Sleepless nights, street parties and sight concerns

Jessica now seems to have adjusted well to feeding without the nasogastric tube and is gaining weight beautifully – now up to 5860g (12lb 14oz) which is fabulous.  She is taking more and more solid food now and has been enjoying exploring finger foods (and making lots of mess!)

 The warm weather and light mornings seem to be playing havoc with her sleeping patterns at the moment though – we still remain unconvinced that the early hours of the morning are a good time for staying awake and wanting to play despite Jessica’s best attempts to convince us otherwise!  Hopefully this is just a temporary phase and thankfully Nanny has come to stay and help out whilst Michael is away which improves the odds of being able to catch up on a little lost sleep!

 Over the past week or so, we have noticed that Jessica seems to have developed a lazy eye which she has probably inherited from Michael who also had this as a child, and we have been referred to King Edward Hospital for further investigation on this.

 Otherwise everything seems to be going well and we have been enjoying going out and about more in the nice weather.  Jessica also attended her first street party at the weekend but was quite unimpressed about it all!

Off the Monogen

Jessica has had another good week.  She stopped the Monogen last Wednesday and so is now back on mummy milk and Infatrini once again and so far things seem to be going well with this.  She has been taking good amounts by bottle and so the feeding tube came out yesterday.  Her weight has stayed the same this week but hopefully once Jessica readjusts to the change in feed, she will be gaining good amounts of weight again.  She is also doing well with her solids and is starting to eat more.  Her oxygen saturation levels have been stable and overall everything seems to be going well at present.

Godmummy Gillian came to stay for a few days and Jessica enjoyed spending time with her.  Michael has been away for most of the past week working on an event and other than a couple of days back home at the end of this week, will be away until mid-June so Jessica will miss spending time with her daddy over the next couple of weeks.

Back home, one week on

We have now been home a week and have started to settle back into a normal routine once again.  Within 48 hours of coming home, the feeding tube was accidentally pulled out (by Louise rather than Jessica though) and we thought we’d see how Jessica got on overnight as she was taking the bottle reasonably well.  Unfortunately, she would only take a two-hourly amount which meant for a very unsettled night for everyone before the community nurse came and replaced the tube again in the morning.

We had a routine check-up at Oxford on Friday afternoon and had an echo which showed good heart function and Jessica’s saturation levels have also been good.  However, when we arrived home from our appointment, we discovered that Jessica had pulled her feeding tube out on the journey home and so we had to take a trip to Wexham Park hospital to have the tube put back in once again!  Hopefully once she no longer needs to be on Monogen, she will take enough milk not to need the tube and we won’t keep having to replace it!  On the plus side, she is gaining weight well and is now up to 5690g (12lb 8oz).

It has been quite a sociable week with Jessica attending two birthday meals (one for Mummy’s birthday last Wednesday and then again today for our friend Sarah’s birthday) and being back at baby groups once again.  There is now a more noticeable difference between Jessica and other babies her age, particularly with regard to motor skills such as rolling, sitting and crawling which isn’t too surprising given her time in hospital and we have been reassured that she should catch up soon.

Overall, she is doing incredibly well and is as happy and smiley as ever.  It is exactly a year today since our appointment at Great Ormond Street Hospital where we were told that Jessica was unlikely to be suitable for surgery and was likely to only survive for a few hours, and we sat in the hospital chapel praying desperately for a miracle.  Now we have a beautiful eight-month old daughter who has survived several operations and brings us so much joy and we thank God every day for giving us the miracle we prayed for and blessing us with our little girl.  God is truly awesome!

Home again!

Jessica was eight months old yesterday and as she was off the oramorph, she was finally able to come home!  It was wonderful to be able to take her home after another four-week stay in hospital (we have been very consistent with our hospital stays!)  She had a bit of an unsettled evening as we all readjusted to being out of hospital and as she is now too big for her Moses basket, she slept in her new cot for the first time.

We have been getting to grips with her new medications and will be gradually trying to settle back into a routine over the next few days.  Jessica has been getting a little better at taking some of her milk via bottle but most of it is still going down the tube.  She was weighed yesterday and is gaining weight well – now up to 5530g (12lb 2oz) and is at last starting to outgrow the 0-3 month clothes!

We had a few visitors in our last couple of days on Ocean Ward – our friends Clare, Phil and Kath came to visit on Saturday and catch up with how Jessica is getting on.

