Days 23 & 24 - Off to Oxford

It was time to say goodbye to the staff on Ocean Ward on Wednesday morning as Jessica and Louise were off on a road-trip, heading to John Radcliffe hospital in Oxford – a bit closer to home and another step nearer to actually going home.

Jessica slept in the pod the whole way to Oxford but was a bit unsettled her first night in her new surroundings. Like when we left PICU, it took a little while to readjust and we missed Ocean Ward at first, having become used to the routine there but by morning we felt more settled.

The team on the ward here were already very aware of Jessica and her history – apparently she has been talked about quite a lot as a result of the surgery she had at 28 weeks gestation. Other than Dr Manning and Dr Archer, we hadn’t seen any of the consultants that were involved in that surgery since it happened, so it was a nice surprise when Dr Ormerod popped in to meet Jessica and see how she was doing.

Louise is able to have a bed next to Jessica’s cot here which makes it much easier with night-time feeds – she no longer needs the nursing staff to come and wake her when Jessica needs a feed.

Grandma has already been to visit and now that we are nearer home, Michael is able to come and visit after work as well.

Jessica’s oxygen saturation levels are no longer being continuously monitored – as they have been stable for a few days without her needing any oxygen, they are now being monitored every four hourly when her other observations are checked. Now that Jessica is not hooked up to any wires, we can take her for a walk up and down the ward. Her weight is now being checked twice a week and hopefully she will continue to gain weight.

The current plan is to monitor how Jessica gets on over the next few days but as she is doing so well, we may be able to go home early next week which would be wonderful.

Days 21 & 22 - Making good progress

It was a disappointing start to the week when Jessica was weighed on Monday morning and found to have lost 60g. When Jessica is being weighed on a daily basis, it is easy to get fixated on what that day’s weight is and lose sight of the bigger picture, so having a friend point out that Jessica had actually gained 80g over the week was very helpful. Still, it meant another chat with the dietician, having her nappies weighed again to keep an eye on her output and topping up with Infantrini after each breastfeed. Thankfully, her weight is up again this morning, by a whopping 160g, bringing her almost back to birth weight at 2530g (5lb 9oz).

Jessica has been completely off oxygen since yesterday morning and hasn’t even required an occasional waft of oxygen after a feed which is excellent progress. She is doing so well!

We have had lots of visitors over the last couple of days with various friends popping in to say hello and see Jessica – Natalie, Glenis, Clare and Jessica have met her for the first time and Gavin, Alex and Katy have also visited again.

It was also a nice unexpected surprise to have a visit from our lovely Oxford consultants, Dr Manning and Dr Archer, who were in Southampton for a meeting with the consultants here. They both seem pleased with how well Jessica is doing and got to meet her for the first time after seeing quite a lot of her on scan before she was born!

We should be seeing more of them over the next few days as the plan is to transfer to John Radcliffe tomorrow morning (assuming they have an available bed) and be cared for there for a while before hopefully then going home. We are taking another step nearer to being able to take Jessica home which is just amazing.

Days 19 & 20 - Gaining weight

Jessica is doing really well with her weight gain now, gaining 70g when she was weighed on Saturday and then another 20g this morning so her weight is now up to 2430g (5lb 5.5oz) which is great. Feeding is going really well – she is having mostly breast milk with the occasional top-up of Infatrini and is now managing to breastfeed for longer.

Jessica is mostly off the oxygen although still needs to have an occasional waft of oxygen just after a feed, particularly when the feed has been quite a large one! It is lovely to have most of the tubes removed now – with the oxygen tube gone, we have been able to see all of her beautiful little face for the first time since those few minutes with her after she was born! The only wires she has left now are for the sats monitor and the apnoea alarm.

We have had a few visitors over the weekend with friends popping in to meet Jessica for the first time – she has now met Neil and Sandra, Robin, Phil and Becky, and Pippa.

It has been lovely to have Michael back for the weekend, although he had to go back this afternoon as he is working this evening. Jessica enjoyed having lots of cuddles with her daddy.

At the moment, it looks like the plan for the coming week is to hopefully transfer to Wexham Park hospital around the middle of the week. This would mean that Louise and Jessica would be much nearer home and will help the paediatric team at Wexham Park to become more familiar with Jessica’s heart condition which will be useful as it would be our nearest hospital in an emergency.

