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

Saturday, February 25, 2006

pretty girl

She was looking up at Samuel when I clicked.

Sunday, February 19, 2006

Curly girly

this is the result of a quaternity of little pieces of hair twisted, curled and clipped until dry - then undone - I think it looks quite cute!

Friday, February 17, 2006


Actually, there were two errors. One was that I mis-ascribed Timothy's motives - he really wanted you folks to be able to understand the situation which he thought you might be capable of with the aid of a diagram.
The other error is that the blood in the aorta is not blue (de-oxygenated) but red (oxygenated) because this is an artery, not a vein.
But WELL DONE Timothy, all the same.

a stroke of genius

now Timothy is a very busy man you know. However, in the interests of further understanding his new computer and its programs, he has been working on an illustration to help anyone visiting here to understand a bit more of Victoria's problem.

About Thursday

Just before we went home I took a picture....

The trip to London was straightforward (no trains cancelled or delayed) and we arrived perfectly on time. The boys were told they had to go to the 'schoolroom' so instead they went down to the foyer. After a couple of hours they came back up to the day-ward and they weren't chased off again (well, after all we were the only people in the 6-bed day-ward by that time so it was hard to put a case for overcrowding!
During those couple of hours Victoria finished her breakfast, was quizzed by one doctor who was asking ME why we were there and why these proceedures were required.... The four-limb blood pressure was a bit of a joke - the cuff was too big and Victoria wouldn't keep still while they did each limb in turn. The readings were widely varied. I thought they would have to have all four at once to find out acurately what was going on. however. Victoria, having missed her morning sleep, was very grumpy so I pleaded for a little space so that she could go to sleep. She did. Five minutes later we were called for the echo - and that was just as I was about to express more milk for her. Still, I had a bottle with 2 and half ounces in and explained to the doctor (not the usual one who seems to get very irritated with babies who won't lie still and be quiet! - though he does a very good job) that having her aorta looked at isn't Victoria's favourite pastime. he was kind enough to suggest that we got this over with first. On first look he said that there was no problem because all that he could see was OK. What happens (unlike with most people) is that the aorta tapers from 7 to 4 (don't know the unit of measurement - maybe mm's) and the blood was going nicely there. Then the cardiologist has said that the aorta must also be checked in her abdomen and there it was also 4 BUT the rate of flow was sluggish. he went back and was able to see just beyond the kink where it went suddenly from 4 to 2 and then back to 4. This is described as a mild problem. Surgery won't be necessary. The balloon technique - whereby something is fed along the aorta and a balloon is inflated at the offending spot, is the first step in correcting the problem. While we were on our way home the Dr. phoned and left a message that it won't be necessary to do anything for 3 months. The Dr. also said that the vessels are growing in proportion with Victoria - at first they were VERY small. It seems to be the case that all the tubes throughout Victoria are small (ears, digestive system, respiratory, tear duct drainage)which is common in down syndrome.

Wednesday, February 15, 2006

big day

Tommorow is the big day - we go back to the Brompton for the checks. Thomas and Samuel are coming to keep us company. As for me, I'm looking forward to being back home again. My neck and back are giving me grief so carrying Victoria is going to be troublesome to start with - please pray that the echo will be done swiftly (perhaps with Victoria drinking her milk at the same time) and that everythign they need to see, they will see. It is on the basis of the measurements they will take tommorow that they will plan a course of action, should it be necessary.
I re-curled Victoria's hair today, specially. This time she has a trinity of curls - looks rather cute.

Monday, February 13, 2006

laughing during latin

This morning while we were working on our Latin rectitation Victoria was lying on her tummy on the table (shock, horror!! - standards REALLY are slipping round here!) and Samuel was periodically blowing at her and guess what happened? She LAUGHED! It was very endearing - class was temporarily suspended while we all made the most of this moment of jollification. Soon she was too tired and had to go off to bed, so lessons recommenced!

Friday, February 10, 2006

Waiting over

Just had a phone call to say that Victoria is booked in (for the day) on Thursday at the Brompton (this is for the 4-limb blood pressure and the echo on the arch in her aorta).
She weighed in at 6.36kgs today (that is an increase of 120gr over a week). I'm happy about that.
Victoria looks pretty happy too - we've curled her hair. Now I have figured how to do it I shall do it again, only better, then take a pic to post (it is a bit of a mess at the moment!). The boys still think she is the cutest baby in the world (so does Joanna). Joanna said that Victoria was just like one of her dollies only better because she moves!

