Fantastic, he's doing great.

This was a Wednesday, and the following Monday we had an appointment with Cathal's cardiologist. So in we trundled to Our Ladys. It all looks so familiar. We need to go and get an ECG? Oh yes, we know where that is, see you in a bit. Hello Dr. C, yes Cathal has gotten very big, he's doing great, breastfeeding away, a little fatty, and back to his birth weight. It's time for an echo, yes, he still has a few heart conditions, they haven't disappeared over night. And how has he been at home, any dusky spells? Well, there was this one time, but he got better. Oh, lets just check his sats just to be sure.

Dr. C sent us up to St. Theresa's ward to have his sats checked. We were sitting in the parents room with the ward nurse when the machine showed 68. 68???? Are you sure, they were in the 80's a few days ago. Cathal's cardiac nurse happened to be passing and spotted us, she came in and she checked the monitor, tried to warm up his foot, changed the sensor, anything to try and raise that little red number that was playing havoc with our hearts. Nothing doing, it wouldn't go above 73. Then they were all telling us, you know, it doesn't look like he can go home. Dr.C came up and confirmed it. He can't go home. But we only came in for a routine check? He has to come home, we've only had him home two and a half weeks. To say that we were devastated was an understatement.

Next stop, shunt operation.

Chapter 2: First 10 Days of Life in Hospital (Watching Mister Heart)

2008-05-28T16:36:00.000+01:00

We were so exhausted after that first day that we both slept like logs. The following day, everyone kept asking if we had slept, and I did feel a little guilty that I had slept so well the night before, even though our only child was in hospital. I have learnt that you can never let the guilt take over, it's a normal and reasonable feeling, but you do need to take time for yourself to rest and recover. How else can you give your child the support and love he needs to grow and develop.

So over the next 10 days, Cathal was monitored. The big concern was over his oxygen saturation levels. Due to his pulmonary stenosis, Cathal has less blood making its way to the lungs from his heart, this in turn means that he has less oxygen in his blood and this can be very serious and hazardous to his health if his saturation levels get too low. Almost every one has a saturation level of 100%. Cathal's cardiologist was happy for his sats to stay above 80-85%. The most obvious symptom is the blueness. He would have little blue lips or a dusky mouth and blue hands and feet (my little smurf).

Fig A. A real smurf

We settled in to our room in Our Lady's, and the "Congratulations!!! It's a boy" cards came flooding in, and the presents, and the flowers. We would go home every night with more clothes for him than we had brought in that morning.

Hospital is a strange place, it's a little world of its own. You forget that there is life outside. Did I see the news??? What news? The ward he was on had 19 beds in 18 rooms and all the patients on the ward are heart babies under one. We were given the room right next to the nurses station, and it's a busy place. There is a large window in each of the four walls, so you can see all around you, and since we were there with Cathal everyday for most of the day, you begin to look into the other rooms, start speculating about the other babies and parents, make up stories about them, it's like living in a real life soap. I was amazed at the amount of babies that also had downs, and it was comforting, in a way, we are all in this together. It's an unspoken link or bond, you get to know your neighbour, even though you might never speak to them, and you watch their baby get better and you feel so happy for them if they get to go home or even move rooms down the corridor closer to the exit (the further you are away from the nurses station the better your baby is, the aim is to get to the very end of the corridor)

We had all of Cathal's cards hung up around the room, we had more stuff for him then any one else. Obviously, we were new at this, others had the minimum for their babies, and I understand why that is now. They had had their babies at home, the less amount of things you have for your child in hospital, the sooner you hope they will be back home. For me, that little room was home for Cathal, he knew nothing else. Every night I would look at his empty crib in our room and think that he should be there but know he didn't know this place. It's the hardest thing not to have him there with you all the time.

The two advantages of having a baby in hospital are you get a full nights sleep, and the baby weight drops off. People kept telling me "you look great, you've lost the weight!". My secret to post pregnancy weight loss!!! Stress and hospital canteen food....sign up now, only €599.99 for a 10 day programme, we'll take you through it step by step, we provide the sick baby!!!

Cathal's sats seemed to be staying up (Whooo!!) He had a little sensor plastered onto his foot that could read his saturation levels through his skin. Don't ask me how, I think they use magic. But the machine was set to certain levels, and if his oxygen dropped below that level, an unmercifully loud alarm would go off frightening the living crap out of us. The nurses are so used to it they tend to ignore it, they seem to have a sixth sense as to when the child is in any danger or not, so that leaves us parents looking at the machine, then at the baby, than back to the machine until some one comes in to silence the damned thing. Luckily the Dad figured out how to work that contraption, and after awhile we stopped jumping and started to casually glance across the room at the red flashing numbers. Ohh, he's fine.

