Victoria

Updates on Victoria Lily Joy van den Broek, born 120705.

Tuesday, August 30, 2005

Growing

Victoria was weighed again last night (thanks Viv!) and has gained 145gr since last Monday. The growth chart suggests an average of 135gr per week is normal so we are on target. Nevertheless, if there is a bed, Victoria will be going into hospital today. I will be suggesting that she doesn't need so much duocal as the cons. said.
Please pray that the care of Victoria in hospital will be sensitive to her needs - chucking in lots of food into that little tummy - which is quite sensitive - (now I have forsaken cheese she is not so sick....) might well mean she will be sick and lose the benefit of not having to expend energy to get it in there. I am quite confident that, until such time as Victoria will breastfeed or suck properly from the haberman feeder the syringe and tube arrangement is by far the best for her.
Please praise the Lord, with me, for the excessive kindness and care of Viv. She has, over the past months, gone far above and beyond the call of duty and has provided invaluable practial advice and encouragement when I have most needed it. All that and flowers and dinners too! Pray that, just as the Lord blessed the midwives in Egypt in the time of Moses, the He would richly repay Viv.
The Warings arrive tomorow, Ron has gone to the dentist (he hopes to have the offending tooth pulled out!), Philip leaves Borneo on Thursday for the homeward journey and hopes to arrive at Heathrow on Sat. at 3pm. All being well, Ron will take the landrover and caravan on Sat. mng and I will, after collecting Philip, head for the camp on Sat evening. This is what we would like - but we are prepared to accept that our Loving Father might have a better plan...

Thursday, August 25, 2005

weight

Naughty me - I forgot to say that (flying in the face of the disasterous last couple of days of feeding) Victoria has again put on some weight. I was only hoping against hope that she hadn't LOST any - but a gain of 35gr since Monday was achieved. Praise the Lord!

reprieve

The cons. really wanted Victoria in earlier in the week, it seems. Therefore, it being bank holiday ahead, she is to be admitted on Tuesday next instead. The issue is weight gain. The policy locally is that ng tubes are put in and used only in hospital unless it looks like someone is going to need to have it long term in which case parents are trained (but it seems to take longer than three days....) to site and use it. I hope, by means of olive oil and maple syrup to boost V.s calorific intake since the duocal tastes disgusting (if the smell is anything to go by) and hardly qualifies as real food. I also plan to drive over to Epsom tommorow after seeing the cranial osteopath and buy some Nutrivene which is a product researched and developed, in the US, for people with Downs syndrome. Basically it is vitamins, minerals and enzymes which help the brain development. It is jolly expensive stuff but Victoria needs all the help she can get.
The last two mornings David has got up at 4am and taken Victoria and the pre-prepared bottle I leave for him so that he can try and get as much of the milk into her as possible - then I finish it off after her returns her at 5am (with the syringe and tube). Last night I woke up at 3.30 thinking it was 5.30 and that David had missed the feed. I hadn't got back to sleep when he came in to collect her and I dozed a bit while she was gone. When she was returned I thought I would leave her until the 7am feed but then I realised that she had only had about 40mls from the bottle so at 5.30 I got out of bed .... before I went back to bed I had to express milk and then it ws nearly time for the other to be up and the next feed was at 7am anyway. In the circumstances I feel remarkably well. In fact, while we were waiting to see the Dr. this afternoon I thought that Ron looked like HE had had a sleepless night - but he hadn't!
This morngin we had an assessment from the speech therapist regarding Victoria's suck and swallow reflexes - that took a long time. Tommorow we have a second visit to the cranial osteopath. With the Lord's blessing this could make a difference to Victoria's suck (it was a bit better after the first visit) and therefore to the amount of milk she takes in. Thanks for your continued prayers.
The pressure I feel under is a result of the care of the NHS. Where one has to pay for care one can stay home and accept the fact that one's child is not able to grow very fast because of the struggles her body is having to exist - and no-one will lean on you because they don't give their services unless you are going to PAY them. What a pity it is that the NHS don't care enough to provide Nutrivene at £65 a go and haberman feeders at £40 for three.....!!

