Thursday, 31 July 2014

Royal Victoria Country Park

We had a fabulous day out today, with Emma, Kendra and Neddie. We went to the opening of a new playpark at the Royal Victoria Country Park in Netley. Isaac is still a little distended, but he isn't getting any worse, so we decided to have a day away from it all, and we certainly achieved that!

Isaac with Emma, his Advocate
The park was hugely busy, but great fun, and there were lots of extra activities for the children to celebrate the opening. Sadly, we missed the willow weaving and the T-shirt painting, and the queue was too long for the face painting, but Grace loved the "graffiti wall" and the mobile making, and Jude had an amazing time at the African Drumming station.

African Drumming

Graffeti Wall
The playpark had been designed to be accessible to wheelchair users and very small children, so the zip-wire, which is usually a hair-raising experience with Jude, turned out to be enormous fun, and Grace grappled with the climbing wall,

As we headed back to the car park, we were somewhat distracted by the giant games and the colouring table; as I set Grace up with some colouring, I had no idea that Jude was quietly matching up dominos behind me!

Wednesday, 30 July 2014

Back to Hospital

We realised yesterday that Isaac was quite distended, so we contacted the hospital who told us that they would ring back today unless we felt it was an urgent problem. Today, therefore has been a lot of waiting!

Grace did read quite a lot of her latest Peter and Jane book, and chose to type up more of her dragon story, and Jude did more of her "colours" sticker book. I had planned to take them on a Reptile Walk at Upton House Country Park this afternoon, but we were called into the hospital, so Becky took them instead. They couldn't find the walk, but had a great time on the play structures and in the fountain.

Meanwhile, Isaac was subjected to the most brutal of check-ups at the hospital. The registrar checked his internal stitches with a finger straight into his bottom, with no pause to let his body adjust to the insertion of a foreign object. She then gave him the most bizarre (and clearly painful) washout we have ever seen, forcing saline through the tube with the syringe plunger (we were told - by the same hospital - never to use the plunger, but to use gravity to allow the saline to flow in) and then syringing out the contents of his bowel. She never allowed any time for him to "help" the process along or for the pockets of wind to escape. This is completely the opposite procedure to the one we were taught, and the reason we were given for not drawing back on the syringe is that in such a small child it is easily to suck in part of the bowel by accident an cause injury or even perforation. We should have stopped the procedure. As soon as we saw the way she was prepared to perform a rectal exam, we should have asked for someone else. It took us debriefing with each other afterwards to realise that stopping was an option, but we will certainly not be allowing her near Isaac again.  

Isaac waiting for his washout. The
distention is very clear on the
right of the picture.
We were supposed to stay overnight so that they could check for more distention in the morning, but no-one had told the nurses, so there was no bed for us. We suggested going home and bringing him back if his condition worsened, and thankfully, they agreed, so we were all able to have pizza together this evening.

Tuesday, 29 July 2014

Finding A Rythym

We are quite enjoying our loose pattern of "working" in the morning and going out in the afternoon/evening. This morning, Jude pottered about doing her "handwork"; lacing cards and sticker books, and Grace read some more Peter and Jane, completed another page in the "Knights and Castles" sticker book, dictated a story about dragons to me and typed up a little of it.

This afternoon we went to visit Great-Nanny; it was the first time she has seen Isaac since his operation, so she was very pleased to have a visit.

This evening we went to a free performance of Alice Through the Looking Glass at the Pier Approach Stage, which Grace enjoyed even though the sound levels weren't quite right, so it was very difficult to hear. Jude tried to get comfortable enough on the brick floor to fall asleep!

We noticed this afternoon that Isaac's stomach had become distended. As we are not allowed to give him a washout for two weeks post-operatively, we rang the hospital and waited a couple of anxious hours for the surgical registrar (who was in theatre) to call back. We were fully expecting to have to take him in tonight, but on hearing his symptoms (or lack of them, except distention) they are happy to wait to see him until tomorrow.

Monday, 28 July 2014

Reading and science

Grace is very proud to have finished another Peter and Jane reading scheme book (the same ones I learnt to read with!) She finds the the repetition of sight words a much easier way to learn to read than sounding out phonics. She will sound out, but only if she absolutely has to, so Peter and Jane seems to be a much better way to learn than some of the more modern reading schemes (despite their narrow gender depictions!).

We also experimented with the mass of water; yesterday Grace asked why wet nappies feel heavier than dry ones, and we worked out that it must be because they had water in them. She asked whether water "weighed", so we gave it a try this morning, and we talked about water (and other liquids) having mass.

Sunday, 27 July 2014

Festivals and Fun Days

We moved the bins this morning. Nothing very exciting; they hadn't been put back where they should have been after bin day, so we shifted them a couple of feet to where they live. We discovered, however, that rather a lot of woodlice live under our bins, and those were extremely exciting. We took some pictures of them:

Photograph by Grace

Then Grace brought one in to examine it more closely:

We did some reading, writing and drawing - all connected to woodlice.

Then Jude managed to find and bring in the only dead one, and at that point we stopped studying them....

