Bringing Arjun home was so frightening. We were allowed to take hime home on a ‘phased’ return. This is when you bring your baby home for SCBU intermittently so that you and baby can acclimatise to being home especially of your baby is on oxygen, tube fed or has had come other medical concerns.
When we brought Arjun home on this ‘phased’ return he had still got the NG tube in his nose. It was so scary. We were taught how to feed him via a syringe, held at a certain height above Arjun so that gravity would move the milk directly into his stomach. You had to be really careful, hold the syringe too low and the feed would not work; too high and you void drown his stomach which would result in him vomiting (he suffered from reflex anyway). Arjun’s feeds had to be thickened with a special thickening agent called ‘Tick and Easy’. It was like wall paper paste by the time you had added it to his feed.
Despite him bottle feeding, he still required his tube, simply because he was still not strong enough to take a full feed so the NG tube topped him up.
The first night we had him at home was horrendous, not only did he rip the tube out of his nose but he vomited everywhere after each feed. All he did was sleep whilst I cleaned everything up. He would only sleep on Dav shoulder or chest. This was simply because his reflux was so severe that nothing would remain in him if he was not semi-upright.
This reflux continued for many years, and now it is even worse. Can you image a 14 year old teenager vomiting after most feeds, even when he is asleep? Now, we have hospital bed at home that has special upright function that we use so he is not laying flat. It is a godsend that it has a wipeable mattress.
Bringing him home, forever, was not a joyous occasion. We were told in no uncertain terms that we would return frequently and that one day he would die. As a result we were given ‘open access’ to the children’s ward at the hospital. This meant that at any point of concern we could just ring the ward and take him straight up, no need for doctors appointments, community nurses or ambulances, we could take him anytime.
We still have this even after 14 years.
I was not prepared for the number of specialists that descended on my house. In the early days I was inundated with speech therapists, dieticians, physiotherapists, music therapists and opticians to mention a few. My weekly diary was filled with appointments at home and at the hospital, this just added to my anxiety and depression. It still felt like Arjun was not mine, but a specimen for the medics to tinker with.
It was tough, learning how to look after a newborn is
difficult enough without all the additional needs I had to learn about and understand about my newborn.