How do you take a lot of babies for a walk? (and a new blog site!!!)

With a lot of pushers of course!

Warmer weather is on it's way - but as you can see by the layers on our kids, it's hasn't quite arrived in our part of the world. It's still fun to get outside, enjoy the scenery and take a turn on the swings. There is plenty to do, but we certainly don't need sunscreen yet!

With the new season on it's way, we are also about to have a new look for the blog. We will be moving to a fresh  redesigned site - please come with us, and continue to follow the stories of our precious butterfly babies. The new blog has been put together by our bike riding friend, Neil Clarke, and  it's just beautiful. Thank you so much Neil - you have a fabulously varied skill set, and we are so thankful that you share your expertise with us. We will be posting there from now on - so we hope to see you!!

The new address will be  http://news.butterflych.org 

Finlay Update

We have had a few people asking about Finlay - the baby boy who came to us for palliative care because of his inoperable heart condition.

Well - after two operations, a whole lot of TLC, and a heap of support from all over the world, this little boy has a different life ahead of him. His blue lips are in the past, and he is gradually starting to realize that he can actually do things now. That sounds strange - but for all of Finlay's life, he has learnt not to try too hard. His little body has quite clearly shown him that it's better to sit quietly and concentrate on breathing. Reaching out or exerting himself has been so uncomfortable for him that he has learnt not to do it.

So now we are teaching Finlay that his limitations have been removed. He is tentatively beginning to stretch his boundaries - and finding out that this is fun! It's amazing to watch him learning to live a healthy life. We are making sure we find just the right balance between challenge and re-assurance for him - we need to encourage him to extend himself, but we want him to always feel safe. What a privilege to walk alongside the beautiful boy as he rediscovers the world and his own abilities! And thank you so much to all who helped support him and make this possible.

Celebrations

Anyone have their birthday right before Christmas? Finlay does - and it seems so fitting right now that this little boy's life is saturated with celebrations. First comes the joy of his birthday, and then the magic of Christmas.
Before surgery, it would have been quietly understood that these celebrations were likely to be Finlay's only birthday, and his last Christmas. But that has changed, and Finlay has a new future stretching out before him. Our hopes for him are different now - many birthdays, many Christmases, a family, friends, school - it's exciting to wonder what may be planned for Finlay's life. Right now, we are so happy to be celebrating that he is home with us again.

 These cakes are just amazing. Looks like Finlay prefers his healthy baby food though. He got lots of presents for his birthday. His sweet ayis went to a lot of trouble to chose some lovely new winter clothes for him. Our children are not just a job for these precious ladies - they truely love each child that they care for.

He looks so handsome in the light of the Christmas tree. We can see that every day, he is becoming stronger and less afraid. He already has all the ayis doting on him. This boy has a gift for winning hearts.

Taking in the beauty of the Christmas tree. Bright lights and decorations are so mesmerizing to little ones!

We are so glad that you are home, Finlay.

He's home!

Finlay is home again, and we are so thrilled that he is back. Last time he arrived, it was to die. This time, he is arriving to LIVE!

He looks very tired after his big journey and even a little shell shocked. Poor Finlay has had a lot of change in the past few months. He came from the SWI to Butterfly Home, Then just as he settled in, he was off to Shanghai. His surgery was an incredible blessing, but major surgery is traumatic, even for big people. For a little baby struggling with change, it's a very big trauma.

 Lots of our goals for him now are emotional ones - it's all about trust, trust, trust. Does that sounds like a recurring theme around here? We love medical miracles, but our kids are hurt children and they need miracles of the soul too. We look forward to seeing Finlay open up and let us love him, and we can't wait to hear another little boy's laughter ringing through this home.

Thank you so much to all who have made this story possible. If you would like to donate to Finlay's medical fund, please contact us. info@butterflych.org

Soon Finlay!

We have had news that Finlay will be on his way home very soon. He has been cleared to travel and should be arriving here very early Thursday morning. We are still so amazed and thankful for his healing.

Just last month, this little boy was facing a sad reality. He could only expect to get gradually weaker, until his body could not cope any more and then he would die. We were prepared to stand by him through that journey - to love and support him no matter what the outcome. We would have make sure Finlay was wrapping in tenderness every moment and that he never had to suffer alone.

 But how wonderful when the story is rewritten! How exciting that now we get to watch him grow stronger and start to enjoy being a little boy! We look forward to encouraging his development and seeing him discover things he never noticed because he was so sick. This little boy is going to have more energy, he is going to be be more alert, and he is going to be making up for lost time. I think Finlay will only continue to amaze us!

