firstly I have to report that they think James is doing 'Great'!! He is gaining weight and growing on a par with a 'normal' twelve week old. His development is right on track and he 'looks very good'. Yipeeeeee! It feels like I've recieved his first 'excellent' on a school report. So proud of this little boy. He fills me with Joy at least 100 times a day. Well done baby boy!
They took a chest Xray to monitor and it looks good but we'll know more about that at Mr Nicolls clinic on September 15th. Generally he is doing well though.
It was strangely nice to be at the hospital today. Familiar and nice. I guess this was the place this journey began.....and although that journey was so hard, it gave us the most precious gift in all the world.
I had some really interesting conversations with our consultant and pediatrician about CDH research and treatment. They would support any independent research we embark upon and will make the geanologist available to us. They also gave us the name of the person to contact to receive medical advice and expertise. They suggested that more research needs to be put in to causes as well as cures.
Before I write this next paragraph please be aware I do not want to offend ANYONE! I feel it is only fair to share things like this to help CDH talk, evolve, learn and STOP!!!!
We had a long discussion about the vast differences in treatment between the UK and USA. The pediatricians here in the UK are highly concerned with the way US babies are treated. ECMO is only a last resort in very few babies here in the UK. It is very, very rare for a CDH baby to be transferred for ECMO here. Why then is it so common in the USA. With the CDH community hit so badly at the moment, I really think we need to be asking questions....why is the UK survival rate 70-80% in 2008/2009?????? What are the differences.
Please don't get me wrong, I am really NOT criticising the medical staff who took care of our beautiful babies....they are amazing and I genuinely believe they are doing the best they know how with each and every baby. I just want to make sure the 'norm' is really the best!
I'm really sorry if my posts are intence and questioning recently. I'm throwing thoughts around, trying to make sence of 1000 things! I've watched too many friends go through the worst possible thing for a parent to bare and I want to change things.
As I said before, please don't take anything with offence......I'm thinking out load.
With love to you all
Wednesday, 2 September 2009
Posted by Michael and Elizabeth Reeve at 13:22
Tuesday, 1 September 2009
I'm absolutely determined to get more research going and have been trawling the web!! It seems there are hundreds of medical journals linking Nitrofen ( a prohibited herbicide ) with CDH. In FACT (and this makes me steaming angry) in order to try and realise a possible cure for the condition, they induce CDH in rats with Nitrofen. They know that feeding Nitrofen to rats on day 8.5 of gestation will cause its babies to have CDH...hmmmmmm!!
Now I kind of get why this isn't public;y discussed - Nitrofen after all is illegal in the U.K and USA but I'm wondering if there is a black market for it somewhere or if one of the components in Nitrofen is common in another, widely used herbicide or pesticide? I need a chemist or chemical analyst. I'm on the case. As of tomorrow I'm making it my Erin Brochovich type mission to look in to this.
Right now I'm thinking ..... how dare they know of a cause of CDH and not make it SO public that all the laboratories in the world aren't researching further.
Whilst researching I also found this....and I quote ''Antenatal steroid therapy, by suppressing pulmonary ACE activity, may reduce the risk of pulmonary hypertension developing in human newborns with antenatally diagnosed CDH.'' That's right....and were you offered this???????? I certainly wasn't. Basically, steroid treatment might help CDH babies with their pulmonary hypertention.
If anyone knows anything please please please help me. xx
Posted by Michael and Elizabeth Reeve at 14:44
Monday, 31 August 2009
It pains me tell you that beautiful Ireland Rose lost her CDH battle yesterday. Please pray for Chanda and Mike, may they find peace and purpose as they water the earth with their tears. I cannot believe another sweet baby has gone. We REALLY need to find out what's causing this terrible defect.
Baby Max is also fighting really hard right now and needs our Urgent Prayers!! He was just about ready to be extubated when a major setback caused him to require ECMO. May he continue to be a little warrior.
Please pray folks....the CDH community needs you!
Lots of Love Beth & baby James xxx
Posted by Michael and Elizabeth Reeve at 12:37
Sunday, 30 August 2009
Sorry its been a while. We've been establishing a routine and getting back to the grind.