Speech therapy

We had a long visit from the speech therapist this morning. She watched Victoria fiddling about with the haberman feeder (she agrees with me that the end of it is prob. a bit too long for V. causing her to gag on it) then she watched me doing what has sustained V. for the past 6 weeks. She conceded that she was 'happy' for me to continue feeding my daughter in this way (though she is not happy about the method in other people's hands!!). I pointed out that I had been doing for 6 weeks already and that Victoria had never choked on milk going down the wrong way yet!
A report has been duly written for the Cons. this afternoon. I hope that we can get away with being a day-admission for the ng. tube tommorow - it is not as though we live a long way from the hospital and either the community paed. nurse can come out here or else I can take V. back in when anything needs doing with the tube.


Wednesday, August 24, 2005

Weds. evening

Can't write much - feeding so dismal I have lost count of how much/little Victoria has had today. The speech therapist is coming tommorow mng at the same time as the H.V - that's the plan at least. The idea is so that she can watch V. feed (or not). Haberman feeders have not, as yet, proved to be the wonder answer we had hoped for. Seems v. likely that Friday (after the cranial osteopath appt.) we will be having a little stay in hospital....
Spoke to a dear lady in N.I. today and she told me that ng. tube feeding seemed to be the best thing for most of the D.s. children she knows. Also hope to soon join a yahoo group of mums in my situation.
Beginning to be able to see the bigger picture now. shame I can't have an internet connection while in hospital - all that time I could be finding stuff out about d.s. etc.....
Will have to settle for a continued feast of George Grant's 'modernity lectures'.

Tuesday, August 23, 2005

Tuesday evening

The haberman feeder is less messy and less intensive (I must have spent 8 hours a day every day for the past 5 weeks looking intently at my daughter's little mouth) AND David is able to feed V.
I was trying to feed her this afternoon and getting very frustrated because she was thrashing about (or was she thrashing about because I was frustrated?!!). Since David was in the house I asked him if he would like to have a go - and she was very calm and drank (slowly) from this bottle. So I went out in the garden, took James by the hand and went for a walk with him - which was lovely. David did the next feed which started at quarter to 4 and finished at quarter to 5 - but that is not the first time a feed has taken that long. I am trying not to worry, she looks quite replete - no signs of malnutrition. I guess the problem is that I live in fear of Dr's and hospitals (no doubt something to do with my childhood...) . I determined that I would give only Nutramigen into which I can add duocal without V. spitting it out - but it matters little, her suck is getting less. We have an appt. for Victoria with the cranial osteopath on Friday and I guess after that I should resign myself to being incarcerated (for Victoria's good, I agree) once again. It is very hard knowing that James and Joanna are having to survive without a mother's care - esp. James. The machinery of home life can go on too easily without any tenderness or cuddles. At least I have a few days to get my bag in order and won't need to spend the first 3 visiting times sending home instructions for things to be brought for me.

Monday, August 22, 2005

Weighed again

Moving on from the last post (a couple of hours ago) the midwife came back and brought the scales with her. Victoria has put on 100 grams since last time she was weighed and is now above her birth weight at 4.14kg. We are all pleased about that.

Hopefully it will not be necessary to admit her back into hospital if the trend continues.

concerns

We went to the cranial osteopath - Victoria didn't much care for it.
Shortly after getting back Viv called round to collect the paperwork and while she was here the consultant phoned from the hospital. he would like Victoria to be admitted to the hospital on account of her not having put on weight. Viv is now on her way to the hospital to get some scales in the hope that Victoria will be found to be a little heavier so that when the Dr. phones again in the morning we can suggest that we might as well wait until we see him a the appointment on Thursday. Of course if Victoria is not putting on weight because of her heart condition the easiest thing to propose would be to bring forward the op.... I have heard of many babies in similar situations who, in spite of all efforts not only failed to gain weight but actually lost it - which (so far) Victoria has not been doing.
Trying not to be worried.....

Monday 22nd - morning

Monday 22nd]

The weekend went farily well. I was able to do something normal yesterday, and am paying for it today – it was badminton with Timothy. And there was I looking forward to getting back on the trampoline – better take it very slowly when I do. Then again, the rain will prevent me today.