Days 17 & 18 - Off the oxygen

It was a relief to find that Jessica had gained weight on Thursday morning – she gained another 40g, bringing her weight up to 2350g (5lb 3oz). Louise was also making sure she was taking better care of herself too and thankfully her milk supply was also starting to come back again.

Jessica had an echocardiogram in the afternoon which showed good blood flow through the stent that was put in with the last surgery.

Auntie Loraynne came for another visit in the evening and got to have some cuddles with Jessica.

Jessica had a very settled night but despite having some extra formula top-ups during the day, her weight had dropped again by 10g. The dietician came to review and was happy with Jessica continuing to breastfeed and having top-ups of expressed mummy milk where Louise was able to express enough, but if Jessica needed additional formula top-ups, she should have Infatrini, which is a high-calorie formula, to help her regain weight.

Other than the small fluctuations with her weight, Jessica is doing well and was able to come off the oxygen completely. She still occasionally needs a little oxygen immediately after a feed, although the team suspect this is due to reflux and since she has been having Gaviscon before feeds, she has less tendency to drop her oxygen saturations after a feed.

Our friends Hannah and Katie came to visit in the evening and meet Jessica for the first time and Michael came back for the weekend to be with his family and have some cuddle time with Jessica.

Days 15 & 16 - Focusing on feeding

There was some good news on Tuesday morning when Jessica was weighed and found to have gained 20g bringing her weight up to 2310g (5lb 1oz) – it looked like the extra top-ups of fortified expressed milk were helping.

Our friends Gavin and Alex came to meet Jessica in the afternoon, as did Louise's friend Carole, who is one of her midwifery colleagues.

Jessica was being a little milk monster in the evening and was feeding almost continuously from about 7pm to 2am. Louise was hoping that all this extra feeding was going to result in some weight gain for Jessica in the morning so it was a bit disappointing to discover that Jessica’s weight was still the same when she was reweighed.

As the day wore on, it became apparent that stress and the challenges of trying to eat and drink properly had been taking their toll on Louise’s milk supply as Jessica was wanting to feed more and more frequently and was no longer settling after feeds and Louise was also struggling to produce extra milk when expressing to give as a top-up. Although we had hoped that we would just be able to give Jessica breastmilk, it was clear that she needed more than Louise could produce and so has started having some formula top-ups after each feed. Hopefully a few days of being more vigilant about eating and drinking enough and trying to rest will help with the supply of mummy milk.

Jessica had some more visitors in the evening – Katy popped in again to say hello as did Uncle Adrian and Auntie Julie and she also got to meet cousin Dawn for the first time.

Days 13 & 14 - More new experiences

Despite the dosage of the diuretics being reduced, Jessica lost a little more weight bringing her weight down to 2290g (5lb 0.5oz). Often babies with heart problems have more difficulty with breastfeeding as they tire more quickly and we have been told that we have been quite lucky that Jessica has been able to latch and feed as well as she does. Still, it seems that perhaps she gets tired before she is able to get all she needs and so Jessica is now having a top-up of expressed milk after each feed to help her regain weight.

She had another visitor in the afternoon – Elizabeth, who was our minister at church when we got married, came to say hello and meet Jessica for the first time.

In the evening, Jessica had her first bath and seemed to be very happy with it although had a little grumble when it was time to get out!

It was a relief in the morning when Jessica was re-weighed to discover that she hadn’t lost any more weight – her weight was the same as the previous day and the team may consider reducing her diuretics further if needed and she is having fortifier added to the expressed milk to help her regain weight.

We registered Jessica's birth in the afternoon so she is now officially here!

Michael was making the most of cuddle time with Jessica as he had to go back home in the afternoon ready to be back at work tomorrow. It is a little hard adjusting to not all being together but he hopefully should be back with Louise and Jessica at the weekend. After Michael had left, Katy came to visit and see Jessica again.

Day 12 - Another move

Jessica decided overnight that now that she was being fully breastfed on demand, she no longer needed her nasogastric tube and so decided to pull this out herself! She had a weigh-in in the morning and unfortunately had lost weight from the previous day, going back down to 2340g (5lb 2oz). The doctors came to review and decided that the weight loss could be due to Jessica being on diuretics four times a day so have reduced this to three to see if this is the cause. Jessica seems to be feeding well and settling after a feed so we are hopeful that she is getting enough.

