There but for the grace of God go I…..

A week after her discharge from Birmingham after her Kasai I took Hannah for her first (of many) blood tests at the phlebotomy clinic at Coventry and Warwickshire Hospital. One of the technicians noticed that Hannah had Biliary Atresia from her form. It turned out that one of the other ladies who worked there, named Jill, had a new granddaughter who was at that time being tested for Biliary Atresia, just a couple of weeks younger than Hannah. Jill came and chatted to us and told me she had gained comfort from seeing Hannah looking so well just a couple of weeks after her Kasai.

We were having weekly blood tests at that point, and I found out that this little girl did have BA and had undergone the Kasai, the surgical team from Birmingham having flown out to Belfast to perform the operation.

Every time Hannah has had a blood test there I have enquired about ‘Jill’s granddaughter’ and knew her Kasai had failed and she was waiting for a transplant. At our last visit on 3rd June I was told that the baby was very poorly, was in Birmingham and had needed to be ventilated.

I have thought about this little baby and her family constantly for the past 10 days, and said so many prayers for them. I was so surprised to see a post on CLASS last night about a baby from Northern Ireland called Erin who had got her liver after her parents were told she only had days to live. I am certain (after a little research and help from Angie) that Erin is ‘Jill’s granddaughter’, and I am filled with joy that she got her liver in time.

Erin is a couple of weeks younger than Hannah, her Kasai was performed by the same surgical team, at about the same age. What has made the difference? I guess the Lord has decided that this is not what we have to deal with at this time, and I thank Him for that from the bottom of my heart.

Many people do not seem to realise that Hannah’s post Kasai course has been fairly remarkable so far in its absence of complications and is not what we expected to happen. It is also easy (but not for me or Andy) to forget that her liver is still swollen, that her liver numbers might be good but are mostly still just within or outside the normal range and that portal hypertension is a strong possibility. I cannot help but feel that one day the ‘honeymoon’ must come to an end. I try to be optimistic and I do believe that Hannah can live a normal life without complications of liver disease and/or transplant. However I know the chances of that happening are very small, and try also to be realistic. Today I learned of a 31 year old with BA, who has been healthy until recently but now needs a transplant. This brings mixed emotions; on the one hand “We’ll never be free of this”, on the other, we would grab 31 complication free years with both hands and not let go.

In the meantime, I just give thanks to God that He has not decided to lead us down that path at this time, and pray for all those whom He has.

My babies are growing up

This evening Andy and I went to a ‘Parents Information Evening’ for the nursery class Caitlin is starting in September. This time next year we will be preparing for school. Where is the time going??? Bring it back! Isn’t it only a month or two ago that she was a pink dot on a pregnancy test (we did two to make sure), a growing bump, grinding her head against my pelvis in the last weeks of pregnancy? A few weeks since we learned about breastfeeding, nappies, baths, and unconditional love together? Surely it was only last week that she first said ‘Mama’ and toddled her first few steps? And only yesterday that she first met her baby sister? I think it must always feel like that. Where did this grown up person come from? Where did my baby go?

Talking of baby sister, my tiny yellow sick baby also seems only a heartbeat away, but at the same time a million miles. Every day she gets closer to being a little girl and further from being a baby. She crawls on hands and knees now, can pull herself up to kneeling and can sit herself back up. She babbles and smiles and laughs and squeals. Soon she too will be walking and talking and ‘Baby Hannah’ will be gone forever, just like ‘Baby Caitlin’.

I suppose that is what it is like to be a parent. Every day is a mixture of joy and sadness for today, hope and fear for tomorrow and nostalgia for the past. I want to try harder to enjoy each day for what it is, and not become so weighed down by trivial things. I wish I could capture the essence of certain moments, but I can’t, so all I can do is try to focus on the miracles that happen around me every day and allow myself to wonder at them, and spend less time worrying about the laundry.

The cat that got the cream...

I feel like a little girl at Christmas – I have new toys!!

On Saturday my new laptop finally arrived. It seems strange that after so many years of using computers, I have never had one of my own before(unless you count my Spectrum 128!). Now I can use the PC during the evenings and stop wasting time on it during the day! I have been very good so far and have been leaving it switched off all day. I haven’t used Andy’s PC either – feeling very self disciplined!!

I am looking forward to starting some of my planned projects – the family website, a UK Biliary Atresia discussion forum, getting myself better organised, being able to keep up with my emails, post more blogs……being a laptop I might also get back into watching Eastenders!

Today I went to purchase my second toy. Anyone who knows me well will have heard in minute detail of my search for the perfect solution in transporting the girls without getting in the car. After months of deliberation and research my new friend is the ‘Nipper Double’ pushchair! It’s light! It’s easy to push! The girls have enough room! The ride is smooth! I love it! (It doesn’t fit through the front door, but who cares, we’ll go round the back or fold it up.)

I can’t wait to go for lots of lovely long walks and plan to take full advantage of the lovely weather forecast for the next few days.

I’m feeling very lucky to have two things which will make so much difference to my life.

First post from my new laptop!

At last - I have my own computer for the first time ever! (apart from my Spectrum 128 - does that count?) No more waiting for Andy to go to pool before I can blog! I am tired now as I have been catching up on my email, but I will definitely be posting much more often from now on. I love my new computer!!!!!