Home nursing
Having a baby at home with medical issues, were completely different from having a healthy baby at home. With Zaan’s care I had to learn how to mix his milk, his medication, how to monitor his stats and how to give him oxygen when he needed it.
Zaan was formula fed. He also got a scoop of extra “sugar” added to his milk. This wasn’t real sugar, but a food supplement similar to sugar, that would give him extra energy and help him pick up weight. When he was released from hospital they also gave me small vials filled with a type of oil. This had to be added to his formula as well, but after the first visit to the cardiologist she told me to stop it immediately. Oil was not good for his heart.
To make life easier I could mix his formula for a 24 hour period. Adding all the supplements and keep it in the fridge in a sterilised container. I would start out immediately after his last feed of the previous batch. I’d sterilise the container and other items in the microwave, boil the kettle with new water. I’d then fill the container that I used to mix his formula with a third boiling water. Then I’d add two thirds boiled water that I let cool previously. Next the formula and supplements were added to the lukewarm water. This then went into a sterilised bottle that I kept in the fridge. I’d refill the containers with boiled water to cool down for the next day.
The feeding itself was also different than normal. If Zaan was to get a bottle I’d pour the whole amount into a bottle. I’d then give him the bottle and let him drink until he was finished or his time was up. For the tube feeding I used large syringes. In the beginning I bought 20ml syringes, but later I changed to 50ml. The tube that was inserted through his nose into his stomach, had a little plug at the end. To start the tube feeding I’d open the plug, stick the syringe without the plunger into the opening. I’d pour some formula into the syringe and then use the plunger to get the milk flowing. It just needed to be pushed in one millimeter to start the milk flowing down the tube into his stomach. The plunger would be removed again. Zaan sometimes realised his stomach was getting fuller and would start sucking, I’d usually just put his dummy in his mouth. Adding milk from the bottle to the syringe until everything was in his stomach. The syringe was removed and the plug fitted back into the end of the tube. If I had to give him medication, I’d add the medicine to the syringe first before adding the milk. That way I knew the medicine got to his stomach and didn’t stay in the tube.
Next was mixing the medicine. I had received ampoules with sterilised water. I would take a new needle and syringe. Draw up 25 ml and squirt it into a sterile bottle, then add a pill and shake it until it dissolved. Off this mixture I would give Zaan 1.6ml in the morning and 1.6ml in the evening. The rest of the mixture was thrown down the drain. Luckily this recipe was changed to 5ml sterilised water and a quarter pill and Zaan getting 0.4ml twice a day. Cutting down on the wastage. Later on more medicine was added and each pill, including Viagra after his operation, had its own recipe.
Every now and then when I was breastfeeding Tristan, I would put Zaan on the other breast. The cardiologist didn’t want him breastfeeding, because it took more effort, but because he wasn’t doing the hard work of getting the let down reflex going, she was okay with him getting the benefit of his brother’s work. I’d also always put him on the right breast, it happened to be the one with the most milk. I never skipped his regular feeds and considered this a little bonus for him.
Let me explain the oxygen and meters. The machine that we took home, called a concentrator, that would supply Zaan with oxygen was measured from 0.2 to 2.0 something. I’d like to say that it was bar, but I’m sure it’s not. It was specially calibrated for babies, since the machines that supplied oxygen to adults started at 1. That was the case with the oxygen cylinder that we got for road trips and in case of emergency. When Zaan came home he was getting oxygen through the concentrator set at level 0.2. As time went on, the oxygen had to be set on a higher level and the instead of just needing oxygen when he slept, he started needing it during awake times as well. Towards the end he was on 2.0 and sometimes needed more.
I realised early on that there was no way I would be able to remember everything in my sleep deprived state. So I started a journal to keep track of the necessary information.