We went back to the Mudeford Arts Festival for the Art Exhibition Prizegiving. Grace didn't win, so we discussed famous artists who never achieved critical acclaim during their lifetimes, and Grace decided that she would continue to do art anyway, because she rather enjoys the process. We had another look at some of the adult artwork in the Exhibition, and discussed the difference between naturalistic and impressionistic paintings. Grace prefers naturalistic ones.

After picking Luke up, we went to a local fun day, where the girls really enjoyed the activities put on by a local "Youth Gym". Jude is quite the skater girl (she does have an amazing sense of balance for a two year old!) and Grace loved the rowing machine.

If we ever worried about socialisation, a trip to the park always sets our mind at ease. Grace is always immediately in the thick of the biggest group of children she can find and Jude finds her own gentle connection with people.

Saturday, 26 July 2014


As Isaac is continuing to recover well from his surgery, we told Grace she could hold him again today. She has waited, more or less patiently, for a week and a half for this moment!

This afternoon we went to the Mudeford Arts Festival, where Grace is exhibiting a painting. She was very excited to see her painting displayed with some others in her age group and many adult paintings too.

Grace's painting/collage (top)
exhibited at the Arts Festival.

It was very hot at the Festival, with no shade whatsoever, so we headed over to the playpark in the shadow of some trees. Grace has been trying to swing herself for some time now, and today she finally cracked it.

We came home and discovered a certificate on the doorstep for Grace, for participating in the National Young Writers Award. She was thrilled to bits!

Friday, 25 July 2014

Back to "school"

Now that we are back from hospital, we are definitely back from our "summer holiday"! We had always planned to take a break when Isaac was born, as usually the weather is so good in May/June, and as soon as the schools break up lots of free, fun and educational activities pop up, so it seems to make sense to take an early break so that we can take advantage of them.

We are trying to make things a little more structured than we have done in the past, just to make sure that we are covering the important elements, so we have devised a "timetable" for Grace. We are never likely to be structured enough to have set "lesson" times, but this way we can at least keep track of what we have done, and strive to fill in the gaps. She is really enjoying ticking off things as we do them, and having some autonomy over when she does particular activities.

With this in mind, we recently went to buy some new workbooks for Grace (which she loves to do), and Jude decided she wanted one too, so I bought her a "Colours" sticker book. Grace then decided that she would rather have a sticker book too, so we came to an arrangement whereby she would choose a History sticker book (she chose "Knights and Castles") and we would use it as a "jumping off point" for other activities. So far this has been very successful; she has produced a piece of non-fiction (partly written by her and partly dictated and written by me), and today has been working on some fractions (in the shape of shields!). Jude has also been enjoying her sticker book.

Non fiction writing, complete with picture of a
page hanging out washing on a rotary washing
line. A good opportunity to talk about

Shield Fractions

Jude's book of colours
Of course, no day is complete without a little bike ride and some swinging on the bars both wearing the new shorts which Nannie made....

 I caught Grace in a (naked) random act of kindness; cleaning Jude's bike when she thought no-one was watching. As she was already naked, she was in the perfect position to enjoy the thunderstorm a few seconds later too!

Thursday, 24 July 2014

Surgery and Beyond

We have been home for 2 days following Isaac's bowel pull-through operation, and are adjusting to our new normal. We have been so lucky; we have amazing, supportive friends and family, without whom our hospital experience would have been infinitely more difficult. Nonetheless, despite a textbook operation and recovery, the hospital experience was, once again, unnecessarily painful and difficult for us as parents. We had already strained relations with our surgical team, following an incident regarding Isaac's feeding a few weeks ago. In June he was weighed and found to not be putting on as much weight as the team would have liked. It was agreed that our midwife could weigh Isaac at home and we should phone through his stats. He was weighed for the first time on this regime four days after his hospital appointment, and had only gained a tiny amount. We dutifully phoned his weight through, and were told that our consultant was on holiday, but had left instructions that Isaac should be admitted if he failed to significantly gain. We outlined our plan for increasing his weight; continuing to breastfeed, but adding supplementary syringe feeds of expressed breast milk.The hospital agreed that this was the regime they would use too. On the basis that there was nothing the hospital would do that we weren't planning to do at home, we declined admission, only to be told that because the consultant was away, there was no-one to rescind his decision, and as we were, therefore, going against medical advice with a child, we would be referred to Social Services. They did say that we could attend Poole Hospital, so we were blackmailed into an overnight stay there.

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
We were hopeful that we would be allowed to stay with Isaac after two other anesthetists explained to parents how important it was for children to have a parent with them. Unfortunately, ours only believed that applied to older children, stating that Isaac "wouldn't know the difference". When I said that I wanted him to go under happy, she said that she "wanted him to go under safe" and she couldn't do that if "she had to concentrate on parents too". When we took him down to the theatre suite, we were then told that we would be called "once he was awake". We reiterated our request to be with him as he woke up and were once again told that while that was important for older children, it "doesn't matter for babies". We were told that we would not be allowed to wait in the waiting room, and were locked out of the theatre suite altogether. After the operation, our consultant , Mr Keys found us by the locked doors and explained how the operation had gone - and it was a further 20 minutes before we were allowed through to see our baby. I was beyond furious, and, to be quite honest, I still am whenever I think of it.

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: 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.