It is so lovely to be home again as a family and we can’t thank the staff on PICU and Ocean Ward enough for taking such great care of Jessica once again.  The plan is to have a cardiac catheter investigation again in 3-6 months’ time and in the meantime we will be having regular check-ups in Oxford and weekly visits from the community nurse.

A year into the journey

It has been exactly a year since we first found out about Jessica’s heart anomalies and this journey began.  A year ago today, we went in for our 20-week scan, feeling excited about seeing our little Sprout on the screen, and moments later our world was turned completely upside down when we were told that it looked like our baby had some serious heart abnormalities.  Later on that day, we had the first of many appointments at Oxford where this was confirmed and we also discovered that we were expecting a baby girl.  We were scared and devastated, but we knew that we had to give our baby every chance that we could and that the journey ahead would be dark and difficult.  In the days that followed, we were overwhelmed by how much support we had from everyone and we have been so very blessed to have such wonderful friends and family.

The last year has been the most wonderful, terrible, scariest and most amazing year of our lives.  We have seen God work the most amazing miracles and are so unbelievably blessed to have our little girl here with us now.  We have gone from being told at 22 weeks that surgery was unlikely to be a viable option to pioneering in-utero surgery just six weeks later.  Despite all our fears and worries, we were still able to enjoy the months before Jessica arrived and make the most of every moment. 

The moment when she finally arrived on 6 September 2011, pink and crying and more well than we had dared to hope for was the most joyful moment of our lives.  Jessica had her first open heart surgery at just eight hours old and then a further procedure a week later.  We were finally able to take her home at 4 weeks old – another milestone moment that we could hardly have dared dream would happen. 

Since then she has done amazingly well.  She has got through another two open-heart surgeries and two cardiac catheter investigations.  She is the most wonderful, smiley, happy little girl and brings so much joy to our lives.  We are amazingly blessed and every day we thank God for giving us such a precious gift.

We know that there will still be many dark and difficult days ahead, that Jessica’s future will always be uncertain.  All we can do is take every day as it comes, enjoy every beautiful moment with our amazing, beautiful daughter and trust in God to strengthen us when the journey is hard.  We have been so very blessed to be looked after by such amazing doctors and nurses and cannot thank all those who have helped our daughter get here enough – especially Mr Impey, Dr Wilson and Mr Haw whose surgical skills have given Jessica the chance of life.

We have also been blessed to have amazing friends and family.  Over the past year, we have had so much support via this blog, some of it from people we have never met.  Thank you so much to everyone who has kept us in their thoughts and prayers and God bless you all.

Continuing to make good progress

After Jessica pulled her feeding tube out on Tuesday, we tried seeing if she would be more willing to take the bottle but by the middle of the night with a hungry and unsettled Jessica still not wanting to drink more than 30ml of her bottle, the tube went back in again.  Jessica wasn’t particularly happy about having the tube put back in but once her tummy was full again, she was lovely and settled and everyone got some sleep!

The oramorph continues to be reduced and whilst Jessica has the occasional moment of being quite unsettled just before it is due, she is coping well with being weaned off it and hopefully this will be stopped on Sunday with a view to hopefully going home early next week if all is well.

We have had a few more visitors over the last couple of days – our friend Hannah and her little girl Abigail met Jessica for the first time yesterday and Nanny, Auntie Twinny and Auntie Maxine have visited today.

Another good couple of days

Jessica is continuing to do well and has been very smiley and happy over the last couple of days.  She has been taking a little more Monogen by bottle and then decided to pull out her feeding tube this evening, little pickle!  As she has been a little better at taking the bottle, the doctors have agreed to see how she gets on without the tube and replace the tube in the morning if Jessica doesn’t take a reasonable amount by bottle overnight.  She has been doing really well at taking solids – we are now on three meals a day and she is eating reasonable amounts, even managing to finish her little bowl of mashed potato and baked beans this evening. Our friend Nick popped in to see Jessica this afternoon and brought some more lovely weaning pots which was fabulous (thank you, Nick!) particularly as the hospital MCT-diet menu is very limited.

Her wound dressing has been removed and the wound is looking good so Jessica was able to have a bath for the first time since her op this evening.  She was weighed this morning and is now 5450g so has finally reached 12lb.  Considering that she first hit 11lb at the end of January, this feels like quite an achievement!  

The plan over the next few days is to continuing weaning down on the oramorph and the diuretics and hopefully then we will be able to go home.