I went to see my midwife today, the first appointment since we found out about the Spina Bifida. She had a student with her, so we went through what had happened. She was reading out my results and the discription of our baby and mentioned that she had never come across anyone carrying a baby with SB before. She's a good and experienced midwife and has offered me support, but at that moment she made me feel very alone. Irealised again abnormal our situation is. I guess we have got used to the normalilty of our situation to a point, but I have to realise that other people will react and that is hard.
The good thing is that we are able to enjoy waiting for her to arrive and when other people react I have to remember that. She is our baby!
On a different note, some strange pregnancy hormone has kicked in and I have gone out and brought knitting needles and wool! planning to make a blanket. I had to take it into work to ask advice re casting on as I could not remember. My manager helped me... thats what they are for!
At present I have one slightly dodgy looking square completed, only 19 more to go!
Wednesday 28 February 2007
Saturday 24 February 2007
Woe is Me
Finally back to the blog. Been a busy week, my knee is still not great, I have to take stairs 1 step at a time and my flu has left me with a chesty cough. In comparison to our last few weeks and the reason for this blog it’s been a walk in the park!
While our friends were praying for us a few weeks back they both had a picture of a girl with flowers in her hair and as one of these friends is very talented with a brush we now have a great painting which will soon be our wall. I can’t wait to see our baby girl in a few years to make a comparison!!
“High degree of mental sub normality, paralysis of the lower limbs and lower trunk, incontinence, half die within 5 years of life and only a minority are free from a major handicap.”
The same day we found our about our bays spina bifida I knew the importance for us of not typing it into Google to see what it means. We would wait for the doctors to tell us facts before we jumped to conclusions, I think I said probabilities and Possibilities earlier? After 4 or 5 days and after our second scan we decided to read one article in one book ‘The Encyclopaedia of Pregnancy and Birth’, a seemingly safe source which gave us the description above. God has been answering our prayers from day one. In that we have no doubt.
Here is one of the latest 4D scans (the 4th being time so strictly speaking this is 3D). We call this Picture ‘Woe is Me’. This pretty girl is going to have a portfolio before she’s even born!
Of course a huge thank you to all the cards, phone calls, letters, art work, etc. We have such great friends and family. Thank you.
While our friends were praying for us a few weeks back they both had a picture of a girl with flowers in her hair and as one of these friends is very talented with a brush we now have a great painting which will soon be our wall. I can’t wait to see our baby girl in a few years to make a comparison!!
“High degree of mental sub normality, paralysis of the lower limbs and lower trunk, incontinence, half die within 5 years of life and only a minority are free from a major handicap.”
The same day we found our about our bays spina bifida I knew the importance for us of not typing it into Google to see what it means. We would wait for the doctors to tell us facts before we jumped to conclusions, I think I said probabilities and Possibilities earlier? After 4 or 5 days and after our second scan we decided to read one article in one book ‘The Encyclopaedia of Pregnancy and Birth’, a seemingly safe source which gave us the description above. God has been answering our prayers from day one. In that we have no doubt.
Here is one of the latest 4D scans (the 4th being time so strictly speaking this is 3D). We call this Picture ‘Woe is Me’. This pretty girl is going to have a portfolio before she’s even born!
Of course a huge thank you to all the cards, phone calls, letters, art work, etc. We have such great friends and family. Thank you.
Monday 19 February 2007
My blogger is poorly!
I am writing this update as Nic is not well and has been confined to bed with a cold/flu. The positive of this is that he is resting his knee which is still causing him bother. We seem to be a right pair between us.
Bump on the other hand seems to be doing well. We had another scan today, one of the regular three weekly ones. I have to say that I do not look forward to them, although it is great to see her on the screen. All seems well; the fluid in the ventricles is still within normal range which is great. They took some measurements today; she has long legs just like her mother!
I am 24 weeks and have now resigned most of my normal clothes to the back of the wardrobe, my sister in law is very disappointed that I do not have fat feet and face yet, I am sure I will! Nic can now feel baby kicking which is great. I am experiencing indigestion which is not so great.
