Support for baby Riley and his parents

Riley Hunter Chapman was born at 34 weeks, 6 days gestation, via C Section at Dunedin Hospital, following a challenging pregnancy with major concerns about his growth and blood flow in utero. When Riley was born he weighed 3Ibs 5oz (1495grams), he required assistance with his breathing, including being on a ventilator for 3 days after being trialled on cpap and high flow to begin with. During this time Riley received blood transfusions and intravenous nutrition (TPN).

On further investigations they found Riley had congenital defects of his heart (VSD & PSD) and chronic lung disease.

Riley was also found to have a cleft palate- which meant he was unable to breast or bottle feed due to inability to coordinate sucking/swallowing without choking and required a tube to be inserted into his nose to his stomach so he could receive his milk this way. Riley still requires to be fed this way but due to issues with refluxing his milk, he now has another similar tube which bypasses his stomach and feeds him into his small intestine (nasojejunal tube).

After a prolonged stay in the neonatal unit (approx 2months) Riley was finally able to go home with his parents for the first time, on oxygen, a heart rate and oxygen monitor and tube feeds. However this was an extremely stressful two weeks at home for Kelly and Scott because Riley was not coping on the lower flow of oxygen and dropping his oxygen saturation levels to unsafe numbers, he developed swelling in his feet from fluid retention and began dropping his heart rate at times too. After a few challenging phone calls to the hospital Kelly decided it was best to take Riley back in to get assessed. A blood gas detected that Rileys Co2 levels were extremley high and he then required to be placed back on Cpap (continuous positive airway pressure), Riley also required another blood transfusion and diruretic medication to help him pass the extra fluid he was retaining. Riley ended up spending at least another month in hospital.

Riley is finally back home again on low flow home oxygen, still on his NJ feeds and continuous monitoring. Riley often requires nasal suctions during the day/night which his parents have a machine at home for.

Rileys dad (Scott) works full time and Kelly is expected to return to work within approximately 4weeks time..At this stage Rileys parents are still struggling to find a plan to have Riley cared for at home while they have to work, (giving up work at this point is not an option due to financial commitments), Kelly has been jnformed that Riley is only entitled to 14 days/year of funded carer support and Kelly and Scott are required to find the carers themselves, unfortunately they have minimal available options of people they can ask as their own family/friends also work full time.

Riley would be at risk if he was placed in a day care with other children who carry bugs as his immune system is very weak, plus he requires a carer who would be able to use his oxygen machine, feeding pump and recognise signs of him deteriorating.

To top off the stress on this family, Kelly and Scott have now just been given notice to move out of their rental by January.

If you know Kelly and Scott and have been wondering how you can support/help them then perhaps this give a little page may help raise some funds that will help them with bond for a new rental, or money to go towards finding/paying carers to help them out with Riley when they are at work, or towards any others needs they may have in regards to caring for Riley.

Thank you for any support in advance.