Day 6 - Surgery plans

With Jessica being on CPAP at the moment, we are making the most of being able to have lots of cuddle time with her and so have been spending most of the day having lovely long cuddles which Jessica seems to enjoy as she is much more settled when she is having cuddle time.

It has been quite an emotional roller-coaster of a day as we are becoming quite anxious about the fact that the next operation is now imminent. Dr Salmon, one of the cardiologists, came to discuss the plan with us. There is still quite high blood pressure in the vessels going to Jessica’s lungs and so at the moment, the Norwood procedure would be extremely risky for her. The team have decided that they would like to try to insert a stent in her ductus arteriosus via a catheter to ensure that this stays open and allow more time to see if the blood pressure in Jessica’s lungs drops enough to allow the Norwood procedure to become an option. They will also check to see if there is any congestion in the pulmonary veins, which if there is, would mean that the prognosis for Jessica would be poor.

The chances of Jessica getting through this surgery have been estimated as being around 80%. There is a danger that if the stent is too large, it could rupture the duct which would be incredibly dangerous and if it is too small, that it could become dislodged and travel further down Jessica’s aorta. We will be praying very hard that Jessica can get through this next round of surgery which has been scheduled for Tuesday.

In the meantime, we have been making the most of being able to have plenty of cuddle time with Jessica. We are falling more and more in love with her every single day – she is such a beautiful baby and we pray that she will continue to be a little fighter.

Grandma and Grandad came to visit again in the afternoon as did Great-Auntie Marlene whom Jessica met for the first time.

Our friends Nick and Charlie very kindly invited us over for dinner in the evening and it was good to get out of the hospital for a short time, although we both found it very hard to leave Jessica.

In the evening we managed to have some more cuddle time and Jessica had some skin-to-skin time with mummy which was lovely.

We are both very anxious about the coming days – please continue to keep us in your thoughts and prayers as we prepare for Jessica to have her surgery on Tuesday.

Day 5 - A day on the sun-bed

It was a bit more of a restless night for Jessica – she was fairly unsettled for the first part of the night and her oxygen saturation levels were dropping a little so the team were considering whether to replace the breathing tube at one point and when Louise went in to see her and express some milk at 3am, Jessica was nil by mouth just in case the tube needed to be replaced. Having some time with mummy worked wonders at that point though and within a few moments, Jessica’s oxygen saturation levels had risen back up and she was much more settled and by morning, she seemed to be doing fine on the CPAP, was back to being able to have mummy milk via her nasogastric tube again and there was no more talk of replacing the ventilator.

We were told in the morning by one of the paediatricians that the plan for surgery on Monday was not for the Norwood procedure as we had been expecting but was likely to be to have a stent put in Jessica’s ductus arteriosus to help keep this open so that the prostin could be stopped. We didn’t have the chance to speak to the cardiac team so are waiting to see whether this is the confirmed plan for next week – as we are learning, things change from minute to minute!

Jessica was still quite jaundiced for most of the day and so remained on her little sun-bed with her space goggles on. Later in the afternoon, Jessica decided that she’d had enough of the catheter and had managed to kick this out but as she was producing lots of wet and full nappies, it was decided that this didn’t need to be replaced. Now that the catheter was removed, there was no excuse for Michael not to do a nappy change (he had understandably been a bit nervous of doing one with so many tubes in the way) so daddy got to have his first experience of changing a very full nappy!

Later on, we were able to have lots of cuddle time with Jessica which was fabulous. She really settled down once she was having cuddles and had a lovely long sleep in mummy’s arms.

Our friend Nick, who is a paediatrician popped in to say hello to Jessica and to help explain further about all the machinery around her! Jessica also got to meet her Uncle Paul and Uncle Peter and saw her Nanny and Auntie Twinny again.

She was quite unsettled and jittery in the evening after all the excitement of the day although we have been told that the jitteriness is probably due to having come off the morphine which she was on after her operation. Having some mummy cuddles worked magic though and helped her to settle down. Her jaundice was also improved by evening so she was able to come off the bili-blanket.

Day 4 - CPAP and cuddles

Jessica had another good night and her oxygen levels were still stable in the morning which was good. She had another echo and chest X-ray which showed that the situation with her lungs was not worsening and so the team decided that her breathing tube could be removed and they would try putting her on CPAP (continuous positive airway pressure) which would help give her oxygen but she would be breathing by herself. We were warned that the breathing tube would need to be replaced if Jessica seemed to be struggling with CPAP though.