Diary
Thursday, 30 August 2007
17:00 – 50ml tube
20:00 – 50ml tube + 1.6ml Capoten
23:00 – 50ml tube
Friday, 31 August 2007 – 400ml
02:00 – 50ml tube
05:00 – 50ml tube
08:00 – 40ml bottle (20 min) + 10ml tube + 1.6ml Capoten
11:00 – 26ml bottle (20 min) + 23ml tube
14:00 – 50ml tube
17:00 – 50ml bottle (10 min)
20:00 – 50ml tube + 0.4ml Capoten (different strength)
23:00 – 50ml tube
Saturday, 1 September 2007 – 400ml
02:00 – 50ml tube
05:00 – 50ml tube
08:00 – 50ml bottle (15 min) + 0.4ml Capoten
11:00 – 50ml tube
12:30 – breast 5 min
14:00 – 50ml tube
16:00 – 50ml tube
19:00 – breast 5 min
20:00 – 50ml tube + 0.4ml Capoten
23:00 – 50ml tube
Sunday, 2 September 2007 – 400ml
02:00 – 50ml tube
05:00 – 50ml tube
07:00 – 40ml bottle (20 min) + 10ml tube + 0.4ml Capoten
10:00 – breast 10 min
11:00 – 50ml tube
14:00 – 50ml bottle (15 min)
17:00 – 50ml tube
20:00 – 50ml bottle + 0.4ml Capoten
23:00 – 50ml tube
By Sunday I was feeling wasted. I was waking up six times a night between Tristan and Zaan just for feeds. Plus the oximeter’s alarm would also go of during the night. The alarm was set as standard to go off if his oxygen level dropped below 85%. It would also go off if the probe came loose from his foot. That was another thing that had to be adjusted with each feed during the night. You can’t leave the probe on one foot for too long. It could cause bruising just like bedsores. So with each feed at night, I’d also loosen the probe and put it on the other foot. Then if the alarm went off, I’d get up to check why. Do the necessary adjustment and go back to sleep. Sometimes, he had just turned his head away, other times I needed to adjust the concentrator to a higher setting and sometimes the probe came loose.
Then early Monday morning he pulled out the feeding tube. This was the first time a tube had to be inserted since he came home. No one had shown me how to do it yet and for that matter I didn’t have a new tube to insert. So, Monday morning I had to drive back to the hospital for a new tube to be inserted.
Monday, 3 September 2007 – 400ml
02:00 – 50ml tube
05:00 – 50ml bottle
08:00 – 50ml bottle (40 min) + 0.4ml Capoten
10:30 – new tube inserted
11:30 – 50ml tube
14:00 – 50ml tube
17:00 – 35ml bottle (20 min) + 15ml tube
20:00 – 50ml tube + 0.4ml Capoten
23:00 – 50ml tube *
*100ml Expressed Breast Milk + 200ml Nan + extras
Tuesday, 4 September 2007 – 400ml
02:00 – 50ml tube *
05:00 – 50ml tube *
08:00 – 20ml bottle (10 min) + 30ml tube * + 0.4ml Capoten
11:00 – 50ml tube *
14:00 – 40ml bottle + 10ml tube *
17:00 – 20ml bottle (20 min) + 30ml tube
19:00 – breast 5 min
20:00 – 50ml tube + 0.4ml Capoten
23:00 – 50ml tube
Wednesday, 5 September 2007 – 410ml
02:00 – 50ml tube
05:00 – 50ml tube
08:00 – 30ml bottle + 20ml tube + 0.4ml Capoten
11:00 – 50ml tube
14:00 – 50ml tube
14:30 – Dr Colyn Unitas K401: Zaan 2.5kg, Tristan 2.8kg
17:00 – 40ml bottle (20 min) + 10ml tube
20:00 – 55ml tube + 0.5ml Capoten
23:00 – 55ml tube
Thursday, 6 September 2007 – 440ml
02:00 – 55ml tube
05:00 – 55ml tube
08:00 – 55ml bottle (15 min) + 0.5ml Capoten
12:00 – 55ml tube
15:00 – 55ml tube
18:00 – 51ml bottle (20 min) + 4ml tube
21:00 – 55ml tube + 0.5ml Capoten
00:00 – 55ml tube
Friday, 7 September 2007 – 440ml
03:00 – 55ml tube
06:00 – 55ml tube
09:00 – 28ml bottle (20 min) + 27ml tube + 0.5ml Capoten (new bottle)
12:00 – 30ml bottle + 25ml tube
14:00 – Breast 15 min
15:00 – 55ml tube
18:00 – 30ml bottle (20 min) + 25ml tube
21:00 – 55ml tube + 0.5ml Capoten
00:00 – 55ml tube
Saturday, 8 September 2007 – 445ml
03:00 – 55ml tube
06:00 – 55ml tube
09:00 – 25ml bottle (20 min) + 30ml tube + 0.5ml Capoten
12:00 – 60ml tube
13:30 – 20ml bottle
16:00 – 60ml tube
17:30 – 20ml bottle (20 min)