Firstly let me tell you baby James is astounding everybody and being a little dream! He is much bigger and fatter now and playing little games. He has the most beautiful temperament and smiles non stop. He adores his Daddy. We cannot believe how blessed we are to know him and thank you will never be enough! We have a neo-natal medicine check up on Wednesday so I will report on his health after that.
I'm sitting here in floods of tears having just read Jackson's blog. It seems totally unfair that he is not with his Mummy & Daddy, doing the things that James is. I'm not sure its possible to miss someone you've never met but there is a genuine hole in my heart where baby Jackson should be. Candice and I were in touch during her pregnancy and I was so sure these little guys would grow up to meet each other and swap 'pirate stories' about their scares. We love you Candice, Rob and Angel J. We pray for you......I just wish there was more I could say!
Now that we are settled into life at home I'm really keen to step the 'CDH work' up a gear! So far we have planned to run the Nike 10k next year along with another couple who are great friends of ours. We will obviously be raising money for CDH. Bearing in mind I'm a singer, we're also extremely keen to organize a fundraising concert - if anyone has any ideas, please send them my way.
Always remembering Maxton, Kaden and Jackson.
Lots of Love
Beth & baby beautiful James xxxx
Posted by Michael and Elizabeth Reeve at 13:37
Wednesday, 12 August 2009
Firstly let me say how sorry I am to hear that sweet baby Jackson has lost his fight with CDH. This inspirational little boy touched the earth with his bravery & this world will be a worse place because of his loss. Please pray for Candice and Rob whose strength is astounding. May they find peace.
Mike & I have just returned from a week away in Norfolk. It was so lovely to be away as a little family! James was a dream and loved spending so much time with his Daddy. He seems to have come on so far in the last 7 days & he experienced some memorable 'firsts'. James went to the sea, saw a castle and discovered his fists!
We are still having weight gain issues. Having spoken to the peadiatric diation we now appear to be on a better track and have a deeper understanding as to why this has occured. James was given TPN (introvenus food) for a total of 3 weeks. This causes blockages in the liver which can effect the absorption of food, the liver function will improve but this can take a while. They have therefore resorted to a full diet of Infatrini milk - a high calorie prescribed milk. Hopefully this will help him catch up.
I feel I should also share about his asymetric stomach. Following the surgery, James has a larger left side abdomen than right. I spoke to the surgical registrar about this today and he said it's really common following CDH remair surgery and it is caused by a weakening of the muscles because they have been cut. This will also repair itself in time.
I'm surprised that issues which appear to be 'common' in CDH babies are not published and offered as information to parents. I therefore have decided to take this in hand and produce a simple 'post operative' CDH fact sheet. If any issues have arisen with your little CDH babies following their operation, please can you drop me an email so I can add it in....thank you!
Other than the above, James is a wonderful little boy and my only regret is that he'll never get to play with Maxton or Jackson, or in fact any of the CDH Angels. We remain grateful every day that we were blessed with the gift of watching James grow.
Much love to you all xxx
Posted by Michael and Elizabeth Reeve at 06:27
Tuesday, 21 July 2009
Wow, I cannot believe our little boy has been home for 2 weeks tomorrow. I can now see why people say you wake up and they're 18! SLOW DOWN please....I want to take in and enjoy every single minute with beautiful baby James!!!
Things really are better than I ever can imagine and I love being Mummy more than anything in the World. I love our little family and we have a wonderful life. I cannot express how grateful we are that God has blessed us with this outcome.
James has settled well. He feeds every 4 hours at night and 3 hours in the day. We are still having to 'top up' his feeds with a bottle after he has breast fed but it seems to be working as he put on 8oz this week. Yipee.
He is a very happy little baby and loves watching....well anything! He's really nosey and I can't think where he got that from!
Anyway, thank you for checking in, we love to share this journey with you. Please continue to pray that many other CDH families can bring their beautiful babies home or at least find peace in the blessing of such special children....we can learn so much from each and every one, the angels most of all.
We are so happy and hope you enjoy these pics. xxx
Posted by Michael and Elizabeth Reeve at 13:15
Friday, 10 July 2009
My deepest apologies for the delay in 'blogging' my phone has been down since the weekend so I haven't been able to access email to update my brother. You guys have been so great in following the blog and giving us such wonderful support and we are so grateful. We certainly haven't forgotten you!!
