Six months on

It has been six months since Jessica died. Coming up to the six-month milestone has been a very emotional time for us all. We have had some of our hardest days since Jessica’s funeral. This year’s Little Hearts Matter autumn memorial walk took place on 13th October. It felt like an appropriate way to spend the half-anniversary of Jessica’s last day. Sophie enjoyed decorating paper hearts to hang on the LHM tree and planting bulbs around the bench. It was also lovely to hear how popular Jessica’s heart operation books have been and to know that her story is still helping others.

This morning, we received a letter from St Peter's hospital informing us that they are carrying out an investigation into the care Jessica received shortly before her death. This process is expected to take about four months. One of the many questions that we have asked ourselves since Jessica died is whether she would still be here had she not been discharged that day. Perhaps this is a question which may now be answered. The findings from the investigation won't bring Jessica back of course, but perhaps there are improvements in care which could be made as a result.


We have also spoken again to the team at Southampton and are hoping to meet again with them to discuss the findings of Jessica’s post-mortem. The information we received was very limited and we are hoping they can obtain a few more details.


Louise has continued to blog about life after Jessica and our grief journey over on her blog and has found this helpful. Last week, her blog won a Brilliance in Blogging award in the Inspire category.


This weekend Louise's brothers and nephews are running the Great South Run in memory of Jessica and fundraising for Little Hearts Matter. We will be going along to cheer them on. If you would like to support them, you can find their JustGiving page here.

A busy couple of weeks

Jessica had her monthly check-up with the community nurse at the end of last week and her sats were up to 82 which is the best they’ve been for a little while.  Her weight was a little down from the previous weigh-in at 12.4kg (27lb 4.5oz) but she’s still following her centile line nicely.

We are now at the stage of having to be very careful about what we say as she is definitely starting to repeat lots of things now!  Watching her playing with her dolls and saying things like “Eat dinner, have cake… …then no cake!”, “don’t touch, be careful!”, “hello Sophie, nice to see you!” and my personal favourite: standing at the bottom of the stairs and calling “Get up Michael!”  We’re definitely starting to see all our little pet phrases coming right back at us!

We enjoyed spending time with other members of our church family last weekend when we went away on the church fellowship weekend.  Jessica and Sophie both enjoyed spending time with everyone there and it was lovely for us to spend time away as a family.  We took a little detour on the way home and visited one of the Paralympic gold postboxes in Oxford which brings the total of these up to 24 (out of 46)

Nanny came to stay recently and looked after Jessica whilst Mummy and Daddy took part in the concert at church which helped to raise £112.60 for Friends of PICU.  It was lovely spending a few days with Nanny and then visiting family when we went to stay with Nanny for a few days when she went home again.

We are looking forward to having our first family holiday abroad next month – going by ferry and car to the south of France to visit friends there.  We had to do quite a bit of phoning around though to arrange travel insurance for Jessica – we found the travel information leaflet and list of possible insurance companies from Little Hearts Matter was very helpful with this.  The lady we spoke to at the insurance company we finally went with happened to also be a heart mum of an 18 year old who was treated at Southampton by one of the consultants who we knew from Jessica’s time there!

  

Jessica’s story has recently been mentioned in the Children’s Hospital Network Annual Review booklet and we received a few copies of this in the post.  Mummy also wrote a guest blogpost last week for the Little Hearts Matter blog which shared some of our experience of how Little Hearts Matter have helped us as a family since Jessica’s diagnosis. 

Three years on...

It’s three years today since the appointment at Great Ormond Street where we were told that Jessica was unlikely to be suitable for surgery and our world fell apart.  In the midst of our devastation, we held on to one thing, the knowledge that God was bigger than it all and we prayed for a miracle.  Three years on and Jessica is here, bringing us so much joy and we thank God every day for blessing us with our beautiful little girl.

 

It has been a busy couple of weeks since our check-up at Oxford.  We have been catching up with Tany and Amy, enjoying trips to the park and afternoons painting pictures of “animals” as well as helping Mummy celebrate her birthday with a day out at Legoland.  Jessica had a lovely time and particularly enjoyed the play area in Duplo Valley.  She enjoyed all the walking around too and didn’t use the buggy at all whilst we were there.  We also had an eventful day out shopping yesterday with Mummy when we got trapped in the lift for 25 minutes (and seemingly unable to make contact with the outside world for the first ten which was quite scary) – fortunately though Jessica didn’t seem too bothered and was quite happy sitting on the floor in the lift with some toys whilst we waited for someone to get us out.

As always, she continues to be very happy and very, very chatty (latest phrase is “that’s better!” which gets used quite a lot!)  We are starting to see a few signs of sibling rivalry starting to emerge now that Sophie is getting more mobile and able to get at more of Jessica’s toys although most of the time they are still very lovely together and Jessica loves to give her baby sister cuddles and kisses (and then sit on her which is less good, but Sophie doesn’t often seem too bothered by this!)

Mummy, Daddy, Grandma and Auntie Marlene are taking part in another fundraising concert for Friends of PICU at church this weekend (Saturday 17th May, 7.30pm at Christ Church, Uxbridge) – more details are available here – please do come along and support us if you are able to.

Cardiac check-ups and Christmas parties

 

Jessica had her cardiac check-up at Oxford yesterday and on the whole, she is doing very well. Her sats were a little on the low side when they were first checked (around 72) but then when they were rechecked after her echo were back up to the usual low 80s which was reassuring. Her heart function looks good but the team were unable to get good views of her left pulmonary artery. They are not concerned about this as Jessica appears to be well at the moment, with reasonable colour and plenty of energy but they want to have a better idea of how well her pulmonary arteries are growing before they start thinking about her Fontan and so they are considering how best to get the information they need. It may be that they can check the pulmonary arteries through doing a CT scan or perhaps Jessica will need to have a cardiac catheter early in the new year. We will keep you updated when we know more about what the plan will be.

