Easter and return to E1

It was lovely to be home with Jessica for Easter weekend – she met some of the members of Churches Together in Uxbridge (CTU) who have been praying for her on the Walk of Witness on Good Friday and had a wander around the church labyrinth which Michael had been busy building in the run-up to Easter. She also had her first taste of Easter egg which she quite enjoyed and had a lovely evening with Grandma and Grandad on Easter Sunday.

We are now back on Ocean Ward ready for Jessica’s surgery tomorrow. She is first on the list so will probably go into theatre around 8.30am. As she had most of the pre-op tests last week, she didn’t have to have lots of blood tests and scans today which was good, although she has been weighed and has gained a little bit taking her up to 5420g (11lb 15oz). The consultant anaesthetist has been to see us and has prepared us for tomorrow’s operation being quite a challenging one in view of Jessica’s history and we are praying that she will continue to be a little fighter. Please continue to keep us in your thoughts and prayers – we will update as soon as possible after the surgery tomorrow.

Surgery - new date

We have now been told that Jessica's surgery will be scheduled for Tuesday morning as today's theatre list is quite full. Thankfully the decision to postpone the surgery until Tuesday was made before Jessica had to go nil by mouth so she didn't miss out on any feeds (although she did her best to make up for lost time yesterday!)

We are going home for Easter weekend and will be coming back on Easter Monday to prepare for the operation. Jessica's oxygen saturations have been a bit borderline with regards to what the team would be happy with and so we will still have a bed on the ward over the weekend so we can come and go as needed, particularly if Jessica's sats drop.

We will update again when we are back on the ward, please continue to keep Jessica in your thoughts and prayers over the coming days.

Rescheduling the surgery

We arrived on Ocean Ward yesterday morning as Jessica was scheduled to have her surgery today. As always, the day we arrived was a busy one with lots of tests being performed – blood tests, echocardiogram, chest X-ray, sats monitoring etc. and preparing for surgery. As Jessica is over six months, she has outgrown the nursery and we are in one of the other bays which means that Louise can sleep next to her cot.

We were expecting to go into theatre around 11am as Jessica was second on the list but as is often the case, we were waiting longer than anticipated and it was around 1pm before we were told that we were about to go into theatre. However, the surgical team then had an emergency case which meant that today’s surgery for Jessica had to be cancelled and the team would try to reschedule it at a later date. Jessica had been nil by mouth for ten hours by this point so was very happy to be able to have a feed again!

At the moment we anticipate that Jessica’s surgery will be taking place tomorrow afternoon although if there are delays, then the plan is that we will go home and come back in again on Easter Monday ready for surgery on Tuesday. In the meantime, Jessica is fine although her oxygen saturations are again a little lower than they have been at home. She had a visit from Katy yesterday and the Royal Navy motorbike club visited the ward this afternoon to deliver Easter eggs and cuddly toys for the children.

We will update again tomorrow – please keep us in your thoughts and prayers as we prepare once again for surgery.

Getting ready for another step

Jessica has been doing well over the last few days and thankfully her oxygen saturation levels have been fairly reassuring. Her weight gain is still slow but she is at least still gaining weight and is now up to 5380g (11lb 13oz). She is doing really well with her solids – pear puree and mashed avocado seem to be favourites at the moment.

Jessica has been spending time with lots of family members over the past few days – going to cousin Keely’s 16th birthday party last week and having Auntie Maxine come to stay for a couple of days whilst Michael was busy doing sound for Pastiche Musical Theatre’s production of Carousel. We would like to say a huge thank you to Pastiche for choosing Little Hearts Matter as their charity for this show – the proceeds raised from the bucket collection, raffle and programme sales raised £916.78 for the charity which was amazing – thank you so much.

We are all set to go into hospital tomorrow ready for her next operation on Wednesday and will keep you updated over the next few days as to how things go. Please keep Jessica in your thoughts and prayers as she takes another step on her journey.

The next step approaches

We now have a date for the next operation, the Glenn procedure, and this should take place next Wednesday, 4th April. This procedure involves connected Jessica’s pulmonary artery (the main artery between the heart and lungs) to her superior vena cava (the main vein from the top half of her body). This allows the deoxygenated blood from the top half of her body to flow to her lungs without being pumped. This was originally attempted at her last surgery but had to be reversed as the pressures in the blood vessels were too high for this to work. The latest cardiac catheter indicates that the pressures are now low enough but of course we are quite anxious as we anticipate this next round of surgery.

Jessica’s oxygen saturation levels have been a little more reassuring since Friday’s appointment which is a relief and she has also gained a little more weight, now weighing in at 5320g (11lb 11oz). Feeding has been a bit of a challenge as she hasn’t been quite so keen on the Infatrini over the last couple of days so getting her to take the extra top-ups has been tricky at times. On the plus side, she is doing much better with her solids and managed a whole pot of pear purée this afternoon which was fabulous.

Whilst we know from her weight and the oxygen saturations that the next stage operation needs to happen sooner rather than later, we feel a little overwhelmed by how quickly things are moving along and would be very grateful for your thoughts and prayers as we prepare for this next step on Jessica’s journey. We will be going back into hospital next Tuesday to prepare for the surgery and will keep you updated as to how Jessica gets on.

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.

Ups and downs

It has been a bit of an up and down week for Jessica. She has lost a little weight again – back down to 5060g (11lb 2oz) and so we have increased the amount of Infatrini she is having and hopefully she will start to regain weight again soon. Our community nurse felt that the weight loss is likely to be due to the fact that Jessica has had a bit of a cold and her cough is still persisting. She seems well in herself though and her oxygen saturation levels have been good so hopefully this is just a temporary blip.

Weaning has been a bit hit and miss – Jessica hasn’t been too keen on the various purées offered so far although has progressed from objecting strongly to the very first spoonful to at least tasting a little more before starting to object!

Jessica has been a little more unsettled this week and not quite as happy as she usually is due to the fact that she has been teething. We are still awaiting the appearance of the first tooth but feel that this may not be too far off! She also had her third round of routine immunisations which resulted in quite an unsettled night afterwards – the combination of a cough, teething and jabs was not a happy one!

We are still having issues with obtaining clopidogrel (one of Jessica’s medications) locally and the Oxford team continue to try and resolve this.

Jessica has been having quite a sociable week – going to see Nanny for her birthday (and getting to see lots of aunties, uncles and cousins at the same time), having lunch out with Louise’s midwifery friends for Glenis’s leaving party and going out for a curry with our friend Neil.

It is looking like Jessica’s next stage will take place at some point in the next couple of months. We are a little concerned with the timing for this as Michael will be away working for a few weeks from mid-May and we are also hoping that the surgery will take place before Mr Haw leaves. We would be grateful for any prayers regarding the timing of the surgery – obviously we want the surgery to happen at the right time for Jessica but preferably not when Michael is away.