19:00 – 60ml tube
22:00 – 60ml tube + 0.5ml Capoten
Sunday, 9 September 2007 – 500ml
01:00 – 60ml tube
04:00 – 60ml tube
07:00 – 30ml bottle (20 min) + 30ml tube + 0.5ml Capoten
10:00 – 60ml bottle (15 min) – small NUK teat
12:30 – 20ml bottle + 50ml tube
16:00 – 45ml bottle + 25ml tube
19:00 – 55ml tube + 0.5ml Capoten
22:00 – 65ml tube
Wednesday saw our first trip to the paediatric cardiologist. But before we got there, hubby asked me to find out how much the consultation would cost. After various misunderstandings we cancelled the appointment, because we just couldn’t afford a R900 consultation fee. Money was extremely tight and things were only going from bad to worse. Luckily the misunderstandings were cleared up and we saw Dr Colyn once a week before Zaan’s operation.
Zaan was also struggling to drink his bottles and that started a bottle/teat search for a combination that worked for him. We eventually settled on the small NUK teat. The air system helped by not letting too big a vacuum build up in the bottle against which he had to suck. Not that he ever got very accomplished with the bottle. If it looked like he was too tired to drink, I’d just skip the bottle and give him a tube feeding. Also during the night I never bothered trying to bottle feed.
Monday, 10 September 2007 – 530ml
01:00 – 65ml tube
04:00 – 65ml tube
07:00 – 65ml tube + 0.5ml Capoten
10:00 – 65ml bottle (20 min)
11:30 – Breast 15 min
13:00 – 65ml tube – new tube
16:00 – 65ml tube
19:00 – 20ml bottle + 50ml tube + 0.5ml Capoten
22:00 – 70ml tube
Tuesday, 11 September 2007 – 555ml
01:00 – 65ml tube
04:00 – 65ml tube
06:00 – 65ml bottle + 0.5ml Capoten
09:00 – 20ml bottle
10:00 – 70ml bottle (20 min)
13:00 – 60ml bottle
16:00 – 66ml bottle + 4ml tube
19:00 – 70ml tube + 0.5ml Capoten
22:00 – 70ml tube
Wednesday, 12 September 2007 – 560ml
01:00 – 70ml tube
04:00 – 70ml tube
07:00 – 70ml tube + 0.5ml Capoten
09:30 – Breast 5 min
10:30 – 70ml bottle (20 min)
13:00 – 70ml tube
16:00 – 10ml bottle + 60ml tube
19:00 – 70ml tube + 0.5ml Capoten
22:00 – 70ml tube
Thursday, 13 September 2007 – 505ml
01:00 – 70ml tube
04:00 – 70ml tube
07:00 – 20ml bottle + 50ml tube + 0.5ml Capoten
10:30 – Breast 5 min
10:30 – Dr Colyn – new tube
13:00 – 70ml tube
16:00 – 50ml bottle
17:00 – 25ml tube
19:00 – 70ml tube + 0.5ml Capoten (Capoten finished – last dose Friday morning)
22:00 – 80ml tube
Friday, 14 September 2007 – 520ml (Drixine nasalspray)
03:00 – 80ml tube
06:00 – 80ml tube + 0.5ml Capoten
09:00 – 16ml bottle + 54ml tube
12:00 – 70ml tube
15:00 – 15ml bottle + 55ml tube
17:30 – 20ml bottle + 50ml tube + 0.5ml Capoten
21:00 – 80ml tube
Saturday, 15 September 2007 – 545ml (Drixine nasalspray)
02:00 – 80ml tube
05:00 – 80ml tube
08:00 – 35ml bottle + 35ml tube + 0.5ml Capoten
11:00 – 22ml bottle + 48ml tube
14:00 – 70ml tube
17:00 – 50ml bottle
18:00 – 40ml tube
21:30 – 85ml tube + 0.5ml Capoten
Sunday, 16 September 2007 – 450ml (Drixine nasalspray)
02:30 – 80ml tube
06:00 – 80ml tube
09:30 – 25ml bottle + 45ml tube + 0.5ml Capoten
13:00 – 70ml bottle
17:00 – 50ml bottle + 20ml tube
21:30 – 80ml tube + 0.5ml Capoten
During our second visit to Dr Colyn, she asked me how I was doing. She was more concerned with how I was coping than she was worried about Zaan. I was on a ball. The mastermind of coping. Looking over my diary, I realise now that I was running on adrenaline. Nothing else. One would assume that I would crash after carrying on like that. But I never did. A crisis has always brought out the best in me. And that was what I was doing. I was getting on with what had to be done and nothing could stop me. Helps that there was something I had to do. I didn’t have time to sit still and over think what I was going through.