This has been possibly the craziest and most wonderful week of our lives.
Following the previous posting we returned to the high dependency to find that James had not been returned onto the Cpap ventilator. The nurses had decided to only have it there for 'rescue' in case he gets tired. James rose to the challenge and although he needed a few ours the following day it was bye bye Cpap FOREVER by Friday.
Then...he started thinking that milk really is yummy and demanding more and more of it. Everything they put through his NG tube into his little tummy he was eating! So they upped him by 3mls every 3 hours until he reached full feeds at 6am on Sunday morning. Throughout the night on Friday, Saturday and Sunday I was attempting to establish breast feeding which we FINALLY mastered at 3am on Sunday. James was so happy to be feeding well. Because he was clearly tolerating his feeds, by 9am Sunday morning we had said goodbye to the NG tube and hello to 'on demand breast feeding'. Things really do move quickly once you're on the home stretch.
They decided to let us 'room in' with James on the Monday night so we could establish feeding as would be achieved at home and to get us used to the lack of monitors. We loved this! We were with our baby boy with NO tubes and no one watching our every move. What a moment!
On Tuesday however we had a little bump in the road. Overnight James had managed to loose 100grams so they needed to monitor his weight a little closer. They decided that if he put on sufficient weight overnight that he could.........................wait for it.................go HOME!!! So as you can imagine we fed, fed and fed our baby boy, so much so that he did 10 poo's in a day.
Throughout the day on Tuesday and Wednesday we were taught how to bath, give mediation, recusitate and monitor baby James. Then there was the weigh in and.................. he had gained 45 grams. Thats all he needed and was DISCHARGED.
3 Days in High Dependancy,
2 days in Special Care,
2 days - rooming in,
a total of 29 days on Hospital out baby has come home!
We have made some great friends throughout this journey and are so grateful to all of you for your thoughts and prayers - they certainly got us through this roller coaster.
Thank you to all of you and I promise to post photo's and and update tomorrow. As you can imagine though we are totally shattered.
So delighted to sign off as a family at home..........
Mike, Beth and Baby James Michael Reeve
Posted by Michael and Elizabeth Reeve at 07:52
Tuesday, 30 June 2009
I'm so sorry for the delay in updating, days just fly here & yet seem to stay still.
Baby James is nothing short of a little fighter. He is now managing on a 10 hours off, 2 on Cpap ventilation cycle. He gets tired during the tenth hour but his blood gases say he's managing fine. Clever little lungs. He also gets very grumpy when he has to go back on, not that I blame him!
Feed wise he's really picked up. He's up to 10mls every 3 hours, increasing by 1ml whilst he tolorates. BIG NEWS today as well...he got to breast feed for the first time. He didn't entirely understand but is trying. It was beautiful to partake in something natural and bonding with my little boy. It was an incredible moment & one I shall never forget.
Now for BIG NEWS number 2, James has been promoted. He was moved down from Intensive Care to High Dependancy. Yipee!!
Anyway it's been a good few days although we catch ourselves & are careful to get excited! Thank you again for all your prayers & support!
Please pray for another CDH baby who arrived this morning. She is yet to be named but is beautiful!
Mummy Beth xx
Posted by Michael and Elizabeth Reeve at 03:19
Wednesday, 24 June 2009
Hope you're all well & all the Daddy's enjoyed Fathers day. I'm pretty sure Mike was the most excited Daddy around!
The lovely nurses on the NNU made cards for the Dad's with a picture on. Clever baby James also went shopping & brought Daddy a card and present! Most special of all was that Mike got his first cuddle with his son last night, a very special moment. James looked so small and adorable in Daddy's big hands!
James has been doing very well with his routine & even stretched to 4 hours off Cpap at a time. His new cycle is 8 on, 4 off. Well done baby J!!
Feeding appeared to be going well but little boy had bright yellow aspirates on Sunday night so they've suspended milk feeds for now. Mummy's hoping that's a very short term measure.