Jessica was given a special hat to hold the tubing for the CPAP in place and then the plasters and tubing from the ventilator were finally removed. Thankfully she seemed to cope well with the change and now that the breathing tube is removed is able to cry and communicate with us that way. It is lovely to be able to see a little more of her beautiful face although the hat hides all her lovely dark hair.

As Jessica was doing so well on the CPAP, by early evening, she was able to come out of her cot for a while and we could finally give her a cuddle which was just amazing!

Later that evening, she had some more visitors – meeting Uncle Adrian and Auntie Julie for the first time and Mummy and Daddy’s friend Katy.

Jessica has been a little jaundiced over the last few days but her bilirubin levels have been remaining fairly steady; however, by the night time, they had started to rise a little and so she needed to start on phototherapy which meant that she spent most of the night on a little sun-bed with some space googles on to try and help reduce the jaundice.

At the moment, it is looking like she will be going for the Norwood procedure on Monday which we are quite anxious about as this is a risky op so please continue to keep us in your thoughts and prayers.

Day 3 - A taste of the PICU rollercoaster

We had been told to expect that things can change from minute to minute over on PICU but Jessica had been so settled on day 2 that we had forgotten this a little. She had a good second night and in the morning, the plan was to remove her breathing tube later that day and see how she got on without it. Jessica is being given prostin to help keep her ductus arteriosus open so that oxygenated blood can get around her body but this needed to be reduced before the tube was taken out as it can reduce her respiratory rate. However, having woken up a bit more in the morning, Jessica wasn’t quite so settled as she had been the previous day and her oxygen saturation levels were fluctuating more than they had been and there was some concern that this duct wasn’t staying open so well.

When we arrived to see her, the team was considering whether to take her for more surgery to put a stent in the duct to help keep it open or even whether to bring the Norwood procedure forward. We hadn’t been prepared for this and so were quite anxious about the prospect of more surgery so soon. Thankfully though, the cardiac echo showed that the duct was staying open but an ultrasound scan was showing that the left lung was looking ‘wetter’ than the right indicating a difference in blood flow between the two.

Whilst the team on PICU weas discussing the implications of this with the cardiac team, Jessica was sedated again and had the drains removed from her chest and was much more settled after this. Dr Salmon, the cardiologist came over to talk to us – they weren’t too worried about the situation with the lungs, particularly as the fluid wasn’t on the lung where the veins had been repositioned and just would continue to monitor things. Jessica would stay intubated for the day and the plan was back to considering the Norwood procedure or possibly a stent early next week.

It was a relief to see that Jessica was looking more settled and to know that we weren’t going to have more surgery that day. Her breathing was much better than it had been in the morning and her oxygen levels were stabilizing again which was reassuring. She had been nil by mouth for most of the day to allow for taking her breathing tube out or going for surgery and this gave Louise a chance to catch up on providing some milk so that Jessica could finally have some feeds that were just mummy milk once she was able to be fed again.

In the evening, Jessica got to meet Auntie Maxine and Auntie Loraynne for the first time and seemed to be quite chilled out and settled.

We were given a room over near PICU for the night and it has been good to be able to be so close to Jessica rather than going back and forth between the two hospitals (not that it is far but it is easier to be just down the corridor and also means Louise can be with Jessica each time she expresses which helps with milk production). The plan at the moment is to see if Jessica’s breathing tube can be taken out today but we are learning to take things very much as they come!

Day 2 - Meeting grandparents

Our little Jessica is continuing to do well. Her second day in the world has been another fairly eventful one where she has been meeting her grandparents and Auntie Twinny for the first time.

Her first night after her operation was a good one, although there was initially a bit of concern that she wasn’t weeing enough and so one of her drugs had to be increased to help with this. She also needed another line put into a vein in her head to allow for more drugs so had her first little haircut for this and the nurses on PICU saved the hair for us to keep.

Louise managed to express some colostrum for the first time to give to her – she had some difficulty at first (realising again the gap between theory and practice!) but had some great support from the breastfeeding support midwife and is now managing to express regularly so that Jessica can have some mummy milk. She is also being given donor breast milk as she is able to have a little more than Louise can produce at the moment.