At 9.30pm yesterday I got Victoria out of bed for an early feed (having finished on the phone to Lucy and got things straight for the next pumping and feeding it seemed not worth trying to sleep for half an hour until 10pm) and Victoria glugged down, most efficiently, all 90mls of her formula. The reason for giving her the formula at that time was because she then has 4 hours to digest it before the next feed. I am getting wiser to trying to maintain Victoria’s intake and my sleep. The 2am feed, however, took an hour and she didn’t even get up to 80mls before an hour had gone by – well she drank 90 mls but brought back a whole 20! She was not sucking beyond the first syringe. It might be that she is just too tired or too unco-ordinated.

The exciting news of the day is that Joanna Kolker, the cranial osteopath, phoned this morning and has a free slot at 3.30am. One has to hope that ANYTHING might help and there are good reports of improvements in babies due to this procedure. I only have to drive as far as Pyrford for the treatment.

Another improvement is due to the Kali phos. I have been giving Victoria. When I have given it at 2am I have found that at 6am she is actually dry (not needing her clothes changing because they are soaking wet) so I guess that means there is less strain on her little body.

I shan’t say that I think she has put on weight (!!) but I had Samuel work out the average intake over the past two weeks (I worked out the one before that and it was 560 – ish) and it showed that last week she was up by 50mls per day on average.

I have ordered, online, some ‘haberman feeders’ which are a specialist bottle designed for use with babies with cleft palette or a weak suck (as in the case of heart babies and downs babies). It was galling to see that they are $36 in the US and £36 in the UK. They were difficult enough for me to find anyway. However, since I am seeing the consultant on Thursday and he is very sceptical about the syringe-and-tube-arrangement I will feel more confident if I can say ‘I have tried the bottle and she doesn’t suck – so gets nothing’ (which I have) and show him the haberman feeders – I suppose they should be here by then – and I should be able to offer a report on how they work out.

Richard and Samuel are doing sterling work on the practical support front. Richard washes all the bottles and pump bits and sees to the steriliser. He also brings me my bio yoghurt (to which I add a selection of nuts and seeds) having arranged, the night before, at what time I would like it. Samuel is keeping up with the washing and keeps the bibs-and-sick-cloths basket well stocked up.all the time. He also quite often will wash and change Victoria for me. All these little ministrations mean that I have a little more time at my disposal, for which I am very grateful.

Thursday, August 18, 2005

Blood, sweat and tears (and toil)

We went to the hospital, as appointed, and blood was taken. At least it wasn't as arduous a process as last time. It seemed a pity to me that the amount of blood collected on the cotton wool after the process was declared to be over was greater than the quantity collected in the tiny bottle - but as long as the path. lab have sufficient, we shan't complain. Blood and tears were inevitably in evidence.
Sweat, well, yes, it has been very hot today and I have had a more than usually wet baby to deal with (can't indulge in 'kangaroo care' in this weather!). Victoria is wearing only a t-shirt - and that only so that she is less slippery to handle!
As for the toil. While we were at the hospital I met up with the dietician who, helpfully, agreed that if Victoria wouldnt' drink my milk with duocal in it, there was little sense adding duocal to it. Also that the nutramigen with 3 scoops of duocal added (approx 100mls twice a day) was prob. the best we could do at the moment. It is hoped that a speech therapist will now be called in to see if anything could be done about Victoria's suck - which is, as I might have said before, almost none-existent most of the time. Even the swallow seems to be slipping away.
So, I labour on feeding every 3 hours for at least an hour at a time - often with an empty cup at hand to catch the rejected milk - hoping to leave Victoria at least 85mls in her little tummy each time.
Last night I was supposed to wake her up at 2am, following the 10pm feed (the only time I indulge myself in a 4-hour interval....) but was astonished to see that the clock was telling me it was 3am - so I jerked into action. I think Victoria would gladly have gone on sleeping! It is truly a great blessing to be able to put her down after a feed and have no further disturbance in the way of whining and grumbling, and this is a cause for great thankfulness.

Philip

It might be that there are people visiting this blog who would be glad to know of how philip is getting along - the technology is now in place and by clicking this link you can find out the news so far.

Wednesday, August 17, 2005

Weighed and found wanting (again)

This morning Victoria was sick after her medicine (again) and had also filled her nappy before she was place, hopefully, on the scales. In spite of my best efforts over the past week to make sure that she gets absolutely as much as she can swallow, every three hours, she has dropped by 20gr.

