This is our little boy born in October at 38 weeks. He was sent to the neonatal unit within hours of birth. He was floppy and had no reflexes and trouble feeding. He was placed on antibiotics incase an infection was causing his hypotonia, blood cultures were taken to see if it was an infection. His blood sugar was low but he was unable to suck so a nasal gastric tube was placed to feed him every hour. It wasn't an infection, which meant more tests. Genetic tests were sent off for diseases like Prader Willi, spinal muscular atrophy, downs, blood tests were done for other diseases, ct scans were done to check his brain, some of these would take weeks to come back and we wouldn't know if our little man would make it. It was hard leaving him every night to come home to sleep, not knowing if he would still be here when we woke in the morning.
Each day he improved a little, his Feeds changed to 2 hrs , then a few days layer to 3 hrs. He gradually came out of the incubator and into a cot with monitors. Later he was moved into the nursery in the neonatal unit. The nurses were amazing, Showing us how to care for him at various stages. Confinement touch while he was in the incubator , how to change his bottom in an incubator, how to tube feed him. They answered our questions of worry. He had ABO incompatibility too, so his jaundice level was being monitored and folic acid was being given to help him make new red blood cells. His jaundice never got so bad that he needed phototherapy.
Callan came home after 12 days in special care, part bottle fed and tube fed. He has recession in his chest, a sign of respiratory distress, from his weak muscles. And trouble sucking also. We were shown resus before we could bring him home and spent the night with him at hospital with him to make sure we were confident in tube feeding. After a week at home we ended up back at hospital with chest infection from aspirating milk into his Lungs from reflux or being bottle fed and having a not very good sucking technique. Another tough week was had in hospital. Another dose of antibiotics, another week on monitors, new medicine started. He had MRI scan while we were in this time. He know had to take all his feed by the nasal gastric tube and have a dummy dipped in milk to keep him orally stimulated. We had to wait for him to have a video fluoroscopy to make sure he had a safe swallow and to look at his technique. We had the video fluoroscopy when he was about four weeks old. It was discovered that he had timing delay with the epiglottis that cover his airway and that he tired easily so his technique worsened. However he didn't aspirated any milk. The recommendation was to give 10 mls by bottle and the rest via his tube. However we would do this and he would scream while we put rest down tube because he wanted to have a bottle after a few weeks of not having one. I decided to try him on more and he coped fine, I paced him, taking the bottle out every three to five sucks so he could get his breath back. He managed well, finishing a bottle in 25 minutes. Whereas it was taking him over an hour before when he was in special care and he wasn't even finishing it. I guess sometimes you have to trust your motherly instincts because now at 11 weeks he is finishing his bottles of 200 mls no longer paced, sleeping through the night and had his tube taken out at 6 weeks.
We have had all the test results back and they are all negative, which is a relief. He has had an EMG at a specialist hospital which found his muscles to be normal. We don't know what is causing his hypotonia and may never find out. He will need extra help to meet his gross motor skills milestones. At 11 weeks he is nearly holding his head up. He is such a lovely little boy, always happy and smiling. It's been a tough few months of not knowing why, but know that we know nothing sinister is wrong we are in much better place than before.
