Thank you all for your prayers, your concern and your kind words. We appreciate it so much.
This has been your basic parenting nightmare. I've detailed everything below, and I'm warning you now that it is long. It was partially for my own records/sanity as I am still processing everything.
Ever since Eleanor was about three months, she has had some unusual hormonal issues. She grew pubic hair, her baby acne wouldn't go away, she had body odor, but nothing overly concerning, and everyone chalked it up to breastfeeding and her just settling into her own body. I took her to the doctor and he said the same and also flagged an odd distribution of fat on her cheeks, neck and shoulders. He referred me to a pediatrician to do some tests because he wanted a second opinion, and blood tests, xrays, ultrasounds etc are very traumatic on babies. The pediatrician took three weeks to get back to me and the appointment was booked for July 6th.
Over the past two weeks, she has become increasingly irritable, which I convinced myself was teething. I took her back to the doctor to confirm it was that and nothing else, and he said she was fine. I went to my weekly baby group on Wednesday last week, and I watched all the babies rolling around, sitting up, interacting with their mums and there was Eleanor, lying on my chest, whimpering. Eva, the woman who runs the group, came over and said "that child is not happy. You have to get her appointment bumped up". And I am SO grateful to her. I have been looking at photos of my daughter every night as I go to sleep, trying to justify her appearance (she's just a chubby baby...she's just a hairy baby). I have watched her delayed development (won't bear weight, hates sitting, won't roll over) and said she's just a lazy baby. I have attributed her fussiness, her bad sleeping to being a "high needs" baby. Well, it turns out she has a mass growing on her left adrenal gland that is pumping huge amounts of cortisol steroids into her body which is causing the odd appearance and (worst of all) enlarging her heart. The walls of her ventricles are 2, maybe 3 times as thick as they should be and restricting blood flow to her body.
We've been in hospital since Thursday evening and have seen endocrinologists, cardiologists, radiologists and our primary caregiver, the oncologist. Basically we have been treating her as having a stage 4 adrenal carcinoma. It's a super rare, super aggressive cancer with a very low survival rate. This is based off a CT scan that showed a large mass with a thrombus in her inferior vena cava and spots in her lungs, which means it is on the move. They originally booked surgery for tomorrow and put her on chemo to help shrink her heart, but she reacted poorly and went into cardiac arrest at 9am Sunday morning. With a few compressions they brought her back and the ICU doctor (and my favorite woman in the entire world) insisted Eleanor get the tumor out Monday morning. They moved everything around to make this happen and pulled us into a small room to tell us the risks. They warned us that some people would opt out of treatment at this point as it is so risky, and her treatment down the road is still uncertain. They warned us that she might come back with her heart hooked up to a bypass machine to take the load off. They told us it would be by the grace of God that she survived. So we had her baptized and reached out to friends and family to help get her through. She had another cardiac episode just after midnight when her nurse turned her, and the surgeon called in some extra surgeons to help out in the morning. Scary stuff.
The surgery turned out to be a huge success; the tumor came out in one piece and the part in the vena cava came out really easily, which is promising for prognosis (it might not have spread). She lost her adrenal gland and her left kidney, but they didn't have to put her on a bypass and she lost a minimal amount of blood (4 tbsp total). The biopsy results should be in tomorrow, but the most important thing for her now is to rest that big heart of hers. She has a long road to recovery, but she is like a different baby today. She's active and strong and seems to be getting better every second.
We're in such a weird place now where the scary stuff is over, but there are so many obstacles ahead.
Please keep your fingers crossed and your prayers coming for tomorrow; I will post on facebook the results of the biopsy. Oh God, I hope it's good news...
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