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

Tuesday, November 29, 2005

Sunday picture

20 weeks today...

This morning Victoria weighs 5.22kgs - she's doing nicely. I thought it would be a good thing to try and put a picture up for this special day.
Well, that is another new skill learnt.
Victoria remains as popular as ever with her brothers and sisters - this morning Thomas has got her after Samuel dressed her and helped with the weighing.
This morning's attempt at breastfeeding involved fewer tears (!!) but was no more successful. I am determined, however, not to be discouraged - I recently spoke to a lady whose (ds) daughter at 22 months is the size of a 6-month-old and has been on 'infatrini' most of her life. Victoria's Dr. threatened 'a change in her milk' to this stuff and with the help of the dietician we were able to resist and continue with the good stuff. This other little girl has developed such a taste for sugar that her mother has trouble trying to persuade her to eat things without sugar in AND she isn't even growing well.
So, even if Victoria won't breastfeed, I shall continue to pump as long as the Lord supplies the milk for her, and rejoice.
She is rather beautiful isn't she?!!! I shall post more pics now I know how to do it!

Saturday, November 26, 2005

further failure

I tried again this morning to breastfeed Victoria and she wouldn't co-operate. Consequently I tried to get some more of the playtex feeders in Woking, on my way to the osteopath - there weren't any so have ordered on line. I guess it is about time I bought my own steriliser too since it looks liek there will be no end to the expressing/sterilising process for the forseeable future. I ought to look on the bright side and be thankful that my milk supply continues as good as it is (and I AM thankful, honestly!) but it is hard to come to terms with not being able to breastfeed Victoria.

On another (non-victoria) subject, last night my computer froze while I was looking at the weather (no pun intended!!!) and this mornign I find that a blizzard has swept through my inbox and blown away ALL my emails which were either waiting for answers or for futher responses.... I guess it is one way of getting it all cleaned up but not the way I had intended...

So, if you are waiting for a response from me, please resend.

Don't forget the victoria evening on the 3rd of December - only one week away. There looks like there will be in excess of 20 people visiting, including VIV!!! So you will get to meet this dear lady (who assures me that she is nothing special - I don't believe her of course.....).

Friday, November 25, 2005


Haven't written in colour for a while, so thought I ought to do so today. Yesterday, for the whole of the rest of the day after the failed attempted-breastfeeding-with-supplementer, Victoria used the playtex premium nurser - the shape is a bit more 'natural' so (perhaps!) ought to be easier for her to switch to the breast... Only have one teat so will have to get some more but it looks like the habermans are about to be pensioned off - this is a step forward!
I bought Victoria a rather cute swimsuit yesterday 'designed to contain accidents' (the mind boggles!!). I forgot to ask the consultant whether it would be OK for Victoria to join the local hydrotherapy group (she can go from 6 months of age) but bought the pants anyway - they are pink candy-striped and VERY cute. Will take a pic to post on the blog when she goes 'swimming' first. David watches. V. on her tummy on the bed and says that she has a natural 'breast stroke' motion about her legs. he's sure she would be able to swim. I am hoping HE will be the one to take her in the pool when the time comes for it.

Thursday, November 24, 2005


the Dr doing the echo yesterday (who was the same one who did the echo 5 days before the op) declareed that the repair was 'fantastic'. The consultant said 'it's a splendid repair' . Praise the Lord.
The x-ray showed the lungs were clear, the SATS were 100%, weight 5.05kgs and the echo showed that although the kink is still in the aorta under Victoria's neck, it is not causing any problems. In the longer term it will be watched and could possibly cause hyertension in the future, in which case a balloon will be inserted to stretch it. The pulses in the upper and lower limbs are equal though.
While I was waiting for them to write down how much she weighed I marvelled at how deliciously pink and warm my little daughter is now and my heart is full of Praise.
After the hospital Thomas and I went along to the science museum where he said he felt 'spoilt' because I told him he could decide what he wanted to look at. So he went first to the Spitfire exhibition, then to the flight and finally to the section about boats.
I tried the breastfeeding with a tube stuffed in the corner of the mouth, today - it was a dismal failure. I took out the tube and just fed her the rest of the milk from the playtex nurser - she got on astonishing well with it! I guess that means I could think about selling the haberman feeders (they were fetching a good price on ebay when I looked last...).
Will try again at the next feed - I haven't got all this far through life without developing some tenacity - but I hope I will know when I am 'beaten' on this one...
Timothy is suggesting that I am using this blog as an opportunity to post things which are strictly-speaking, off topic (not to do with Victoria) so I shall try and reform and post non-Victoria stuff to as of today.

