Victoria

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

Friday, July 29, 2005

News on Thursday the 28th is that Victoria gives us worrying moments (esp. in the middle of the night when she refuses to suck or swallow..) but today she has been a very good girl and has had 3 feeds where she has taken 80mls. She gets about 40mls from me and the rest from formula. I tried again today to see if she would have a go at breastfeeding – she wouldn’t – but at least she didn’t get cross about it.
Victoria is a very uncomplaining little person (and example to us all!) and yesterday when Lucy stripped her and laid her on a towel for the purposes of washing her she didn’t make a murmur – even when she was completely wet! I have a feeling that Victoria knows a good deal more about trusting God than we do…
On Tuesday when we took her to see the cardiac specialist from the Brompton hospital (at his monthly clinic at St Peter’s) we came away with a feeling of gloom. The op. can be done at 3 months and before that we are to expect her condition to deteriorate. It seems (from what I can understand) that her lungs are ‘stiff’ because the vessels around are not yet filled with blood. An op. now would mean that her heart would be seriously strained. Putting off the op means that her lungs will get fluid in them for which she will have medication. The op. can be brought forward at such a time as she shows difficulty with breathing. This is also likely to affect her feeding – she will find it too much like hard work to breathe, suck and swallow. I am not thinking too much about this – except that I shall stay near home (and therefore hospital) - and will continue to work from one feed to the next.
Another bit of very exciting news for which we are deeply thankful is that Lucy has found that she may transfer from Leicester to Guildford. She only now needs to speak to the person at Leicester who is responsible for her and then the process of transfer can begin.
The prospect of Lucy going back to Leicester on Sunday is not a happy one, she has been so immensely helpful. She has been answering the phone and emails. As well as this she has been keeping the dinners under control and keeping the small children out of mischief.
One thought which occurred to me while, on Tuesday, I laid down my dear little baby girl on the changing mat for the Dr. to take some blood for a thyroid test was that the Lord lays us in the way of painful experiences. He is watching with compassion while we struggle and grieve but He allows us to suffer because He is all-wise and knows what is good for us. If only this knowledge were to become a reality in my soul I am sure I would begin to make progress.

Tuesday, July 26, 2005

Tuesday afternoon

This morning my parents and Victoria went to the hospital for the appointment Victoria had with one of the paediatric surgeons from the Brompton hospital. It seems all a bit complicated, but surgery will be in about 2 and a half months time, because her condition needs to deteriorate somewhat before the surgery, or else her heart will be under too much strain. She's not supposed to start deteriorating until she is 3 weeks old, although since she was last weighed she has not put on any weight, which is apparently an indication that she's already burning off a lot of energy in breathing and circulation. But at the moment everything is stable, although prayer is still very much necessary - thankyou to those who are praying for my sister and my parents.
As far as I and Leicester go, it looks like I will be going back to Leicester this weekend, although I am still trying to see if I can get a transfer in some shape or form on to the course in Guildford in the near future.

Thankfulness

Thankful that the Lord so arranged things that we could go away for the week and thankful for the fortification of food and fellowship we gained down at Brunel Manor in Torquay. We got back about 5pm this afternoon. The most strengthening aspect of the weekend has to have been having Victoria Lily baptised. On the Saturday she acquired an extra name - Joy. To have this outward demonstration that, irrespective of her current or future capacity to apprehend the wonders of Salvation, Victoria Lily Joy is a member of the covenant and part of the church universal and throughout all time. We thank God for the Grace He shows to us in choosing us to follow Him and daily helping us in our weakness to keep on trusting Him. Actually, when one considers the calmness and simplicity of little children (perhaps esp. when one recognises that they are never going to grow up to be theologians...) one can't help envying them. As for me, I keep on thinking about what could go 'wrong' and whether I will be able to cope with what the future holds - Victoria doesn't, I think that makes her ahead of me!
Why the extra name? The day before she was born I was struck with the phrase 'joy shall be yours in the morning' - I mentioned it to Lucy and said that I thought the baby would show up the next day. She wasn't convinced. Anyway it is only a week later that I remembered this and thought that it was fitting that she should be, after all, Victoria Lily Joy.

