Jessica's welcome service

When Jessica was born, we knew that her future was very uncertain and so we had her baptised a few minutes after birth, hoping that later on we would be able to take her to church and have a welcoming/thanksgiving service and today that day arrived. As Jessica had already been baptised, we were unable to have a christening service but we were able to include the other aspects of a christening service that we were unable to do in hospital – the baptismal candle and choosing godparents for Jessica. Thank you to our lovely friends Gillian, Katy, Bryan and Nicki for becoming Jessica’s godparents.

It was also an opportunity to give thanks for what God has done in our lives and Jessica’s life. We have had so much to thank God for on this journey – the many miracles that have got us this far, being given hope and the strength to keep going, the wonderful support we have had from family and friends and the sheer amount of prayer that has surrounded us all – not just from our family and friends, but from many people who do not know us personally and have never met Jessica. Thank you all for being there alongside us on this journey.

It was wonderful to be able to share this special day with family and friends and Jessica enjoyed having lots of cuddles. She had a very pretty new dress for the occasion and also wore her daddy’s christening cape which was knitted by her great-great-grandmother back when Michael was a tiny baby. Our minister, Nick, did a beautiful service with the theme of hope – very appropriate for this journey as well as for Advent, which of course we are now at the beginning of. Thank you to everyone who came and shared Jessica’s special day.

11 weeks - Anticipating another step

It has been a fairly busy week for Jessica with visits from both the community nurse and health visitor and another check-up at Oxford. Thankfully she is continuing to do well, with her oxygen saturation levels remaining fairly stable and her weight is now up to 3690g (8lb 3oz). She has also been meeting a few more of our friends this week, having now met Matt, Jeanine, Phil and Kath and also went along to a beading workshop at our church (needless to say, Louise didn’t get a lot of beading done but it was nice to be sociable!)

We have now been given a date of 14th December for Jessica’s next operation and the plan is that this will be a combination of the second part of the Norwood procedure and the Glenn procedure. This will involve major open-heart surgery and we will be going back into Southampton General Hospital on 13th December to prepare for this. If all goes well, it is likely that we will be in hospital for at least two weeks.

Understandably we are quite anxious about this next step as this will be the biggest step in our journey so far. Jessica has been a little fighter and we pray that she will continue to be so. Please can you continue to keep us in your thoughts and prayers as we approach this next stage and pray that our little girl will continue to do well. We will of course keep you updated over the coming weeks.

Back home again

We have been back home for a few days now as Jessica was discharged from Ocean Ward on Tuesday afternoon and it is lovely to be home again. Jessica has recovered well from the catheter procedure and is still gaining weight well – now up to 3610g (7lb 15oz). She is growing out of the tiny baby clothes and is starting to fill out the newborn ones now.

We have had a quiet few days at home since leaving the hospital and Jessica is starting to settle into more of a routine as she is getting bigger. She is due to have another check-up and heart scan in Oxford towards the end of next week and we will continue to post updates as to how she is getting on.

Cardiac catheter investigation

We are now back on Ocean Ward in Southampton as Jessica was admitted on Sunday ready for her catheter investigation today. It was a busy weekend for Jessica as we were at a fundraising concert and dinner in Southampton on Saturday night – Michael was helping out with sound at the event – and so Jessica had her first sleepover as we stayed with our friends Nick and Charlie overnight.

All the excitement of the concert meant that Jessica had a bit of a late night and with all the checks that had to be carried out after we arrived on the ward, didn’t manage to get much sleep until late afternoon and so unsurprisingly was quite vocal in her objections to being poked and prodded. She had to have a chest x-ray, a heart scan and ECG as well as having blood taken so it was quite an eventful day all round for her.

We were second on the list for theatre so Jessica was taken down to the cath lab around 11.45am. We were able to go with her to the anaesthetic room and so Louise could cuddle and sing to Jessica whilst she was given the general anaesthetic. It was quite an anxious wait whilst the catheter procedure was taking place, but after a couple of hours, Jessica was finally ready to be brought back to the ward from recovery. She was doing well, although needed a little bit of extra oxygen as her oxygen saturation levels were a little lower than usual following the procedure.

It was a while before Dr Gnanapragasam came to see us to discuss the plan. The catheter procedure had gone well – the stent in her duct was still open and there was good flow through it. The bands on the arteries in Jessica’s lungs were looking fairly tight which was to be expected as she was growing well. Due to the tightness of the bands, Dr Gnanapragasam was unable to measure the pressures in the lung arteries directly as they didn’t want to risk blocking them trying to feed the needle through the narrow bands; however they do not appear to be too high when measured indirectly. The overall anatomy and cardiac function looks fine for now. There is much discussion needing to take place within the team as to exactly what they will do next and when. As she grows, the fixed bands will restrict the flow to her lungs and she will gradually become more blue in colour and that will dictate how long they can leave it before she needs to be operated on. This would probably be around mid December or possibly into January.