Wednesday, November 23, 2005


In about half an hour we are due to leave for the station for the outpatients department of the Brompton. Thomas is coming with me. Norman Wells collected 4 of the other children and those remaining will look after themselves back here.
David thought it would be 'fun' to go back to Rose Ward - that is not an adjective I would select, but thankfully we are going to somewhere different.
Victoria is doing very well - though she had to have Ibuprofen again last evening. I tried breastfeeding again this morning but Victoria really doesn't much care for the idea. I think I shall have to be very determined tommorow and give her all day-time feeds through the tube tucked into the corner of her mouth whilst she is postioned where she OUGHT to be to feed. The more time lapses, the less good the 'chances' are of success in this.
Very thankful for the small portable pump which I will take along today (and hope there will be somewhere private I can use it...) but not being able to breastfeed properly is a big extra burden when going out for the day.
Will post again this evening re the results of the appt with the cardiologist (which is about 11am). Hope to take Thomas to the science museum afterwards and visit the flight section - he just bought a model glider and remote-control.

Friday, November 18, 2005


Lucy has been home since Wednesday afternoon - the first time Victoria was held by Lucy she made a close study of her face and then burst out into a grin.

Of course I made a mistake about the date for the Victoria evening - it is Saturday the 3rd (not hte 2nd, which is, you will have realised, a Friday.).

I hope there will be opportunity for people to pray - since it is prayer and Victoria which connects us all!

Philip has been working hard and is looking very tired (or was last evening). On Wednesday, apart from going out at lunchtime to buy Lucy a bike for her birthday, he had a trying day - he got his finger crushed when moving a metal beam. I bandaged it up amidst protestations that it wasn't bad at all and really I needn't worry....

Timothy mentioned yesterday that the tax tutor stated that in all her years of teaching tax to accountants she had not found anyone who was such an 'astute defender of tax-payers rights'!!! He found the day very stimulating though the more he finds out about tax, the more he feels the injustice of the situation - it makes him think of emigrating!

Yesterday morning Victoria was willing to breastfeed - she needs more suction, but we hope to cultivate that by making her work hard at the haberman (by turning it to medium or slow flow). This morning again Victoria was willing to breastfeed, which was particularly good because I had a blockage which she cleared up.

It is so delightful to pick out a lovely warm Victoria in the middle of the night!

The other thing which is a particular cause for joyfulness is the new electric blanket I bought yesterday - it has a fleecy cover and makes the bed warm in only 10 minutes - that meant that when I got out to feed victoria I put the electric blanket on and got back into a deliciously warm bed - I truly was praising the Lord for this great pleasure!!

victoria managed all yesterday without calprofen and hopefully will continue not to need, though, of course, we keep an eye on her comfort level.

Monday, November 14, 2005

Victoria evening

On Saturday the 2nd of December anyone local enough and available to come is invited to Otterhill Farm at 7pm. I thought it would be rather fun for some of you dear folk to meet up and I would particularly love to have a photo of some of you - to show Victoria in the future. The boys are constantly taking digital pics of Victoria and I hope we will have them all written to a CD to play on the TV (we could copy them for anyone interested in having one!).
Apart from cooing over lovely pics of Victoria, and chatting with others about the wonders the Lord has worked, we shall have buffet-type food.
Please email me if you would like to come (or, if you can't, post a comment to let me know).

I am trying to get some kind of bedtime routine worked out so that I can get as much sleep as poss. I plan to feed V. at 6pm and then 8pm (so she is well filled!) then once more before 6am. It worked well last night but she has a nasty habit of waking up at 3-hourly intervals. Not that I mind, it is so lovely to have a baby who ASKS to be fed!
I am Praising the Lord that she is doing so well (the pain seems to be diminishing, though she really doesn't like being laid on her front on my lap while I fasten the buttons on the back of her dress) and is lovely and cosy when I get her out of bed. I reckon she is getting about 700mls per 24hrs but will keep a tally today, just to make sure.

This is quite a momentous week here, Lucy is to be 21 tomorrow (she has a few days off from Wednesday, so we have the joy of having her home for a time), Philip has started work today and has driven Timothy in to Reading (where T has the second week of his private accounancy tuition in preparation for yet more exams).