In the afternoon, Jessica was moved from the high-dependency bay on Ocean Ward into the nursery and whilst her heart rate and oxygen saturation levels are still constantly being monitored, she no longer needs to have a constant ECG trace. Another step in the right direction! Her oxygen saturation levels tend to fluctuate so the amount of oxygen that she needs has to keep being adjusted up and down at the moment but she is doing well overall.

In the evening, Jessica had another visit from Grandma and our friend Nick also popped by to say hello again.

Day 11 - A new home

As Jessica was back on nasal specs, it meant that Louise was able to try and breastfeed her again. As the cannulas in her arms had been removed, Jessica no longer had the splints on her arms which made things a lot easier and she finally managed to have her first proper feed! Once she’d had a taste of mummy milk there was no stopping her and she is now breastfeeding on demand rather than having expressed milk through her nasogastric tube (although this remains in place for now).

Jessica was weighed in the afternoon and has put on some weight again and is now 2510g (5lb 8oz). She also had all her stitches and pacing wires taken out although wasn’t too impressed with being poked and prodded about and voiced her objections to this quite loudly!

As Jessica is doing so well, we were finally able to be transferred from PICU to Ocean Ward. Although we were pleased to be making this move, we did feel a little sad at the same time to be leaving PICU as it has become such a familiar environment after having been Jessica’s home for the last ten days and the care from the team there has been superb.

Jessica seems to have settled in well on Ocean Ward though and both Michael and Louise were able to stay on the ward overnight which has made it much easier for Louise to breastfeed whenever Jessica wants to be fed.

Day 10 - Recovering well

Jessica is recovering very quickly from her most recent operation and is doing so well. By mid-morning, she was off the CPAP and back to just having oxygen through nasal specs which is fabulous. Her chest wound is looking a little sore and weepy at the top and so the team are keeping an eye on this and have taken swabs just in case but all seems well otherwise.

She was able to have some more cuddles again in the afternoon which was lovely and Nanny came to see her again in the evening.

We are hoping to be transferred up to Ocean Ward tomorrow as she is doing so well. There seems to be some difference of opinion about whether she will be able to come home before her next operation – the cardiologists seem to indicate that this is a possibility but we have also been told by other consultants that it is preferable for babies to stay on Ocean Ward until they have had the next procedure. Hopefully we will get more of an idea of whether this is a possibility or not over the coming days.

Day 9 - Second post-birth operation

We had a lovely morning of cuddles with Jessica as we prepared for her surgery. She was wide awake and really looking at us both which made for some very precious moments.

One of the hospital chaplains came in to pray with us about the surgery as we waited for the anaesthetist to arrive and take Jessica upstairs to theatres. Jessica was quite settled as we waited – it was mummy and daddy who were quite anxious about it all.

We were told to expect not to hear anything for at least a couple of hours. Louise had a bit of a heart-stopping moment when her phone rang with what was clearly a hospital phone number just over an hour after Jessica had gone upstairs – thankfully, it turned out to be one of the midwives from Princess Anne Hospital checking to see if she was okay.

After a few hours, we finally had the call we were waiting for – Jessica had got through her surgery and was fine. The cardiologist came to talk to us whilst Jessica was being transferred from theatres back to PICU – they had managed to put a stent into the ductus arteriosus and had injected a contrast dye into the arteries to check that there weren’t any obstructions to the blood flow in the lung, which thankfully there weren’t. Jessica would need to be on a couple of drugs to help stop clots forming in the stent and then if she recovered well and was suitable, the next operation would be a combination of the Norwood and Glenn procedures and would be done in a few months’ time.

It was such a relief to see Jessica when we were finally able to go back to PICU and be with her. She was quite sedated and back on the ventilator but within a few hours was able to go back on to CPAP and we are anticipating that we will be transferred up to Ocean Ward in the next few days.

Thank you so much to everyone for all your thoughts and prayers – we are so thankful to have got through this next stage on the journey and have been so blessed with all the support we have received from so many people. It really helps to know that you are all behind us and that we are not on this journey alone.

Another little miracle

We will be posting a full update of today later on, but just wanted to post a quick update to let you all know that Jessica has had her second post-birth operation and has come through it. Our little miracle is showing once again that she is a fighter. She is currently still in theatre but we have been told she is fine and we are just waiting for her to come back to PICU.