I wait to hear back from the dietician about how much duocal I will be adding to the nutramigen over the next week. When I tried to add it to the breastmilk Victoria disliked it to the point of gagging (not good news for any milk which she may have already stowed away….).

In the night I was listening to a Doug. Wilson sermon about faith and I THINK I begin to ‘get it’ but I shall have to listen again after this little set-back. I guess I feel like I am being naughty because I am failing to get my baby’s weight going in the right direction but I am (honestly!) doing what I have been told at the hospital.

Trying not to be discouraged and getting ready to face the coming week with it’s struggles and challenges on the feeding front.

One cheering bit of news is that last night after V. had fed she unusually awake so I tried to breastfeed and she complied. Not that she has any suck worth mentioning but she swallowed all that was consequently let-down, so that was good. Will try and make a point of trying her more often (but only when, should she refuse and get upset, it will not be more than I can cope with….).

Monday, August 15, 2005

Monday

I still haven't been able to make any progress regarding the medicine - the consulant is on holiday, the community paediatrician is not answering my messages and my GP was not in today....
Overnight Victoria was not sucking at all - but was still swallowing once her mouth was full - that makes for very slow feeding and I have to listen carefully for whether the last lot has gone before I squeeze the syringe with the next lot. I allowed myself 2 x 4-hour intervals between feeds last night because during the day she had taken quite a bit. Yesterday she had a total of 620mls. Today we are on target to meet the 600ml goal also - so maybe I shall get a bit of extra sleep tonight too. I think she is getting bigger - she is next weighed on Wednesday DV.
Ron has been to the GP this morning and been told that the walking he has been doing has been the cause of the pain and that he ought to give it up.
today has flown by but I have been able to catch up on some book business and emails.
this week's plans are for the small children to be out tommorow for hte day - probably swimming for part of it - and dinner to be brought (or sent) for the next day. Thursday evening a lady from church has promised to bring a dinner and Friday another friend is bringing dinner so we are provided for once again (hearty thanks to all involved, you couldn't have a more appreciative bunch of consumers - I think I ought to record the comments as we tuck in and post them on the blog!!!). Friday the small children will, once again, be taken out and in the evening friends will come to distract Ron from the tedium of not being able to go out and work!!! We also have visitors booked for Saturday and Sunday - so that will be another week in which the Lord has shown his kind provision.
On Thursday we have to take Victoria for another thyroid test - my only concern is that it was very difficult for the Dr. to extract a very few drops last time and that the diuretics might make it more difficult this time, but I must keep trying hard not to WORRY about things so far in advance (if I can't get out of the habit of worrying at all!).
As I lie on my bed at night and begin to tell the Lord all my concerns , the Spirit brings to mind comforting and strengthening verses from Scripture. If I get my hourly concerns in the eternal perspective it somehow seems more manageable. I used to speak to other home-schooling mothers about the task as seeming like 'life in the trenches' - one cannot see very far ahead or around and one cannot understand ones own part in the greater war which is going on but we have to know that where we are and what we are doing IS a vital part of the battle in which we are on the winning side.

Saturday, August 13, 2005

Sat 13th of August

Lucy is home now. I just read her email sent yesterday in which she says that the lady, on whom we had pinned our hopes, at Guildford is making sounds like it WON’T be possible, after all, for Lucy to transfer. I am trying not to be discouraged and reminding myself that we have a Sovereign God who has immeasurable power (thanks, Ruth, for reminding me of that!!) and if He wants Lucy back at home, then He will make sure she gets here.

Last night was full of angst. The feeds all yesterday were very slow and time consuming . We did, in the end, manage to achieve the goal of just over 600mls for the day, thankfully. During the night I think I was having a taste of things to come. Victoria was not only not sucking (I just had to squeeze the syringe slowly and wait for her to swallow) but in the end she was unwilling to swallow. I settled for 60mls at 2.30 but she did do a bit better at 5.30am. I thought I would be having to take her to the hospital this morning because she had been so very UNawake all yesterday but she is perkier this morning. The 8.30 feed of 80mls still took 1 hour and 20 mins ( a rate of consumption of 1ml per hour!).

