29 July 2008

Merci aux “frenchies”

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


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

28 July 2008

Happiness for me.....

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

15 July 2008

Breast Feeding, the taboo topic

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

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.

14 July 2008

Baby on Board

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

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

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"

08 July 2008

Chapter 9: They Have a Lovely Disposition

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"

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....

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.