Zaan coming home
The Thursday Zaan came home from the NICU was a big day. I collected him at about 11:00 in the morning, but with all the instructions for his care we only left after two. I had to receive training in all the medicine he needed, how his bottles were to be made. Zaan wasn’t allowed to drink for longer than 20 minutes. That ensured that he didn’t forget the sucking reflex, but also kept his energy for growing and putting on weight.
We had collected the oxygen machine and monitor the previous day, so I didn’t need to struggle with that as well. After leaving the ward, we still had to make a pit stop at the pharmacy to get his prescribed medicine. That entailed another training session in how to mix his medication.
Zaan was to see a paediatric cardiologist on a weekly basis and everything about him had to be monitored. We were working with a plan. Zaan had to have a heart operation before he was 6 months old. If he didn’t have the operation before he was 6 months old, the damage to his lungs from the oxygen would be too much and he would have a maximum life expectancy of 6 years.
For the first time I was faced with a scientific method of calculating how much milk my child had to be fed. His weight and goal intake per kilogram was used to calculate how much milk he had to drink per day. That was then split into 8 feeds. One every three hours.
The best weight for this operation was 5 kg and that was our goal. Because the twins were born in early August, it meant that he would turn 6 months in February. With the surgeon and other support staff’s annual leave right smack in the middle of that. Anything could happen during that time and the paediatric cardiologist decided that his operation had to take place mid November. He would be three and a half months old.
That first day after he came home, I was still marginally coping with getting up six times a night. By the second day, I was in survival mode. At least both of them were on roughly a three hourly feeding schedule unlike Rivan who was on a two hourly schedule in the beginning. Too bad their schedules just didn’t match up. Luckily by the third night Tristan started shifting his feeding times to coincide with Zaan’s.
When Rivan was small we had him in the camping cot in our room. After a few nights I moved him into our bed. It gave me much better rest during the night. Just the fact that I didn’t have to get up to pick him up and then get up again to put him back, made all the difference.
So when the twins were on their way, I had already decided to do the same. Zaan’s problems put a stop to that idea. I still had Tristan in our bed, but Zaan had to stay in the camping cot, so that we could jerry rig the oxygen tube in front of his face. There were also the wires of the monitor that had to be considered.
Feeding times at night started with my cellphone alarm going off. I’d get up, go to the kitchen, take out the premixed milk from the fridge, measure out the correct amount. Heat it slightly in the microwave. Grab all the sterilised paraphernalia needed for a tube feeding. I’d then head back to the room. Zaan would get his feed, most times he didn’t even wake up for the feed. Just slept right through. After that I’d get back into bed. The movement would have woken up Tristan and he would be ready for his turn. I’d fall asleep with Tristan fixed to the breast. This happened three times a night.
I remember noticing very well when Rivan went through a growth spurt. That dreaded day 3, week 3, week 10, etc. His two hourly feeds would become an almost constant breastfeeding fest. Neither Tristan nor Zaan ever showed those growth spurts. I’m sure they knew what their mom could cope with and what not.
Of course on Sunday night Zaan pulled out his feeding tube. It’s amazing how he could hook his thumb around that tube and pull. That meant I had to make another 40 minute trip back into town for his tube to be reinserted. The nurses had mentioned that they would teach me how to insert a tube, but those first few times I took him back to the NICU to have a new tube inserted. These tubes were replaced once a week.
Those first few days in the NICU, Zaan was hooked up to a lot of wires. Firstly there was the oxygen cannula, the feeding tube through his nose, protective eye cover with sunglasses printed on it, a heart shaped thermostat that regulated the overhead heaters, four wires kept track of his heartbeat, the drip in his arm and finally the probe for the oximeter. As he got stronger, some of those were removed, but the feeding tube, and oxygen probe stayed with him.
Due to the 1cm hole in his heart, which equates to a third of the wall between the left and right side of his heart, the oxygen rich and oxygen poor blood constantly mixed. This made him oxygen starved. By three weeks old, Zaan didn’t need the oxygen when he was awake, only when he slept. The nose cannula are very irritating and weren’t totally necessary. So when he slept we fixed the little oxygen pipe right in front of his nose.
Unlike most babies, Zaan didn’t often turn his head. He developed a flat spot on the right side of his head while he was lying in the NICU, so his natural inclination was to sleep with his head to the right. Believe me at that stage, a flat spot at the back of the head was the least of our worries. I’ve since learnt that it has a medical name and that there are various websites offering all kinds of ways to fix this problem.
Zaan & Tristan sleeping