We are so proud of our little warrior & I'm learning to adapt to life up here. Mike's gone back to work so it's a little harder now but nothing a few good books & lots of baby time won't solve. The consultant suggested that it's likely to be the beginning of August by the time we're discharged but it's worth the wait a million times over.
Thinking of Max's family this very hard weekend & praying for them as well as the Studdard twins.
Lots of love
Posted by Michael and Elizabeth Reeve at 01:30
Saturday, 20 June 2009
Sorry for the delay in posting, yesterday was a tough day! The night after James was extubated, they tried to give him a break from the Cpap for 6 hours. We were extremely delighted to hear this & the doctors decided on a cycle of 6 hours on followed by 6 hours off. We couldn't believe how quickly this was happening. However, it proved to be too much too soon for little one. He was quite distressed by the end of the 6 hours off & was visably struggling to breathe. The following 12 hours he was exhausted & drained, he looked poorly again & it broke our hearts.
Still being the fighter that little James is, he battled through & is managing well on a 2 hours off 10 hours on cycle. He is retaining his carbon dioxide levels but that will rectify itself SLOWLY over the coming weeks.
James has started feeds! They began on 1ml every 3 hours, which has just been upped to 1ml every 2 hours....yum yum!
This NNU journey really is a rollercoaster. The ups are so high & the lows are almost too much to bear. As James is getting more alert it's even harder to watch him live this beginning in life. We thank God for our little miracle & long to take him home...not many more weeks we hope!
Congratulations are in order for Shawn & Stephanie who gave birth to their beautiful twin girls Brooke & Kamryn. Please pray for them.
Please keep praying for our beautiful baby James.
Mike & Beth xxx
Posted by Michael and Elizabeth Reeve at 00:34
Tuesday, 16 June 2009
Just a quick update on the marvels of beautiful baby James...
I don't really know where to start, so much has developed in 2 days. Yesterday when we went to help with James' first nappy he had done a poo. To most new mums and dads that's a reason to wince, however for us it shows so much progression. It means James' bowels are now working and it meant mummy & daddy could do a real parenting job. It's crazy how excited you can get over poo!!
Next, James was taken off morphene & swapped to paracetamol. He keeps sneezing & hiccuping now. So sweet!
When it came to afternoon cares, they decided to weigh little boy. Because they were moving all the wires anyway, they decided I could have a cuddle. This was certainly a moving experience. Baby James curled his little body & legs into me and settled into the most relaxed sleep I've seen him have. He certainly knew he was in my arms & we both loved every second of it.
Finally the biggest progress... On arrival to the unit this morning we were notified of James' extubation. This means he has been taken off the ventilator and placed onto a Cpap machine, one step closer to breathing on his own...clever boy! Mike & I couldn't believe how fast he's progressing.....a real little miricle.
We're hoping to start him on a little bit of milk tomorrow so we'll let you know how that goes.
Lots of love & thank you for your love, prayers & support....keep them coming.
Mummy Beth xxx
Posted by Michael and Elizabeth Reeve at 15:41
Sunday, 14 June 2009
Well baby James is incredible!! He is doing so very well! His 48 hours post op have been on the whole very good. He had a minor blip about 6 hours after his operation when they discovered his red blood cells were very low, causing his stats to change. However, following a blood infusion & some fluids he returned to normal pretty quickly, since then his blood gases have been good. They have successfully weaned his venilation pressure from 20-19 and he is on .25 oxygen.....very good!
Now for the exciting part.....they have turned off his paralytic drug. Over the next 12 hours James will start to wake up!! He is doing so well!! Mike and I are so excited to see his little eyes open & watch him respond to us. He's likely to become alert very late this evening so I don't think we'll be going to bed ;-)
James never ceases to amaze us. He is such a 'little warrior' as Daddy calls him! God is certainly unfolding a miracle in front of our eyes & we are so thankful!
Please continue to pray for baby James' recovery, we yearn to have a cuddle & feed him!
