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.