Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Monday 12 September 2011

Day 6 - Surgery plans

With Jessica being on CPAP at the moment, we are making the most of being able to have lots of cuddle time with her and so have been spending most of the day having lovely long cuddles which Jessica seems to enjoy as she is much more settled when she is having cuddle time.

It has been quite an emotional roller-coaster of a day as we are becoming quite anxious about the fact that the next operation is now imminent. Dr Salmon, one of the cardiologists, came to discuss the plan with us. There is still quite high blood pressure in the vessels going to Jessica’s lungs and so at the moment, the Norwood procedure would be extremely risky for her. The team have decided that they would like to try to insert a stent in her ductus arteriosus via a catheter to ensure that this stays open and allow more time to see if the blood pressure in Jessica’s lungs drops enough to allow the Norwood procedure to become an option. They will also check to see if there is any congestion in the pulmonary veins, which if there is, would mean that the prognosis for Jessica would be poor.

The chances of Jessica getting through this surgery have been estimated as being around 80%. There is a danger that if the stent is too large, it could rupture the duct which would be incredibly dangerous and if it is too small, that it could become dislodged and travel further down Jessica’s aorta. We will be praying very hard that Jessica can get through this next round of surgery which has been scheduled for Tuesday.

In the meantime, we have been making the most of being able to have plenty of cuddle time with Jessica. We are falling more and more in love with her every single day – she is such a beautiful baby and we pray that she will continue to be a little fighter.

Grandma and Grandad came to visit again in the afternoon as did Great-Auntie Marlene whom Jessica met for the first time.

Our friends Nick and Charlie very kindly invited us over for dinner in the evening and it was good to get out of the hospital for a short time, although we both found it very hard to leave Jessica.

In the evening we managed to have some more cuddle time and Jessica had some skin-to-skin time with mummy which was lovely.

We are both very anxious about the coming days – please continue to keep us in your thoughts and prayers as we prepare for Jessica to have her surgery on Tuesday.

2 comments:

  1. Thinking of you every day. Hope surgery goes well. jessica is such a beautiful baby. Jenny (Gillian's Mum)

    ReplyDelete
  2. What an incredible miracle and journey so far......and I pray that God hasn't finished with Jessica yet on this side of the fence.

    Also, you are two amazing people who have been able to find the right people to help Jessica enter this world.

    We will continue to pray for the 3 of you, that God will continue to equip you for all that lies ahead.

    Bless you
    Steve

    ReplyDelete