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

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.


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