We have a bit of news so thought a good time to send an update.
If she remains stable, Rose will be given an MRI on Monday and all going well she will have her teratoma removed on Tuesday. Daunting prospect but doctors have decided as she’s stable and putting on weight well that it’s best to take advantage of good conditions and do now. The sooner the operation the less likely she will need a tracheostomy (The surgical formation of an opening into the trachea through the neck to allow the passage of air.) I am very keen to avoid as I’m (probably overly) fixated on breastfeeding which will be the least of our worries but can’t help wanting it. Googling however I’ve not found a case of a cervical tumour removal that did not result in a tracheostomy so it would be a huge win…
The surgeon, a man named Guy Henry, has explained that there are many risks involved in removing a cervical teratoma including unintentional removal of the thyroid (which it turns out may still be present), parathyroid and nerve that controls larynx. Of course this is all assuming Rose’s teratoma is typical and encapsulated rather than part of Rose’s neck. If it is more complicated I think they will probably postpone the surgery so they can plan for the more complicated and risky procedure.
It’s difficult to see from the pictures but Rose has grown ~300g since birth and she’s looking so much better, when I talk to her now she tries to open her eyes and she is making sucking movements with her mouth. When she hears the noise of the suction tube start up she flinches and silently cries (she is silent due to the tube down her throat) which Lou says is a good sign and now that I’ve thought about it I agree :-). We are able to containment hold her (firmly cradle her head) which is lovely but we would so so like to hold her and it’s been discussed that that may be possible before her surgery which would be so wonderful. So I think all this means that I’m beginning to bond and believe that she’s ours but also that I’ve joined the NICU world and am learning to be positive about the small things rather than being fixated on the big things which are just far too overwhelming!
So keep your fingers crossed she’ll remain stable over the next couple of days and think of us on Tuesday, if it’s not happening I’ll send another email so as not to waste all those positive thoughts 😉
Thanks again for all your care packs, gifts for Rose, advice, words of support, school drop offs and pick-ups and play dates. I don’t think I will ever be able to thank all you friends and family enough for your support. I doubt I’d be functioning without it. Apologies I’m not answering everyone all the time… I will definitely get thru my emails and texts soon.
P.S. Photos are a Rose from Mum’s garden, pictures James has drawn for Rose that the nurses have stuck to her crib and.. Rose today looking much improved and with far less medical support!!