Getting here, there and everywhere

Our little social butterfly has had quite a busy time over the last couple of weeks – another trip to the Olympics to watch the canoe sprint (which she didn’t seem to enjoy quite as much as the rowing), an open house afternoon with lots of friends from church popping in, a couple of funerals (not so good), a visit from Auntie Maxine and cousin Kieran, a few days staying with Nanny and catching up with various aunties, uncles and cousins, a trip to the park with Auntie Twinny and cousins Ebony and Erin and a picnic in the park where she got to see some farm animals for the first time.  She has also ‘helped’ Mummy and Daddy out at a couple of coffee mornings at church raising money for Friends of PICU and Little Hearts Matter.

 

Whilst she hasn’t yet worked out how to crawl, she is getting more and more mobile and is quite quick at rolling across the floor and working out how to get to where she wants to go.  She’s always been quite a wrigglebottom but now she’s constantly on the move and nappy changing and getting her dressed have become quite a challenge as a result!  She has also just started clapping her hands and it is delightful to watch her doing this whenever she gets excited over some new discovery or is pleased with herself over something.  She has also started giving us sloppy baby kisses, which is very sweet, although is very, very selective about when she bestows them and coaxing so far has had little effect!

 

She is continuing to grow and thrive – now weighing in at 7330g (16lb 2oz) – and is still breastfeeding well (with Infatrini top-ups) and enjoying her food at mealtimes, particularly when she has finger foods and can be Little Miss Independent!  The community nurse is now visiting fortnightly as Jessica’s oxygen saturations have been nice and stable (staying in the mid 80s) and we are due to have our next check-up at Oxford towards the end of next week.  We are also looking forward to having Daddy back home tomorrow as he has been working away in Germany this week.

A few firsts

 It’s been a week of firsts for Jessica – waving bye-bye for the first time, saying “Nan-Nan” for the first time, first bus and train journeys and first trip to an Olympic event (not to mention going to watch the torch as it came through Uxbridge).  She is such a happy and sociable baby and really seemed to enjoy her day out watching the rowing today although the rather loud cheering as Team GB won a silver medal frightened her a bit and she wasn’t quite so happy about that!  

Jessica now says three words  - “mum-mum”, “da-da” and “nan-nan” and is very confident now with sitting unsupported – so much so that she doesn’t want to lie down on her mat anymore and prefers to sit and play with her toys instead – particularly those that are musical ones.  It looks like she has definitely inherited our love of music!

It is wonderful to see how well she is developing – she seems to discover something new almost every day at the moment – yesterday she discovered waving and now waves at everyone, and today she worked out how to rock her swing if Mummy is a bit slow turning it on!  When we look at her now, we are seeing more of the little girl she is becoming than the baby she was, which is lovely but bittersweet too – lovely as it is to see her develop and learn about the world around her, we don’t want her to grow up too quickly!  She brings so much joy to our lives and we love every moment of seeing her grow and thrive.  

Check-ups, teeth and social activity

Jessica had her check-up at Oxford on Friday and is doing very well.  The echocardiogram and ECG both show that her heart function is good and the team at Oxford have said that she looks as well as they have ever seen her which is great, and she doesn’t need another check-up until the end of August/beginning of September.   Whilst at Oxford, we also saw Dr Wilson, who performed the in-utero balloon atrial septostomy.  The last time we saw him was when the procedure was carried out and it really made our day to see him again to say thank you and for him to meet Jessica.  He seemed quite pleased that Jessica was doing so well – “a good outcome” were his exact words!  

The trip to Oxford ended up being quite a sociable one as we bumped into several people we knew – Nichola and baby Jack who we met last time Jessica was on Ocean Ward; Rachel, a friend from church whose son Jonah was having an operation; and Tori, one of the doctors at John Radcliffe.  As always, Jessica continues to be quite a sociable baby – over the last couple of weeks she has been to a baby shower for Tracy, one of Louise’s midwife friends, and out for a curry with some of our other friends, as well as her regular baby groups.

Developmentally, Jessica is coming on in leaps and bounds.  She is now sitting quite well without support for short periods and is quite adept at rolling about and making her way across the floor.  She hasn’t yet worked out how to crawl but has started trying to pull herself forward when on her front.  Her first tooth also came through last week followed by the second one a few days later.  The two top front teeth also feel like they aren’t that far away from making an appearance as well.

Weight gain continues to be steady with Jessica now weighing in at 6990g (15lb 6oz) and measuring 68.4cm in length, putting her just above the 2nd centile for weight and on the 9th centile for height.  She loves her food and sometimes we wonder where she manages to put it all – she must have hollow legs!

Big decisions and Butlins

Jessica is ten months old tomorrow and is continuing to do well.  She is really gaining weight beautifully – now up to 6845g (15lb 1oz) and above the 2^nd centile.  It has been quite a sociable week for her. She has spent a couple of days staying at Nanny’ house (with Mummy too) and went to visit Uncle Adrian and Auntie Julie.

 

She also had her first trip to Butlins earlier this week to spend time with Auntie Twinny, Uncle Matt, cousins Ebony and Erin and Auntie Maxine.  Despite the rain, we all had a great time and Jessica went swimming for the first time.  The water was a little on the chilly side but Jessica loved it – splashing around in her swim ring and enjoying bobbing up and down when the wave machine started.  She did get a little bit blue after about 15 minutes and we had to get her out and dry her off but her colour picked back up quite quickly once she had warmed up.  She also ehad great fun riding in the shopping basket going round the shop which was very funny!

It was a huge relief to us all yesterday when the decision of the Safe and Sustainable review was made and we heard that Southampton was one of the centres that was going to continue providing children’s cardiac surgery.  The care that we have received so far from the team there has been superb and we are so glad that Jessica’s future care will continue in a hospital that has become very familiar to us. Jessica has her next check-up at Oxford next week and hopefully all will be well with this.

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!