While we were there for those 10 days, Grandad J, who lives 10min walk down the road from Our Lady's, took a fancy to the lunch served up in the canteen. You get starter (some kind of soup), main course (always beef/ chicken/ fish) and dessert for under €10. Now that's a bargain!! Grandad J has been known to go up there for his lunch, even when Cathal is not an inpatient, I'll say no more.

Finally the day came, we could all go home, the joy, the excitement. After hanging around for a few hours to make sure we had spoken to everyone (cardiologist, cardiac nurse, ward nurse, social worker) and being shown what to do if he had a spell where he went very blue or stopped breathing (I know, bit scary) we bundled him up in about 50 layers of clothing and 3 blankets and took him home.....

Going Home

Ohhh crap.....what do we do with this little person now???

Chapter 1: The Big Day Arrives

2008-05-27T21:42:00.000+01:00

At last, after 39 weeks of waiting our little man was on the way. Down to the Coombe we trundled at 8 in the morning on Monday the 10th of March 2008, and Cathal was born at 12.50 that afternoon weighing in at 3.95kg (about 8lbs11 in old money).

30 minutes old

I'll never forget the over whelming love and joy I felt, our perfect baby was with us at last. But hang on a minute, what is the midwife saying? She's concerned about his eyes and neck?
Ahhh, a paediatrician is being called, they'll sort all this out.
Excuse me? You need a second opinion? Why what's wrong.....
Enter a more senior paediatrician stage right.

And then everything came tumbling down, we were told that there was a very strong possibility that our son had downs syndrome and he could hear a heart murmur. My initial reaction was how could this have happened, I did everything right, no alcohol, ate well, didn't put on a huge amount of weight and I'm 28. I'm too young for this to happen, it's just not possible. But as I looked into his scrunched up little face, I suddenly saw what the midwives and doctors saw. He looked a bit different to other babies.

Before all this we had made the calls to the new grandparents, aunts, uncles, friends and work colleagues and so the word had spread. The "Congratulations!!!!!" messages were coming in thick and fast, and yet we were starting to realise that our lives had changed completely to the ones we had imagined we would have. My expectations for the rest of his life vanished in a puff of smoke. All I could think was that he will never be an architect, a computer whizz kid, never marry or have children of his own, will he go to school, will he live with us for the rest of his life??? So many questions and no answers.

I cannot praise the staff in the Coombe highly enough. They left us to come to terms with the news and bond with Cathal for awhile in the delivery room, and they arranged a private room for us on the maternity ward. I am so great full to them for their compassion and understanding.

We were brought down to the ward and shown our room. The head midwife then thought that Cathal looked a little dusky so she brought him up to the nursery under the pretence of giving him his vitamin K shot so as not to panic us. In the mean time Grandad J (Cathal's paternal grandad) had arrived-
sorry, baby's been whisked away to get an injection.
And then Nan P (Cathal's maternal nan) arrived-
sorry, Cathal is busy at the moment, he can't be disturbed.....
By the way, we have more news...he has downs syndrome. It's not confirmed yet, he needs a blood test to confirm it.
So we made the phone calls to tell the rest of the family the extra bit of news. But still the messages of congragulations were coming through from others.

Mr.B and Ms.C were still waiting to meet their new grandson and so Mammy and Daddy went in search for their little boy. I honestly thought we had hit the lowest feeling that could be felt, but there was worse to come. We were told that Cathal had gone very blue and the ward registrar had brought him straight to ICU. We followed him up to ICU to be told that he was getting checked and we could come back in 30min. More phone calls and some coffee later, we finally get to see him. He was in an incubator, stripped and sticky pads on his chest. His health was at risk, his tiny heart had not developed properly and he had to be monitored. The fear that set into my heart at that stage was overwhelming, to think that any thing could take him away from me shook me to the core. This news was worse than finding out about the downs.
They don't have the expertise to deal with heart problems in the Coombe and so he was transferred, only 9hrs old, up the road to Our Lady's Children's Hospital. Under the circumstances, I was also discharged, I wasn't going to spend the night alone without my baby or partner.

We are extremely luck to live 5 minutes away from both hospitals, and so we popped home for food. Two of our friends brought us supplies of chicken and chips, juice and moral support. We then followed Cathal up to Our Lady's and waited while the consultant examined him. He told us that Cathal has three heart conditions, complete AVSD, pulmonary stenosis and double outlet right ventricle. We were finally aloud to see him, and as I reached into his incubator to hold his hand and touch him, I just could not believe that anything was wrong. He looked so perfect, so sleepy, peaceful and warm. How can this tiny little person have heart defects and downs?

They must be wrong....