Tuesday, February 07, 2006

look at me swimming....

Actually, I didn't take the camera this time.
We just got back from Victoria's second hydro session. Part way through she decided that would do something other than just be propelled round the pool in a sitting position and quite enjoyed splashing Thomas (who took her in). Last time (in spite of the fact that she didn't actually DO anything with her muscles) she conked out on our return home and slept solidly till the next morning - apart from feeding. so we could be in for a quiet evening.
Thomas gets to go to his first club meeting with the Thames Valley Silent flyers. Thomas will be the youngest by about 60 years. They plan to have a competition to see who can use the supplied balsa wood to create the most efficient glider and the winner is the one whose glider goes furthest. I am warned that some of them are FIERCELY competitive and look forward to the report tommorow (I'll be gone to bed before he returns).

Saturday, February 04, 2006

hooray hooray

We are looking forward to having Lucy home today - until Tuesday.
I guess if I were poetical I might have written this better - perhaps a haiku - will have to think about that next time I am sitting in my little corner with my brain free.
I had thought of taking a picture of Philip's car and posting it - also of the two Ikea bags full of socks - they were all odd but now there is one bag paired and one more bag (all the tricky ones which have not been in the same wash-load and therefore need sorting by more mature people in the light of day...) still to be done.
Richard (who paired 70 pairs) suggested that he would like to invent a machine into which one could tip all the odd socks and they get sorted and paired. This after recently being in Sainsburies where they have a machine to tip all your loose change into so it gets sorted, counted and (presumably) exchanged for notes.

Friday, February 03, 2006


Today Victoria weighs 6.22kgs - that's 13lb 11 and a half ounces in old money. she can sit up for 5 seconds before keeling over.
Philip is looking for a transit van having found that he can get better insurance for only slightly more money compared to the peugot. If only he can track one down...

Wednesday, February 01, 2006


Philip phoned at 5.15pm to tell me that he had just driven into the back of another car. He has written off his own car and damaged 2 or 3 others. Ron has gone with the landrover and trailer to collect the car and Philip. Obviously if he hasn't a car he wont' be able to drive into Reading everyday for work. This was always a potential problem - Reading is a long way to drive to and from and do a hard day's work in the middle. Philip says he doesn't know how it happened - a brief period of inattention meant he didn't have time to stop when he noticed the car in front had.
Of course he is shaken. No one was hurt, mercifully. His plans are uncertain. I am Praising the Lord that Philip is safe but wonder whether he is just going to spend his life skipping from one accident to another (rather like my brother...)
You will have noticed this is nothing to do with Victoria but I guess most people who are interested in finding out what is going on in our house will be reading this.
Please pray.

technical detail

There maybe some reading this who understands the following excerpt from the letter from the cardiologist..
"She has a normal first sound, normally split second sound with a neomal pulmonary component witha soft buzzing ejection systolic murmur lower left sternal edge which could have been innnocent." ! (can I hear someone say 'ah, ha.....'
It is proposed that Victoria should be admitted as a day patient to have four-limb blood pressures and another echo. The brachial pulses are stronger than the femoral pulses. Don't know if her feet look a bit white these days or whether it is my imagination - still, the machinery will help to reveal all, hopefully. Don't have a date but hope to get one through soon.

Another cold

Victoria was a bit unsettled last night - a new cough is taking root. She's fairly joyful about it though. I went to bed early yesterday because of a headache and slept for almost 6 hours. I was particularly glad that there were 7oz of milk after the 6 hours. I keep telling myself not to worry about how much milk there is (after all, one never knows how much a normally breastfeeding baby gets) but I suppose I am not really confident that Victoria would let me know if she wasn't getting enough. She is still gaining weight slowly - but gaining weight all the same. I still would prefer not to wean her until a year but am not sure that pumping 7 times a day for the next 20 weeks will be possible - however, that it is the Lord's hands and I will do it if I can. My research has convinced me that when she DOES have other milk it will be goat milk and that at least until she is 2 she won't have gluten.
+ Raising Down Syndrome Awareness -