Of course Zaan was starting to get a bit of a snotty nose. Due to the tube as well as the end of winter beginning of spring allergies. Nasal sprays were advised and we carried on.
Monday, 17 September 2007 – 520ml (Drixine nasalspray)
02:00 – 80ml tube
06:00 – 80ml tube
09:30 – 35ml bottle + 35ml tube + 0.5ml Capoten
12:30 – 10ml bottle + 60ml tube
16:00 – 70ml bottle (10 min)
19:00 – 70ml tube + 0.5ml Capoten
20:00 – 80ml tube
Tuesday, 18 September 2007 – 520ml (Drixine nasalspray)
03:00 – 80ml tube
06:00 – 80ml tube + 0.5ml Capoten
09:00 – 70ml bottle
12:00 – 35ml bottle + 35ml tube
15:00 – 15ml bottle + 45ml tube
18:00 – 70ml tube + 0.5ml Capoten
19:00 – New tube (No 
21:30 – 80ml tube
Wednesday, 19 September 2007 – 480ml (Drixine nasalspray – morning only)
01:00 – 80ml tube
05:00 – 80ml tube
08:00 – 35ml bottle + 35ml tube + 0.5ml Capoten
10:30 – Dr Colyn – Tristan 3.45kg (with clothes) & Zaan 2.8kg (without clothes)
11:00 – 100ml tube
15:00 – 70ml bottle
18:00 – 80ml tube + 0.6ml Capoten
21:00 – 90ml tube
Thursday, 20 September 2007 – 510ml
02:00 – 90ml tube
07:00 – 90ml tube + 0.6ml Capoten
11:00 – 80ml tube
12:15 – Dr Booysens – Tristan 3.32kg & Zaan 2.9kg
15:00 – 20ml bottle + 60ml tube
18:00 – 80ml tube + 0.6ml Capoten
22:00 – 90ml tube
Friday, 21 September 2007 – 420ml
06:00 – 90ml tube
09:00 – 45ml bottle + 35ml tube + 0.6ml Capoten
12:30 – 80ml bottle
17:00 – 80ml tube
20:30 – 90ml tube + 0.6ml Capoten
Saturday, 22 September 2007 – 420ml
04:30 – 90ml tube
08:00 – 30ml bottle + 50ml tube + 0.6ml Capoten
12:00 – 20ml bottle + 60ml tube
17:00 – 45ml bottle + 35ml tube
19:30 – 90ml tube + 0.6ml Capoten
Sunday, 23 September 2007 – 630ml
01:00 – 90ml tube
06:00 – 100ml tube + 0.6ml Capoten
10:00 – 30ml bottle + 50ml tube
13:30 – 45ml bottle + 35ml tube
16:00 – 20ml bottle + 60ml tube
18:30 – 100ml tube + 0.6ml Capoten
00:00 – 100ml tube
After Dr Colyn replaced his tube the previous week, I decided that I would be able to do it too. I’d been watching every time and had all the nurses, and the doctor, explain to me how it was done. Watching her do it broke the barrier for me. From then on I started replacing his tubes. I also changed his tube to a no. 8 instead of the no. 6 that he’d been using up to then. The amount of milk he was getting was just too much for the smaller tube. It took hours for all the milk to flow through the tube.
