Victoria

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

Tuesday, December 27, 2005

Christmas


Here's one of the pics of Victoria's first Christmas - before the presents (which we settled should be opened on Monday, after a great deal of deliberation....). Victoria has, in spite of a total absence of roast potatoes and Christmas pudding (for her) continued to gain weight. As for me, I don't think I shall go on the scales until half way through January (at the earliest!).

Saturday, December 24, 2005

Christmas Eve

I told Victoria this morning that there were many people praying that she would breastfeed - I even told her the names of 5 of them - but she was unmoved. She has strength of character and resolve - very commendable I am sure. We remain thankful for the pump, playtex nursers and the all-important milk supply. Please pray that the slight decline in milk supply is not the beginning of a trend. I have made a conscious effort to drink more water and have started to take the 'more milk plus' capsules I have left from the early days.
Victoria remains well. Having read that part of the 'package' for babies with AVSD is 'repeated chest infections' I am heartily thankful that Victoria has not had a single one. We have an appointment to see the consultant on the 17th of Jan and I hope I shall get an opportunity to point out that her good health is probably largely due to the fact that (unlike a great many downs heart babies) Victoria was able to have breastmilk instead of 'high-energy' (junk!) feeds.
All the other children had only breastmilk until a year and then I began to wean them, it would be good if Victoria could have this advantage especially since her immune system is prob. weaker than her siblings - but whether I can go on expressing milk 7 times a day for the next 6 months is more than I like to think about.

Friday, December 23, 2005

sleeping

Last night I fed Victoria at 7pm then put her to bed. Next she woke at 11pm, fed and slept - I didn't bother to set my alarm clock since I thought she would wake me when she was hungry. She next woke at 5.30am!!! That meant I got 6 hours undisturbed repose. Sad to say, I was still tired, but don't think I wasn't thankful! The John Marshall MP3's on prayer continue to sustain my soul during the wee small hours, there is so much to learn from them that I think when I get to the end, I shall begin again.

Lucy is sure that Victoria has an agenda for each of the people who hold her or talk to her during the course of the day. For her, Lucy thinks the agenda is only complaining and depositing un-needed milk....
Philip has 'finished work' for the holidays and is, instead, working over at Rodwell so I don't see any more of him than when he is in Reading. David hopes he will be able to do a bit more riding over the coming couple of weeks - his lessons have been restricted to Saturdays - and not every saturday at that.
The three youngest are having a fit of creativity which is rather gratifying but, alas, messy.

Tuesday, December 20, 2005

nice and clean



Here's a picture of Victoria being washed by Lucy. This morning Victoria weighed 5.64kgs - which is a gain of 160gr on last week. She is 23 weeks old today. This morning I insisted that she should have a go at breastfeeding - she looked a bit put out at the site of the teat from the bottle so I removed it and offered the 'source' - she had a little go interspersed with vague complaining noises (but not tears).
Victoria was very thankful for Lucy's ministry and is just telling us so!

Saturday, December 17, 2005

Pretty girl


when I dress Victoria in one of the outfits which was kindly sent to her, I think about that person / family. The children say 'that's pretty, who bought her that?' - so I tell them and then I remind Victoria that these people have been praying for her.
Today I am posting a picture of Victoria (whom Lucy declares is getting very heavy!)) wearing her pretty pink pinifore which the Doye family sent. She has only just started wearing this (it is 3-6months size) and we are also rejoicing that she has, at long last got too big for newborn size nappies.

Friday, December 16, 2005

hospital again

Took Lucy to A and E - knee was x-rayed and not broken.
Victoria has been extra grumpy because of being out of routine (not that she has a very strict one) so she has had an early night in the hope that she can break the new trend of looking at Lucy and then sticking out her bottom lip as a prelude to shedding tears inconsolably...

Thursday, December 15, 2005

Lucy

We're going to collect Lucy home today, for the Christmas break. I phoned her yesterday evening after Timothy said (ominously) "I think Lucy wants you to phone her" - and found that in the morning she had been knocked off her bike by a lorry while on her way to University. She told me that as she sat on the pavement feeling dazed and sick, she refused the first offer of help which came by. The second and third offers were resisted less firmly however and a kind landscaper took her and her bike back home. She has bashed her knee (she tells me this morning that she can move it - she didn't tell me yesterday that she COULDN'T) and a kind Lucy on the course is collecting ours to take her for her classes today. Lucy told me she has also scraped her chin and hand. Mercifully she had a cycle helmet on which saved her head from being bashed - the helmet was bashed.
victoria is doing very nicely and enjoyed meeting people at the Hounslow Christmas concert yesterday where the VDB's offered a limited selection of musical and poetical items. Victoria is very much looking forward to seeing Lucy again, of course.

Tuesday, December 13, 2005

about that transfer....

Many of you may be wondering whatever happened to Lucy's transfer... Well, she continues to enjoy the work and the study in leicester but is frustrated about the non-tutoring she is getting from her appointed 'tutor'. Could be that things would be worse in Guildford, or not... Anyway, the health visitor (whom Lucy put down as a referee in on her form) has been contacted and Lucy told me some time ago that her tutors in Leicester have been contacted. All that is wanted is a 'clinical placement'. It appears that it could be in any one of 5 areas - only one of them would be really useful to Lucy - St. Peter's. If it should be the Lord's will for Lucy to be moved to that hospital with her lectures in Guildford, we would be very grateful, meanwhile we don't 'hold our breath' as Lucy put it.