Two days before we left for Torquay the health visitor came round and weighed Victoria who had put on a little more weight. Victoria's floppy spells seem to be a little less frequent. Her being more alert certainly makes feeding a bit quicker - though having to express milk with an electric pump as a prelude to every feed means that it still takes about 45 mins to feed. Lucy has been helping out and last night volunteered to feed Victoria. Shortly after 12 midnight, however, she appeared in my room defeated by Victoria's unwillingness to suck at all In the end, between us, we managed to persuade her to swallow down 30mls then left her to sleep for another three hours - at the next feed she was more 'with it' and sucked and swallowed quite efficiently. Before we got home I did manage to get Victoria on the breast - which was a tremendous encouragement to me - for 5 or 10 mins. This gives me hope that we have something to build on.
Tommorow we see someone for a thyroid test and then we see the paediatric cardiologist who is from the brompton hospital and holds a clinic at St Peter's (2 miles from our home).
One never knows what a day may hold and I ask that you pray for calmness on my part (I'm not too good at that....), wisdom on the part of the Doctors (I'd rather that they said they would do the op. sooner than later) and, on a practical level, that with the help of my lovely midwife / breastfeeding advisor, we might be able to figure out how to interest Victoria in doing what ought to come naturally. Also please pray regarding Lucy's plans. She is quite prepared to ask for a break of a year in her course in Leicester - which is feasible. I would rather she were to get a transfer to Guildford but we don't know whether or how that is possible. Lucy is due to return to Leicester at the end of this week so has a few days to make some phone-calls to the relevant people if she can manage to get phone numbers.
Although I haven't answered more than one or two emails in person I have been greatly encouraged and blessed by those I have read (or Lucy has read out to me). It truly is an amazing thing to belong to the body of Christ - thank you to all those who have sent messages and cards.

Friday, July 22, 2005

Good news


Victoria is feeding fine and, as seen on the picture she has to be fed by a syringe and pipe on expresed or formuler milk. She dose feed of Tracy a little bit but not fully.
We will be spending the weekend down in Torque at a Christian conference so the next posting will not be for a few days.
Please continue to pray that Victoria will be getting strong ready for the heart sergery she needs.

Wednesday, July 20, 2005

Wednesday evening

The brain is fuzzy, I have a job to remember what day it is and I live by the clock. Feeding is taking at least an hour and we are doing that every 3 hours. The routine is to express milk (normally not more than 30 mls- sometimes only 15mils) and use the tube taped to my finger to allow Victoria to painstakingly swallow milk delivered from a syringe.
On Monday we took Victoria in to the A& E after a night of worry. She was extremely floppy all night and we had no food for her other than the milk I had expressed - even that was difficult to get down her and she would not suckle at all. The Paediatrician who saw her there said that she was fine, considering her condition and the fears about the possibility of there being fluid on her lungs - and how we would be able to hear if she had. That being settled she was admitted because she had lost more than 10% of her bodyweight. Armed with the tubes and syringes we implemented the regime suggested by my lovely midwife (I really think she must be an angel....) and when the Dr's came round in the morning they said that Victoria had 'not been taking as much as we would like' - their calculations said that she must have an impossible 76mls every 3 hours - she already was struggling to swallow down 60 mls... I recognised that the goalposts had moved but saw no loss in requesting that she be weighed in any case. When weighed she was a miraculous 220gr heavier than the day before so I started to ask everyone who came (given that now she was only 8% below her birthweight) whether we could go home. Common sense prevailed, thankfully. Since being home I have been camping out in the visitor accommodation (I am thinking of renaming it the dairy....) where the machinery, bottles, sterilising stuff and the all-important syringes , tubes and tapes reside. We had a very comfy night with one hour out of every 3 spent in 'feeding' and the rest of the family came (with bacon butties and coffee) at 7am to check how we had got on. Monday night, in the hospital, and last night, in the cabin, allowed me the all-importand opportunity to sleep - I had really had no more than 2 hours per night since the 12th of June.
It struck me yesterday that it was a week since victoria arrived but I had to determine NOT to try and think about it. The whole week seems to have been one continuous nightmare interspersed with astonishing answers to 'prayers' I was too numb to present to the Almighty.. The prayers offered up on our behalf, by many dear people (both known to me and also unknown to me, in the UK and other countries) have kept me from total despair and last night as I watched my precious little one sleeping I pondered on the relative helplessness of my daughter and myself. I am convinced that Victoria's peacefulness is because of her trustfulness - my anguish is only because I don't have sufficient faith. I have often spoken to my heavenly Father on the subject of my lack of faith.... so here I have a crash-course - and it hurts like I never could have imagined. He is my refuge and my strength. David wrote out for me, in his lovley handwriting, psalm 46 - from the Scottish Psalter - and I have had it often before my tearful eyes as I struggle to rest in the truth of it.
We have an appointment for another echo tommorow afternoon and then with the cardiologist on Tuesday - this is the man who holds a clinic here but is based at the Brompton hospital where it is hoped the operation to rectify the holes, inthe vertical plane, in Victoria's heart and to restore some sort of valve system in the horizontal plane after which point she will be out of the danger of heart failure.
Victoria has already been such an inestimable blessing and exudes a kind of magnetic attraction that I pray that the Lord will sustain her life and continue to prosper her so that she may praise Him and help others to appreciate the Glory and kindness of the Lord and she works to overcome her difficulties. She really is a very pleasant little person - she didn't even scream the house down when she (finally, at 8 days of age) had her first bath - everyone was VERY impressed.
Please continue to pray for us - today has been a good day but some feeds go depressingly badly and the pepti-junior formula she had yesterday and today seemed to disagree with Victoria's stomach so we are using Nutramigen or soya formula.

