30 June 2008

Chapter 8: Did You Know?

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, sit up there and we will listen to the heart and measure your tummy"
"bu doom... bu doom... bu doom"
"Fine, any problems?"
"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?

26 June 2008

Chapter 7: Dealing with Downs

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.

19 June 2008

Happy/ Sad/ Happy/ Sad

A Big Thank You

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.

16 June 2008

Chapter 6: The operation

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.

14 June 2008

Happy Father's Day

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

12 June 2008

Chapter 5: The Day Before the Operation

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.

08 June 2008

Chapter 4: Back In Hospital

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.

07 June 2008

Interlude: The Neurotic Cat

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...

06 June 2008

Chapter 3: Home at Last

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.