Prayer concerns are 1: Lucy and her transfer 2: Victoria and her weight – we really don’t want her to go backwards and would prefer for her to increase – she is weighed again on Wednesday. 3: the medication – the one of which she has to have 4mls is a real trial to her (and it is thick enough for her to push some of it out with her tongue…)

For next week we wait and see what the Lord has in store for us in terms of help but the freezer is, thankfully, well-stocked so we don’t have any worries on that account. Thanks also to all those who brought cakes and food this past week – it is not only of practical value but also is a tremendous reminder of the love of the Almighty Father who provides caring friends for us.

Friday, August 12, 2005

Friday

The extensive pink post caused a bit of consternation amongst my children, so I have chosen blue for this one. Maybe I should colour code the ‘good days’ pink and the less good ones blue…
Yesterday afternoon and evening Victoria was very bright and looking around, waving her arms and legs and generally being very jolly. One could have forgotten all the struggles her little body was having. Overnight it was a lot different. The diuretics have meant less sweatiness but she still has cold arms and legs. The nappy was phenomenally wet and I began to wonder whether, perhaps, I had not changed her all day… then I remembered that this was the purpose of the medicine! Victoria does not at all care for the medicine. In fact, having to have it brings tears to her eyes. She has to have a phenomenal 4mls of one but only .5ml of the other. The latter goes down before she notices, thankfully. I am going to make enquiries about whether there is a different concentration of the Spirolactone (I think that is what it is called…) so that the quantity I have to persuade her to swallow, rather than spit out, is reduced.
Last night’s feeds took longer than I would have liked (the best she does is 80mls glugged down in 20 mins.) sometimes it is all over so quickly that I jerk awake before the time of the next feed afraid that I missed one. Since I write down the details of every feed on my clipboard I am always able to sort out such confusing times. Feeding last night was back to the bad-old-days of 45 or 50 mins to take 70-75mls (at which point she is not sucking at all and has about given up swallowing). Thankfully this is all so variable that I retain my optimism (and confidence that the Lord will not allow her to fade away just yet….) and approach the next feed with confidence.
Our friend (who wishes to remain nameless!) is staying until tommorow, then we have Lucy for the weekend. I shan’t think too much about next week but will be glad if the Lord moves some local people to suggest taking out some of the little people – either that or I need to be a bit better organised and take them out somewhere, with a picnic.


Thursday, August 11, 2005

Thursday

I get the privilege of writing on the blogspot two days running. Ron got home from hospital this morning and is looking well – though feeling a bit uncomfy.

Victoria is due to start her diuretics this afternoon. She is still sweaty when she feeds but is better when she is sleeping – esp. if she is outside in the pram.

We are looking forward to having Lucy home for the weekend and anxiously waiting to hear from Philip (who left on Monday) in Borneo.

Wednesday, August 10, 2005

weigh-in

today, when I surfaced at 9am, all was tranquility and order. A very kind friend has come to stay until Saturday and it is a great benefit to have someone who knows how to tidy the kitchen, as well as to have fellowship with. I am sure the children are enjoying having stories read, a thing which has been somewhat neglected over the past 4 weeks. Another h.s. friend from Woking brought round a lasagne for our dinner and we enjoyed the apple and blackberry crumble which my dear midwife made for us.
This afternoon Victoria was weighed. She has gained 2 and half ounces since Friday. This means that at 4 weeks and one day old she is only 2 ounces below her birthweight. We are full of thankfulness to the Lord for this increase and continue to pray for growth. Over the past few days Victoria has taken approx 80mls 8 times a day - I suppose as she gets bigger this will be increased. We will get the other diuretics tommorow but since her lungs are still clear we may not start to use them yet. We have the duocal but I am going to discuss with the dietician whether, in the light of the recent increase, it will be necessary to give Victoria the duocal at the rate outlined when we saw the dietician last Friday. Our next hospital appointment is next Thursday - for another Thyroid test and then we have another one the week after that to see Dr Tosin again.
Ron has been in hospital today for a hernia op. I hope to be phoning to arrange to collect him soon. We have not heard from Philip but he did try to send an text message to Timothy - so we assume he is at least still alive!
Thank you for your continued prayers

Sunday, August 07, 2005

Latest Picture

This is a picture of Victoria in the dress Tracy made for her. The last picture for the next 5 weeks.
Posted by Philip