Thursday, November 10, 2005

GP visit

I took Victoria to the GP this mng. He said that the pain might reasonably be expected to continue for another 4 or 5 weeks. He gave us a prescription for ibuprofen - that will save me a bit of money at least - but didn't like the idea of giving codeine.

Wednesday, November 09, 2005


Victoria has broken her previous record. Despite being a mere 2 weeks post op (on which day she started out at 4.6kgs) she now weighs an amazing 4.78 kgs!!! She's not smiling about it because she's in pain again this afternoon, sadly. Yesterday she drank (and praise the Lord, I supplied!) almost 700ml in 24 hours.
The physio was very impressed with the progress in Victoria's development - she is very good at holding her head up now.

In the dumps

Victoria was downcast yesterday - she didn't want to play with toys or interact with anyone. She wasn't crying out with pain so much but maybe it was just going on at a lower level because she was definitely not happy. Overnight she slept until 12 midnight, fed well, then was awake, complaining mildly, until 4am when she fed well again - then went to sleep. This morning she is a little more interactive but not 100% yet. The health visitor is coming to weigh her and the physio is coming - I think she will see a big improvement in the way Victoria holds herself compared to when she came last time.
Tomorrow I have an appt to see the GP - I should like him to check her over and he may have some suggestions about pain - I haven't bothered with the paracetemol for a few days because it seemed to have no effect at all.

Monday, November 07, 2005

last rays of summer

Enjoying what seems like the final fling of summer (having missed out the vast majority of it one way and another...) . I begin to sense my horizon widening and getting a little further off (ie I can see further than 'the next feed') which is quite exciting. Victoria continues to feed well and seemed not to be in pain today until this afternoon. Last night she woke me up every 3 hours to ask for milk - I obliged of course!
The antibiotics are now dispensed with and all we have are the diuretics - which she has to continue with until we see Dr Shinebourne next. I have started the nutrivene today.
The boys who have digital cameras have to keep being brought to order because they would spend all day clicking and capturing some of the many varied faces our little bundle of wonder produces. She is enjoying playing with the koosh ball which is suspened (by an elastic band) from the 'baby-gym' (specially adapted with bits of plastic waste-pipe - thanks to Daddy) over her special seat. Of course, she prefers to be having cuddles but we are attempting to accomplish some schoolwork....
I have arranged for the health visitor to come on Wednesday for a weighing.

Saturday, November 05, 2005

re the pics

Thanks Phililp for putting those pics on. We have others but the top one was taken on sunday and the bottom was taken on Thursday - the day after we got home.
Victoria is still in pain from time to time and since the Paracetemol seems to be of no use I just use ibuprofen when it is really necessary (like bed-time...). Victoria is doing well and when we went to Costco this morning (Philip drove me in his own car - he passed his test on Tuesday, hooray!) she had 70mls then an hour later she had another 90mls! I am still astonished at how efficiently she glugs it down. It makes me realise how bad things were before!

A friend who visited me in hospital said that people often said to her (when her son had to have heart surgery) 'don't you ask yourself "why me?" ' - to which she wisely replied 'I more often ask myself "why NOT me"' - there is plenty of suffering in the world and why should we expect to be immune to it? Surely there is great blessing to be had if we make good use of times when (to use a phrase I have used a lot in the past 4 months) we feel like we are 'going through the mangle'. When we are squeezed dry of all our own ability to be 'in control' we are more likely to discover the truth that we are in the SAFE hand of an Almighty and loving Heavenly Father who truly does have everything under control.

Friday, November 04, 2005

Here are two pictures, one showing the scar of the opperation and the other showing a very happy little girl, attentive and lively!
(Posted by Philip)


Now the stress is off a bit, I had an idea pop into my head last night - wouldn't it be great to get together some of the local prayer-warriors for an evening with Victoria? - any suggestions?

