Victoria

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

Monday, October 31, 2005

Monday afternoon

The events of today include: distress about a neckline which was coming out (because milk had been dribbled over the sticky tape so it had come off a bit) meaning the whole big sticky-tape had to be taken off (pulling some little hairs out with it – ouch!) and another one needing to be put back on. It only needs to stay there until 6pm when the last lot of IV antibiotics are given. Victoria was having the wires pulled out of her chest while I was queuing for my dinner ( I could hear her : - ( ) and what with us (David and I ) having removed the discs of sticky stuff to which an ecg monitor was connected yesterday, she was almost back to her normal self. Then three more sticky pads (little ones this time) were attatched to her chest, with wires. The information from these is displayed on the monitor in the room we moved into before lunch. The nurse said it will be easier for them to keep an eye onher at night that way. Also, she needed monitoring because the oxygen was to be switched off (which it now has) and she has been doing very well with SATS of 99 – 100% (this compares to 85% before the op). the Doctor who came round today was Dr Magee (I almost told him that we knew his brother, but was too scared!) and he said that the sweatiness – which has led to 3 fresh sheets being called for this morning – was not a cause for concern. Another echo is due to be performed today – just to make sure that the removal of the pacing wires has not caused any damage inside. So, I think we are on the home straight. As the Dr’s were leaving the ‘C. Diff.’ infection was mentioned and a ‘7-10 isolation’ was mentioned – that could mean that we will stay in splendid isolation all the time. We see this as a cause for thankfulness because it makes visiting times less of a disruption to neighbours. I don’t know if this will mean that we won’t be able to come home until Victoria has the all-clear – if it does that means we won’t be home until Sunday. I haven’t asked about going home since there are obviously still quite a few steps to take on the road to recovery. While waiting in the dinner queue today I spoke to a mother of a little girl with Downs, who is now six, she was a sweet little thing and was interested in playing and finding out what was wrong with another girl in the queue.

isolation continued

victoria fed well at 8am. I noticed that her neck line was out a bit so that was stuck back on then David and i took off some of the things which had been stuck on victoria's body but there are others which are going to cause her some pain so we took only one of the 5. it is hoped that Victoria's pacing wires will be taken out today and then she will have another echo to make sure that no bleeding has occurred as a result.
David and I plan to spend the day with Victoria and have a DVD to watch.
this morning there was the faintest glimmer of a smile on her face when I picked her up and David said she almost smiled at him. She certainly is not looking as downcast as she was a couple of days ago - thank you for praying!

splendid isolation

Victoria continues to be in her own room. I fed her at 8pm last night and as i left it was hoped that the Dr was still going to come and do an ecg on account of her heart rate being so low (80) - nothing scary but low for a baby of her age. I left the next feed in the fridge and went down again at 2am to feed but she was not very hungry so I asked the nurse to put the rest of it down the tube. I left the 5am feed in the fridge and came back to bed again and only woke up at 7.15am! I have David staying with me so we can minimise the time when victoria is left entirely on her own . We are going down now to give her her 8am feed.

Sunday, October 30, 2005

again on Sunday

I just went down to give Victoria her 8am feed. She took it very well (69mls in 20 mins) all the time we were having a little chat and I was singing to her. She is looking much happier today and made one or two attempts at interrupting my monologue. I think David will help to lift her spirits - he always has in the past.
Today we have the lovely nurse we had on Wednesday and Thursday nights - i am sure it is easier for victoria to have a familiar face again.
On another subject (which might be of interest to some, though not all!!!) : I finally found out about donating the milk which victoria didn't drink and which is in the freezer. They accept it at Queen Charlottes (just up the road from here) after a blood test has shown the donor has no nasty diseases and after a chat with the lady responsible has confirmed that i have a healthy diet etc. Even if the blood test is not done until I am back home I can leave the milk in the fridge here and they will collect it later. I am very excited about this because when Victoria was in the NICU at St Peter's right at the start, there was a tiny wee premature baby just opposite her for whom the nurse was searching for 'just another half a ml' of ebm to make up a 5ml feed for her charge. Praise the Lord that Victoria can have good milk all the time because production is good(thanks so much again Julie!) and it will be an additional joy to know that some other little baby can have easily-digestable quality milk in his or her little tummy due to the surplus.

