We went though the results of the MRI scan baby had last week and our baby’s now has hydrocephalus. 13.5 mm, in the ‘Moderate’ hydrocephalus range. After yesterdays scan we were prepared but it is still very hard. We knew it might happen and was even likely too but it could have not happened at all or it could have been later.
Of course again we don’t know what impact this will have. We are told 60 – 70% chance of there being little effect which is good and also that the baby has had 29 weeks of good brain growth is something to be grateful for. She told us of baby’s with twice the volume of water and half the age. That must be so hard for those parents.
It is likely now that there will be more surgery in the baby’s first few weeks which will again be difficult. We are also not so sure we want to continue with so many scans. They are hard and there is so little that can be done. Maybe best to just wait and see? We will talk with our consultant.
We were very glad to have met with our very kind Neuro-consultant who, in contrast to yesterday, gave us this news in the most positive way she could have.
I don’t know what else to say. We asked for God’s will to be done and for this to have a positive effect on our lives and those around us and we have to believe it is. We would certainly like to see some of the miraculous healings though. We continue to pray and keep going as best we can. I have a nursery floor to lay this weekend!
Thursday 29 March 2007
Wednesday 28 March 2007
Rough Seas
I was looking forward to writing this today to say how great our Alpha went last night, and it was really good, we cant wait for next week. But again things change we find it just as hard as day one.
At today’s scan a consultant we had not met before told us the ventricles in the head had increased to 13mm well above the borderline 10mm we had previously been told. Of course this being a new consultant on our case we got yet another opinion. This time saying that it wasn’t necesariliy hydrocephalus and may have just been normal growth. This contradicts what we have previously been told and just make me angry. I cant handle having to balance yet another opinion, I want to know the facts. There was a sense of security given us by the doctors in at least a consistent opinion. I did question him on this and got a standard answer that didn’t really make me feel any better about it.
It wasn’t just that that made me angry. When we entered we were just told about the student doctor, not asked. It was left to me to check it was OK with Kathy. During the scan it appeared as though he was talking to the student more than us casually giving us information that will change our life as we know it. It was all I could do not to start shouting at him.
I don’t mean to be nasty to him, he did nothing wrong it was just a new approach. All the others doctors have been exceptional and in a strange way we have got to know them. It was just a bad day with bad news.
Tomorrow we have our appointment with the Neurosurgeon in Nottingham to review the MRI results. We were nervous when she asked us up there and after this we are dreading it.
I read this morning Ephesians 4 v 14. All about waves and rough seas and how Gods Word gives us the ability to ‘stand our ground’. (v16) Certainly seems appropriate for the title of this entry.
At today’s scan a consultant we had not met before told us the ventricles in the head had increased to 13mm well above the borderline 10mm we had previously been told. Of course this being a new consultant on our case we got yet another opinion. This time saying that it wasn’t necesariliy hydrocephalus and may have just been normal growth. This contradicts what we have previously been told and just make me angry. I cant handle having to balance yet another opinion, I want to know the facts. There was a sense of security given us by the doctors in at least a consistent opinion. I did question him on this and got a standard answer that didn’t really make me feel any better about it.
It wasn’t just that that made me angry. When we entered we were just told about the student doctor, not asked. It was left to me to check it was OK with Kathy. During the scan it appeared as though he was talking to the student more than us casually giving us information that will change our life as we know it. It was all I could do not to start shouting at him.
I don’t mean to be nasty to him, he did nothing wrong it was just a new approach. All the others doctors have been exceptional and in a strange way we have got to know them. It was just a bad day with bad news.
Tomorrow we have our appointment with the Neurosurgeon in Nottingham to review the MRI results. We were nervous when she asked us up there and after this we are dreading it.
I read this morning Ephesians 4 v 14. All about waves and rough seas and how Gods Word gives us the ability to ‘stand our ground’. (v16) Certainly seems appropriate for the title of this entry.
