Day 72 - Cardiac check-up

Jessica had her cardiac check-up this afternoon and we were pleased to be told that her heart function is stable.  She is gaining weight beautifully and getting taller and her oxygen saturation levels are remaining around 78-80 which is normal for her.  With the appointments being spaced out, the changes in her development between them become so clear when watching her playing with the toys in the waiting room and interacting with the other children.  It is so lovely to see how much she uses her imagination now and how far she has come over the last couple of years.

Day 57 - Happy heart day, Jessica

Today is one of Jessica’s heart days – it is two years today since she had her last open-heart surgery, the Glenn procedure.  It is amazing to look at her today and see how far she has come – we have been so very blessed.  Her recovery from her Glenn was quite rocky as she had parainfluenza and a wound infection after her surgery, but since then she has gone from strength to strength.  She will still need another big operation, the Fontan procedure, at some stage but the cardiology team are hopeful that it will not need to happen this year.

Day 48 - Children's clinic leaflet

Another one of the fab charities we try and support is Alexander Devine Children’s Hospice Service which supports children with life-limiting conditions and their families.  Lucy, our community children’s nurse, is an Alexander’s nurse and will provide respite care for Jessica should we need it, as well as visiting regularly to check her sats and weight.  The information leaflet for parents and carers produced by Alexander Devine has one of my favourite photos of Jessica taken at the children’s Christmas party in 2012.  It shows her with a duck hat on her head and a big smile on her face.

Happy heart day

It is two years today since Jessica had her second major open-heart surgery. Today we have been putting on a concert to help fundraise for the paediatric intensive care unit where she was treated and we managed to raise £376 which was great. We are so very thankful to all the medical team who have looked after Jessica – without all the wonderful care she has received, she wouldn’t be here today. Watching her today and seeing our beautiful brave little girl running around and dancing on stage is such a huge blessing and we thank God every day for her.

Cardiac check-up

Had Jessica's cardiology check-up today. They are quite spaced out now (about every five months) which I guess is quite a good sign although the community nurse visits us once a month to check Jessica's oxygen saturation levels and weight. All seems to be well today - Jessica's sats were a little low initially but then picked back up to the usual levels. She was very chilled out during the heart scan (having a DVD playing was very good distraction!) Apart from not being able to get a good view of Jessica's lung arteries, all looked good on the scan.

A little bookworm

I love watching Jessica sitting on her chair and chatting away to herself as she 'reads' one of her books. She looks at the pictures and points out things that she can see. My favourite is when she sees a picture of a cat which she calls a 'meow meow'. I live the fact that at two years old, she is already a bit of a bookworm, that she already seems to have inherited my love of books. Some days she will go through every book in her bookcase. Such a joy to watch her enjoying so many different books.

Ready for half term break

Next week is half term which means that the toddler groups we go to regularly will not be on.  I wasn’t sure that I’d manage to take Jessica to her regular groups right up until the half term break given Pod’s due date but we’ve managed to get to all of them.  I’m glad we made it to Tiny Talk this morning as it was a fancy dress session and Jessica got to wear the Sully costume I bought her for a fancy dress party earlier in the year (which she missed due to ending up in hospital with gastroenteritis).

A little trip to A&E

As the weather was nice this morning, I thought it would be good to take Jessica to the park. Unfortunately on the way home, she tripped and fell on her face resulting in quite a nasty cut on the inside of her lip. After discussion with the cardiac nurse about the risks of endocarditis, it was decided we should head in to hospital to get it checked out and so we had an unexpected trip to A&E. Thankfully, it didn’t need any stitches and the doctors don’t feel that Jessica needs antibiotics so hopefully it will heal without any problems.

A little bookworm

I have always loved books and it seems that Jessica has inherited my love of books too which is great because they are very easy to keep in the change bag for keeping her occupied when we are out and about. Over the last few days she has discovered she can reach the books on the chest of drawers next to her cot. It's great because she'll happily sit and look at them when she wakes up and I get to doze for a little while! Am making the most of the extra sleep while I can still get it!

Keeping going

I was feeling quite tired and lazy this morning and felt quite tempted to bail out of going to Stay and Play. Two things made me get up and make the effort though. Firstly (and most importantly) it is good for Jessica to get out of the house and have the space to run around and the chance to play with other children. And secondly because I have now reached the stage where missing any of my regular groups potentially means that people might start getting unnecessarily excited and think that Pod has made a bit of an early appearance.

