I wish i could have foreseen the future.
When phoenix was born he had severe low blood sugar levels. Blamed so kindly by the nurse on me devouring packets of sherbet each day trying to deal with 'Pica'.
We were told he would spend about 24 hours connected to a drip of glucose, giving him the sugar he needed that he was no longer getting from me. 24 hours turned in to 48 hours. And finally we were allowed back to our room.
For the first time i was able to close my door, and snuggle skin to skin with my new born. It was then i noticed he was slightly jaundice. When i pressed his skin it would turn from orange to white. I mentioned this to the nurse in charge but she had no concerns. Our night together was lovely. We slept in the same bed and i fed on demand. At about 3am i was so excited to be going home i packed my room up while he slept.
Finally it was 7am, i was preparing him to get dressed in him going home out fit when i noticed he was 'glowing' . His eyes were yellow, his skin was blotchy and he wouldn't wake up.
Hospital policy is you can only 'wheel' your child around the ward in there bed. I picked him up, wrapped him in a blanket and hurried down to the nurses station. where again, he was whisked back to SCN.
By 9am his bilirubin levels were back and we weren't going home. Phoenix was put back on the drip , tube fed extra fluids and in to a humidi crib undergoing Photo-therapy.
He had the normal dose of rays from the crib and another set of 3 bulbs on top of that. We were to spend about 8 days in that room.
Paediatricians then found a heart murmur which at 9 weeks old, it still there. His jaundice has never gone. Neonatal jaundice is common, around 75% of babies will get it. A bilirubin level of more then about 85 will need photo therapy, Phoenix was 348. This is also known as Un-conjugated jaundice or clinical jaundice.
Phoenix now suffers from Conjugated jaundace. Meaning there is an underlying issue. Not just caused by being a new born.
So far we have run both urine and blood tests for Rubella, UTI,Toxoplasmosis and CMV (similar to glandular fever) , Hepatitis B which infects the liver. It lives in liver cells and also in cells of the immune system. When the hepatitis B virus infects the liver, immune cells are attracted to the liver to help fight the infection. These immune cells cause a lot of the damage that is caused by hepatitis B.
We've had Ultrasounds for Obstruction of the bile ducts inside and/or outside of the liver, and now a 'sweat test' for cystic fibrosis.
An electrode is placed over gauze containing pilocarpine and electrolyte solution that will not interfere with the sodium and chloride measurement. A second electrode (without pilocarpine) will be placed at another site and a mild electrical current will draw the pilocarpine into the skin where it stimulates the sweat glands on his inner forearm.
The arm is carefully cleaned and dried, then a piece of pre weighed filter paper is placed over the inner arm and covered with cling wrap to prevent evaporation. Sweat is collected for around an hour. While phoenix is being kept warm with heat packs and warm blankets, being carefully watch so he didnt over heat and fit.
The filter paper is retrieved and weighed to determine the weight of sweat collected. Its then sent to Melbourne, while we wait for the results. If not enough sweat was collect, we need to resit the test.
Next week he will be under going an xray on his vertebrea to test for Alagille's syndrome is a condition in which the liver contains too few of the tiny bile ducts which are inside the liver. This leads to blockage of bile flow, which causes jaundice.
And then were off to Mater children's hospital to meet with the gastro enterologist, where he will preform a liver biopsy. Its possible the large bile ducts are blocked, the biopsy shows increased numbers of the tiny bile ducts present in the liver.
From there.. I don't know where we go.
So we just hold hope.. That we get some answers. That hes not in pain and theres ways to fix this.
9 weeks young it to little to have to go through so much testing.
We love you phoenix.