Sunday 25 March 2007
Alpha
Less than 3 weeks to go now. Not much to report on tha baby front, Kathys getting those Baxton hicks things whatever they are aswell as getting a bit bigger every week. All attention is on the alpha course we are starting at our house on Tuesday. Looks like we have lots of people which is very exciting.
Im sure we have another apointment this week but I can't remember the date. Probably Wednesday. I think we have one every week for the next few weeks.
Thanks again for everyone who is praying for us. We do have better and worse days, and its a confort to know people are thinking of us.
Im sure we have another apointment this week but I can't remember the date. Probably Wednesday. I think we have one every week for the next few weeks.
Thanks again for everyone who is praying for us. We do have better and worse days, and its a confort to know people are thinking of us.
Sunday 18 March 2007
Faith
We had a meeting on Thursday and another scan. The meeting was with the consultant team who will look after us before and after the birth. It was an opportunity to ask questions and find out a little more about what we may be able to expect, the potential problem areas.
We had our “regular” scan afterwards to look at babies growth and any changes in the fluid in her brain. The measurements did show an increase in the fluid which is what we have been told to expect and the doctor was not overly concerned, but I found this a real blow. I think it is the uncertainty of what effects this could have on her brain development that really scares me, and the fact that I can do nothing about it. I am sure anyone who has seen their child ill or in pain feels the same helplessness.
To say that this is not testing my faith would be a complete lie, but I am reminded that “faith is being sure of what we hope for & certain of what we do not see”.
We want to be able to control this situation and we cannot, but we can trust in God, who we know has been faithful to us in the past and has promised never to leave us or forsake us.
One of the small blessings of having so many scans is that we get to see our girl before she has arrived. On Thursday we saw her wiggling her toes which was a really exciting sign, she was also captured on camera with two fingers in the air, so we may have to have some words when she gets here!
We had our “regular” scan afterwards to look at babies growth and any changes in the fluid in her brain. The measurements did show an increase in the fluid which is what we have been told to expect and the doctor was not overly concerned, but I found this a real blow. I think it is the uncertainty of what effects this could have on her brain development that really scares me, and the fact that I can do nothing about it. I am sure anyone who has seen their child ill or in pain feels the same helplessness.
To say that this is not testing my faith would be a complete lie, but I am reminded that “faith is being sure of what we hope for & certain of what we do not see”.
We want to be able to control this situation and we cannot, but we can trust in God, who we know has been faithful to us in the past and has promised never to leave us or forsake us.
One of the small blessings of having so many scans is that we get to see our girl before she has arrived. On Thursday we saw her wiggling her toes which was a really exciting sign, she was also captured on camera with two fingers in the air, so we may have to have some words when she gets here!
Tuesday 13 March 2007
More Appointments
Forgot to keep posting the dates of our various scans, we appreciate the prayer for them, so far each scan has given good news so I dare not stop asking people to pray for them!!
We have a multidisciplinary meeting (Us vs. 4 consultants) on Thursday followed by another scan. We haven’t been to the hospital for 3 weeks with the exception of 3 knee visits!! As the due date gets closer the risk of hydrocephalus (water on the brain) we are told increases. The doctors seem to be expecting it to happen soon which is disappointing. But its not there yet and it doesn’t have to be so please pray that will not come back any time soon.
Next Monday we have to make a trip up to Nottingham again where they will perform an MRI scan on the baby. Just amazing what they can do now. This willl give us more details about the spinal problems and help the surgeons plan better for the operation after birth. May also provide a few more pages for the photo album!! If the baby’s feeling energetic they may have to sedate Kathy and therefore the baby which we would rather didn’t happen.
Less than 3 months to go!!!
We have a multidisciplinary meeting (Us vs. 4 consultants) on Thursday followed by another scan. We haven’t been to the hospital for 3 weeks with the exception of 3 knee visits!! As the due date gets closer the risk of hydrocephalus (water on the brain) we are told increases. The doctors seem to be expecting it to happen soon which is disappointing. But its not there yet and it doesn’t have to be so please pray that will not come back any time soon.