Before you insert the feeding tube you measure it against his body. Starting at his stomach, about 1cm below the end of the sternum, you take it up to his nose, then you measure passed his ear. Put a bit of KY gel on the end of the tube, tilt his head forward and stick the end of the tube up his nose. Feed it slowly into his nose until you reach the measured point. Next you attach a syringe and pull up a bit of stomach fluid. This you put on special test paper to make sure you’ve got the tube in the stomach and not his lungs. When you’re sure you’re not going to kill your baby the next time you give a feed, you stick the feeding tube to his face on top of the sticky plaster that protects his skin.
Once a week I would go all out and clean his face of all the plasters. Once he was on full time oxygen, I used to put two rubber plasters on both sides of his nose. When the feeding tube was inserted I’d stick the feeding tube and the nasal cannula to his face.
Doing the bath thing was a military process. The first thing I’d do was get the bath ready. I’d layout the two towels, put all the cleaning things ready. Only then I’d get the twins. Each of them on their own towel. I’d clean Tristan’s face first with wet cotton wool. If Zaan was only getting a wash and not a new tube, I’d clean his face with wet cotton wool as well. Then I’d undress them both quickly, Tristan first. First Zaan and then Tristan would be rubbed full of soap. Then quickly picked up and rinsed in the bath. Back in the room, I’d cuddle them in bath sheets. Luckily the oxygen pipes were very long, so I could carry him to the en-suite bathroom without having to detach him from the concentrator. A bath could take anything from half an hour to one hour if I had to replace his tubes as well.
Monday, 24 September 2007 – 460ml
07:00 – 100ml tube + 0.6ml Capoten
11:00 – 60ml bottle + 40ml tube
14:30 – 80ml tube
17:00 – 20ml bottle + 60ml tube
22:00 – 100ml tube + 0.6ml Capoten
22:00 – New tube
Tuesday, 25 September 2007 – 540ml
07:00 – 100ml tube + 0.6ml Capoten
10:00 – 10ml bottle + 100ml tube
13:30 – 110ml tube
16:30 – 110ml tube
21:00 – 110ml tube + 0.6ml Capoten
Wednesday, 26 September 2007 – 540ml
04:30 – 110ml tube
08:30 – 110ml tube + 0.6ml Capoten
13:00 – 40ml bottle + 70ml tube
17:00 – 35ml bottle + 75ml tube
22:30 – 100ml tube + 0.6ml Capoten
Thursday, 27 September 2007 – 600ml
02:30 – 100ml tube
06:00 – 100ml tube + 0.6ml Capoten
10:00 – 30ml bottle + 25ml tube
11:00 – 45ml tube
13:00 – 30ml bottle + 20ml tube
13:30 – 50ml tube
16:00 – 50ml bottle
16:30 – 50ml tube
20:30 – 100ml tube + 0.6ml Capoten
Friday, 28 September 2007 – 500ml
06:00 – 100ml tube + 0.6ml Capoten
10:00 – 15ml bottle + 85ml tube
13:00 – Dr Colyn – Zaan 3.05kg, Tristan 3.65kg
14:30 – 100ml tube
19:00 – 100ml tube + 0.6ml Capoten
00:00 – 100ml tube
Saturday, 29 September 2007 – 530ml
04:30 – 100ml tube
09:00 – 15ml bottle + 85ml tube + 0.7ml Capoten
12:00 – 40ml bottle
12:30 – New tube
13:00 – 60ml tube
18:00 – 35ml bottle + 65ml tube
19:00 – 30ml tube + 0.7ml Capoten
22:30 – 100ml tube
Sunday, 30 September 2007 – 500ml
06:00 – 100ml tube + 0.8ml Capoten
10:00 – 40ml bottle + 60ml tube
14:00 – 40ml bottle + 60ml tube
18:30 – 100ml tube + 0.8ml Capoten
