Okay so I had an idea the other day and wanted to know what you all thought. I've been watching the inspirational things people have been doing, saying, making and writing throughout their CDH journeys and beyond. For example, Maxton's mummy has written the most beautiful book and created some wonderful paintings along with many other parents who have found comfort in the arts. I therefore thought how great it would be to create a platform from which all of these CDH inspired thoughts and actions could be transfered whilst at the same time increasing CDH awareness.
It isn't just 'things' which will be on the site but also words and pictures, bible verses and music. It will be a site where we can all share 'those things' which have helped us get through these extremely difficult times! Literally ANYTHING that has inspired us.
Example - There is a surgeon here in England who has written his entire manifesto on the potential causes of CDH and he inspires me - hence I would invite him to write a small amount about his cause.
On the other hand I have met a number of CDH angel and survivor families who have inspired me to the point of tears and I would love them to share their stories.
This is not my website this is a website for all of us to share our inspirations throughout this journey and spread awareness.
I was thinking the categories on the site may be as follows:
Inspirational Angel Babies
Inspirational Projects (aka charities/anything to raise money)
Inspirational Medical Professionals
Inspirational Blogs - (a link to this little community)
This really is the beginnings of the idea and clearly I would love some feedback. Please let me know your honest thoughts. If you already have things which you would like added to the site please email them to me at firstname.lastname@example.org
Monday, 27 April 2009
Posted by Michael and Elizabeth Reeve at 14:29
Thursday, 23 April 2009
We went up to St George's today for our routine scan. It was fairly positive. My amniotic fluid levels are still normal and nothing has changed with baby James-no news is good news.
Onto the cute stuff though.....he is absolutely adorable!!! He weighs 4lb 13oz and on the 4d picture he even looks a little chubby ;-) He was being a bit naughty though, the sonographer was trying to get a picture of his lungs but he was hiding them with his arms. Once he finally moved them he wouldn't stop wiggling around enough for them to see his kidneys....he was making the whole room laugh already - I think he takes after his uncle James!!!
In terms of the hernia things are the same. The good lung looks big but of course they cannot predict the actual function of the lung until birth. The stomach and parts of the small bowel have herniated but the liver position is still completely down - this is very good news!!
I tried to press the consultant for some prediction of outcome which of course he wouldn't answer. He did however say that he was ''optimistic'' which is excellent. We can only pray to prove him right.
We have returned from the hospital with a positive outlook today. It almost seems impossible that this little boy with so much life already could even have anything wrong with him, let alone possibly not make it!!
Please, please continue to pray for little James!! We couldn't love him more and are desperate to bring him home.
Thank you for checking in again. Much love
Posted by Michael and Elizabeth Reeve at 13:49
Wednesday, 22 April 2009
Firstly I wanted to say how very saddened we were to hear that baby Kaden has lost his fight with CDH. He had an inspiational 17 days on earth and his parents, Craig and Kristi Kuehl were incredible. Please remember their whole family in your prayers.
I had another midwife appointment yesterday. Basically to cut a long story short - because I have been under the care of 3 different institutions they have forgotten to do certain checks on me...being that this is my first pregnancy I didn't know any difference. Anyway, they have now caught up and I am measuring bang on 32 weeks - where I should be. I also had my GTT test which came back normal. My blood pressure is a little higher than it was but nothing to be too concerned about.....I think I may have to cut down on those Cadbury Caramels though ;-) At the moment everything is looking fine with my health. I am however getting a bit fed up with the 'alarmist' nature of so many midwives. They don't appear to understand the stress and worry of carrying a CDH baby, anything extra that could be wrong makes you exhausted at the prospect - all I want is to be the best possible womb for baby James to live in. I've decided to pretty much wait until things are checked by St George's before I panic about anything else. Whine over!!!!
We have another scan and specialist appointment up at St George's tomorrow. I'm hoping little one is doing well - he certainly has a lot of energy so I'm sure thats a good sign. I'll post as soon as we're back to let people know how he's looking.
Less than 7 weeks to go now......yipee?? Mike and I get to meet our pride and joy....!!
Please pray for good news tomorrow......watching so many babies struggle and lose their fight with this awful condition devastates us. We want to help spread awareness and support those amazing medical professionals who are researching this!!
Thanks for checking in xx
Posted by Michael and Elizabeth Reeve at 04:38
Thursday, 16 April 2009
We went for our 30 week scan today to check baby James's growth and my fluid levels.
Fluid levels are on the high side of normal but are still normal so that's great - keep swallowing little man!!!
James's situation is much the same as before. In my opinion the stomach looked a little smaller and we could see the second lung clearly so we know there is some lung growth there thank the lord. Liver position is still totally down. James's bladder was full and his urether was slightly more inflamed - whether or not this is because of his full bladder or not we have to wait and see.
Still we are very gratefull that our clever little boy continues to grow - he now weighs 3lb 7oz.......he clearl already likes Mummy's cooking (and her intake of chocolate goods)
Thank you for your thoughts and prayers. Please continue with them. This little chap is so loved and wanted by us and we couldn't imagine not watching him grow.
With much love to you all.
Just to let you know James has discovered my ribs and very much likes to kick them - bless him. He is moving well and loves the sound of water. I love this little one moving inside me and think I will miss it when he's out. Can't wait to see him though all the same.
Following the scan we had a meeting with the surgeon who is likely to carry out James's repair surgery. What a wonderful man!!
He explained that the surgery is not a big deal - its the pre and post stabilization that matters. Once the baby is stable enough and showing that he can manage his oxygen a little they will take him for his repair.
