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

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

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....