Friday, August 05, 2005

the verdict on Friday

We saw our nice Dr. Tosin this afternoon. Victoria was weighed and found wanting again (although she had increased by 70gr since Tuesday). She has been prescribed duocal to be added to the expressed breast milk and the formula. There was allusion made to perhaps using an alternative to the milk she is now having - perhaps even including the milk from me..... Thankfully the dietician suggested adding duocal so a prescription was worked out for that and I made enthusiastic and co-operative noises in response to the suggestion. Also because Victoria's breathing is obviously faster and this is leading the to increased sweatiness and coldness, she has been prescribed two different diuretics (to get rid of spare fluid in her body and thereby reducing the strain generally... - although I suppose it will also result in weight loss). The problem here is that we need to give them both at the same time and one of them will not be available until next week. Her lungs are, thankfully, still clear of fluid though so perhaps it won't matter too much... We get to see the Doctor again in 2 weeks - at which point she will have had only one week of the diuretics but two weeks of the extra calories.
victoria also has thrush - for which I hope to apply bio-yoghourt. The Dr. said he was going to suggest nystatin and raised his eyebrows at my suggestion. I told him that it had always done the trick with other children who had the problem....
Please continue to pray about Lucy's transfer from Leicester. It struck me, while on the phone to her last night, that if she is to join the Guildford students who begin in September (she suggested that the end of Jan would be a good time) then she is wasting her time in Leicester now since she will repeat all that she has done when she joins at Guildford - being already 6 months into the course. This might mean that she could be home sooner than later and would also give her opportunity to earn some money working over Christmas.
After the hospital we went and collected the photos of Victoria which I hope to send out to many of those who have sent us cards and good wishes - perhaps it will help to remind people to pray for her as well as brightening up fridges and mantlepieces (do people still have such things??!).
The blocked duct is now completely clear - thank you for your prayerful concern. Now I would like to get a homeopathic remedy to increase the milk supply and I would, of course, like to have Victoria feeding 'from source' (as Timothy so discreetly put it!) at least once a day...

Thursday, August 04, 2005

ups and downs - mostly downs.....

Yesterday was a day full of gloom. A blocked duct was causing great pain and after dinner (eaten in terrific haste because Victoria was bellowing, uncharacteristicly) Victoria threw back at least 10mls of my milk. I sat and wept and considered that the only person who really considers my needs is Lucy - and she is gone. Of course I know there are many others who, if they were nearer, would minister to me but I was not seeing straight yesterday and felt I was NOT the kind of mother Victoria needed - I felt VERY impatient with her dozy consumption of trifling amounts of milk....
With big doses of garlic, vit C and (in the end ) ibuprofen the situation improved overnight and this morning, when Viv called round to check up on me, she confirmed that the blockage seems to be resolving. I am thankful for this. I was thinking that while I was asking the Lord to clear up the blockage He was doing it while I was still asking him. I wondered whether the nobleman , whose child Jesus healed at a distance, felt at all anxious (as the distance between himself and Jesus increasedon his return trip home having been told his child would live). As he went home alone with the burden of inner pain about his child - maybe he believed so fully that it never crossed his mind to doubt - but then again maybe the burden was only fully lifted when the servants met him and told him the good news.... While thinking about how I could rest confident in His care it came to me that I am just a branch - He is the vine. Trying to realise my branch-ness is not what I should be about, only to stop acting like I am a free-standing branch would bring me into a place of peace.... Viv called this morning and agreed with me that the blockage was not turning into an infection and was, in fact, slowly, sorting itself out - the pain is certainly MUCH less than yesterday, Praise the Lord.
Next week we have the joyful prospect of a dear 'mother in Israel' (actually she may not be any older, maybe younger, than me....) coming to help out and other dear saints bringing meals each day from Tuesday to Friday.
Tommorow we have an appointment with our Dr Tosin as Victoria is looking bluer and being cold and also sweaty. She is still pretty bright at times and generally feeds quite well. Because I want her to have increased in weight I shall be up every three hours tonight to get in as much milk as poss.

Monday, August 01, 2005

Invalid update

Invalid because since labouring at the following my Mother, a quick typist, wrote all the same things and more below, but in more words. So this is now a sort of edited preamble and summary to the (pink) post below. If you have lots of time skip this and go straight on - you will be benefited more that way.

