So, attending the pre-op meeting with our consultant, we were careful to discuss with him the things we needed to happen to marry the surgery with what we felt were Isaac's emotional and physical needs. We discussed the nil-by-mouth timings, and acquiesced to the "four hour rule", despite knowing that breastmilk is actually considered a clear fluid. We pointed out that if Isaac was to go without milk for four hours, I would need access to an electric breast pump as soon as I arrived at the hospital. We requested to be able to hold Isaac as he was given the anesthetic, and to be with him in the recovery room before he woke up. Our consultant said that the final decision about anesthesia was down to the specific anesthetist, but that every effort would be made to find an anesthetist who would accommodate us and that being in recovery would be fine. We were confident that we were being listened to, and hopeful that the surgery would go well. We took a few happy photos of Isaac pre-scarring!
We arrived at 7.30am on Friday 18th July, and, having not nursed since 4am, I immediately requested the promised breast pump only to be told that the ward's pumps had broken, and the purchasing manager did not feel they should be replaced, as he thought that "women should provide them themselves". I was told that I could go to a ward two floors down to pump, but they had breast pumps in a locked room so that no other ward could steal them. This set-up was fine while Luke was at the hospital and could be with Isaac, but he was planning to stay with the girls after the first night, and I was not happy about leaving Isaac alone to pump for the best part of an hour. Thankfully, some of my friends were available to hire a breast pump from a Children's Centre in Poole, and I picked it up when I went to Grace's Drama Recital (she did a lovely version of Robert Louis Stevenson's poem "Summer Sun", which I failed to get photos of because my phone was too full and she started before I was ready - but Ali did, so there is one below!) on Saturday morning.
|Grace as "The Sun", featuring |
Charlie's beautiful, naturally
dyed silk scarves
Isaac recovered really well following the operation. He had 10cm of bowel removed, and first pooed on the Monday. He also came off all medication on Monday, although he is back on oral paracetamol since returning home, since he is moving around a lot more. We came home on the Tuesday, a day earlier than anticipated. He is wearing a fabulous romper from a charity called Pop 'n' Grow who provide free , specially adapted clothes for children who need them for medical reasons; this one opens completely flat and poppers around children who are too sick to move, and has special openings at the side for wires.
We have been very lucky so far. Isaac seems to have settled into a habit of around four poo "sessions" a day, each comprising of one large poo, followed up by 4-5 smaller poos in quick succession. we manage this by having him in a nappy for the large poo, and then laying him on prefolds for the post-poo poos! This nappy free time, combined with a combination of Organic Babies Soothing Baby Salve and the most expensive nappy cream ever: Beginning...by Maclaren at £21 a tube, seems to be keeping the dreaded Hirschsprungs nappy rash at bay. Two other children with Hirschsprungs were in hospital with us - one to have a stoma created and the other to have a central line for intravenous nutrition put in. It reminded us once again that this is a lifelong condition; that just because this surgery went well, it doesn't mean that we will never have to consider difficult options for Isaac. We now also have a dedicated "Hirschsprung's Nurse", who has created a Facebook Group for families being treated at Southampton Hospital.
I am intending to write more regularly again now; things are somewhat calmer, and we are looking forward to a lovely Home Eddy summer full of great activities following our early summer holiday during Isaac's early days.