Sunday morning

I went down to do the 3am feed and was able to leave enough for the 6am feed. The only trouble with that, of course, that it then became a 5am feed. When I came back to my room I stood wondering whether I ought to change my clock (I was very confused - what time would I next be expressing milk?!) so figured I would continue to work on old time until it was really morning. So now I have worked out (and it really made my brain hurt!) that the next feed is at 8am - that means I can't go to the church service at the C of E just over the road, sadly.
so, 3-hourly feeds will continue with 69mls each time until the Dr's round. After I had fed Victoria at 3am I made the mistake of leaving her left arm free and she pulled at the oxygen tube and also caught hold of the ng tube. This brought the end of it far enough up for her to cause herself to be sick - though I am assured it was not much.
I went down there 10 mins ago and she was asleep and looking comfy. I'm now looking forward to my next nice warm cuddle with my little precious. The Lord is so very good I can't ever thank Him enough for this transformation in my poppet.

Saturday, October 29, 2005

Live update Saturday night

Today Timothy has been to visit again and brought his laptop with him again.
Overnight Victoria had a delightful Australian nurse caring for her. She urged me to sleep for as long as I could and leave her to feed at 12 midnight – which I was very thankful to be able to do. I got down for the 3am feed and left the milk for the 6am feed (in case I didn’t get down there in time). These were 45ml feeds and she was taking them very well from the haberman feeder. V seems to have increased sucking power and after the first couple of attempts, when Victoria’s tongue didn’t quite know how to stay just in the middle under the teat, she seems to have remembered the technique.
I went down to see Victoria at 20 past 6 and when I went in the room I guess I was still not awake because I was looking around for the milk and couldn’t remember whether I had left it in the fridge – still, I guess these nurses are used to mothers behaving strangely and she was very understanding.
I’m getting so that as I leave my room I have list of things to drop off and collect at various places and when I get here I have a time-limit to perform any number of tasks. As for the lifts – when I have leisure I might explain more about the fun involved in using them!
The nurse we have had for most of the day was a man. Part way through the day (after Timothy had been and gone) a bay became available on rose ward so Victoria got a ride down there. There will be one nurse between Victoria and the baby opposite (who was our neighbour a couple of days ago). I plan to go down for the 9pm feed, leave the 12am feed in the fridge and go down again at 3am – maybe I will leave the 6am feed in the fridge at that point so that I don’t need to set my alarm clock. It takes me ages (like over an hour) to get back to sleep again once I have gone down to the ward and re-evaluated the situation so I shan’t mind if I don’t wake until 7am. I’ll still have to get up to use the pump but not make the trek downstairs.
This morning Victoria was obviously distressed as the day-staff came on and before I had got down at 8.30am she had been crying a lot and had eventually gone off to sleep. She didn’t feed well at 9am because she was evidently in pain so she got some oral morphine and most of her milk down the tube. This was a 50ml feed and for the rest of the day she was allowed 69mls – she has been drinking very efficiently.
The trip out this afternoon (to Tesco and then to sit by the thames to eat lunch) did me good and this evening I enjoyed a visit from Sue field (thanks so much!!). We find we are in the same room as Ruth was admitted to about 3 weeks ago! One dear lady who was here then, with her daughter, is still here – that’s 5 weeks so far.
So Victoria continues to improve though she is in pain as the painkillers wear off and oral morphine continues to be an option as she needs it, which is a great comfort to me. It is desperately sad to see that dear little face creased with pain, especially because she has cried so little (blood-tests apart) for her whole life. She still isn’t of a mind to smile but doubtless enjoys hearing familiar voices and tomorrow will see plenty of familiar faces, God willing.
We continue to be thankful for the kindness of the staff here and the care they are taking of Victoria. Thanks to your prayers (I am sure) I keep hearing ‘she is doing VERY well’. The wound is healing beautifully and everything is behaving as it should. The only problem is the explosive nappies due to the infection in her gut – passed on via careless hygiene amongst someone on the staff I fear. Even this is a cause for thanks though because we have a private room!
This mornings very SAD eyes are a lot happier this evening and for that we are rejoicing.

