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 45 - Coffee morning

Spent most of the day yesterday baking cakes and scones for today’s coffee morning at our church which was a fundraiser for the wonderful Little Hearts Matter.  Little Hearts Matter is a fabulous charity which helps provide information and support to children with single ventricle heart conditions and their families and they are celebrating their 20^th anniversary this year having grown from a local support group to a national charity.  It’s great to be able to support the work they do and we managed to raise £52 through the coffee morning which was quite good considering it wasn’t particularly busy.

Day 19 - A visit to the dentist

Good dental care is really important for children with CHDs as gum disease and tooth decay increase the risk of getting endocarditis (an infection in the inner lining of the heart). As soon as Jessica started showing signs of teething I registered her with my dentist and so she has been several times now and is quite relaxed about it all (although we usually have to get her to pretend to be a lion so she will open her mouth wide enough!) Today was our six-monthly check-up and all was well - Jessica got stickers for being so good.

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.

Little Hearts Matter

There are several charities that we have become connected with since Jessica was first diagnosed with hypoplastic left heart. The first of these was Little Hearts Matter, a charity which helps provide information and support to children who are effectively living with half a working heart and their families. Their antenatal pack, in particular, was very helpful in those early days when we were getting to grips with Jessica’s diagnosis and our options. Since Jessica’s birth, we have also found their other information leaflets helpful, particularly as the information provided is more specific for the type of condition Jessica has.

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.

Contingency plans

Last winter Jessica had a few trips to hospital and a couple of stays due to various bugs. With winter approaching once more, I find myself wondering what will happen should Jessica need to go to hospital this year. As Sophie is breastfeeding she should hopefully be able to stay with me should I need to accompany Jessica into hospital but this isn't guaranteed and so I have started expressing and introducing a bottle of EBM so that Sophie gets used to taking a bottle as well as the breast just in case she has to be away from me.

Reality check

Giving Sophie a cuddle earlier, I was thinking about how Jessica is having to adjust to not getting my full attention and having to share Mummy and I said to Sophie "you'll never know what it is like not to have Mummy's full attention as you'll always have to share Mummy."  "You hope," Michael said quietly, pulling me up short. "We hope," I repeated, saying a silent prayer that Sophie will always have to share Mummy with Jessica. This is the reality of being a heart parent - those little moments when you are reminded that the future is always uncertain.

In the swim

Had a church open house yesterday and Jessica enjoyed having a swim in the outdoor pool. We always have to be careful when taking Jessica swimming and keep a close eye on her colour as she can go blue quite quickly when she gets cold. Sometimes the transition from being a slightly concerning colour to being alarmingly blue can be quite rapid and whilst we've experienced this before and know we need to be ready to warm her up quickly, it can be quite worrying for those watching. Once Jessica was warm and dry she pinked up quite quickly though.

Heart to heart

I’m a member of a few online heart groups and forums, which share stories, questions and advice between heart families. Michael sometimes questions whether it is really wise for me to do so as I often get quite emotional following some of the stories but there are inspiring stories as well as heartbreaking ones and it does help being able to talk to other parents who understand the ups and downs of life as a heart parent . Our heart children are such little fighters and I am so often blown away by the strength and courage that they show.

Holding on to hope

 

‘Strength for today and bright hope for tomorrow
Blessings all mine, with ten thousand beside!’
Since becoming a heart mummy, I have read so many inspirational stories of children who were not expected to survive. Some of these are heart warriors, others may have different conditions. All of their stories touch my heart. My daughter was not expected to survive to birth, let alone to become the beautiful active toddler that she is today. All these stories make me realise that God is working miracles all the time; that even a faint glimmer of hope is worth holding on to.

National Breastfeeding Week - my story

It’s National Breastfeeding Week.  When my daughter was born, I didn’t know if I would be able to breastfeed her due to her heart condition.  In the end, she had mummy milk for 17 months.  It wasn’t easy – there were 12 weeks when she had a chylothorax and couldn’t have breastmilk (during which time I expressed and donated to the local milk bank).  She needed top-ups of Infatrini throughout but she did breastfeed and I am so glad I persevered.  It felt like such a big achievement and I hope it gives encouragement to other heart mummies wanting to breastfeed.

CHD Awareness Week

 

Jessica and I have been wearing red today for CHD Awareness Week. Approximately 1 in every 100 babies is born with a congenital heart defect (CHD) and it is the most common and most lethal birth defect worldwide. There are more than 40 different types and more than 50% of children born with a CHD will require at least one invasive surgery in their lifetime. My little girl is one of those 1 in 100. Since birth, she has had four operations (plus one before she was born) and will need more as she gets bigger. She is my miracle.