Thank you to everyone for all your thoughts and prayers today - we have been truly blessed once again.

Day 8 - One week old

Jessica is now a week old and started off the day by having Happy One Week Birthday (to the tune of Happy Birthday To You) sung to her at 08.50 – exactly one week after she was born.

She is now able to come off the CPAP and have oxygen through nasal specs instead. The original plan was just to take her off the CPAP for an hour and see how she got on, but she coped so well with it, that she didn’t need to go back on to the CPAP at all. It is so lovely to be able to see more of her beautiful face and hair now that she doesn’t have a CPAP mask and hat covering it all!

We had a call from our cardiac consultant in Oxford, Dr Manning, to let us know what the plan for surgery was after the big team meeting on Monday. Jessica is going to have a catheter inserted into her groin feeding into the main vein from her legs going into her heart and then this is going to be used to check the blood pressure in the pulmonary veins back from lungs which will give more of an indication of how likely it is that long term plan of further surgery would be successful for her. The team are also considering putting a stent (artificial tube) in to either the ductus arteriosus or the descending aorta to help keep this open to allow good blood flow from her heart to her body and allow her to come off the prostagladin keeping the duct open.

If all goes well with this and Jessica recovers well, then hopefully she could come home for a while and then the situation would be assessed over the coming weeks with a view to further surgery around six months if the venous pressures are low enough for her to survive this.

From what we have researched, part of the procedure that we had last week (pulmonary arterial bands) along with the stenting procedure being considered now are what is known as a hybrid procedure which is sometimes done instead of a Norwood procedure, particularly with smaller babies as it delays the major reconstructive surgery to a later stage when the risks are lower.

We spent most of the day enjoying as many cuddles with our baby girl as possible. As Jessica no longer had a CPAP mask on, Louise was able to try to put her to the breast again. However, Jessica has a tendency to go straight to sleep the minute she is in mummy’s arms and this combined with the splints on her arms made it a bit tricky to try and latch her to the breast! She did manage a couple of sucks though and it was nice just to have some skin-to-skin cuddles.

At the time of posting this update, Jessica has just gone in for the operation. We will try and update as soon as possible – please continue to keep our daughter in your thoughts and prayers.

Day 7 - A change of plan

Thinking that Jessica’s next surgery was scheduled for the next day, Tuesday, we decided that we were just going to have a quiet day having lots of cuddles with our beautiful baby girl in preparation for this.

Jessica was much more settled than she had been over the previous couple of days and was able to come off the CPAP for a short while in the afternoon in order to be weighed and measured. She has lost 200g from her birth weight and now weighs 2350g (5lb 3oz) which is normal – most babies lose some weight in the first week after birth. However, because Jessica will need further surgery in the coming weeks if tomorrow’s operation is successful, the doctors would like her to put the weight back on as quickly as possible and so fortifier is being added to the mummy milk to help with this. Her length was also measured and is 48cm so she is quite long for her size. The dressing on her chest has also been removed and she has quite a neat wound from her first big operation but it seems to be healing well.

We also managed to dress her in one of her little babygros for the first time – although had to leave her arms out because of the cannulas in them.

In the afternoon, the anaesthetist came to talk to us about the operation. Our cardiac consultants from Southampton were having a team meeting in Oxford with our other consultants and at that point we hadn’t heard when the surgery on Tuesday was likely to be. We were then told that the surgery would now be happening on Wednesday as there were other more urgent cases happening on Tuesday and also the whole cardiac team would be around on Wednesday and so the team felt it was better to delay Jessica’s operation another day. On the plus side, it gives us another day for cuddles and Jessica has another day to recover from her last operation.

On the whole, Jessica is doing very well with her recovery although keeping her cannulas in to allow her drugs to be given and blood gases to be measured is tricky as she is quite feisty and determined to have her hands near her mouth and so the cannulas in her elbow creases are getting a hard time. The nurses have tried to double splint her arms to try and keep them straight but Jessica soon works out how to get around it and bend her arms again! She is definitely a little fighter and hopefully will continue to be so on Wednesday.

We’ve both been amazed by how much support we are getting from so many people – thank you to everyone who is praying for and thinking of our little girl.