Saterday morning the 29th of october

Update on Saturday Morning by Ron.
I tried to update yesterday after our visit to the hospital, but could not get an internet connection.
Tracy has just phoned to say that Victoria will remain in the isolation cubicle where she was put yesterday for a couple more days as she still has an infection, there is another baby on the ward who is similarly infected. The cause is not yet known. Victoria is making progress overall although she is having some morphine because of pain which is causing her some distress. Tracy is in much better spirits now and I left Samuel with her yesterday. Lucy had stayed with her on Thursday night and left yesterday for Leicester. Tracy has been advised that they are most unlikely to be able to leave the hospital before the end of next week, at the earliest.
She has asked that we pray that God will give her an oppertunity to engage in profitable conversation with a Jewish couple whose baby had the same op. as Victoria a couple of days ago. She has greeted them when she sees them and would like to be able to talk to them. she has been able to speak to another couple in the last few days.
We do thank you for your interest, practical concern, and especially your prayers to God for us as a family at this time. God is caring for us and we are very thankful, although the children would be much happier to have Tracy and Victoria at home.
Connections permitting we will keep you informed,
Ron.

Friday, October 28, 2005

Friday morning live from the Brompton

Fortified by bacon butties, I bring you the next installment...

Overnight Victoria had milk through the tube – 30 mls every two hours. She had sorted her breathing out and had a good night until she had to cough – she was in a lot of pain and has spent most of the morning (from 5am until 9am) crying. The good thing was she didn’t need to take any backward steps with her breathing but she did need another infusion of fluid because she had lost too much fluid. It was wonderful yesterday to watch Timothy’s face as he took Victoria’s lovely warm leg in his hand – it has never been warm until now!
The rest of the children (except Richard, who is away in North London and Philip, who is working…) came this morning VERY early. Thomas and David cooked bacon butties in the back of the van for us all. Samuel is now going to stay with me while they all go back – until Sunday when David will stay.
When I sat in the front of the van to eat my breakfast James thought we were all going to go back home again and said ‘oh, BOVER’ when he found that was not the case. The milking machine from home was brought in and I got Victoria’s breakfast in about 5 mins (compared with at least 20 mins on the hosp. machines!) – I look on it as an old friend (thank you SO much Julie!!!).
Lucy has just left to continue her journey to Leicester we had a good laugh while she was here – which was very good for me.
After all the boys has been in to visit Victoria and she was due to be fed, Lucy and I went back in and various tubes were sealed off then the lines in V’s legs were able to be taken out. Being already in pain it seemed it would be best just to get the whole thing over with. Lucy left the room because she finds that any things to do with blood in connection with Victoria are a little beyond her (she has been known to faint!). Victoria cried a great deal and I had to keep telling her that she would soon be better and that without the tubes into her blood vessels she would be much more comfy. She then was too troubled to drink her milk from the bottle so she was getting that into her tube when we left her. I have a little more time with my visitors and then they have to leave and Samuel and I will go out to buy him some new pjs and toothbrush as he wasn’t expecting to stay.
I haven’t been able to read all the messages because I am unsure about the safety of downloading them but perhaps Timothy will bring this again tomorrow and reassure me that I am not running up an astronomical bill on his behalf! I have read the names though and would like to thank you so much for your prayers. I have had my moments when I have felt pretty despairing but the Lord is upholding me through your prayers. As for Victoria, well, she is making good progress and we haven’t heard anything more about infection though the room is still in isolation.