However there is a choice of whether to do the next phase in one or two stages. She didn’t have the Norwood procedure during her first stay in hospital, but rather a ‘hybrid’ procedure which was in effect the more minor half of the Norwood type operation. This was mostly due to not wanting to risk major reconstructive surgery on her when she was so small and undergoing physiological changes of neonatal development. The next phase will require the major Norwood type procedure and could also include the following Glenn stage as well in a combined operation. Her growth and tightening bands will determine how long they can leave her before the Norwood must be undertaken but they would normally want to leave the Glenn till a bit later. They need to weigh up the risks of two separate stages versus one more major operation performed slightly early (in terms of the Glenn).

We are hoping to go home sometime tomorrow afternoon and will keep you updated with further news about the next stage when we know more. The team here will be discussing the plan with our consultants in Oxford at their next team meeting in a week’s time and hopefully we will find out more when we next have our check-up in Oxford.

Thank you to everyone for keeping us in your thoughts and prayers once again. We have taken another small step along Jessica’s journey again today.

9 weeks - Check-ups and cuddles

It has been a busy week for Jessica – we have had a check-up at Wexham Park Hospital (so that the paediatric team could meet her and become more familiar with her medical condition just in case we need to take Jessica there at any point), our weekly check with the community nurse and Jessica also had her first set of immunisations. Needless to say, she was not very impressed at having these done and was a little unsettled for a day or so afterwards but then was back to her usual happy self.

Nanny came to stay for a few days which was fabulous – she enjoyed having lots of cuddles with Jessica and magically made the ironing pile disappear and a pile of freshly ironed clothes appear which made Louise very happy! Auntie Loraynne, Auntie Maxine and Auntie Twinny also visited as did our friend Sarah, who got to finally meet Jessica.

Jessica is continuing to gain weight – now up to 3440g (7lb 9oz) and she also slept through the night for the first time which was very impressive! She is starting to grow out of her small baby clothes and filling out the newborn ones a little more.

We will be heading to Southampton tomorrow as Michael is involved in setting up sound and lighting for a fundraiser concert there and so we will be staying with friends before going to the hospital on Sunday morning ready for the catheter procedure. We will keep you updated over the next few days as to how we get on. As the next step approaches, we are finding ourselves getting a little more anxious and praying very hard that Jessica will cope well with this next procedure and that the news will be encouraging.

8 weeks - approaching the next step

Jessica is now eight weeks old and has had another sociable week – attending her second wedding and her first curry night and was very chilled about meeting a few more people and having lots of cuddles with various friends on both occasions. She also went to visit Uncle Ken and Auntie Kathy and meet various cousins, including another new arrival to the family – baby cousin Barnaby who is just four weeks old (but already bigger than his older cousin!)

She has had a bit of a cold this week which has made her quite snuffly and out of sorts earlier in the week which we were a little concerned about – it has been helpful being able to call the cardiac liaison nurses at John Radcliffe hospital for advice whenever we have any worries though and by Thursday, Jessica seemed much happier and much more like her usual self although is still a little snuffly, particularly at night and first thing in the morning.

We had our routine check-up at John Radcliffe hospital on Friday and Jessica’s oxygen saturations were at the bottom end of her normal range which is likely to be due to her having a cold. The team were considering whether to admit her and keep an eye on her in hospital overnight but as she seemed well otherwise and wasn’t struggling with her breathing, they decided that we should just keep an eye on things. Needless to say, we will be calling the hospital if we do have any concerns, but as she now seems to be getting better, hopefully the oxygen saturation levels will be a bit better when the community nurse next visits on Monday.

On the plus side, Jessica is continuing to gain weight well – she is now up to 3320g (7lb 4.5oz) and is 51cm long. The heart scan also shows that her heart is still functioning well which is good.

We now have a date for the cardiac catheter procedure – this should be taking place on Monday 14th November and so we will be going back to Southampton for this next Sunday and will be back in hospital for a few days. This will involve measuring the pressures in Jessica’s lungs which will give an indication of what the next stage in this journey will be and we are naturally quite anxious about it. Please can you keep our little girl in your prayers as we approach this next step and pray that we will have good news and that Jessica will cope well with the procedure.