Wonderful words

Jessica’s speaking vocabulary is continuing to grow at a rate of knots.  New words over the last few days include ‘beads’, ‘turtle’ (was quite impressed by that one!), ‘meow’, ‘egg’, ‘crab’, ‘flower’, ‘keys’, ‘tea’ and my favourite by a long, long way – ‘mummy’.  Jessica has been able to say ‘mum-mum’ for quite a long time but to hear her saying ‘mummy’ is just the most beautiful sound ever.  Particularly when she is wandering around saying it over and over again – love it!  We’ve also added ‘daddy’ to the repertoire too – although she still prefers to say ‘da’ at the moment!

Speaking and signing

Jessica’s speaking vocabulary has really come on leaps and bounds in the last couple of weeks. We have been getting new words pretty much every day and today we had four new words: ‘towel’, ‘four’, ‘five’ and ‘six’. She is also starting to learn to count – when asked ‘what comes after one?’, she will reply ‘two’ and ‘what comes after two?’, ‘three’. Her signing vocabulary has been very good for a while but she picks up new signs very quickly now too. It is so wonderful to watch her developing new skills and seeing how pleased she is with herself!

Jessica's 2nd birthday party

We have had a lovely family birthday party for Jessica today at Grandma and Grandad’s house (they have a very big garden which has been fantastic for all the children to be able to run around in). We had a bouncy castle which the children absolutely loved and as usual I ended up doing enough food to feed the five thousand. Jessica enjoyed seeing the family and playing with her cousins and has had another lovely day. We still have lots more presents for her to open so her birthday celebrations will continue to last for a few more days!

Jessica's 2nd birthday

Jessica has had such a lovely second birthday – she enjoyed opening her presents and cards, playing with her new toys, seeing her birthday card being read out on CBeebies (although I think Mummy was more excited about that one!) and all the visitors who dropped by. We had a little tea party in the afternoon with one of her friends from the baby signing class who is a couple of months younger than Jessica which was great fun. Jessica loved her In The Night Garden birthday cake and was very quick to pull the figures off and start eating them!

Out of the mouths of babes...

Jessica is generally very good but recently I have started using the ‘3 chances’ system if she is being a pickle. If she’s doing something and I tell her ‘no’ and she carries on, I say ‘that’s one’ and warn her that twice more and there’ll be a consequence (e.g. going indoors when playing out in the garden). So far we seem to always get to three and the consequence but I think it’s starting to sink in as yesterday she was wandering about and saying ‘no’ and holding up her finger and then saying ‘one’ which was very funny.

Preparing for Pod

I’ve started preparing a little more for Pod’s arrival. The Moses basket has been brought down from the loft as have Jessica’s newborn baby clothes (the unisex ones anyway) which have now been washed and are hanging on the line to dry. I can’t believe how tiny they are, how tiny Jessica once was and that she will be two in just a week’s time. Where has that time gone? What a blessing it has been to watch her grow from that tiny baby in intensive care to a happy toddler who seems so healthy and brings so much joy.

A little walk

Jessica took her first walk into the village today – only 5 minutes’ walk away (at my speed, that is!) but still a fair walk for those little legs of hers. She loved it although did wreak havoc in the pharmacy by knocking the boxes of plasters on one of the shelves which was just at the right height for her to reach. Thankfully, the lovely ladies in the pharmacy know us quite well and were very understanding! The word ‘no’ doesn’t always work as well as I would like sometimes! But we did enjoy our leisurely walk there and back.

A fun few days

They say all good things must come to an end and so it was with the visit from my twinny as she and my nieces headed back home today. It has been such a lovely few days - we have enjoyed picnics in the park, a day out at the open air museum, an afternoon of baking cookies and cakes, fun in the garden playing with the ball and splashing in the paddling pool. The girls have all had such a fun time together and it has been such a joy to see how much Jessica loved being with her cousins.

A day at the museum

Hubby is away this week working on an event in Cologne but my twin sister and two nieces have come to stay for a few days which is just lovely. Jessica absolutely adores her cousins and is loving having them around at the moment. The three of them are so lovely together and my nieces love helping out with Jessica – they are even happy to change stinky nappies which is fine by me! We have had a great day out at Chiltern Open Air Museum today – the girls loved exploring the old buildings, making beeswax candles and seeing farm animals.

Friends of PICU family fun day

Have had such a lovely day with Jessica and her godmummy Katy at the Friends of PICU family fun day . Jessica won first prize in the fancy dress competition for her octopus costume and it was lovely to see a couple of the people who have looked after Jessica on PICU when she was a little baby. We also got to meet Erin, another heart baby whose journey we have been following, along with her parents and big brother and it was so lovely to finally meet them all in person and see how well little Erin is getting on.