Another significant anniversary

It has been exactly a year today since Jessica had her in-utero atrial septostomy – the first big step in this journey and one that gave us a glimmer of hope after being told a few weeks before it that surgery was unlikely to be a viable option.  It is so wonderful to be able to look back at it with our beautiful baby girl here with us and we are so grateful to all the wonderful consultants who were involved that day (and the day before during the first unsuccessful attempt) and were willing to try a new procedure in order to give our little Jessica a chance to survive.  It felt like such an answer to prayer and a year on, so many of our prayers have been answered in the most wonderful way – God is so good.

A year on from one of the most anxious times of our lives and our little girl is coming on in leaps and bounds.  She is now starting to sit for brief moments without needing to be supported and she has really got to grips with rolling from her back to her front and is now working out how to roll the other way.  She is also trying to pull herself forward when she is on her tummy and move about – and we are beginning to realise that we need to baby-proof our lounge a bit more as she is starting to want to explore!  Yesterday, she discovered the basket of nappies on the floor and had great fun pulling them all out and throwing them about!

Weight gain continues to be good – Jessica is now up to 6490g (14lb 5oz) and has gone from being way below the 0.4^th centile on the weight chart to being on the 2^nd centile.  She is doing really well with feeding in general – eating more solids now, breastfeeding well (apart from the occasional moment of confusing Mummy with a teething ring – ouch!) and having less top-ups of Infatrini .  We are still working on encouraging better sleep patterns, particularly with daytime naps but she is sleeping well through the night even if getting-up time is a little earlier than we would like!

 

Oxygen saturations remain stable and in the low to mid 80s which is great and Jessica continues to be a very happy baby.  She is getting increasingly communicative and it is delightful to hear her babbling away as she plays on her activity mat.  She is also starting to mimic some of the sounds we make – particularly coughing which is very funny.

Since Jessica’s diagnosis over a year ago, we have received a huge amount of support from everyone at our church, Christ Church.  They have recently donated £500 as part of their outreach to Little Hearts Matter and we would like to say a huge thank you for their generous donation and for all the wonderful support we have had as a family.

Finally, on Wednesday next week (4th July), the Joint Committee of Primary Care Trusts will announce the decision of the Safe and Sustainable review.  This meeting will give the verdict on whether or not Southampton will be able to continue providing children's cardiac surgery.  We are of course praying that Southampton will be able to continue to provide this as we have had such wonderful care from Southampton and would be very grateful for any prayers in this direction!

Rolling, eye checks and social visits

Over the last couple of weeks, Jessica has been doing really well and has started to roll at last – mostly from back to front although has managed to roll back again once or twice.  We are now often finding her asleep on her tummy in the cot during the night.  Now that she is able to roll on to her tummy and lift her head well, she has become a lot happier with tummy time when playing and is really starting to build up her muscle strength now.  She continues to gain weight beautifully and now weighs 6390g (14lb 1oz) and her oxygen saturation levels are still good.  

She had her eye appointment earlier today and the orthoptist has confirmed that she does have a squint although as it goes from one eye to the other neither eye appears to be particularly dominant at the moment, which is a good thing.  We will be having another appointment in a few months’ time for a further vision check.

It has been lovely having Michael back home again after all his trips abroad last month.  Jessica was very excited to see her daddy at the airport when he arrived home!  Michael has also enjoyed his first Father’s Day and had some lovely cards and presents from Jessica.

It has been quite a sociable couple of weeks for Jessica.  She met Great-Auntie Pauline, Great-Auntie Jackie, Great-Auntie Shirley, Great-Uncle Peter and Great-Uncle Dave for the first time as well as seeing a couple of her other aunties and uncles and cousins.  On a sad note, she also attended her first funeral to say goodbye to Hilda, a lovely lady from our church.  There were also more goodbyes to cousins Clare, Andrew, Seren and Sian who were moving abroad.

Jessica also went along to the AGM for our local Churches Together.  Last year, the AGM was just before the in-utero surgery and we were very blessed to have everyone at the AGM praying for Jessica.  It was wonderful to be able to be back with everyone a year on and show just what miracles God has performed in our lives in the past year – thank you once again to everyone who has been keeping us in their thoughts and prayers throughout this journey.

Nine months old

Jessica is nine months old today!  Her weight is now up to 6090g (13lb 6oz) which is amazing.  It took her three months to get from 11lb to 12lb and she has gone from 12lb to over 13lb in a month.  She is eating solid foods really well now – strawberries and cream has been a favourite lately!  She seems to be breastfeeding better as well and although she is still taking a reasonable amount of top-up by bottle, this is less than it was.

Sleep-wise, things have settled and whilst Jessica still wakes quite early, she is sleeping better during the night and not spending quite as long awake when she does wake for a feed.   She has been enjoying spending lots of time with Nanny although is now going through a phase where at certain times of the day, she will hold out her little arms and cry for “Mum-mum” and only Mummy cuddles will do.  It is lovely to feel her really snuggle into you when she cuddles up now!

We had an audiology appointment last week for a more intense hearing screen (which was advised because Jessica had spent time on PICU being ventilated) and this has shown that she is not responding very well to low-frequency sounds, although her hearing is good in the frequency range for speech.  This is probably due to some fluid in her middle ear and hopefully this will resolve by itself, but we will have another hearing screen again in a few months’ time to recheck this.  We also have an appointment in a couple of weeks’ time regarding Jessica’s lazy eye.

We had our cardiology check-up in Oxford on Friday and the team are happy with Jessica’s heart function and oxygen saturation levels at present.  As Jessica is doing so well, she does not need another check-up for another six weeks which is great.  We are having a few issues with obtaining some of her medication again though and the team are trying to resolve this.

 

 

Jessica is still not quite able to roll or sit up and the community nurse feels that she may benefit from some physiotherapy input regarding this and will discuss this with the paediatrician.  In the meantime, we will be continuing to encourage Jessica to have some more tummy time (she is gradually managing longer periods on her tummy before getting grumpy) and using the Bumbo to help her to sit and strengthen the various muscles needed for this.  She is doing well with her fine motor skills though and signed her first word – ‘milk’ a few days ago – clever girl!