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.
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.
1 comment:
My Name is Cathal
Pink or Blue
With an extra chrome
or two
What I wouldn’t do
To help you
Understand. You see
It’s all them
- Not me! that’s
different.
Coz I am love
Light and hope
With super powers
Able to stroke
The hearts of men
So all can see
Beneath the hood
Every child
Is nought but good.
Love - Uncle John & Family.
Post a Comment