Next Monday we have to make a trip up to Nottingham again where they will perform an MRI scan on the baby. Just amazing what they can do now. This willl give us more details about the spinal problems and help the surgeons plan better for the operation after birth. May also provide a few more pages for the photo album!! If the baby’s feeling energetic they may have to sedate Kathy and therefore the baby which we would rather didn’t happen.
Less than 3 months to go!!!
Sunday 11 March 2007
What a Pretty Wife!!
I have been finding it difficult to write on the blog recently We have described how we have been carried and riding on a wave this last few weeks and it has been a pleasure to share that with everyone. But why continue? I am not sure I now want others to know how I am doing when I am not doing so great; when life just seems normal.
Things have got normal so quickly, some of the really great habits we started are dropping away as the real world takes it share and of course the bad habits are creeping back in. Last year I spent 2 weeks in Hong Kong with Jackie Pullinger’s ministry, St Stephens helping look after the addicts. I was so out of my depth I didn’t know what to do or when or how. (Answer: pray, all the time and pray, respectively) It was an amazing 2 weeks that I wish I could have shared with Kathy. After I got back again after a few weeks the excitement had left and I was back in normal life again similar to now.
I know these things have not been in vain. My normal has changed immeasurably. I have learnt and continue to learn a bit more about grace each time. Some of the promises are now in full swing, a church youth group is under way with an Alpha course soon to start, my guitar playing continues to improve and Im still learning how to pray. That’s just the tip of what happing to people around us at the moment which we are so grateful for.
So why continue writing? My main reason is to record what’s happening to us and our baby. Maybe one day she’ll read it herself? But also as a testimony to how we choose to live and what God does/has done for us. there are more exciting stories out there to read but this is just our story.
We still haven’t had the amniocentesis which could again radically change our lives. We just don’t know at the moment what’s going to happen and living not knowing is OK. There are so many good stories out there we have every reason to be very positive. But all the possible outcomes aside we are just trying to keep focused on the one who takes care of us and will give us the best on offer.
We have no doubts there are many good gifts on offer if we just ask for them.
Our most recent of gifts has been a short trip to Cornwall, very relaxing especially while sampling some of Rick Stein’s rather nice and reasonably priced food. Although be sure the photo is only showing an increase in belly volume do to being 6 months pregnant and not the cheeseboard. What a pretty wife I have.
Things have got normal so quickly, some of the really great habits we started are dropping away as the real world takes it share and of course the bad habits are creeping back in. Last year I spent 2 weeks in Hong Kong with Jackie Pullinger’s ministry, St Stephens helping look after the addicts. I was so out of my depth I didn’t know what to do or when or how. (Answer: pray, all the time and pray, respectively) It was an amazing 2 weeks that I wish I could have shared with Kathy. After I got back again after a few weeks the excitement had left and I was back in normal life again similar to now.
I know these things have not been in vain. My normal has changed immeasurably. I have learnt and continue to learn a bit more about grace each time. Some of the promises are now in full swing, a church youth group is under way with an Alpha course soon to start, my guitar playing continues to improve and Im still learning how to pray. That’s just the tip of what happing to people around us at the moment which we are so grateful for.
So why continue writing? My main reason is to record what’s happening to us and our baby. Maybe one day she’ll read it herself? But also as a testimony to how we choose to live and what God does/has done for us. there are more exciting stories out there to read but this is just our story.
We still haven’t had the amniocentesis which could again radically change our lives. We just don’t know at the moment what’s going to happen and living not knowing is OK. There are so many good stories out there we have every reason to be very positive. But all the possible outcomes aside we are just trying to keep focused on the one who takes care of us and will give us the best on offer.
“Which of you if his son asks for bread will give him a stone?… …If you know how to give good gifts then how much more will your father in heaven give good gifts to those who ask Him!”
We have no doubts there are many good gifts on offer if we just ask for them.
Our most recent of gifts has been a short trip to Cornwall, very relaxing especially while sampling some of Rick Stein’s rather nice and reasonably priced food. Although be sure the photo is only showing an increase in belly volume do to being 6 months pregnant and not the cheeseboard. What a pretty wife I have.
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