The Hand We've Been Dealt

I have been back at work for three days now. Rachel is 3 months and 1 week old. Consuelo is managing fine at home, so everyone's relieved.

On the last day of maternity leave (24 Aug), Rachel had her second NF1 doctor's visit at NUH. The ultrasound scan showed no spine or kidney abnormalities. Her weight gain and overall development also look all right after all. But the recently discovered lump on her left hip may need surgery under GA to be removed - BCG adenitis, a swelling of the lymph nodes as a result of immunization. She'll have to be seen again next Monday. We also picked up the copy of her MRI scan images.

Last Friday (21 Aug), her eye pressure was an acceptable 16, so her eye doctor at SNEC is pleased with the way the implant is working. But she advised us to obtain a copy of the MRI scan images from NUH.

Five weeks ago (17 July), Rachel had her third eye operation under GA to put in the Ahmed glaucoma implant . Everything went smoothly and she came out of the anaesthesia well so she could go home that evening. That was a Friday, after spending Thursday night at home on home-leave from the hospital.

On the Wednesday (15 July) before the surgery, she had her MRI scan under sedation. Although we didn't intend to stay overnight after the scan, she didn't come out of sedation well - got agitated and had to be given the antidote and then monitored for some time after that, so we spent Wednesday night in hospital. Since we were coming back on Friday for the operation the hospital didn't discharge her but they let her go on home-leave for Thursday night. The MRI scan showed a tumour (benign growth) in her head and around the right eye.

On the Monday (13 July) before the MRI scan, Rachel had her first NF1 doctor's visit at NUH. The doctor examined her over all and we spoke at some length about the likely NF1 or neurofibromatosis type 1 diagnosis. Doctor also ordered the MRI scan since the area around her right eye was (and still is) slightly swollen and the scan results would be able to better confirm the diagnosis.

Two weeks before her first NUH visit, we took Rachel to the Singapore National Eye Centre (SNEC) for a second opinion (30 June) where her second eye doctor advised putting in the Ahmed implant to which we agreed. Her first eye doctor was also in favour of this since her second eye operation under GA, a repeat trabeculectomy (12 June), once again proved unsuccessful. Her first eye doctor suspected that her swollen eye area could be a plexiform neurofibroma, considering her multiple café au lait spots.

Rachel had her first eye operation under GA on 25 May when she was exactly one week old. However, the trabeculectomy and trabeculotomy were not successful as her eye pressure crept up again although it was fine shortly after the operation.

When Rachel was handed to me upon delivery, I immediately noticed that her right eye was significantly larger than her left eye. The paediatrician called in an eye specialist who examined her and diagnosed congenital glaucoma. It all started from here and hasn't stopped since. Thankfully the intensity of visits (like see eye doctor 2-3 times a week for the first month of her life) has dropped and we're now generally at the home monitoring phase which will go on for the rest of her life. We just stand ready to deal with anything that crops up, if at all. Hopefully not.
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1 Sep 2009 ETA: Doc found that the BCG lump thing has diminished slightly so she's happy to wait for it to go off on its own. So are we! Just have to check that it doesn't get bigger or boggy. Phew.