 Jessica is gaining weight well – she weighed in at 11.7kg (25lb 12oz) yesterday. Her cough seems to be much better now as well and she has been her usual happy self over the last couple of weeks. She is sleeping much better now and is enjoying being a big sister – Sophie gets a lot of love from her big sister and Jessica likes to try and play with her. The other day she was holding Sophie’s hands and guiding her through the actions to ‘Wind The Bobbin Up’ (very gently!) which was just delightful to watch. She is getting much more imaginative with her playtime now and it is lovely to watch her pretending things – using wooden puzzle pieces as a phone, making her ‘In The Night Garden’ figures ‘talk’ to each other, cooking things on her toy stove and telling us they are ‘hot’ – so lovely to watch.

We have had a lovely day today at the Friends of PICU Christmas party (Sophie’s first ever party) and Jessica enjoyed herself very much. It is lovely to see how much more she enjoyed it this year – she really took an interest in what the children’s entertainer was doing and did some dancing and thoroughly enjoyed seeing Ellie the elephant and Father Christmas. Sophie, on the other hand, slept through it all!

We have another Christmas party to go to in a couple of weeks’ time (the Families of Ocean Ward party) and Jessica will also be taking part in our fundraising concert for Friends of PICU – ‘Spirit of Christmas’ which we will be performing at Christ Church in Uxbridge on Saturday 14th December. More details are available here if you are interested in coming along. Sophie will also be making her stage debut in this concert!

Two years into the journey

Today is the second anniversary of the day we found out about Jessica’s heart. What a huge blessing it is to be here today looking at our beautiful little girl who has now grown into a very active toddler and brings so much joy into our lives with her big smiles, hugs and kisses. God has been so very good to us over these past two years.

 In the two years since we were first diagnosed, Jessica has:

• had five operations (including the one at 28 weeks’ gestation), three cardiac catheter procedures and one other trip to theatre due to an infected wound after her Glenn procedure.
• been admitted to hospital ten times, spending 103 days in total in hospital, 38 of which were spent on PICU.
• had 25 hospital out-patient appointments across four different hospitals as well as being visited at home by the community nurse 57 times.
• attended six weddings, one civil partnership, four funerals and one christening (her own!)
• given us more smiles, kisses, hugs and brought more joy to our lives than could ever be measured

We have had, and continue to have, so much support on this journey from our friends and family not to mention many people who have prayed for Jessica who do not know us personally and we are so grateful to you all for your love and support – thank you so much.

We are hosting a coffee morning tomorrow morning (4th May) at Christ Church in Uxbridge, 10am – 12noon in order to fundraise for Little Hearts Matter. As many of you will already know from previous blog posts, Little Hearts Matter is a charity which provides support and information to children diagnosed with single ventricle heart conditions and their families. The information they provided as part of their antenatal pack was particularly helpful to us in the early days of Jessica’s diagnosis. If you are in the Uxbridge area tomorrow morning and able to pop in for a cup of tea and coffee, it would be lovely to see you.

New shoes and skills

Jessica is continuing to do well and whilst she hasn’t yet had the confidence to start standing or taking a few steps without holding on to things, she is becoming very confident at walking whilst holding Mummy or Daddy’s hand and is very keen to practice this as much as possible!  She is gradually getting more confident and will now stand unassisted very briefly whilst moving between various items of furniture.  As Jessica is so keen to walk as much as possible, Nanny bought Jessica her very first pair of shoes when she came to stay a couple of weeks ago.  She is a size 3½ so has the same shoe size as Mummy (just in children’s sizes!)

Jessica has learned one very important new skill in the last week though and that is the ability to climb on to the sofa.  Our lounge has suddenly become a little more minimalist as we have had to remove certain items that are now within Jessica’s reach! 

We would like to say a huge thank you to Jessica’s godfather Bryan who ran the London Marathon recently in aid of Friends of PICU and raised over £700 for them.  Thank you also to everyone who sponsored Bryan and helped him raise such a fabulous amount.

17 months - check-up at Oxford

Jessica had another check-up at Oxford this afternoon and the echo has shown that her heart function is good at present.  Her sats have been stable in the low 80s and thankfully we have not had any more trips to Wexham Park with various winter bugs!  She is gaining weight brilliantly at the moment – her latest weigh-in showed that she is now 9.56kg (21lb) – a gain of more than a pound since she was last weighed a month ago!  

We seem to be finally having a break from teething and Jessica has managed a couple of nights of sleeping most of the night (Mummy and Daddy have so much more energy as a result!) – we had a grand total of nine teeth making their appearance over a seven-week period, five of which appeared in the space of ten days!  With teething as in many other things, Jessica likes to do things in her own way – the second top front tooth was the last to appear which is definitely not the ‘usual’ order suggested in the books.

 Jessica is getting very confident cruising around the furniture – she isn’t quite standing unsupported yet but is definitely getting much steadier on her feet.  She has started using the baby walker at Grandma’s house and has worked out how to get around quite quickly on that!  She is also starting to work out how to eat with a spoon – getting a pre-loaded spoon into her mouth is easy enough but she hasn’t quite worked out how to get food from bowl to spoon to mouth!

In the last few weeks, Jessica is becoming more and more chatty which is just delightful.  We have yet to be fluent in Jessica-speak but it is lovely to watch her chatting on the phone or ‘reading’ her books aloud.

We have also received a few more donations for Friends of PICU from people who were unable to come to our fundraising concert due to the snowy weather so the total raised as a result of the concert is now up to £740 which is absolutely amazing.  A huge thank you to everyone who supported this.