Check-ups and classes

Jessica had a check-up in Oxford at the end of last week and all looks well at present. Her oxygen saturation levels are good and all seemed fine on the heart scan. As yet we don’t know when her next operation is likely to be – we anticipate it will be some time in the next few months but we don’t get the impression that there is any urgency at the moment, as Jessica is doing so well. We are continuing to have visits from the community nurse twice a week to monitor Jessica’s weight and oxygen saturation levels.

Jessica is gradually putting on weight – now up to 5120g (11lb 4oz) and is continuing to follow the 0.4th centile line. As she has had no symptoms of reflux since her feeding tube was removed, her reflux medication has been reduced and hopefully will be stopped altogether in a couple of weeks’ time.

We have had quite a sociable week – going out for dinner to celebrate Grandma’s birthday, going to the Pastiche Musical Theatre Group quiz night and going to a couple of baby groups. It has been lovely to start socialising more with other mums and babies and Jessica seems to be enjoying it. We started Tiny Talk baby signing classes last week – so far we have been practising the signs for milk, nappy and medicine which are the three signs which are likely to be used most at the moment!

Grandma is still receiving donations to Little Hearts Matter as a result of her birthday and these are now up to £765 which is fabulous – thank you once again to everyone for their generosity.

Still focusing on feeding

Feeding and weight gain are still very much the focus with Jessica at the moment. She is gaining weight slowly – now up to 5040g (11lb 2oz) so not quite back to where she was before her cardiac catheter procedure but she is getting there. Her weight is back on the 0.4th centile line on the weight charts and we are hoping that she keeps following this curve and doesn’t drop below it. She is still mostly breastfeeding with some Infatrini top-ups.

Otherwise, Jessica is doing very well and continues to be a very smiley, happy baby. She is managing to sit with support for longer periods of time and keeps teasing us with nearly rolling on to her side before going back to lying on her back on the activity mat and kicking her legs in the air. She is also becoming much more interested in all the different toys that she has to play with.

The donations received as a result of Grandma’s birthday party are now up to £675 which is absolutely amazing – thank you so much to everyone who has very generously donated to Little Hearts Matter.

A little social butterfly

It’s been a busy weekend for our little social butterfly with two social events on the calendar. Jessica went to her fourth wedding on Saturday afternoon – that of our friends Sam and Nathan – and then spent the evening at Grandma Jean’s 70th birthday party, where she got to meet lots of family friends for the first time.

We would like to say a huge thank you to everyone who generously gave a donation to Little Hearts Matter as their way of giving a birthday present to Jean – the donations so far total just over £500 which is amazing – thank you so much! We would also like to say thank you to Pastiche Musical Theatre who have chosen Little Hearts Matter as their charity for their forthcoming show ‘Carousel’ which is on at the Compass Theatre at the end of March – further information can be found on their website.

Getting back on track

By Monday, Jessica’s weight had gone down to 4800g (10lb 9oz) and we were getting concerned that she wasn’t getting enough milk from either the breast or the bottle. Although we were reassured by the cardiac liaison nurse at Oxford who pointed out that restarting diuretics and last week’s cardiac catheter procedure would both have contributed to Jessica’s weight loss, we began to wonder if perhaps Jessica needed to have her nasogastric tube put back in. However after voicing this concern in Jessica’s hearing, suddenly she started feeding more enthusiastically – it seemed that she had decided that this was not something she wanted to happen!

She is still feeding with shields and having Infatrini by bottle as a top-up but has now started to regain weight again and was back up to 4950g (10lb 14oz) yesterday which we were very relieved about.

This week, Jessica has learned to grab her toes and pull her socks off so keeping her feet warm is going to become more of a challenge! Being able to reach her toes is also helping her with trying to roll. Although she did manage to roll a few weeks back, it seems that this was perhaps a bit of a fluke as she is only just managing to roll from her back onto her side when she is on the activity mat. She is sitting in the Bumbo much better now and is also able to go in the baby sling facing forward which she is much happier with – she likes to look around at everything. It is wonderful to watch her developing more and more as she discovers more about the world around her.

Feeding and fun in the snow

We are now back home with Jessica after her cardiac catheter and still trying to get back on track with her feeding. She is now breastfeeding well with the shields but hasn’t really been taking very much extra milk from either the nursing supplementer or the bottle as a top-up. As she has lost a little more weight, we have now started giving Infatrini top-ups in the hope that the extra calories in this will help her to start regaining weight.

Otherwise though, she is continuing to do well and is happy and alert. We had an evening out at an Indian restaurant with our accountant Shiraz and his wife Purveen on Friday and they got to meet Jessica for the first time. Jessica has also now experienced snow for the first time as she had a couple of minutes out in the garden with us earlier today and Auntie Maxine has come to stay for a couple of days.

Coping with another cardiac catheter

Jessica has coped well with another cardiac catheter investigation and this has showed that the pressures in the blood vessels across her lungs should hopefully be low enough for her to tolerate the Glenn procedure when this is re-attempted. There is some narrowing where her superior vena cava was reconnected to her heart after the last operation, but this is to be expected given that it had to be rejoined. Her oxygen saturation levels are still good and so there is no urgency to carry out the next stage at present but we anticipate that this will happen at some point in the next few months.

We have recently found out that our surgeon, Mr Haw, will be leaving Southampton to lead a cardiac team in the USA and that he is likely to be leaving sometime around June. We will be sad to see him leave and although there is a team of excellent surgeons in Southampton, we hope that Jessica’s next operation will take place before he goes.

Jessica has been back to her normal happy smiley self this evening so is recovering well from the procedure. She is getting better with her feeding and has managed to latch directly to the breast for a moment which is definite progress. She is due to be weighed tomorrow and hopefully won’t have lost too much weight whilst she has been re-adjusting to having to make an effort to get milk rather than having it given via nasogastric tube. Hopefully if all is well, we will be able to go back home tomorrow as well.

From Monogen to mummy millk

After six weeks of being on Monogen, Jessica was finally able to have some mummy milk on Sunday. Getting her back on to the breast has been quite a challenge though and so we have been trying lots of skin-to-skin cuddles and gentle encouragement and eventually Jessica was able to latch with the aid of a nipple shield – clearly she has become used to a silicon teat during the six weeks of Monogen. It is great that Jessica is finally breastfeeding again but the nipple shield means that she will have to work harder to get the milk and so is more likely to tire and not get enough milk. Louise has also been using a nursing supplementer which means that Jessica can also have a top-up of expressed milk via a tube whilst she is latched to the breast. Her feeding tube has also been removed.

We are back on Ocean Ward at the moment ready for Jessica’s cardiac catheter investigation tomorrow. She has had a chest X-ray and echocardiogram in preparation for this and there are no signs at present that there is any leakage from the chylothorax so hopefully she will be able to continue having mummy milk. Her weight has gone down a little to 4950g (10lb 14oz) which isn’t too surprising given the change in feeding – hopefully she will start to gain weight again soon.

Nanny ended up staying another week to help out and have lots of Jessica cuddles whilst Michael was away working on an event in Cannes. We were a little worried that he wouldn’t be able to get back in time for this latest trip into hospital as his flight home was delayed due to snow but thankfully he managed to get back home late yesterday evening.

Otherwise, all is going well with Jessica. She continues to be a very smiley, happy little girl and we are hoping that the findings of tomorrow’s cardiac catheter investigation will be encouraging.