Maximus "Max" and Tyson
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Max and Tyson were born in Brisbane Australia on January 10th 2002. They were 10 weeks preemie and weighed 2lb 15 and 2lb 13.
The boys are and were born by c-section at 30 weeks because of cord entanglement - those cords looked like
macrame!!!! The twins were admitted to the NICU and within 2 days graduated to the Special Care
Nursery. They were doing so well that Medical staff were even talking imminent discharge.
However, within about three weeks they both began to have breathing difficulties, and our roller coaster ride began. Initially diagnosed as having Chronic Lung Disease, the boys conditioned worsened and the diagnosis kept changing .... from CLD to Asthma to Respiratory Distress of Unknown Origins and on and on ....meanwhile respiratory support varied almost daily - we saw the boys through nasal O2
cannulas, CPAP, BIPAP and finally intubations with full vent support.
The boys were moved to the Royal Children's Hospital at about 5 months old - there they had a bronchoscopy and a battery of other tests the outcomes
were: severe Tracheo/Broncho Malacia, Gastric reflux and Hyper IGM Immune Disorder. We have been told that the boys may be deaf, blind or both and SOOO many times we have stood helplessly by watching the ICU team spring into action to resuscitate them.
The boys are now 16 months old, have trachs and gastrostomies in place, have had fundoplications done and are still in ICU ...the saga continues ...........
Y'know something though, when you look at these guys the anxiety we have been through all seems very very worthwhile. They are the most beautiful little people - even when Tyson decannulates himself, claps his hands and passes you the tube!!!!!!!
Maxine Hughes Very Proud Grandma (Nana)