We are still trusting and praying for our little girl. We were reminded by someone at church of what we said before we had our first diagnostic scan. We said that we want to have the baby that God wants us to have. That is still our prayer.
Bump on the other hand seems to be doing well. We had another scan today, one of the regular three weekly ones. I have to say that I do not look forward to them, although it is great to see her on the screen. All seems well; the fluid in the ventricles is still within normal range which is great. They took some measurements today; she has long legs just like her mother!
I am 24 weeks and have now resigned most of my normal clothes to the back of the wardrobe, my sister in law is very disappointed that I do not have fat feet and face yet, I am sure I will! Nic can now feel baby kicking which is great. I am experiencing indigestion which is not so great.
We are still trusting and praying for our little girl. We were reminded by someone at church of what we said before we had our first diagnostic scan. We said that we want to have the baby that God wants us to have. That is still our prayer.
Wednesday 14 February 2007
Amusing moments
A little post script to the last posting which I found quite amusing. As we left the hospital, I had to run ahead to get the car and drive round and pick Nic up from the maternity entrance…. Mmm, something seemed wrong there.
Any concerned parents or friends of Nics should know that he managed to play Tennis on a Wii tonight, so things cannot be too bad!
Any concerned parents or friends of Nics should know that he managed to play Tennis on a Wii tonight, so things cannot be too bad!
Hospital Season Ticket Required
We have just got back from our 3rd hospital appointment in less than 24 hours. The last of the three, the cardiology one went fine, as far as they can see at 23 weeks the baby’s heart is normal. It was a bit nerve racking as she was scanning and saying nothing but it seems hat was just her way. Shes the 3rd consultant we have seen and they have all been really good. She and her colleague will become or main points of contact in a couple of weeks time when we transfer to the Royal. Still no hydocepalus so that is great, we will keep praying for that!!
So on to the other 2 visits. We had a little scare yesterday afternoon and they asked us to go along to the General for a mother and baby check-up. Thankfully everything is fine but it certainly gave us a scare.
And as for the third appointment I have been feeling a little left out so a thought a trip to A and E would be fun!! Hobbling in with a twisted knee didn’t turn out to be too entertaining however so I have to go back next week when I’m able to move it a bit more so they can put a camera in to take a closer look maybe. Thankfully our respective jobs are being very accommodating with all the time off.
And then to top it all off I locked my self out of the house!! A friend took me in resulting in a fun morning and a firm commitment on my part to buy a Nintendo Wii, for the baby’s entertainment of course!!
So on to the other 2 visits. We had a little scare yesterday afternoon and they asked us to go along to the General for a mother and baby check-up. Thankfully everything is fine but it certainly gave us a scare.
And as for the third appointment I have been feeling a little left out so a thought a trip to A and E would be fun!! Hobbling in with a twisted knee didn’t turn out to be too entertaining however so I have to go back next week when I’m able to move it a bit more so they can put a camera in to take a closer look maybe. Thankfully our respective jobs are being very accommodating with all the time off.
And then to top it all off I locked my self out of the house!! A friend took me in resulting in a fun morning and a firm commitment on my part to buy a Nintendo Wii, for the baby’s entertainment of course!!
Saturday 10 February 2007
Good Times
Modern technology: Below are the first pictures of our baby’s face!! Unbelievable what they can do nowadays. You can see the leg coming up obscuring the face on the left, a very acrobatic manoeuvre.
Right now Kathy is out baby clothes shopping with her Mum. We are really enjoying this pregnancy now which we are so thankful for. Since last Tuesday it’s been like a shadow has been lifted off from over us. We are again experiencing the joy of being expectant parents; baby clothes shopping, baby events etc. We will be doing a pre-natal class soon also I think.
Prior to all this happening Kathy was having an article written about her pregnancy to be published in practical Parenting Magazine, This came about through a friend of a friend who has now found out about the Spina Bifida. We had a message from the magazine saying they would still like us to continue with the article which we are really pleased about. It will be a great way to share all that’s happened and all that God is doing in our lives. Wouldn’t it be great to have this web address published!!
