From the moment that a heart baby is born you learn very quickly that their lives are ruled by numbers, it's all about the number's baby, and the hospital make sure they drill that into you, to the point that you freak out when you don't get the numbers you need and become a bloody wreck.
The first lot of number's and by far the most important numbers are the saturation numbers, this tells us how much oxygen is going round the body.
Oxygen saturation is a term referring to the concentration of oxygen in the blood. The human body requires and regulates a very precise and specific balance of oxygen in the blood. Normal blood oxygen levels in humans are considered 95-100 percent.
However in a heart baby it is less. Ruadirhi's would be 86 and that was after his first surgery. For him that would be good, in a normal healthy baby this would be bad. We were told that the lowest they would allow his Sat levels to drop would be 60's. As he would grow the number would get lower the more active he was the lower they would drop, this is when he would start to sleep more, and you got it we would keep an eye on how long he slept and how many sleeps a day he was having. These numbers will be one of the main things that keep them in hospital, if they can't keep the numbers up then its help from oxygen for them.
Weight is also a big issue. They need to be at a certain weight for surgery. Should a heart child not reach the weight needed this will delay any repairs or major surgery needed. Even for minor procedures they need to be of a health weight so that they have a better chance of holding their own and deal with the anaesthetic better. At the start Ruaidhri would need to be weighed up to three times a week until he was at a place that was acceptable and could maintain slow weight gain. This also is a factor that will keep a baby in hospital if weight gain is poor or should they be loosing too much too soon.
Feeds is another set of numbers, its all about increasing and calorie building, they need to be able to tolerate a certain volume of milk and keep it down, we found the more we put in it seemed even more was coming up. If they are unable to take the volumes required to grow then there is a knock on effect, no weight gain or a loss and low Sat levels can also play a part in this. Feed times as well become a great obsession. At first he was on 3 hourly feeds, then it moved to 4 hours after about three months of hardly any sleep. Then came the 12 hour night feeds, and two big feed over 2 hours a day. For these feed we had a pump, we had to set that at the levels of how long we wanted it to go over and what the volume of milk was. Should a feed start late or run over that would ruin my day and cause a freak out, all be it a minor on but still it annoyed me.
Medicine is a huge part and one that I used to freak out more about. The main one for us was aspirin as the hospital told us that this would thin his blood and also stop his shunt from blocking, if that was to happen that could result in death, yes the hospital need to be frank about this. We had a set time that he would get his aspirin it was a 7pm it was one of the only meds that never made him sick. The more weight he gained would mean upping the levels on feed and also on aspirin, and any stomach medicines that he was on. Due to the fact he wouldn't swallow these all had to be given down his tube, so we would have to make sure we never ran out of syringes, all different sizes for different medication, we would also have to remember the number of his feeding tubes, and yes as he grew the tubes would grow with him.
You learn the phone number for the ward off by heart in case you need some advice or you think something is wrong. You start to remember every date that your child goes in for a hospital stay or procedure, you remember all the dates for clinic appointments some times you could have three clinic visits a month, you count the months until the next big surgery is due, when you roughly get to that time you count every week after that. You become consumed by having to know numbers and this all starts in the hospital, they drill it into you that much that you start to think if we don't get the numbers then the worst will happen and the world will end.
I could be asked any question and I would have the numbers ready to reeled off, I was secretly always pleased with myself when I could tell them a short history of his Sats and milk volumes and weights, it became second nature to the point that I would be annoyed if no one asked. What I did learn was that due to the invention of the mobile phone and not having to remember people's phone numbers any more that at the start I would write everything down on a calender or always made sure I had a scrap of paper at hand and a pen, but as time went on I was surprised by how much information I was able to hold and remember, my brain had stopped being lazy and was working over time. The down side to having to remember all this information was that it had started to take over every conversation I had with people. This became the only topic I would talk about and know off by heart, I had stopped having normal conversations with people and it became very medical very quickly, even with people who had healthy children, it seemed that I was only ever having conversations about what the future would possibly hold for my baby boy, about when we were next due at clinic, if his feed had gone up etc, some days I would even bore myself. But this is how life was and is for many heart parents.
If I could give one bit of advice to anyone going through the same is that yes the numbers are important but don't let them take over like I did. I had stopped looking at my baby as just that a baby and he became a little bundle of numbers at the start and I had become that draw in by the pressure from the hospital at the start that I lost the first 4 months because I dreaded not getting the numbers right and him not meeting targets.
Less pressure equals more love and cuddle time.
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