Thank you again for all your love & support
Mummy & Daddy Reeve xx
Posted by Michael and Elizabeth Reeve at 15:58
Friday, 12 June 2009
Baby James has done wonderfully. His surgery went well & he is stable and so very brave! The spleen, stomach, small intestine & a few loops of the large intestine were up in the left side chest cavity. This is not unusual and everything was moved down successfully! They did not need a gortex patch for the hole but did need to sew the muscle tissue to his rib, again this is fairly common during this nature of repair. The surgeons seemed happy with how it went and are confident about his recovery. Obviously this is majour surgery though so we need to monitor all his bits & pieces carefully. The surgical team will check on him daily. We are so thankful to the wonderful staff here...they are nothing short of amazing!!
Since his op James has been stable & they continue to wean his care as is appropriate, he is tolerating things well at the moment.
I have uploaded an x-ray of him post op with everything in the right place....doesn't his chest look lovely & clean now?!
Today was one of the toughest of our lives & we are so thankful to God for our miracle baby boy. He is amazing beyond words. We are so proud of our little warrior.
The next 48 hours will be a chance to see how little James copes with his organs in the right place. We will let you know how this goes.
Mike & I are exhausted and delighted at the same time. We couldn't ask for more from this inspirational little chap! He is already showing Mummy & Daddy how he fights. The last 3 days he has been through so very much & we adore him more than we ever imagined! We will thank God every day of our lives for giving us the most special gift.
Thank you so much for your prayers everyone! Please keep them coming, he has some way to go before he is totally better but we have total faith that the miracle will continue.
Ashley-James wanted to model baby
Maxton's bracelet for you!! See picture ;-)
We are off to say night night to our beautiful son.
Thank you again everyone!!!
Mummy & Daddy Reeve xxxx
Posted by Michael and Elizabeth Reeve at 14:51
little James has just gone into surgery. Beth would like all the prayers you can muster for the next few hours!!!
Posted by Michael and Elizabeth Reeve at 05:33
Firstly thank you so much for your kind wishes, prayers, love & support....James is a very blessed little boy & we have been so touched! We can read your comments even though we can't update the blog remotely...my brother (uncle James) is doing a great job for us though!!
Baby James is being an absolute star. His stats remain very stable & they've only got him on 27% oxygen (room level is 21%.) For those CDH nerds....we have managed to keep him away from ECMO & nitric oxide alltogether so far....praise God. If he continues to remain stable overnight they are going ahead with his repair surgery tomorrow (Friday) at 1pm. We really need your prayers folks, they have certainly worked this far with his night nurse calling him a 'miracle baby'. Please pray as hard as you can. I have a new understanding of love now & am really yearning to take our perfect little boy home. In short......please pray!!!!!
Thank you again for all of your support & love and we'll let you know asap if surgery is going ahead.
God bless & night night.
Posted by Michael and Elizabeth Reeve at 00:28
Wednesday, 10 June 2009
Posted by Michael and Elizabeth Reeve at 15:10
Baby James has stabilised well and his left lung is "lovely and big". The plan now is to leave him to rest and recover for a few days and then the doctor's will decide if they should reduce his support. His operation will be towards the end of the week at the earliest but apparently there is no rush.
Posted by Michael and Elizabeth Reeve at 01:37
Tuesday, 9 June 2009
Mike and beth have been blessed with baby James Michael Reeve born 9:20pm weighing a little 6 pounds and a bit.
Posted by Michael and Elizabeth Reeve at 14:14
Almost there!!! Water's broken and contractions are strong and often.
Posted by Michael and Elizabeth Reeve at 11:37
Beth's induction finally got underway at around 2pm this afternoon. She seems in good spirits and "baby James is being very good and calm". The process can take some time but i'll let you all know more as soon as I do.
Posted by Michael and Elizabeth Reeve at 10:02
Well it appears I was a bit quick off the mark.
Posted by Michael and Elizabeth Reeve at 02:06
Monday, 8 June 2009
Posted by Michael and Elizabeth Reeve at 09:10
Monday, 1 June 2009
Well we are now officially 1 week away from the BIG DAY!! I'm very much hoping James decides to come before then just to make sure he's naturally 'cooked' but obviously, if he wants to stay put we're all systems go for Monday.
I'm feeling fine, hot but fine and really looking forward to meeting this little boy. I cannot believe how fast this has all gone.....it seems like yesterday we got our 'positive' result, then the diagnosis and now its baby time!
We really ask you to pray now, we have faith that God will give us with the blessing of bringing our precious baby home but please continue to pray.
