Today, I got a letter from the hospital telling me that my glucose tolerance test results were normal so I don’t have pregnancy diabetes. I was so relieved, Jasmine and I went out for lunch to celebrate.
We toddled off down to Cafe Nero and were sitting there minding our own businesses: Jasmine was singing, I was munching on a panini, when a woman came over and said:
“Oh what a beautiful baby!”
And then, “Oh my God what is wrong with her?”
I said, “That is a feeding tube.”
And she said, “Oh do look after her, won’t you?” And she touched my arm.
So, I said in my jolliest school matron voice, “Of course I will.”
And she said, “Don’t be like those parents.”
I said, “What parents?” I had no idea what she was talking about.
She said, “Of that baby.”
I said, “What baby?” Still no idea.
She said, “Baby P.”
In her tiny mind: NG tube = child abuse. I remain speechless.
Our cleaner is going off to train as a beautician, so I cleaned the bathroom yesterday afternoon. It is the first time for months I have done any housework and I had forgotten how therapeutic I find it. Jasmine found the whole thing very entertaining and watched me from the hallway as I mopped and scrubbed. When Neil came back he said that it wasn’t as clean as when our cleaner does it, so I beat him with my feather duster.
We had just sat down for a rest when Jasmine’s Great Auntie Linda came round. She brought us some lovely chocolates and hand cream to keep our skin soft, and she brought Jasmine a really cute pair of leather booties. They are a little bit big but we think they are great. Jasmine is wearing them already and as they are elasticated, they don’t fall off her feet.
Last night, Neil was changing Jasmine’s nappy about 11pm and she was in the middle of a fill. (A fill is when Jasmine gets fresh fluid pumped into her peritoneum ready for a dwell. A dwell is when the fluid sits in there cleaning the blood using the wall of the peritoneum. And a drain follows a dwell and the fluid comes out of her peritoneum, ready for her to fill up with fresh fluid.) He was just tidying up when he thought he spotted a black bit floating up her patient line. When she is filling, it happens really quickly and we have dim lights in our bedroom when she is asleep, so I have often thought I have seen things in her line when I haven’t. But Neil was a bit freaked out by it. We had a chat, and I said that I thought it was a bubble which sometimes look dark against the wood of the cot, and Neil said perhaps. And we discussed it for a bit longer, reasoning as to why it should only be a bubble and nothing sinister, and then eventually we said that we would wait and see in the morning. So, even though I thought we had reasoned calmly, I still lay there worrying about it, until I fell asleep. This morning I checked her drain bag in a forensic manner and was happy to report that there was nothing in there. It probably was a bubble.
I had to stop typing there as Jasmine just threw up her NG during the middle of a feed. You can’t put the NG back down on a full stomach otherwise she will just vomit, so she will be a bit short on this feed. Still, we are giving her lots more milk in our endeavours to get her to put weight on, so she is already ahead of her feed schedule today. And now the tube is out, she is rolling around the floor very impressed with herself.
I have tried to make this blog shorter since my mum (‘our mam’) left me a message on here yesterday, and I was so pleased and touched (as she went round my brother’s house to read the blog) that I rang her up to tell her and she said, “You don’t half go on typing for ages,” which made me laugh. I explained that it is much quicker for me to type a long blog than a short one. But she wasn’t buying it.
“In her tiny mind: NG tube = child abuse.” The operative words there are definitely: tiny mind. Speechless was the way to go; it’s not worth wasting your breath on people like that.
Such a lovely picture of your beautiful girl today…
wonders never cease right (: I always replied to “what is wrong with him” with a nice big smile since I always had both kids in tow and said “nothing, what is wrong with you” Sometimes, its a little too much, the disapproving stares and all, but stuff it, you’re fab, Jas is fab and you’re all amazing! hugs, Jill
I just wanted to post to tell you that i am really glad that i stumbled over your post, my 6month old baby boy (Jaiden Bailey) also has end stage renal failure and is on peritoneal dialysis and has been for the past 5 months.
He is continuosly fed through his nasal gastric tube and i am forever having to put up with people staring and making comments like the one you have posted. Some people are so ignorant and naieve it drives me crazy.
Sometimes i feel so alone and like no one can understand what we are going through, the endless beeping of the dialysis machine and having to insert the nasal tube everyday because Jaiden pulls it out, the medication, dressing change, injection etc etc.
I’m sure no one could appreciate these things more than yourselves. Your daughter is absolutely beautiful.
We are just aiming for that 10kg, i never thought i would be excited about every pound my baby puts on, but i certainly appreciate everything a whole lot more now,
Jaiden is a evelina childrens hospital patient, so its interesting to see if GOSH do things differently.
Take care, i look forward to reading jasmines updates.