Jessica was starting to wake up a bit by the afternoon but was still very sleepy although was starting to be a little wrigglebottom again! There was concern again in the afternoon that she didn’t seem to be weeing but then a quick check revealed that her catheter had come out and she had a very wet nappy which Louise was able to change – was very excited to be able to do her first nappy change – the little moments are so very precious right now!

In the afternoon, she got to meet her Nanny and Auntie Twinny for the first time and then later that evening, Grandma and Grandad came to meet her too.

By late evening, she was much more awake and spent a few minutes looking at her mummy before going back to sleep again which was just so wonderful.

Louise is being discharged from the postnatal ward today and we will update again later with how Jessica is doing. Thank you to everyone for all the lovely messages of support we have received so far - we are just amazed by how much love, support and prayer is surrounding the three of us at the moment.

Jessica is here!

Our beautiful little Jessica Charlotte is here! We had an induction booked for next Monday but Jessica decided that she wanted to choose her own birthday and arrived yesterday morning at 8.50am, weighing in at 2550g (5lb 10oz). Her first day of life has been quite eventful but she is doing quite well so far and we have taken another small step forward on this journey.


We were glad that things managed to happen naturally and Jessica was amazingly strong throughout labour – there were only a couple of very brief moments where her heart rate dropped slightly but on the whole, the trace on the CTG monitor remained very reassuring throughout. She wasn’t quite in the best position to be born and so had a little bit of assistance with forceps but announced her presence with a lovely cry – the most beautiful sound in the world – and had a brief cuddle with her mummy before being checked over by the team.

We were very reassured that she seemed so well at birth – lovely and pink, and being very vocal about the fact that she was here. We had asked that she be baptised straight away and the chaplain came and baptised her within a few minutes of her being born. After the team had checked her over, we had a few more moments of being able to cuddle her before she was taken off to the neonatal unit.

It was a couple of hours before we were able to go over there to visit her but in the meantime, our cardiac consultant, Dr Gnanapragasam came over to update us. Jessica had had a heart scan on neonatal unit which showed that the situation was pretty much as expected – the hole between the two atria was very small and there was some additional restriction in the blood flow from the pulmonary veins to the lungs but as she seemed to be doing well, the surgeon, Mr Haw, was prepared to operate on her. The plan was for her to have her first operation later that afternoon to surgically enlarge the hole between the two atria but also to move two of the pulmonary veins into a better position into the heart.

It was so wonderful for us both to be able to have some more time to cuddle Jessica when we went over to the neonatal unit to see her shortly before she was transferred over to the paediatric intensive care unit (PICU) at the main hospital site. Louise managed to have some skin-to-skin time with her and she even had a few moments of latching to the breast and having a very brief feed. Another little miracle moment which we never thought we’d get to experience with her!


Michael went over to PICU later to be with Jessica who was already sedated and on a ventilator ready for her operation and managed to spend a little more time with her before she was taken away to theatre.

We had a few anxious hours of waiting before she came back from theatre a few hours later having got through her first operation fairly well.

At the moment, we are taking things very much on a day-by-day basis. The next two weeks are going to be very critical – hopefully Jessica will continue to recover well from this first op. The next stage of the journey will be much riskier for her – she will need to have another operation in about a week’s time which is likely to be the Norwood procedure and involves a fair amount of replumbing.

Please continue to keep us in your thoughts and prayers during this time. We have been so very blessed so far on this journey – having been able to have time and cuddles with our beautiful daughter and to see her looking so well in those first few hours after birth has been a miracle in itself as is the fact that she has got through another little stage on her journey with this operation on her first day of being in this world.

35 week scan update

It was back to Oxford again this afternoon for another scan. The situation with Jessica’s heart looks pretty much the same as it has been at the last few scans – the foramen ovale still appears to be very small but there is blood flow through it and Jessica appears to be coping well. Her size wasn’t measured today but as far as we know she is still continuing to grow well. She is certainly still a little wrigglebottom and is moving around lots (particularly in the evenings) and getting hiccups at least a couple of times a day. Just the fact that she is active and as well as can be expected is a huge blessing.

We have one more scan appointment booked at Oxford for 38 weeks and that will be the last appointment there before the induction the following week. Hopefully Jessica will continue to grow well and hold off her arrival until September and we will keep praying for the best possible outcome for her.