Out of the woods..... (nearly)

Heartily thankful for being home again and enjoying a bonus bit of sunshine. Victoria has slept well since we got back and been awake more during the day than she used to be. Those warm arms and legs she enjoyed briefly in hospital have not yet returned but the dampness is gone. I was told that although her heart is fixed and therefore things will not deteriorate futher, her body needs to correct the heart failure she was expereincing before the op - hence the coldness. She has had some bouts of severe pain and yesterday David cycled to the chemist to buy some calpol (I never have the stuff in the house...) and after two doses at 4-hourly intervals I phoned the health visitor since it didn't really seem to be hitting the spot and she was officially only allowed a further two doses before 9am the next day. From about 4pm onwards Victoria was crying in pain most of the time (in spite of another dose of calpol) so I phoned the Brompton hospital at 9pm and took Victoria to A&E to be checked over. The plan now is that every three hours she will have either paracetemol or ibuprofen - the ibuprofen seems to hit the spot a bit more accurately anyway - and then hopefully after a couple of days of that things should be OK again.
I still daren't bath her incase I jar her and cause her pain, so she is getting a bit grotty - maybe I shall have to settle for washing her while she is lying on a towel instead....

The little children are very happy to have us home again and were a bit concerned about the suggestion that we will have to go back again in 3 weeks (they know nothing of last night's little jaunt!) but I assured them it will only be for a day.

Karl and Marlena left yesterday morning to spend a night in a hotel before going on a ferry today, back to Holland. It is lovely to see everywhere looking so clean - there were places which I hadn't dusted for a good long time which are now nice and clear.

Wednesday, November 02, 2005


Today we had the same Dr. visit as yesterday - he happened to come round in the short time it took me to nip upstairs and get the 11am feed. the upshot was that he would come back and get the blood. True to his word he did. He said that because hands are nerve-rich areas it was better to get the necessary stuff from a vein in her head - I went off to make myself a cup of hot chocolate and by the time I came back it was all done, without distress to Victoria. Praise the Lord! For all those of you (like me) who need such answers to prayer to encourage you to pray further, be encouraged.
I heard that the ward onto which Victoria would have gone, if she had not had 'C diff' infection, now has sickness and diareah (never could spell that word...) - so the isolation has saved Victoria from that too. The Lord truly is good to all and His tender mercies are over all His works.
So, we are all set to come out. if the potassium level is still low then she will just have supplements.
when weighed this morning she was 4.72 - she has never been that heavy - and that after a week during which half the time she was not allowed any food at all!
i am full of thankfulness to the Lord for His fatherly care over my little charge and feel well and truly blessed.
Updates will continue on this blog as and when. And thanks for your prayers! God is Amazing!

trials and tribulations

Yesterday was a traumatic (and busy) day and therefore I had neither the time nor the emotional energy to update – sorry.
All went fairly well until the Dr. came round (feeding was going brilliantly!) and he suggested that we could go home next day. Because the feeding tube was still in though and because the nurse who was on during the night didn’t even attempt to feed Victoria other than through the tube I wasn’t too happy about going home until we had a night where we could see that she WOULD feed OK at night - bear in mind that she only started bottle feeds on Friday (I think – but you will have to excuse me if I got that wrong, my brain is having problems). He mentioned also that Victoria has put on weight. This is incredible – she was starved for 3 days and then given ‘token’ feeds (of 4.5mls an hour for 4 out of 5 hours) then on to 45 mls and now only on 72 mls. The ng tube, oxygen tubes, stitches and neckline could all come out. BUT her potassium levels are very low (caused by the diuretics) and needed to be checked again (and perhaps measures taken to address the problem). So it simply meant that blood had to be taken out of the neck line before it was removed. Then the nurses (2 between 4 patients) disappeared. One came to take blood at about quarter to two and inexplicably poured it from one bottle to another, thereby contaminating it. She ‘would be back in a minute’ three times and at 3pm I reported at the nurses desk that the neck line was causing Victoria pain and was out about an inch because the sticky tape was off. (this was after another nurse had come to remove the tubing and sticky tape from Victoria’s face and had caught the tape related to the neckline….). anyway, the inevitable happened, the nurse came back to take more blood, started out by flushing the line but it was no longer in the vein – so that was the end of that. Then it was going to be necessary for a Dr to get blood out of Victoria from somewhere else. When the Dr. eventually came (about 4pm) I told her I hoped she was good at this because Victoria was partic. Difficult to get blood from. She was sure she WAS good at it. She had been on ICU until last week…. Anyway what with Victoria just being difficult to get blood from and the fact that she had had a very traumatic day, all attempts were unsuccessful. Please pray that there will be a dr. on today who will be able to get blood swiftly and efficiently.
David went down there and came back up to get a clean babygro and said that Victoria is very happy and smiling at her lovely nurse. this morning.
+ Raising Down Syndrome Awareness -