Concerns

Two and a half months of being at home with Jessica have almost lulled us into a false sense of security but our latest check-up at Oxford yesterday has reminded us that this is still a very vulnerable time for Jessica at the moment. Everything looked fine on the heart scan but Jessica’s oxygen saturation levels are not quite as reassuring as they have been and she is visibly bluer. Her weight is also causing concern – although she has started putting on weight again – latest weight was 5220g (11lb 8oz) – the slow weight gain coupled with the reduced oxygen saturations indicate that Jessica needs to have her next stage operation sooner rather than later and the Oxford team are pushing for this to take place within the next month.

Getting a phone call on a Saturday from the cardiology consultant less than 24 hours after a check-up to ‘see how things are’ has also shown that the team are more concerned about Jessica’s well-being. We are keeping a much closer eye on her oxygen saturation levels at home (thankfully we now have a machine at home thanks to our community nurse) and if there is any further drop then the plan is to admit Jessica to hospital for observation. Otherwise, we are due for our next check-up at Oxford in two weeks unless the surgery happens before this.

Jessica still seems well and happy in herself and otherwise seems to be doing well. Louise enjoyed her first Mother’s Day very much and we went out for a meal together as a family to celebrate this which was lovely. Although the first teeth have yet to make an appearance, Jessica has also now been registered with our dentist and had her first trip there this week when Louise went for a check-up.

Weaning is also getting better since we tried breadsticks. Jessica loves to hold these and put them in her mouth and dipping them in purée seems to be a much more effective way of getting the purée into her mouth than using a spoon. Obviously she is still getting most of her calories through her milk at the moment and we have increased the amount of Infatrini we are giving her to help encourage her to put on weight although she is still breastfeeding as well.

Jessica continues to be a very sociable, smiley baby and seems to be enjoying all the various baby groups we have been going to as well as visits from our friends Clare and Katie this week. We also held a coffee morning at church this morning to help fundraise for Little Hearts Matter and Friends of PICU and have raised around £65. Pastiche Musical Theatre Group are also putting on their production of Carousel at the Compass Theatre in Ickenham this week and this will also help to raise money for Little Hearts Matter. Michael is doing the sound design for the show and if you are in the area, tickets are still available!

We are praying that Jessica’s condition will stay stable until her next surgery can take place and would be very grateful for any thoughts and prayers over the coming weeks as we prepare for the next stage. We will continue to update regularly.