Thursday, October 27, 2005

Live update

Live from the Brompton hospital parents accommodation I am able to update you all on the amazing progress of the day.
This morning was a gloomy affair after a poor night for me. I spent a good deal of it wondering about whether I ought to report the incompetencies (one of which was potentially life-threatening) of the nurse in charge of Victoria yesterday and the day before. During the afternoon of Weds I was getting so upset by the fact that our nurse kept on wandering outside for nothing (she seemed to get bored easily) and that she repeatedly went to attend to other babies in the room without washing her hands and returned to Victoria also without washing her hands. She did once wash them but very briefly and then she didn’t apply the alcoholic gel we are all urged to use.
By the morning I had resolved to speak to the liason lady but found she was on holiday. When we got down to see Victoria she was not looking very good - still on the ventilator but due to come off it soon after 6am. Then she had something called CPAP whereby two tubes are stuck into her nostrils through which air was delivered and Victoria’s lungs were kept inflated (there was a danger that with the medication and the shock to her system of the operation, she would ‘forget’ to inflate them herself). Shortly after we got down there an ‘isolation’ notice was stuck on the door because two of the 4 babies had ‘runny stools’. This was the final straw for me – it upset me to think that for two days this careless nurse had been in charge of Victoria’s life and had been putting others as well as Victoria at risk of infection – and now it looked like there is infection. I asked Ron to speak to the Dr but he found himself face to face with the ward sister and told her. She said that the offending nurse will be watched in future.
Victoria is being given anti biotics as a consequence. Victoria was having difficulties coping once off the ventilator and it was sad to see her struggling with the new form of oxygen delivery – she also sounded like she needed to cough and was distressed. Medications were increased to try and sort things out and in the end she settled down. Ron and I went for a walk (after I had sat in the parent’s waiting room for a long time trying to compose myself and feeling desperately helpless ) and then back to the café at the hospital. Lucy arrived after 11am and Ron left shortly after that. Over the course of the day Victoria has become less puffy, small amounts of milk were delivered through the ng tube directly into her tummy which she has been digesting. This afternoon we made rapid progress when CPAP was taken off and the nurse suggested that if I had any sterile bottles I might not only HOLD Victoria but try and give her 20mls of milk. Although she didn’t use her tongue properly she certainly swallowed it efficiently and then she got a further 10 mils. The plan is that she will have 30mls 3-hourly overnight and I will try and get some sleep. I will be down there for a bottle feed at 8am if all is going well. She is likely to be back on CPAP overnight since she isn’t quite comfy breathing on her own yet. It was very encouraging to have Timothy visit – given his very crammed schedule I am especially blessed that he took the time to visit us and he also brought us some carefully-selected provisions! Lucy is staying with me overnight and will leave to go to Leicester tomorrow – she is working in the afternoon.
So far I have been unable to get Timothy’s computer to go online (of course it DID when he was here….) and will now phone for ‘technical support’ in the hope I can post this before it becomes history…

Email

My Mother should be equipped with a laptop and wireless connector a Thursday pm. Please feel free to email at tracyvdb'at'sermonaudio'dot'com. I am sure that messages of encouragement would be much appreciated.

There no further news on the blood pressure issue as yet though the surgeon has indicated the main issue at present is for Victoria to reduce reliance on the ventilator in order that it can be taken off. They are giving her 4.5mm of milk every hour, four-on-one-off, via the naso-gastric tube and hope to find out how well she is digesting the milk. Further news will be posted as it comes to light (maybe even live from the Brompton!).

Wednesday, October 26, 2005

Wednesday evening

It seems nothing major has developed since the last post, Victoria is still on IV as a cold is evident, though her temperature is back down. There is a concern resulting from her blood pressure having unexpectedly dropped very low on three occasions, we have no further information on that though and will post anything that comes to light.

Please pray particularly for my Mother who needs a lot of strength and is naturally finding the experience very demanding. Please also pray that she would get some sleep. My Father is staying in again tonight but Lucy will be going up tomorrow and staying the night on Thursday, DV. The plans of her going up today were put back due to a cold.

Wednesday afternoon

My mum has just phoned, and the news update as is follows:
The ventilator came off this morning, and Victoria was breathing fine. However, it soon became apparent that Victoria is too active for her own good, and the risk of her knocking various pipes and tubes meant that it was best to increase the sedation, which then meant that she could no longer breath by herself, so she is back on the ventilator.
Victoria's temperature has been high, and so IV antibiotics have been administered; please pray that she doesn't develop an infection as this would obviously be a set back to recovery.
Pray also that Victoria would have thorough carers; there is one nurse in particular who has committed at least two very stupid mistakes, one of which was to do with the ventilator having run out of power last night (that was her fault). I don't like to think what might happen that isn't so obvious as a ventilator switching off and having a load of alarms going - I think prayer is the only way to be sure nothing goes wrong, thankfully God is in control.

Wednesday morning

I was in touch with my parents again this morning, and the update then (at about 7am) is as follows. This is no longer news, as the picture changes so rapidly that I'd need to get an hourly update to be accurate, but you'll have the general idea at least.
An echo done on Victoria last night confirmed that the operation was a success. The only thing now is that her heart is swollen, which is understandable in the circumstances, and should not be a problem. Victoria is still on the ventilator, she is now breathing 20 breaths a minute of her own, and will quite likely come of the ventilator later today. The general anesthetic has worn off now, from what I understand, and she is having IV morphine, instead. This means that she is awake enough to be a fidget, much like her usual self, and has been fiddling with her ng tube and the IV tube in her neck, so scratch mits are being sought in an effort to stop herself from knocking anything that needs to stay put!! She is responsive to sound and touch; and has been grasping my mother's finger when given the opportunity to. Her core temp is back to normal, although her peripheral temperature is not what it is expected to be. My parents saw a doctor last evening, who said that everything is all very good.
My mother (who provided the above information) also points out that she is full of thankfulness - as we all are - for God's goodness and control in all that is happening, and thankful to all those who have taken Victoria's needs to the throne of grace in prayer.