 Please keep him in your thoughts as he travels - it's a big journey for a little guy who has recently had major heart surgery. We will feel very happy when we finally get him back here and we can wrap him up in cotton wool for just a little longer! And we can't wait to kiss those pink fingertips and see the difference in him for ourselves. 

We are still short on funds to cover this miraculous surgery which has restored Finlay's hope, but trusting there will be provision for this. If you would like to share in giving Finlay the best Christmas gift ever - LIFE - please contact us.
info@butterflych.org
And we will definitely be posting pictures when our cute boy arrives back. Stay tuned.

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Finlay update.

 Please keep Finlay in your thoughts today. He's been moved out of intensive care, which is fabulous. But now the poor little boy has a chest infection. That's not good news when you are still in recovery from a very large heart surgery. We are still hoping to have Finlay back with us in about ten days, but he does need to get over this infection without any complications. Thank you to his friends all around the world, for holding Finlay up through his recovery.

Finlay looks good in pink.

We have photos of Finlay from last week to share. Look at the colour of his sweet lips.

 He is being given oxygen - that's the green tube in his nostrils - but his colour still looks so much better. Those lips are almost rosy. And it looks like his hair has grown too. Anyone know if better oxygenation promotes hair growth? Maybe there's a thesis in that for somebody.

 His cute personality hasn't changed, as you can see by this picture. Not sure what he's doing with that phone - maybe he's trying to call and tell us he's ready to come home!
Not yet Finlay. Since these pictures were taken, he's had another very large surgery to correct the transposition of his great arteries, and repair the large hole in his heart.. Right now he is still being ventilated, and looking a lot less perky. But hopefully it won't be too long, little buddy - we can't wait for you to come home either.

Finlay's progress

We are excited to report that Finlay is continuing to improve. Of course, recovery from heart surgery was never going to be a walk in the park, especially when you are just a baby. But the little guy is up for the challenge, and his ayi is right there supporting him through everything.

He is out of intensive care now, so we celebrating that step with thankful hearts. Unfortunately he is still having some trouble with pain and it's making him a little fretful. His ayi is finding that he is most comfortable in her arms. Lots of gentle touch seems to help to soothe him. I guess just like all of us, he needs to know that he is not alone.

At this stage, he is still on schedule for his second surgery next week. What a miracle for an inoperable child!  Please join us in thankfulness for the great progress so far, and hope that his pain will be managed well. We will let you all know when his next surgery is scheduled.

Good news from Shanghai

We are thrilled to be able to share that Finlay's first surgery has been a success.

 Before the operation, the surgeon even suggested that the whole repair might be done at once, with no need for further surgeries. While that sounded great to us, it isn't the way things have worked out .... but we are singing from the hilltops anyway!

Our little guy WILL need a second surgery, but he is already looking SO much pinker after the first one. Of course, he is a small boy recovering from a big surgery, so he is not exactly up and out of bed right now. He is sporting some pretty unfashionable looking ICU wear - namely a lot of tubes and drains. But there is a flush of colour coming back into his fingertips, and those little blue lips are on their way to becoming positively rosy. His ayi tells us that pink looks pretty good on him!

At this stage, the surgeon is sounding very optimistic. He even hopes that the second surgery can be done in about 2 weeks. This is much faster than some of the earlier estimates. We are pleased about this, but we still understand the need to let Finlay's body heal before planning too far ahead. It's important to allow his heart time to respond to the new plumbing arrangements.

 Finlay's ayi is doing well too. She adore this little boy, and is excited for the new hope in his life. Even so, it's hard to watch some-one you love go through major surgery, and it's hard to be in a big city so far from home. Keep Linda in your thoughts in the weeks to come - there is still a long road ahead and she knows she needs to stay strong and cheerful for Finlay.
We still do need to raise funds to cover Finlay's operations. Please contact us by email if you would like to help: info@butterflych.org

What's up with Finlay? (now updated with pictures)

HOPE - that's what's up !

We are so excited to find out that Finlay is not inoperable after all. Of course, there is still a long way to go for this our little guy, but we are choosing to celebrate each step. And right now, we are celebrating HOPE.

Finlay's condition is a transposition of the great arteries. This is a serious situation, and in a perfect world, his heart would have been operated on at birth. Sadly, we all know the world is not perfect (yet), and now Finlay is almost a year old and still without surgery. The abnormal way that blood flows around his heart and lungs means the left side of Finlay's heart is underdeveloped and weak. So his heart repair has to be done in 2 stages. The first stage is pulmonary artery banding and a shunt. Then he will be given some time for his left ventricle to build up strength, before a second operation to switch the blood vessels to their correct positions. The time between surgeries could be as short as two weeks, or it could be more like three months. And his heart muscle will need to respond well for the second operation to even be possible.