Also please pray for baby Avery, she is struggling at the moment but is being an extremely brave little girl, her family needs your prayers, as does she.
Finally, a big thank you. Thank you to all of you for your prayers, thoughts and support throughout this pregnancy. The 'CDH friends' we have made have been an invaluable source to us, talking through diagnosis and birth plans and also just getting to know some wonderful families, babies and angels we would never otherwise know. We continue to pray for you all and look forward to sharing stories in the future. Also my students, friends, family and everyone else at Wintershall have just been incredible, your prayers are remembered and I pray so very hard that you will be able to meet baby James in person very soon.
Love to you all and we'll keep you posted as often as we can when little one comes along.
With much love.
Beth and Bump James......xxxxx
Posted by Michael and Elizabeth Reeve at 05:09
Monday, 25 May 2009
Firstly, and least importantly for those of you in America.........WHAT! Adam Lamburg was sooooooo amazing so how come Chris won??? I'm confused!
Secondly and far more importantly....2 weeks today our beautiful baby boy will be on his way. I REALLY cannot wait to meet this little guy and Mike is just as excited. We are aware its going to be a roller coaster but we remain faithful.
I am officially 37 weeks today which means if James decides to make an early entrance he is no longer classed as premature. Go James!!
I don't appear to be carrying any extra fluid and although I'm pretty large things all seem fine. It's really strange not having scans and appointments coming out of my ears! Still I'm seeing the community midwife tomorrow so we'll check everything is as ok as it seems.
Ruby, Jamie and Avery have all been so strong to date and they certainly remain in our prayers. As of course do Maxton and Kaden - not a day goes past when we don't think of you guys.
Well we are getting closer....both Stephanie (Kamryn and Brooke's mummy) and I are nearly there now.
I cannot put into words how much I want to be Mummy to baby James! I'm so grateful for every kick, punch and stretch I feel.
Thank you so much for all of your prayers.
Lots of love Beth & Bumpy James. xxxx
Posted by Michael and Elizabeth Reeve at 06:19
Monday, 18 May 2009
We had our final scan this afternoon...the next time we see our beautiful boy's face it will be in person!
We felt so confident going into the scan room today and had a really warm response from Amar, our Sono. Scans seem to get kind of confusing when the baby is this big, I suppose they can't see anything as clearly because he's all squashed up in there now.
Anyway it was wonderful to see him in 4d again. He has really chubby cheeks and 100% his Daddy's nose!! So handsome! We also saw his hand in 4d.....I think he has piano playing fingers.
In terms of the CDH it was hardly looked at today. I couldn't see the stomach at all but the screen was pretty full of black blobs! Amar said everything was 'the same'. My fluid levels were normal and we could actually see Baby James swallowing and moving his tongue. His growth velocity was also normal. The sonographer seemed unconcerned with the progress of the pregnancy so does not want to see me again until I actually get induced....this is where the big news comes.
We are booked in at 7am on 8th June for induction to begin. This is subject to delay if the NICU is too full. Please be aware though folks that it can take up to 2 - 7 days for little one to appear. It was stressed that we are essentially 'copying' nature and in order to be as noninvasive as possible this can take a while. We are hoping to naturally start contractions spontaneously on the way to the hospital ;-)
Please keep your prayers coming - we are feeling really blessed with your prayers and support and we cannot wait for the miracle of bringing this wonderful boy home.
Thanks for checking in & love to you all
Mike & Beth
Posted by Michael and Elizabeth Reeve at 11:10
Saturday, 16 May 2009
We had our 'prayer shower' for baby James last night. It really was the most special event. Mum set up the lounge BEAUTIFULLY and arranged some pictures of James on the 'alter table' surrounded by candles. We also printed out a list of the other CDH babies we know of who are expected this summer and put some candles around that to.
Around 25 very special people from 'our life' turned up to pray for this little boy, we were so very touched that this many people would give up their Friday night for our little family and the miracle we so desperately need - Thank you!!!!
Aside from the people who were there in body, we had people praying across Berlin (thank you to my big sister!!), New York, Texas, Saint Lucia (thank you Tessa), Scotland and France. Thank you soooo much for all of your prayers!
