Thomas was born 6 weeks premature on 9th December 2013, a Monday at 10.18pm in Waikato Hospital via emergency cesarean. He weighed 2.010 kilo. He was born with blonde hair and lots of it oh my!
Because he was born prematurely, he was taken into the NICU immediately. He had healthy apgar scores. Apgar 1 minute – 7, 5 minutes – 9 and 10 minutes – 9. He required only 1 hour of CPAP (Continuous Positive Airway Pressure). After 10 days in NICU, Thomas began vomiting frequently and appeared lethargic with jitteriness and seizure activity. He was then transferred to level 3 to be monitored closely.
A cranial ultrasound showed a bliateral grade III IVH ( intraventricular hemorrhage) and thalamic infarcts.
The MRI showed venous haemorrhagic infarct affecting both thalami complicated by extensive IVH and hydrocephalus. Venous sinus thrombosis in the deep system (medullary vein) suggested (the basal ganglia).
Thomas required a cocktail of medications to control the seizures and required intubation and ventilation due to respiratory depression with sedative medications such as phenobarbitone, midazolam, cefotaxine, pyridoxine, and levetiracetam.
Seizures were controlled following the introduction of levetiracetam and did not recur during his NICU stay.
Subsequent cranial ultrasounds showed progressive bilateral ventriculomegaly and periventricular leukomalacia (PVL).
Thomas remained in NICU for 50 days and was discharged on the 28th January 2014, his original anticipated date of arrival being 21st January 2014.
Thomas’ Dubowitz exam produced an abnormal outcome with decreased tone on the left, jerky movements and poor head control. He was referred to VNT (Visiting Neurological Therapist).
Feeding wise, he remained on a continuous NG (Nasal Gastric) tube for about 2 weeks and then moving onto NG tube feeds gradually working up to 2 hourly feeds with frequent spilling post feeds. Gaviscon was given with every feed. Eventually he transitioned to demand breast feeding with persistently borderline weight gain. He weighed 2732 grams upon discharge and required no medications except for Vitadol C and Iron.
At this stage the cause of the haemorrhage or thrombosis is uncertain whether it may be congenital or acquired.
Thomas is now 7 months old actual. He has reflux, eczema, CVI, epilepsy, cerebral palsy, developmental delays, dystonia, was fed through an Nasal Gastric Tube for 8 months but now currently has a gastrostomy tube. He has had Infantile Spasms.
Minding Thomas 
So relate to your NICU journey. We had a boy born by emergency caesarian section due him being in ‘distress’ but he presented with normal agpars. Then things went down hill. After a long list of one thing after another not going well for him on day 10 the seizures begun. On day 15 an MRI confirmed brain damage. Such a horrible experience. I am so sorry you have had to go through something similar. Coming through something like this though, makes you realise how strong you are and it sounds like your family is thriving through the difficulties. Gorgeous boy! The smiles and giggles are soooo precious.
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Hi Caroline, thanks for visiting my blog. Such a similar experience. How is your boy doing now? You’re right about realising your own strengths. I sometimes wonder how I got and get through it but you just learn to get on with it. 🙂
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My boy is 6 now, is diagnosised with Spastic Quadreplegia Cerebral Palsy, has some visual issues and growth has been tricky for him…..but on the up side he is a delight with a huge sense of humour, a keen participator in anything he is able to participate in and attends a mainstream school where he is treasured by children and teachers alike. Life is really busy and complex and it can be exhausting…..but it is never boring and there are many silver linings.
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Hi Caroline, thank you for sharing about your boy. He sounds like an aspiring, resilient young man. Great to hear he is at mainstream school. Neat that he has a huge sense of humour, so important I reckon to be able to have a good belly laugh as a release!
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