22:00 – 100ml tube
Monday, 1 October 2007 – 450ml
05:30 – 100ml tube + 0.9ml Capoten
08:00 – 25ml bottle
08:30 – 25ml bottle
09:00 – 25ml bottle
10:30 – 35ml bottle + 40ml tube
14:00 – 100ml tube
18:00 – Breast 20min
20:30 – 100ml tube + 0.9ml Capoten
Tuesday, 2 October 2007 – 550ml
04:00 – 100ml tube
06:00 – 10ml bottle + 10ml tube + 1ml Capoten
08:00 – 80ml tube
12:00 – 100ml tube
16:00 – 50ml bottle + 50ml tube
17:00 – 40ml bottle
18:00 – 10ml tube + 1ml Capoten
21:00 – 100ml tube
Wednesday, 3 October 2007 – 500ml
05:30 – 100ml tube + 1ml Capoten
09:00 – 10ml bottle + 90ml tube
11:00 – Storks Nest – Tristan 3.8kg, Zaan 3.3kg. Consultation R100, 6in1 R314 x 2, Rotarix R250 = R978
13:30 – 100ml tube
17:30 – 100ml tube + 1ml Capoten
21:30 – 100ml tube
22:30 – 23:00 – BBP over 170 max 192, fever 38.85
Thursday, 4 October 2007 – 500ml
06:00 – 100ml tube + 1ml Capoten
10:00 – 25ml bottle + 75ml tube
14:00 – 50ml bottle + 50ml tube
15:00 – 16:00 – BBP over 170 max 176
18:00 – 30ml bottle
19:00 – 70ml tube + 1ml Capoten
23:00 – 100ml tube
Friday, 5 October 2007 – 520ml
06:00 – 100ml tube + 1ml Capoten
10:30 – 100ml tube
11:00 – Dr Colyn, Zaan 3.25kg
14:30 – 100ml tube
17:00 – 25ml bottle (reflux – 2.5ml)
18:00 – 85ml tube + 1ml Capoten (reflux – 5ml)
23:00 – 110ml tube
Saturday, 6 October 2007 – 575ml
06:00 – 110ml tube + 1ml Capoten
10:00 – 110ml tube
12:00 – 50ml bottle
14:00 – 60ml tube
16:00 – 55ml tube
17:00 – 55ml tube
19:00 – 25ml tube + 1ml Capoten
22:00 – 110ml tube
Sunday, 7 October 2007 – 550ml
06:00 – 110ml tube + 1ml Capoten
09:30 – 70ml tube (reflux)
11:30 – 60ml tube
13:00 – 75ml tube
16:00 – 35ml bottle + 75ml tube
19:30 – 25ml tube + 1ml Capoten
21:00 – 110ml tube
It was obvious that Zaan was not coping very well anymore. He started struggling with reflux. Where before he’d hardly have to be burped, now I had to keep a burping cloth close at hand. He wasn’t drinking very well anymore and he was constantly on oxygen now. Some nights the highest setting on the concentrator couldn’t keep Zaan’s oxygen level above 85%. So I would change the minimum alarm to 80%. Just to get a bit more sleep.
On Wednesday night the first time the alarm went off, I thought that his oxygen level had fallen below 80%, so I just snoozed the alarm as I was used to doing, and went back to sleep. But shortly after that the alarm went off again. This time I opened my eyes and saw that his heart rate was up past the alarm settings and that was why the alarm was going off. For a moment I was panicked. I didn’t know what to do. I check Zaan and he had a fever. Finally I took out the doctor’s card and phoned her on her cellphone. The first time ever that I’d done that. I explained to the doctor that Zaan had gone for his 8 week injection and that his BBP was over 170 and about his fever. She got me to calm down.
Some Panado syrup for the fever and more oxygen for the BBP. She told me not to panic, but to phone her if the BBP went over 200. For the next hour I sat there, eyes glued to the oximeter. I’d changed the alarm settings, but had to know what the maximum BBP was before I could go back to sleep. His BBP levelled out and settled back at the 120 – 145. And I could go back to sleep.
Chapter 8