Tuesday 6 February 2007
A Not So Different Life
An email we sent out to friends family etc
===============================================
We have now been given an assessment of what the life of our baby will be like and it’s a long way from what we originally thought.
I want to say things are fine and even great, but of course I would be only be comparing to the original diagnosis on that Wednesday night, secure in our minds as the worst night either of us has experienced. But for us right now things are great. The spina bifda is still there but the hydrocephalus is being kept at bay. The baby was kicking and somersaulting much to the scanners annoyance.
The Spina bifda, for those who care about such things is located at L5-S1 whatever that is. For most of us this means the lower part of the back where the hips meet the spine. This point and below is where the nerves for the feet and bladder hook up so these are the areas which will be effected, the severity we have no idea. This means there is a chance that our baby will not walk but will have full motion from the knees up which is fantastic.
The plan is for the baby to be born at the Leicester infirmary. There are no plans for a c-section and it probably won’t be necessary (turns out we are not too posh after all!) and then after about 24hrs be moved to the specialist neurological ward in Nottingham. A technicality we are warned of is that mother and baby will have to travel by separate ambulance as 2 patients are not allowed in the same ambulance. Maybe one of our medical friends could answer that one? They will then operate on the baby at the base of the spine to replace the nerves and make things secure from infection.
There is a possibility for the hydrocephalus to return but we are told that the longer this is delayed the better and once the baby is born they are able to do various things to relieve the pressure. Please continue to make this the top prayer priority.
Then, all going well we will be home with a healthy baby girl. We have been told she can be treated as any other baby, breast fed, bathing swimming, crying at 3am for 6 hours etc. We will deal with any problems if and when they arise.
We still have the genetic scan to come but no evidence of a genetic problem has been seen so we are hopeful. As for the health of any possible future children the risks have gone up but only by a couple of percent so no undue worry there which is a relief.
Just another note about how great the care we have been getting is. The doctor’s and everyone else involved have been really great. We even sailed into a perfect parking spot at the hospital. Yes, prayer for good parking works too!!
Thank you so much to everyone who has called & written. We have so many great friends. We continue to believe that through this baby God will make himself known to people in many different ways. God did not create this illness but through it He will change the lives of us, our baby girl and those around us for the better.
Take care and Speak to you all soon. Please forward to anyone who would be interested.
Nic and Kathy
http://nicandkathy.blogspot.com
“We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us” Romans 5
===============================================
We have now been given an assessment of what the life of our baby will be like and it’s a long way from what we originally thought.
I want to say things are fine and even great, but of course I would be only be comparing to the original diagnosis on that Wednesday night, secure in our minds as the worst night either of us has experienced. But for us right now things are great. The spina bifda is still there but the hydrocephalus is being kept at bay. The baby was kicking and somersaulting much to the scanners annoyance.
The Spina bifda, for those who care about such things is located at L5-S1 whatever that is. For most of us this means the lower part of the back where the hips meet the spine. This point and below is where the nerves for the feet and bladder hook up so these are the areas which will be effected, the severity we have no idea. This means there is a chance that our baby will not walk but will have full motion from the knees up which is fantastic.
The plan is for the baby to be born at the Leicester infirmary. There are no plans for a c-section and it probably won’t be necessary (turns out we are not too posh after all!) and then after about 24hrs be moved to the specialist neurological ward in Nottingham. A technicality we are warned of is that mother and baby will have to travel by separate ambulance as 2 patients are not allowed in the same ambulance. Maybe one of our medical friends could answer that one? They will then operate on the baby at the base of the spine to replace the nerves and make things secure from infection.
There is a possibility for the hydrocephalus to return but we are told that the longer this is delayed the better and once the baby is born they are able to do various things to relieve the pressure. Please continue to make this the top prayer priority.
Then, all going well we will be home with a healthy baby girl. We have been told she can be treated as any other baby, breast fed, bathing swimming, crying at 3am for 6 hours etc. We will deal with any problems if and when they arise.
We still have the genetic scan to come but no evidence of a genetic problem has been seen so we are hopeful. As for the health of any possible future children the risks have gone up but only by a couple of percent so no undue worry there which is a relief.