Tuesday, October 25, 2005

Update

Thank you for praying.

A short time ago I was able to get in touch with my parents and find out a bit more information. Victoria went into the operation a bit late due to problems matching the blood (antibodies) but apart from that everything went as it should have and she came out around 4:30pm (onto the intensive care ward).

She is still heavily sedated and is not breathing (a ventilator is being used). Brief panic ensued when the battery ran flat on the ventilator but it seems to have been rectified quickly with no problems. It is expected that when the anaesthetic wears off she will start breathing again.

No blood transfusion seems to have been necessary to date as they were able to put in the blood used in the bypass machine (her own). I think they had not finished putting that back in (unless I misunderstood) and so one assumes that the heart/lung bypass will be used until the drugs wear off sufficiently.

A heart echo has been performed which seems to have confirmed that so far as can be told the heart is working properly.

Please join us in praising the Lord for this amazing answer to prayer, and continue in prayer for Victoria and my parents. My father is coming back in Wednesday DV and we will be going in to visit regularly. My Mother is of course staying with Victoria for the full stay (expected to be 10 days).

Once again, thank you for your prayers and updates will be posted as information becomes available.

Opp complete

Father phoned at 5 oclock and said that the opperation is now compleat and Victoria has now been moved to intensive care.
Philip

Action

My dad phoned about 10 minutes ago, to say the operation is now getting underway.

Brompton

I went in with my parents and Victoria yesterday to the Brompton, where all the preliminary procedures were carried out; more form filling including the consent forms, various anesthetists, surgeons and doctors introduced themselves and said a bit about today, and then Victoria needed more blood taking for crossmatching in case a blood transfusion was necessary. My parents and Victoria were gone for the taking of blood for at least half an hour; this morning, though, it appears to be the case that there was insufficient blood collected, and 3 more samples were taken this morning before a satisfactory quantity was got. This means that the op has been postponed; it was going to be at 0830, and will now be at 1100. The op will be 4-5 hours, if all goes as it usually does, and she'll have 2 anesthetists and 3 surgeons plus others in the room doing I don't know what - sounds like it will be a bit of a crowd around her bed, that's for sure. After the op she'll go into the intensive care bit of the ward she's on at the moment, and stay there for a day or so until she's not having so much IV medication, at which point she won't need monitoring so closely, and will come back to where she is now.
I would ask that you continue to pray, as I'm sure you have been; not only for Victoria, but also for my parents - they are both more than a little out of their depths as far a human understanding and comfort zones go, and I know my mum will be struggling a lot today. Thankyou for your prayers. I will update the blog as soon as my dad next phones, which will be after the op DV if all goes well.

Monday, October 24, 2005

They’ve gone

My parents, Lucy and Victoria left for the Brompton this morning at around 7am – Mrs Barker kindly took them. There is no further news as yet and the operation is not until tomorrow. Please continue to pray though, and further news will be posted as it becomes available.

Sunday, October 23, 2005

watch and pray

We have had a restful day and I think that I have everything I need. The pump which Lucy got is smaller than I thought (this is a new model) and I have adapted it so it can work as a double pump - not just a single as it is intended. I shall need to use a proper hospital pump most of the time in hospital but this will do for nighttimes.
Ron Lucy and Philip arrived at church a little bit late. Lucy went to bed at 4pm with the intention of sleeping until 5am tomorow . She was workign last night.
The plan is that Ron will stay Monday and Tuesday night. All is in place for the little children to go out each day this week and 4 dinners are now being brought in. This should lighten the load for Marlena a bit.
Timothy will be fed information with which he can update this blog so continue to watch this space - and pray.