The evening started off with a little 'CDH awareness' to fill people in as to exactly what miracle we needed. Then began the prayers. Such powerful and special thoughts were shared and Mike and I felt a real hand of peace over our situation. Thank you so much everyone, we now believe we have the strength to carry us through this 'roller coaster'.
After this moving time of prayer we shared food, drink and the company of so many lovely people. They are committed to praying for not only us but also those others of you going through this journey.....please know you are loved!
Thank you so much to everyone who came and who prayed from afar, we were touched so deeply by your love and support.
We have another scan on Monday at which time our induction will be booked. I'm so excited to see this little strong chap on the scan agin. I'll post after that to let you know how it goes!
Thank you for checking in and please keep the prayers coming.
Mike, Beth and Baby Bump James xxx
Posted by Michael and Elizabeth Reeve at 08:26
Friday, 8 May 2009
We had another appointment at the Royal Surrey today for a routine scan. They have a new consultant there who was really lovely. To be honest she just took a really human attitude towards us and was very sensitive about the situation.
Anyway things are much the same. James is looking adorable and is a big, strong boy. He was less camera shy today and gave us some really sweet little movements. I absolutely cannot wait to meet this little chap!!!
Having said that I found the day itself really hard. As we were in the waiting room a couple was brought through to the 'sitting area'. They had found something on their routine scan. Knowing the pain they were going through in that little room was awful to watch. I guess you never really understand those moments until you have been there.
So it's a month today that our little man should begin his roller coaster....wow! Coupled with the absolute joy of getting to see this characterful little bundle is the immense fear of the CDH roller coaster. We have tremendous support and I thank you all for your prayers. Please keep them coming......little one just did a big stretch - I think he's trying to say thank you to!
Finally for those who don't know, I am a singing teacher and run a small choir here in the UK. We had our 'end of term' concert last night and the students were so amazing. They gave me beautiful flowers and sung their hearts out! We put a little 'donations bucket' out to raise money for Ronald McDonald Houses and I was once again blown away by the generosity of this small group. They are all aware of CDH now as well so it was a great mini awareness drive. Thank you so much to all of the girls, boys and their parents - an incredible group!
Thanks for checking in folks.
With Much Love!!
Posted by Michael and Elizabeth Reeve at 02:07
Monday, 4 May 2009
Firstly I'd like to say a huge thank you for your comments on our blog. It is so wonderful and comforting to know that we have such love and support - even from people we have never met. We are praying for your families to!
Please keep in your prayers the Beal family. They are expecting a little boy who has recently been diagnosed with CDH. You can follow their story by clicking on the link in our blog list.
Well we have 5 weeks to go. Its all getting scarily close now and it seems way too real. Although we absolutely cannot wait to meet our beautiful boy we are nervous about how we will 'get through' the roller coaster. Ive been watching the strength of other parents and feel somehow ill equipped for our own journey. The love I have is almost too all consuming. Still we remain hopeful that little James will fight hard and pull through. How amazing it would be to bring him home!!
They don't really 'do' baby showers in the UK although the idea is catching on. However we have decided to 'change' the tradition and start a new one ;-) We have decided to have a prayer evening for baby James on 15th May. This will be followed with nibbles ect. We just feel that getting a whole group together and praying for our little boy can only be a good thing. We will then have a 'traditional baby shower' when baby James comes home. Please keep little James in your prayers - especially on the 15th May. If any of you would like to come please do drop me an email and I'll send you more details.
Anyway thank you for checking in and for your continual support
Much Love xxxx
Posted by Michael and Elizabeth Reeve at 05:29
Monday, 27 April 2009
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 email@example.com
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!!.
Wednesday, 4 March 2009
Thank you for visiting our blog. We thought it best to keep friends and family up to date with little James's journey. We have also been so inspired by other blogs we have read and thought it our responsibility to share our story to.
Our little boy was diagnosed on the 2nd Feb 2009 during a routine 20 week scan with a left sided Diaphragmatic Hernia. This began a suprising and life changing journey for our little family.
Thank you for reading and please add us to your prayers.
Mike, Beth and Bump James xxx
Posted by Michael and Elizabeth Reeve at 13:01