Sunday, 28 April 2013

What to say!

Some life journey's are worth the climb to the top
I have been thinking of what I could say about where we are up too particularly in regards to my little bug, Faith. This is hard to talk about as it is something I am not happy about and want to just keep pushing through each second and each minute with the hope of a happy ended at some point. Avoidance!

My heart hurts when I say Faith has her NG tube back, has had for 6 weeks now. Why? Because she wasn't able to eat enough orally to sustain her weight and with so many UTI's it was a uphill battle. But in saying that I think, no I believe, she could have done it if the hospital had helped us more when we were last there in regards to other options. They pushed and pushed for a NG tube and even when Faith drunk the formula they wanted it wasn't enough. We pleaded and pleaded but they gave us no other option, they were not going to let us go home without one. I am sad, I am angry, I am grumpy but nothing changes the fact she has one and if I could, I would go back and ask for other options and help. Yes, she is gaining weight consistently now, but there are consequences. For example:

Faith no longer sleeps through the night (sleep, sleep what is that?).
She has tube feeds every two and half  to three hours (it was two hourly so not so bad now).
We can't go in the car by ourselves because she rubs her nose and then vomits and the tube is coming out her mouth.
No longer can we go out in the morning, the formula causes tummy pains, all our outings if we are able, are in the afternoon (this isn't a massive concern to doctors as she is gaining weight and they can't find any allergies. How I miss the blended diet!).
A vomit at least once per day - caused by rubbing her NG tube

this list goes on.....

Faith's life is harder than it was when we had the NG tube in last year. But the wonderful thing is she is still eating orally but not much as the tube aggravates her swallow. She is getting stronger and putting on weight.

This all leads to the next BIG life change, on 9th May, Faith will be having a bard button surgically inserted. It means no more NG tube and she can then eat as much as she wants orally and then we can top her up through her button. So that is good but I do really really wish we were given other options. I don't feel comfortable with it but no one seems to offer us anything else. There is no second opinions due to where we live and we already travel 3 hours, but with a NG tube it is even longer to get anyway. It's in God's hands!

Saturday, 13 April 2013

Finding joy in the rain!

It's raining and raining today but among my longing to have a sunny day I am reminded how many blessings surround me. With the sun hiding its shine, it is dark enough to light some homemade candles and stop and watch the rain fall and my mind wanders. The leaves on the trees are preparing to fall as winter is coming and this year we have our own wood fire to sit around. Here are some pictures of the rain falling on my garden and I couldn't resist including the picture of the pink gerbra's that arrived with a friend to cheer our day. Blessings are everywhere!

Thursday, 4 April 2013

Hospital Adventure Continues - Day 9 and home!

Just had to share this image!
I find people watching a interesting past time in hospital. One of my favorite encounters was when Faith and I were heading to the lift and as we went in 6 or so older looking ladies followed. They seemed to come from no where, at first as usual, my mind is elsewhere, but something drew me in. I gazed up and I didn't just see some older ladies seasoned with salt but angelic looking ladies and while they fussed over Faith and in the moment or so that followed I realised they were nuns, heading to the convent. They looked so peaceful, kind and genuinely content. Just as fast as it began it was over and the nuns left, sayings God bless the little one. I will never forget the peace and calm I experienced when I was around them. Something I longed for in my ever changing situation.

Highlights of our day was a visit from the pastoral care worker and last week he had invited us to a Lent service and  we said that we would go not realising today's was to be held in the adults hospital and tomorrow was the children's. We got confused with the days (as time floats away in hospital) but decided to attend none the less. So off the 3 of us went, yearning for some peace. Today Faith, hubby and I attended a Lent service, never have we before but felt spiritually low so decided to go. As we sat in this small chapel nestled among the chaotic hospital we listened quietly and for those minutes that past, peace filled our hearts and I had peace even if fleeting.

Somethings are meant to be and we are meant to be in a specific place at a appointed time (serendipity if you will) and today was one of those moments. The lady sitting behind us was an old colleague of hubby's. The lady's  tears flowed like a waterfall and I wanted to do was give her a big hug, I could see the hurt and weight of her burdens as I looked into her eyes. She said she had a 11 week old daughter who was suspected to have meningitis but didn't know whether it was viral or bacterial yet. For a brief moment I remembered the pain of having a relatively new born in hospital and the fear that took over all logic and reasoning. We parted ways but as we knew her pain we thought of how in some small way we could help as others have done for us. So we left a small gift for her and her little baby. The next day as we returned to our room after one of our many outings to escape the ward we found a note and gift. It said your prayers were answered as the little one is improving and it wasn't what they feared and they were heading home. And a few days later we were home too.