Saturday, October 22, 2005

distractions

Had a busy day - started off by going to Argos for timothy - got to the appt. with my friendly osteopath (satisfyingly) just as the local clock struck the final two strokes of 10am (I do so dislike being late for appointments). Once back I enjoyed the company of some lovely London friends (and the satisfaction of seeing still MORE of my house cleaned - thank you SO much marlena!!) until about 6.30pm. Then they left, and took a rather excited, and perhaps a little apprehensive, Richard. An invitation for dinner for the rest of the family when they come up to visit next Sunday was extended - so everything seems to be organised as well as can be.
I admit to butterflies when everyone had gone home and I had time to THINK - but will try not to worry.
Victoria continues to not feed well - but she is not generally unhappy and is still looking good.
ron is going to collect Lucy on Sunday morning after she has finished her night shift and she plans to come up with us, with Julie, on Monday and will return h0me on Monday evening by train.
My sore throat is improving (Praise the Lord) and my neck feels much better after my treatment this morning. Now I shall go to bed.

Thursday, October 20, 2005

sleep

Today I didn't get up until alomst 9am. Our 'cavalry' arrived in the shape of Karl and Marlena (plus two little children) mid-morning. We managed to find something for dinner - though I can't just remember what.... After dinner I went back to bed again and slept for a further hour. After that I went to Tesco then had my tea (after some sorting out and tidying up in between times) and now I am ready for bed again.
oh yes, I phoned the hospital - they said that the surgeons and cardiologist discussed Victoria, as planned, and that they don't think it will be necessary to do anythign about her aorta. So now we are all set for a weekend which will include a) sorting out more old clothes b) visiting the osteopath (me) c) enjoying the company of friends who are bringing dinner along on Saturday. d) collecting Lucy from Leicester. That will take us tidily into Monday. Your continued prayers are greatly valued, I still have a very sore throat (and neck too) and am hoping that if I can get extra sleep here and there it will increase my chances of recovering before Monday.
Victoria continues well and is quite vocal - I wonder if she has flash-backs to yestserday's blood-letting session...

Wednesday, October 19, 2005

preview

Yesterday at lunch time we had a telephone conversation with a man from the Brompton who wanted to do another echo. So today I went, with Samuel (and Victoria of course) at 9.30am, on the train to London. We arrived at 11am having first of all gone to the wrong hospital. When we went into the Brompton it was like going into a market with a woman shouting out the price for 5 raffle tickets and stuff (supposedly for sale) all over the foyer. With help from someone who detected we were lost we found Rose ward. The nurse at the desk said 'let me just check if we are expecting you' (I tried not to feel hopeless at that comment but it was rather discouraging after all the the struggle of getting there...). The man who said he would do the echo did. He was very thorough and took special care to make measurements of the kink in Victoria's aorta. It is borderline (any worse and it would have been operated on already) and discussion with the Doctors tommorow will lead to a decision about whether a further look needs to be taken of this area before the operation on the heart can go ahead. While this was going on the man asked me about Victoria's weight-gain and feeding and he said 'good, that is what we like to hear' when I told him it was feeble! There would be something WRONG if her feeding and weight-gain were good! Very strange, but heartening in a funny sort of way.
The Dr. said 'monday is not a catheter day' - though Tuesday IS - but that is when the op is supposed to be happening. I was glad to see a Dr and get an opinion on Victoria's cold - the Dr we saw said she was sure it woudln't be a problem by Monday.
So, in summary, the latest is that having spent all day in London the necessary bloods, x-ray, and ecg information has been gathered the Doctors will discuss the case tommorow and we may have to go back on Friday.

Having travelled by train I am particularly thankful that Julie will be taking us up to the hospital on Monday....