Just another note about how great the care we have been getting is. The doctor’s and everyone else involved have been really great. We even sailed into a perfect parking spot at the hospital. Yes, prayer for good parking works too!!
Thank you so much to everyone who has called & written. We have so many great friends. We continue to believe that through this baby God will make himself known to people in many different ways. God did not create this illness but through it He will change the lives of us, our baby girl and those around us for the better.
Take care and Speak to you all soon. Please forward to anyone who would be interested.
Nic and Kathy
http://nicandkathy.blogspot.com
“We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us” Romans 5
Monday 5 February 2007
It is 9.00, the evening before our appointment at Queens in Nottingham. Nic has just spoken to a friend who told us the lady we are seeing is a consultant surgeon in Neurology, which is a relief to know. I worried that we were just going for another scan and would have to go back for more information if required.
I tried to write something earlier in the day, but I am really not as eloquent as Nic. If I am honest with myself, today has been quite tough on & off. I am currently feeling quite chilled, I am cooking whilst Nic is putting up a wardrobe,( how Mr & Mrs are we!).
I have had a line in my head all day from Psalm 139, it goes “ you hem me in – behind and before” I do not think my head could cope with more than that, but for me it means that I am not walking this journey on my own, which is something I need to be reminded of constantly.
I know that there are people thinking and praying for us tomorrow at 11.00, which also a great help.
I tried to write something earlier in the day, but I am really not as eloquent as Nic. If I am honest with myself, today has been quite tough on & off. I am currently feeling quite chilled, I am cooking whilst Nic is putting up a wardrobe,( how Mr & Mrs are we!).
I have had a line in my head all day from Psalm 139, it goes “ you hem me in – behind and before” I do not think my head could cope with more than that, but for me it means that I am not walking this journey on my own, which is something I need to be reminded of constantly.
I know that there are people thinking and praying for us tomorrow at 11.00, which also a great help.
Sunday 4 February 2007
Church was difficult today, meeting with lots of people who may or may not have heard the news. I feel torn between wanting to jump up the front and tell everyone what’s happened and how great God is versus just wanting to be left alone, not talk to anyone for fear of having to tell one more person were doing OK. Guess I’m running a bit low on energy to give the whole story the attention it deserves each time.
We will try and get the 18-30’s group going again this Wednesday with a trip to the Pub. There is potential for about 13 people or 3. Suddenly trusting in God becomes a choice again and not just where we find ourselves when we are desperate. Part of today’s message was about ‘Pushing back the boundaries’ of our faith. What with all that’s happened and the people we have talked to I’m praying that we will have the courage to ask people along, to ‘speak the word with great boldness’ but most of all just to let God do his stuff.
We will try and get the 18-30’s group going again this Wednesday with a trip to the Pub. There is potential for about 13 people or 3. Suddenly trusting in God becomes a choice again and not just where we find ourselves when we are desperate. Part of today’s message was about ‘Pushing back the boundaries’ of our faith. What with all that’s happened and the people we have talked to I’m praying that we will have the courage to ask people along, to ‘speak the word with great boldness’ but most of all just to let God do his stuff.
Friday 2 February 2007
One of the hardest things of getting back to some sense of normal has been everyone else’s sadness. People don’t know what to say, how to comfort us. Of course we know we are OK and will always be OK. That’s what our faith in God gives us. But how to explain that to others who don’t understand that Love? I end up making silly jokes, talking too much and probably making others feel worse. I must try and get better at that.
The more I think about all the things that could or are likely to happen the harder it is to stay focused on the good things so I choose not to. My trust is not in Gods ability to heal our baby, of course He could if He chooses but simply that His will be done in our lives. He knows best and has promised us that by giving our troubles over to Him is the best we can do.
Your will be done, on earth as it is in heaven.
The more I think about all the things that could or are likely to happen the harder it is to stay focused on the good things so I choose not to. My trust is not in Gods ability to heal our baby, of course He could if He chooses but simply that His will be done in our lives. He knows best and has promised us that by giving our troubles over to Him is the best we can do.
Your will be done, on earth as it is in heaven.
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