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.

Jessica at 7 weeks

After spending last week out and about, visiting family and going to weddings, it was time for a quieter week at home with Jessica although we have still had lots of visitors. Auntie Maxine and cousin Kieran came to stay for a couple of days and cousins Maria, Chris, Steven and Ryan also came for a visit.

Jessica is continuing to do well and have regular checks with the community nurse. She has had her newborn hearing test and her six week check, both of which were fine, and is gaining weight well – now up to 3140g (6lb 14.5oz). Jessica is following the 0.4th centile line so seems to be taking after Louise size-wise rather than Michael! She is also starting to be more aware of things around her – this week she has been really looking at the toys hanging above her pram when she is in it and starting to smile in response to things which is just magical.

We are still waiting for the date of the catheter procedure to be confirmed although anticipate that this will be happening sometime in the next couple of weeks. Jessica has her next heart scan at Oxford in a week’s time and hopefully this will continue to show that she is doing well.

Jessica at 6 weeks

It’s been a busy week for Jessica – we have been out and about a little more and a few more family members and friends have been meeting her for the first time.

We had a family wedding to attend last Friday where some more members of Michael’s extended family were able to meet Jessica – among them cousins Meryl, Angela, Chris, Katherine, David, Emily and Sam. Jessica’s arrival at the wedding was a little delayed due to having to make an unexpected trip back to the John Radcliffe as the wound from her surgery was looking a little inflamed and we were concerned that it was getting infected. The doctors advised that we just observe it for a few days and return if it worsened but thankfully it seems to be getting better now.

At the weekend, we had some friends come and visit so Sarah, Mark, Lynsey, Sam B and Sam P all got to meet Jessica for the first time.

Wednesday was both granddads’ birthday so we visited Grandad George in the morning to wish him a happy birthday and had a day of visiting Louise’s family and laying flowers in the churchyard in memory of Grandad Crouch. Jessica got to meet lots of cousins for the first time – Lee, Craig, Warren, Tabatha, Jamie, Jason, Lauren, Kieran, Wayne, Holly, Jake, Keely, Aaron, Brandon, Tiarna, Uncle Matt, Uncle Mick, Auntie Sam and the newest cousin Scarlett-Rose who is just twelve days older than Jessica. It was lovely to be able to spend a day with lots of family members.

We have also spoken to our minister at church to arrange a thanksgiving service on 27^th November to welcome Jessica into the church as she has already been baptised.

Jessica had another check-up and echocardiogram in Oxford today – she has gained another 100g and is now 2980g (6lb 8oz). She is continuing to do well with regards to her heart function and oxygen saturation levels. We are still waiting for the date of the next catheter procedure to be confirmed but are expecting this to be in early November.

First week at home

Jessica is now five weeks old and has been home for over a week! It has been wonderful to all be together as a family and to be able to go out and about with her. She seems to be doing well and is continuing to gain weight - up to 2860g (6lb 4.5oz) at the last weigh-in.

We are now having regular check-ups with the health visitor and also the community nurse who comes to check Jessica’s oxygen saturation levels and weight once a week. We are also going back to John Radcliffe every couple of weeks for heart scans. The latest heart scan shows that there is still good blood flow through the stent in her ductus arteriosus and her oxygen saturation levels are remaining stable.

It has been lovely to be able to take Jessica out and about and to catch up with friends. It was particularly good to be able to take her to church last Sunday and so she could meet all our friends there who have been praying for her. Louise also took her along to the Healing Rooms in Perivale as they were also praying for Jessica during Louise’s pregnancy and it was wonderful to be able to bring Jessica and thank God there for our little miracle. We also popped in to a Pastiche rehearsal so that all our friends there could meet Jessica.

We have had a few visitors since we have been home – Nanny and Auntie Twinny were finally able to visit again having missed out over the last couple of weeks due to being unwell and cousins Ebony and Erin finally got to meet Jessica. Michael’s cousin Clare also visited with her twin daughters Seren and Siân and met Jessica for the first time. We also have had visits from Tracy, Bryan and Nicki and Great-Auntie Marlene, not to mention Grandma and Grandad who have also been enjoying being able to see more of Jessica now that we are home.

It is looking like Jessica will be having the catheter procedure to check the pressures in her lungs in early November. At the moment, we are just taking each day as it comes and enjoying every moment of being able to have her home with us – what a huge blessing it has been to be able to be home together as a family.

As always, thank you to everyone for your continued support on this journey – we will continue to keep you posted with regards to Jessica’s progress.

Days 25-29 - Heading home

By Friday, Jessica was doing so well that we were able to take her out in the pram and go for walks around the hospital. It was wonderful to finally be able to take her out of the ward and go and sit in the hospital cafe with her.

Jessica was weighed on Friday and seemed to have lost another 15g, bringing her weight back to 2525g (5lb 9oz) but as she had gained so much earlier in the week, the team didn’t seem too concerned by this. She was continuing to feed well and by Monday had passed her birth weight for the first time, gaining another 130g to take her weight to 2655g (5lb 13oz).

Great-Uncle Ken and Great-Auntie Kathy came to visit over the weekend to meet Jessica for the first time and we also had visits on Monday from Tany and cousins Timmy and Karen.

Jessica had an echocardiogram on Monday afternoon which showed that there was still good blood flow through the stent and as she was doing so well and gaining weight, Dr Archer agreed that we could finally take her home.

It was so amazing to finally be able to go home with Jessica this afternoon after four weeks in hospital. There have been times on this journey that we could scarcely have dared hope that this would ever be possible and so to be finally home with our baby girl is the most wonderful feeling ever. We are finally together as a family and getting a taste of ‘normal’ family life. Thank you so much to everyone for your thoughts and prayers which have helped to get us to this point – we have been so very, very blessed and the support we have received on this journey has been truly overwhelming.

Of course, there are still more stages to get through on this journey, but we thank God that we have got this far and pray that Jessica’s journey will continue and she will continue to grow and thrive. We will be having regular visits at home by the community nurse and health visitor who will be monitoring Jessica’s weight and oxygen saturations and will also be going back to Oxford for regular check-ups.

Jessica is due to have another catheter procedure to check the pressures in her lungs at some point in the next few weeks and this will determine whether the next operation is an option. We will keep praying that she will be able to have the next operation to help her survive and will keep you updated with how she progresses over the coming weeks.