Finlay's first surgery will be later this week, perhaps Wednesday or Thursday. Please stand with us as we ask for healing for this little boy. It is our great hope that he will recover strongly from this first surgery, and that his little heart will respond properly, thus allowing the second operation to go ahead. The surgeon has stressed to us how dangerous this procedure can be, so we are especially asking that our friends around the world hold Finlay in their thoughts this week.

 We are thankful for the surgeons in Shanghai, who are willing to give him this chance, and the SWI, who also want to see him healed. The estimated costs we have been given for the two stages of the repair are around GBP 10 000, or around US$15 000. It's a huge amount of money, but we are trusting that there will be provision for these expenses. If you would like to be part of the gift of life for Finlay, please contact us or donate via the website.

We hope to be updating Finlay's story with news of his Stage 1 operation soon!


UPDATE: Finlay's ayi has sent these pictures and we couldnt wait to share them.

 Doesn't he look cute? There is more than a dash of mischief in this little boy.

 His blue lips show how much he NEEDS this surgery. He has already been waiting too long.

Uh-Oh. I think this might be the look he gives when he is tired of having his picture taken. But even when he's grumpy, he's still handsome!

Finlay is on the move

Our newest little butterfly, Finlay, is on the move. He has only arrived recently and his severe heart condition is supposed to be non-surgical. When he was smaller, doctors felt that any operation was too risky and unlikely to be successful. He was given no choice but to wait....wait until his little heart couldn't keep up with the demands of his body for oxygen anymore.
But Finlay kept fighting, and slowly his little body grew. He's been sent to us for palliative care, but something tells us he is not quite ready for that yet. He's bigger now, and trying hard to learn new things, even though he gets short of breath very quickly. Eating is a new skill for him - until a few weeks ago, he took all his calories from a bottle. Now he is discovering taste and texture. Just like any little boy, he's a bit of a food critic. Some tastes are a hit, and others ...not so much! But he's keen to keep trying and his body is responding beautifully to the great nutrition he is getting. He even looks a little bit mischievous these days.

On Tuesday, he left with his ayi for Shanghai. They travelled on the train and Finlay was a little trooper. He will be examined by a cardiac team there, and we are hoping like crazy that they will have good news for us. Regardless of the outcome ... we just know this little boy deserves every chance. Too many people have given up on Finlay already.

We need to raise the funds to cover Finlay's chance at healing. The costs of his medical bills and travel expenses for this trip will come to 5000rmb ($785 USD or 500GBP), and we are hoping for support to meet that need. You can email us, or donate on the website if you would like to be a part of Finlay's story.

Hallo Finlay

Jonathon is settling in wonderfully with his foster family. It’s great to see him learning new things every day and soaking up the love which surrounds him. Being fostered by an incredible family is the best preparation in the world for the day Jonathon is adopted, and welcomed into his own family forever.
Jonathon moving into foster care is also great in another way. While he enjoys the benefits of family life, his cot at the Hospice is now open to another child who is truly in need of specialized care.
So, this week we say hallo to precious Finlay. He is a lovely child, with a complex congenital heart condition. At only 9 months old, his eyes already reflect the trauma he has experienced. When he was 3 months old, he came to the SWI after being abandoned. Not long afterwards, he made the long journey to Beijing with orphanage staff for a cardiac assessment. Sadly, hopes for restoring his health were shattered when the surgeons gave him little hope for survival. Now he has come to us, and we have welcomed him with open arms.

He really is a sick baby. There are many times when his breathing is laboured and it’s hard to listen to him struggle. And yet – he wants to reach out and connect with the people around him. He’s alert and he smiles when you talk to him. He enjoys being cuddled and he seems to like watching TV. His first meal at Butterfly Home was lovingly prepared by Daphne, and Finlay appreciated that delicious and healthy food. His heart may not be functioning as it should, but this little boy is so much more than a heart condition.
We can’t see what lies ahead for Finlay – like every one of our kids, he will write his own story. We do know that we will do whatever we can to help him – starting with a second opinion about his heart. We want to explore every option for our newest butterfly. This time, we’ll be talking with doctors in Shanghai. We’re hoping for good news of course: a better prognosis, and a medical team willing to operate. But no matter what – we will treasure Finlay and show him every day that he is loved. His sweet smile will lift our hearts, as we hope and pray for his to be healed. Stay tuned …. Finlay’s’ story is unfolding.