Forgive The Silence

Thank you for your lovely comments following my last post. It is difficult finding the right words and blog post subjects for the one after your baby has died.

We're doing ok.

I think that's probably the best way to put it. They say the pain of losing a child never goes away, it just becomes a little smoother aorund the edges, and I couldn't have found a better description.

We have decided to leave Spain, well as a matter of fact we had already made this decision at the end of last year but the plan was that Joshua would be with us. It has been for various reasons, mainly for additional support through family and friends as Mr Frog is originally from Dublin. Also we had made contact with the Jack & Jill Children's Foundation, a wonderful organisation providing care and support for children with neurological development issues. Sadly Joshua never made it to Ireland, but we arrived 8 days ago and have now more or less finished unpacking the boxes. We are in the lovely countryside of County Wicklow, but only 40 minutes from the centre of Dublin, our new house is lovely, the school is great, the sun is shining (that probably won't last long) and we're slowly recovering from the strains of the last 12 months. We are taking things easy and are being kind to ourselves, which is the most important thing at the moment.

So on the eve of our first St. Patrick's Day celebration on the Emerald Isle, here's to the future. Let's take it an hour at a time.

Lá Fhéile Pádraig Shona Duit!

In The Arms Of An Angel

Our beautiful boy Joshua Rafael passed away on Saturday 22 January. He never fully recovered from the pneumonia at Christmas, and that combined with all the problems from his prematurity and complications at birth just meant that he had fought for so hard for so long, but it was not meant to be. He died peacefully at home in our arms.

We have had 10 months and 3 weeks with him that were filled with laughter and tears, worries and hope and he will always be part of our family. We will forever miss him and love him, but we take with us his fighting spirit and the knowledge that no matter how hard the situation was, he showed us not to despair  but just to hold on and cuddle him.

Godspeed little man, sweet dreams.

Comfort Food For A Better New Year

Eight days into his battle on the intensive care unit, Joshua is a little more stable but still on the ventilator. The doctors have reduced his sedation and we try to spend as much time with him as possible. Christmas and New Year has gone by in a bit of a blur but we still maintained some of the traditions for Luca. Today we made some comfort food - pancakes with sugar, cinnamon and lemon juice.

I have also spent some time with my sewing machine - in these last days of uncertainty, sewing is like therapy and it is very rewarding to come away with a result, something that brings colours into our everyday life. I will put some photos up in the next couple of days.

In the meantime I wish everyone a Happy and most of all Healthy New Year 2011.

Say A Little Prayer For Joshua

Our little boy Joshua was diagnosed with Bronchiolitis and Pneumonia and admitted to hospital on Christmas Eve. During the course of the afternoon his condition deteriorated and he was transfered to the pediatric Intensive Care. On the morning of Christmas Day he had to be intubated. He is now stable but still fully sedated, we're hoping to see an improvement in his condition in the next couple of days but he is still fighting for his life.

Still fighting strong

Hello there, yes we are still here, are you? Well meet Joshua, who is now 8 months actual, 5 months corrected. He finally left NICU on the 5th of August, a little more than 5 momths after being born, and came straight home. He has since been readmitted twice with bronchiolitis, each time for a week, and we have just gone through another cold, luckily he escaped hospital this time round.

The fact that he is home doesn't mean that all complications from his prematurity have been resolved, far from. He has Chronic Lung Disorder and is still oxygen-dependent, but hopefully his lungs will grow stronger and he will eventually not need the extra help anymore. He never developed a proper sucking/swallowing reflex and is therefore still fed by NG-tube which is very very uncomfortable and causes many problems for him and us. Getting him off the tube will be our objective over the next months, but it will be a hard task. Worst case scenario he will have a g-tube where he is fed directly into his stomach. The fact that he has spent so much time in hospital also means that his development is quite delayed, but hopefully he will eventually catch up. Usually for babies with lung problems the first year really is the hardest, especially the first winter when the flu season starts. All we can do is try and keep him away from possible infections, but when you have an older toddler who goes to pre-school that is quite hard.

But despite all the the problems and worries we are so glad to have him home and take each day as it comes.

Hello world!

¡Hola!

Nearly four months after my last post .... and we're still here. I thought I should really make an effort and write something - I know I've been pretty bad at posting but I have been a little busy ...  we are still in Spain and our little 'miracle baby' as they call him is improving but still in the intensive care unit in Malaga. He weighed 900g at birth (2lbs) and has now gone up to nearly 2.9g (coming up to 6lbs) - he is doing incredibly well in many ways but his little lungs are still very weak, hence the reason why he is still in hospital. He has also had pneumonia which didn't help making his lungs any stronger but for the last couple of days he managed to breathe nearly unaided. It's been a scary time so far but I am so incredibly proud of him given everything he has already been through in his short life. Initially we had hoped he would be out of hospital by his due date (which was at the end of May) but he could well be there for another two to three months. The next challenge we now have is that he has to learn to suck and swallow so that eventually he'll be able to take his milk independently whereas at the moment he is still being fed via tube.

I often miss the life I had before all this happened and I admit I don't read any of the 'creative' blogs that I used to before not only because of the obvious lack of time, but because I miss my sewing machine and my fabrics. But as soon as I walk into the ward, come up to his cot and see his perfect tiny face it's all forgotten and so worth it. 

The One Where She Has The Baby

Exactly a week ago I wrote that I would spend 7 weeks in hospital unless there were any complications .... well the next day there were. Just after lunch time I suffered placenta abruption and within 40 minutes our son Joshua was born by emergency cesarean at 27 weeks of pregnancy. It was a very scary day as we did not know if he would make it through the day, his brain was deprived of oxygen at birth and in the first hours the doctors had very little hope of survival for him. But he made it through and we have now made it through the first week. We are grateful for every additional day we have with him and take every day as it comes.

So just when I thought I would have all this time on my hands the game plan has changed again and we are now settling into a daily routine of new nursery (which the little man adores, in fact so much more than his nursery back in the UK) and then going to the hospital twice daily for the allocated visiting hours ... oh and me expressing milk about 8 times a day which really is what I do all day long, at least it seems that way.

The neo-natal unit in the hospital is fantastic, in fact if it had to happen anywhere in the world we are very lucky that this particular hospital in Malaga is one of the best places to be under these circumstances.

So again I'll keep the blog updated with progress but I'm kind of hoping that it'll involve less drama in the future!