Tuesday, July 19, 2005

Tuesday afternoon

Exitment again in the vandenBroek's house as Tracy has returned again. Victoria was sent in because she had dropped below 10% of her birth weight but, having had the hospital fatten her up she is now only 8% below her birth weight! Praise the Lord that she regained the stated weight so quickly.
Victoria was not feeding from mother before and now she is and well.
Philip

Monday, July 18, 2005

Monday afternoon

I'm just back from the hospital. Victoria has been checked out and does not have fluid on her lungs for which we thank God. Her oxygen saturation levels are virtually unchanged which is also good, however she has lost too much weight (according to the hospital's charts ) so she has been kept in . Tracy and Vactoria have a room to themselves so Tracy will try and catch up on sleep. She will be seeing a breastfeeding advisor and a nutritionist hopefully today.

I (Ron) am doing the posts on this blogspot as Tracy is not up to computing. What I have typed over the past two days is more than I've done in the last year or more, so please forgive spelling and grammer mistakes. It also takes me awhile to do this as I'm not into this kind of communication with one finger,so if what I am doing is of any help please let me know and i will continue I have heard that doing this kind of thing is supposed to be some kind of therapy for the mind,-I guess that it will help my control of a mouse (for correcting the mistakes) and strengthen the end on the finger which does the typing.
Ron.

Monday morning 9.20am

Victoria fed very little during the night, what she did take was expressed milk fed by means of a syringe and tube. tracy is exhausted and emotional so she has had no sucess in expressing more milk and the stock is now used up. I called our midwife at 6.30 am ,she advised getting some soya milk powder which we have done and Victoria has taken 30ml. We must now go up to st. Peters A. and E.as viv (the midwife ) suspects fluid on victoria's lungs. I will post when we know more.
Ron

Sunday, July 17, 2005

Sunday morning news


Dear Friends
It is Sunday morning, and normally in our house the computer is off today, but because of the current circumstances
I'm e-mailing a list of people who have sent messages in order that you are kept up to date with what is happening here at Otterhill Farm.
Tracy and Victoria Lily came home on Friday. The hospital were not going to 'release' them yet but as Tracy was finding it increasingly more difficult to rest due to being on a ward with 5 others with all the associated comings and goings etc... , a kind midwife interceded for her with the higher powers and as a result she was allowed home on the understanding that we would bring her and Victoria in whenever they wanted to check up or do tests. ( we live about a 10 min. drive from the hospital )
You can read about Victoria's condition on Lucy's blogspot. This remains the same and she will need heart surgery in 2-4 months time . The current cause for concern is that due to Victoria's condition breast feeding is very difficult. She doesn't suckle for long before becoming breathless and then dozing off. She does however need to have a good input of milk in order to grow stronger and at present it isn't happening , so Tracy is trying to express milk to feed to her via a syringe , but she is finding that very difficult. God is being very good to us in His kind providences one of which is that the midwife who attended the homebirth of Victoria is a Christian , and although semi retired, she has gone far beyond the call of duty and has been into hospital to help Tracy and has come here to help as well . She hopes to call round after church this morning the show Tracy how to get the expressed milk into the baby with a syringe. I hope to go to our church with all the children bar one and hopefully Tracy will get some sleep. Since coming out of hospital it seems that the period of time during which Victoria feeds with much success is during the might, so this is causing problems with keeping the rest of the children quieter during the day so that Tracy can rest. As Tracy wont be using the computer for a while any of you who would like to encourage her will need to do so by letter or phone. I would suggest phoning between midday and 4 P.M. For the time being and during any other times when Tracy won't be able to write or reply to e-mails there should be information about the current situation on Victoria's blogspot, but don't stop e-mailing Tracy,-she may just take a while to reply.
Thank you all again for your expressions of concern,your prayers on our behalf and the love which you have shown to us.
Ron and Tracy van den Broek.
Victoria's Blogspot, http://www.victorialily.blogspot.com/
Lucy's blogspot http://www.lucyvdb.blogspot.com/

Saturday, July 16, 2005

Friday evening

Victoria and Tracy are now at home. A kind and sensible midwife who knew Lucy from when she was working at the hospital spoke to the consultant and asked if they could go home provided that victoria is brought in tomorrow morning for a test. We hope that Tracy will get a good night's sleep (apart from feeding Victoria ) Once again God has overruled ( or disposed of the N.H.S's red tape )
If you would like details of Victoria's birth go to Lucy's blogspot .
Tomorrow (saturday ) Lucy and Timothy are hoping to leave very early for Beach mission work in St. Ives, and Philip David and I hope to go to Chilworth to lay the concrete base for the church's new baptistry. I will be taking most of the other children in order to give Tracy a quiet day, so there will probably be no postings tomorrow.

Friday, July 15, 2005

Thanks

We would like to thank all those who have sent cards, phoned, sent messages or emailed us with their congratulations, gifts, dinners, encouraging messages, and assurances of their prayers on our behalf. We are truly grateful to you all and for your concern for us as a family and we are very much aware of Gods lovingkindness and tender mercies at this time. Ron and Tracy 15-July -05.
 
+ Raising Down Syndrome Awareness -