Weight update


Today Victoria weighs 5.48kgs - that means that since her op she has continued on the same line on the chart. she's happy, continues not to object to her nutrivene which I syringe in while she is drinking her milk. I made her a 'tactile textiles' toy - just squares of various fabrics attatched to tape for her to have rubbed on her cheek and to test out with her mouth. She seems to get very excited about them.
I hope to upload a picture of Victoria on the scales now... That weight excluded the weight of the nappy and the sheet - I set it to zero with those things before I put Victoria on (just so as you know it is all honest and above-board!).

Friday, December 09, 2005

Thanks

Someone's been praying for me, I know. I was really very discouraged at the start of this week - the prospect of life, with all its very many challenges, stretching out before me was more than I could cope with at the start of the week. At this point I am confident that I have to do research and see what I can do to help Victoria to develop and as I have this information and all my wonderful little helpers (some of them doing no more than offering Victoria a 'moving target' to help strengthen her eye muscles and tracking abilities!) I am sure that I will be given all the needful in assisting Victoria to become all the Lord means her to be in this life.
Yesterday I had a delightful card from Sally's mum (Sally was born in 1974, in Thornton-le-Dale, Yorkshire, with down syndrome - she died at the age of 24.) who speaks of her eagreness to see her Sally again, in Glory.

Thursday, December 08, 2005

little encouragement


when I thought of this title it reminded me of an occassion - probably 15 years ago now - when I went into the co-op in Addlestone and bought a packet of Asparagus seeds. I hurriedly (that's how I do everything normally....) read the back it said (I thought) 'needs little patience' - "just the thing for me" I said to myself. When I got home I read it again and was dismayed to read - more leisurely - 'needs a little patience'!!!

This morning I had a little encouragement... (still trying to learn patience after all these years.....). Viv suggested, on Saturday evenign, that I might use the playtex latex teat as a nipple-shield. I had a go this morning and it seemed to work well , at least the the milk was letting down quickly. Victoria seems to take after her mother and had a difficulty with sustaining motivation once the flow slowed down a bit.... Well, I daresay I shall try again!

when Victoria was weighed yesterday she was 5.42kgs - that was 6 weeks post op. On the day of her op she was 4.6kgs - so that is a great encouragment. She has now grown out of newborn size nappies at last.

Next we are taking Joanna out to dinner (she insists on taking Victoria along too...) for her seventh birthday {you're one year out Olive!!!} will try and get a pic and upload it.

Tuesday, December 06, 2005

the party


For all those who missed it, here's a picture of some of the folks who came on Saturday night. From left to right there are Simon (left holding the baby), Mike (Viv's longsuffering husband!) Jackie (she who had the little ones on Wednesday several times), Viv (the wonderful midwife and dear friend) Simon (obscuring someone but I can't remember whom...), Jan (wife of Simon - they came and encouraged me a couple of times in hospital - thanks so much, you're very precious), Kerry (I don't know how you managed to supply such wonderful dinners with so much 'on your plate' already - thank you!), Joanna - she was having a late night and enjoyed herself no end , then you see the back of Rosalie Simpson's head.
Thank you to all of those who have prayed, and are continuing to pray for Victoria and the rest of us. I am sure I would have completely gone over the edge by now if it weren't for you dear folks.
I find that there is a disadvantage in getting to the point where I can look beyond the next feed - I begin to realise that I can't bear tommorow's burdens today and need to learn to hand them over. I have been out of commission for a couple of days with migraine (I guess going to bed at 12.20am on Sunday didn't really help (!!) but generally I am struggling. I keep trying to feed Victoria but am not getting distressed about it. I figured that if people are praying about this (thanks Jackie!) then I ought at least 'take the horse to water'.
Praise the Lord that in this past week Victoria has gained 220gr. (that's something over 8oz).

Photo with a difference.


Here's a photo of the sketch which my dear old friend Sarah Matthess (currently living in NI) made of a photo - actually it is one of our all-time favourites of Victoria taken in the pre-op days. All the boys thought it was great and EXACTLY Victoria. Of course she is a girl of many faces and we could have our whole room filled with photos of her many faces, but this is the best so far. I shall get it framed.
Not sure if Sarah is taking commissions ?!!!!
Thanks again Sarah.

Thursday, December 01, 2005

Physio

This morning we had a visit from the physiotherapist.  She will be coming in once a fortnight from now on.  The last time she came she said that the next step would be to get Victoria rolling over.  Therefore I have been putting her much more on her tummy on the mat rather than in the special chair.  She actually made some attempts at rolling from front to back and I just gave her a little help.  The physio had her on her side and applauded Victoria when she went right on to her back.  From her back she was also able to get back to her side and from there to her front.   I always remember being amused and babies first turning over.  Their bodies seem to develop the ability to do the right things with their muscles to have them go from front to back and the first time they do it they have a look of shock and disbelief.   Not so with Victoria – she is very laid back and takes all these things in her stride.
Anyway, after a half hour of that she was about ready for a sleep!  She is now developing another cold.  Richard has had one for over  a week which, on Sunday , had him coughing very badly.   I hope that Victoria’s cold doesn’t go to her chest though she must be better able to cope with that now than when she was having to do so much breathing.
Weighed on Wednesday she remained 5.22kg’s – I had hoped she would have gone up a bit more to 5.25 – that would have been an increase of 200gr in a week – neat eh?   In any case the trend is in the right direction and thankfulness is the theme.
 
+ Raising Down Syndrome Awareness -