In order to repair they will make a small incision in the left side of James's chest region. They will then pull all of the organs from the chest area and back into the abdomen. They will then stitch a patch over the hole in his diaphram and close him back up.
James then has a real fight on his hands. He needs to not only manage his oxygen levels but he also needs to use all the organs now they are in the right place. The best outcome is that they just work.....please pray for this.
Once he has recovered from the op they will reduce his ventilation levels and try and get him to breathe alone. They will also introduce his milk. Once he is breathing and eating independantly he will finally be able to come home......yipeee!!!!
So it appears that James has an ordeal ahead of him in his early little life and this is aweful to think of.
We were however given a fe reassuring statistics -
Firstly they are noticing an 80% survival rate in CDH babies at the hospital - much better than the 50% we were first quoted.
Secondly James's LHR is 1.9. This is a very positive prognostic sign! LHR is Lung to Head ratio and it essentially gives us some idea of the size of the babies developing lung. Anything below 1 is bad news, however ours is way above that so we're delighted. However, please note that the surgeon stressed this was not a cut and dry figure. There is no exact way to predict an outcome for a CDH baby. They are all different and they are without a doubt all special and strong little babies.
Our next scan has been booked for 23rd April 2009. I will be speaking with the midwife before then to book in my induction date - its likely to be 8th June....11 weeks to go!!!
Okay so we finally have a bit of extra hope .............. YEY!!!!
We met with a different consultant today who was utterly brilliant!!! He was so gentle and explained absolutely everything to as as he went along. He, as always had a good look at James and saw a (and I quote) a 'beautiful' profile. We also had a giggle as it seems James is well DEFFINATELY a boy!!! Mum even asked for it to be measured ;-)
The best news of the day of the day was that we saw one good lung. This is brilliant as we had not seen this on the previous scans. The consultant had seen lots of CDH cases and said that there were some good prognostic features. Feeling perhaps a little over confident we asked for him to work out James's LHR.He told us he would let us know in a few hours.
My fluid levels are also back to normal - brilliant news!!! It seems James is a very clever little boy and can swallow beautifully.
James's stomach and small bowel appear to be in his chest. This is how we want it to stay. The liver needs to stay down where it is!
Perhaps our optimism was a little too over the top. The consultant needed to bring us in a little. He reminded us that CDH babies are extremely fragile from birth. James will be in Intensive care for a while which is a total roller coaster for the parents. These babies have good days and bad days and we need to be prepared for both. The average time in NICU and Special care is 8 weeks so we need to be prepared for a difficult time post birth.
He also reminded us that they have no way of predicting the outcome for CDH babies. His explanation he gave us was brilliant so I thought I'd pass it on. The lungs job is to take in oxygen and send it around the blood. They then take the carbon dioxide out of the blood and breath it out. If the lungs of a CDH baby are developed enough they will be able to do this job and the baby will go for surgery as quickly as possible, this is the best case scenario. However if the lungs can only do a small amount of this the baby is more likely to struggle and will have a tougher journey to become stable enough for the operation, however he still has a chance of survival If the lungs cannot do this at all there is no hope of survival and the baby won't survive. This is why we need to pray that the good lung can do its job well so that James is strong enough to undergo the surgery.
Even with this news we remain to be more optimistic than before. We thank you for your prayers, I'm sure God is working his plan on our little boy.
Thank you also to Mum, Dad and Mike. Your presence at these scary hospital appointments is invaluable. xxxx
We had our 25 week scan today at Guildford and James was being his usual wriggly self!! The hernia is pretty much the same alhough we did discover a few more things.
Firstly it appears that the majority of his liver is down where it should be. This is good sign as far as prognosis and we hope it remains that way.
Secondly I was found to have Polyhydramnios. This means I am carrying too much amniotic fluid. This is a bad sign as far as prognosis goes. This occurs because the hernia is pushing against the trachea causing James to have trouble swallowing his amniotic fluid. It can cause pre-term labour which we despirately don't want to happen so please pray he swallows!! Amniotic fluid levels will be checked again at the next scan on the 19th March.
Thank you for your prayers......keep them coming xxxxx
We met with a wonderful consultant today. He scanned baby James in full and took a very close look at the hernia. He didn't say too much about it as he seemed to be more concerned with the possibility of a chromosomal abnormality. This we discovered would not be Down Syndrome but Edwards Syndrome- a condition with a 100% mortality rate. Obviously this was all we could focus on and went through the hardest hour of our lives to date. We wer unsure of wheather to do the amnio at this stage and needed some medical advice.
When the consultant entered the room the mood seemed to change organically. He could tell how concerned we were and advised us that there was only a small chance of a 'syndrome'. Baby James's nucal measuements had been normal during the 12 week scan and this measurement is 80% acurate. We told him that whatever the outcome we would not consider a termination and so we didn't want to risk the pregnancy further by undergoing an amnio. Mike, Mum and I seemed to come to this conclusion at the same time and knew imediately that it was correct.
Therefore our main concern was now the Diaphragmatic Hernia and Kidney Hydrophonsis. There is a 60-70% survival rate for this condition so please pray hard! We want to bring our baby boy home!!
23 Weeks - Fetal Cardiology
There is a large connection between Diphragmatic Hernia's and heart defects in babies with Edwards Syndrome. Therefore Jame's heart rate needed to be checked in full to give us a greater understanding of his condition.
The cardiologist spent a long time looking at James's heart and we are delighted to report that the heart development is normal although it of course is slightly over the the right - a right medial shift in medical terms. This was great to hear as it suggests his other problems are isolated.
Although the consultants have all been pretty pessimistic to this point, we are all trying to stay positive.
Thank you for your continued prayers, please keep them coming!!.