Monday, October 17, 2005

trials

Philip, sadly, failed his test. Four times he was required to check his blindspot and the tester thought he didn't look round far enough - not that he actually drove out in front of anything you understand. He is taking it well. It does mean, however, that I shall be the one driving to collect Lucy on sunday - and I was looking forward to being a passenger....
Today clearing up was instigated - everyone has clothes which he grew out of or which he doesn't wear because they are too tatty. We have collected loads to go to recycling and have had a bonfire of the tatty stuff. Haven' t done mine yet....
Having got that underway I went, with David, to Costco then to deliver a big sack of wood then on to Lidl. After that I had a headache.... Victoria, once again, didn't feed well this mng but when it came to evening she glugged down all those bottles which have been stacking up and by this time (8pm) is about caught up. We both enjoyed our 6-hour gap between feeds last night (though I really didn't enjoy waking up.
we have had two offers of lifts into the hospital next week - which is wonderful - we just have to decide which one to take!
The Lord has shown Himself to be amazing (again) in the provision of a state-of-the-art portable breast-pump. I have been looking on the internet for Medela pumps and almost went ahead and ordered one for a friend to bring back from the USA (but then I got a headache and felt too stressed so just gave up). Last Friday Lucy was at a 'study day' and there was a Medela rep there. They got talking about haberman feeders (seems Lucy was the only one there who had real experience of one) and there was 'prize draw'. One of the other girls on the course (also called Lucy and also a Christian) was awarded the prize - a Medela pump. She has no use for it so Lucy asked if she would sell it to me. She is not willing to sell it but would give it to me - so I shall buy her some Sainsburies vouchers (which will help to feed her family!) and our Lucy will go round and collect the pump to bring back with her on Sunday, DV. Now would I EVER have thought to ask for such a thing as a Medela pump very cheap and before I go to hospital?!!!! I am very glad of this reminder of the Lord's care over us.
Victoria is very lively at the moment and is becoming quite vociferous. She will lick anything which is within reach and is learning how to put her hands to her mouth for the purposes of licking. Her cold continues to subside and I am hopeful that it will be OK for her to go ahead with the op on Tuesday.

Sunday, October 16, 2005

sunday

Having had a lovely week away in the new farmhouse in Taunton (we took the caravan and transferred everything we needed from there to 'camp' in the house) I find there is only one week left before Victoria's op is scheduled. While we were away both she and I developed nasty coughs - we only cough in the mornings now so I am hopeful that Victoria will be 100% by next Monday - though we will 'take a rain check' on Wednesday.
I had thought (because Victoria fed so dreadfully while her cold was at its worst) that V. would have lost weight but, Praise the Lord, she has gained a smidgen. She has been feeding much more enthusiastically today. Last night I took the liberty of leaving her for 6 hours between feeds once - so I could get a good block of sleep - and that worked out well for both of us - she fed well at the end of it.
The new neighbour down at the farm is delightful and there are 5 boys living in the house ranging in age from 22 to 8 - they all seemed pleasant, from what we saw of them. They were rather worried about what kind of neighbours they might end up with and when we were having coffee on the Friday, just before we left, Angie declared that she was sorry we weren't moving in straight away. I didn't meet the man of the house - he runs a bicycle business and works everyday.
Lucy is home next Sunday, for 5 days (how the Lord manages to work out these things which I would never even THINK of asking, amazes me!) - hopefully Philip will drive me up to Leicester in his new car (he takes his test tommorow mng.) to collect her early in the day.
Karl and Marlena arrive from Holland on Thursday - it is a great comfort to me to know that Marlena (who is almost a sister to me - though I haven't seen much of her over the 16 years we have known one another) - will be here to give necessary guidance and cuddles, as well as keeping the family fed, in my absence. There are a couple of meals arranged to be brought in and three days when the little ones are arranged to be taken out for the day. I shall be applying myself to getting my business up to date as well as shopping for necessary groceries (and a cot matress) over the next week.
The three things which I keep saying to myself are
1) 'be strong and very courageous' (as the Lord said to Joshua, repeatedly - reminding me that it didn't come naturally to HIM any more than it does to me!)
2) 'surely He has borne our griefs and carried our sorrows' (as in Isaiah 53 - I need to know the reality of this one.
3) 'faint not nor fear, His arms are near, He changeth not and thou art dear' (as in a hymn which got impressed on my by osmosis through school assemblies).

I daresay there will be more words which the Spirit will bring to my mind in order to keep me from drowning in my fruitless worries about the op and afterwards.

Victoria is rejoicing and not a bit worried - I need to try and take a leaf out of her book!
Thank you all for your continued prayers.
We need to work out the practicalities of getting into town next Monday. Given all that needs to be done by way of preparation we have to get in as early as poss - I sort of favour the train and taxi though if we could have a lift that woudl be best. Ron thinks we could go in the van but the parking situation is pretty dire...

Wednesday, October 12, 2005

Just a quick one

Just posting to say that mum and most of the family are down in Taunton at our new farm that is why this blog has not been up dated for some time.
Victoria is currently struggling with a cold which will delay the date of the operation if she does not get over it as they can't operate when she still has it. Please lift this up to God Almighty in prayer.
Philip.

Saturday, October 01, 2005

This is Victoria smiling. She had a sudden moment when she was full of smiles. Today she is not so full of joy as she is struggling with a cold.
 
+ Raising Down Syndrome Awareness -