There have not really been any major technical advancements recently but there is an appointment due tomorrow (just for weighing and suchlike as I understand it) and also probably with the consultant on Thursday. Meanwhile there are no obvious problems other than getting her to feed. She is not exactly thin though.

She really is a very contented baby, and cries but rarely. She also sleeps a lot and personally I am better at holding sleeping babies so it suits me. At least on the rare occasions I get to hold her.

Lucy went back to Leicester on Sunday afternoon so things are a little more stretched here, but Lucy gave us a menu for this week so there is not complete pandemonium. Next week gets a bit busy with my Father having an operation and Philip leaving for Borneo. Someone has very kindly offered to come and stay (and help) for the week though.

Thank you for your continued prayers for us, my Mother and Victoria especially.

Monday Aug lst (already....)

Monday

With regret we waved Lucy off yesterday afternoon. She has returned to Leicester unsure of when she will be able to transfer to Guildford but having filled out and returned the necessary transfer forms. It was so very helpful to have Lucy home for the three weeks (minus one when she was on beach mission in St Ives, with Timothy). She has made sure that everyone is fed (and left us with a legacy of delicious cakes) and kept out of the way when I needed to sleep.

This morning I was up very early and Victoria’s breathing was a little troubled so I went to the lounge with her where she eventually fell asleep. When she is lying on the front of someone her breathing improves. After the 7am feed I moved into Lucy’s room – and Joanna moved out. This way Ron won’t get any more disturbed nights for the time being – he needs his rest with his hernia operation looming (next Weds).

The feeding is going well with Victoria taking 75 – 80mls at most feeds – still using the tube and syringe because she won’t latch on.

A dear friend from Petersfield brought round a fearsome-looking pump on Friday which I have been using since then – it is more effective than the little one my neighbour lent me. This means that Victoria is getting 45 or 50 mls of home-grown milk at each feed with top-ups of Nutramigen (which will run out tommorow….). Jean, the health visitor, comes tommorow morning to weigh Victoria again.

Please pray that Victoria will continue to feed well, once her lungs begin to fill with fluid she will have to have diuretics which will mean that she will necessarily lose weight. She is very well at the moment and although she wouldn’t win any prizes for her suction, the tube-feeding continues quite successful. She is occasionally sick after a feed – which is a bit worrying – but I think it might only be because of wind so I must just be more diligent in not continuing until I have exacted a burp from her.

Kind thoughts and cards keep coming in as tangible tokens of the care of the saints (mostly home-schoolers) from all over the country. Yesterday one of the ladies from church brought 4 cooked chickens and a load of potatoes along with apple pie and bread-and-butter-pudding.

One homeschooling family from Hereford (I only know that because of the postmark)) sent me a little booklet by Max Lucado which I have been reading a chapter at a time and it has been a real blessing. The theme is Psalm 23. The section by means of which I have received the greatest blessing was on hopelessness. It is copyright so I can’t quote verbatim but I thought I should summarise the chapter here.

Imagine your friends and family persuade you to do something you never did before – go on a trip to the jungle. You join a group and wander along through the dark-green-ness until you need to bend down to tie your boot lace. A nearby fellow-pilgrim offers to hold your bag for you but by the time you have tied your lace you look up to see that you are left alone – everyone else continued on without you. You hurry on and come to a fork in the path and wonder whether they went left or right. You make a choice but you don’t seem to be catching them up. You blunder on panicking and after what seems like ages (not that you can check on the time as your watch was on the bag which you no longer have) you slump down on a log in despair and weep. Here you are, all alone, without a guide and in a completely alien environment. If you were in a strange town you could at least ask someone for directions but here there is no-one. Then imagine that another person joins you – he also is lost but it is some comfort to have someone else along – not a lot of use though. Better by far if someone who knows the terrain and the path joins you and says ‘come this way’. Psalm 23 tells us that Jesus leads us in the paths of righteousness, for His Name’s sake. How easy it is to despair because we only look at the circumstances and know ourselves to be completely ‘out of our depth’ (and HOW time seems to stand still while we grope along in our numbness) but somehow we must grasp the idea that the Lord Himself is with us. What we need is NOT different circumstances but a supreme confidence in the Lord God of our salvation, resting in that knowledge has to be the key to peace of mind.

 
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