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.

Thursday, 8 September 2011

Day 2 - Meeting grandparents

Our little Jessica is continuing to do well. Her second day in the world has been another fairly eventful one where she has been meeting her grandparents and Auntie Twinny for the first time.

Her first night after her operation was a good one, although there was initially a bit of concern that she wasn’t weeing enough and so one of her drugs had to be increased to help with this. She also needed another line put into a vein in her head to allow for more drugs so had her first little haircut for this and the nurses on PICU saved the hair for us to keep.

Louise managed to express some colostrum for the first time to give to her – she had some difficulty at first (realising again the gap between theory and practice!) but had some great support from the breastfeeding support midwife and is now managing to express regularly so that Jessica can have some mummy milk. She is also being given donor breast milk as she is able to have a little more than Louise can produce at the moment.

Jessica was starting to wake up a bit by the afternoon but was still very sleepy although was starting to be a little wrigglebottom again! There was concern again in the afternoon that she didn’t seem to be weeing but then a quick check revealed that her catheter had come out and she had a very wet nappy which Louise was able to change – was very excited to be able to do her first nappy change – the little moments are so very precious right now!

In the afternoon, she got to meet her Nanny and Auntie Twinny for the first time and then later that evening, Grandma and Grandad came to meet her too.

By late evening, she was much more awake and spent a few minutes looking at her mummy before going back to sleep again which was just so wonderful.

Louise is being discharged from the postnatal ward today and we will update again later with how Jessica is doing. Thank you to everyone for all the lovely messages of support we have received so far - we are just amazed by how much love, support and prayer is surrounding the three of us at the moment.

Posted by at
Labels:

4 comments:

  1. Anonymous8 September 2011 at 12:57

    Hooraaah! I am thinking of you lots and I am loving that you got to do a nappy change! xxx and my parents send their love too. Claire x

    ReplyDelete
  2. Anonymous8 September 2011 at 13:48

    Wow! Reading your story so far and seeing the photos has brought back so many memories for me. Our son Thomas has been through similar, although not as serious, in his short life. Operation for some re-plumbing done by Marcus Haw at 5 weeks old. He is now 15 weeks and has made an amazing recovery. I am hoping and praying that things go as well for baby Jessica. All the surgeons, doctors and nurses that helped to look after Thomas were so amazing, we are just so grateful to them for everything they did. Jessica is certainly in good hands. Thinking of you all, Emma Moran xx PS watch out for the leaky toilet in PICU parent's room 5.

    ReplyDelete
  3. Anonymous8 September 2011 at 14:05

    So happy for you all and the progress Jessica is making. All our love & prayers continue to be with you, Suzie & Mike xxx

    ReplyDelete
  4. Anonymous8 September 2011 at 18:11

    Thinking of you all. Lots of love Becky and Phil xxxx

    ReplyDelete

Subscribe to: Post Comments (Atom)