Fun with feeding

The last couple of days have been a little bit of a rollercoaster ride, mostly centred around feeding issues. As it is quite an uphill struggle trying to get Jessica to take much of her feed via a bottle and she gets quite upset about it, we have decided for now that it is much less stressful for all of us to give the feeds via the tube, although will probably try again with the bottle at some stage. It is quite likely that Jessica will go home with a feeding tube in situ but we are both now confident with giving feeds this way and no longer need supervision with this.

In the last couple of days, Jessica has been struggling to keep the feeds down and the doctors were suggesting quadrupling(!) the dose of Gaviscon which she has been taking – going from half a sachet to two sachets per feed. This seems like quite a jump so we have agreed to double the dose for now and see how she gets on whilst trying some more natural methods (keeping her upright, stopping more often during the feed to wind her etc.) to help her keep the Monogen down. So far this seems to be successful and we are hoping to avoid her having to go on any extra reflux medication unless we are sure that it is necessary. Currently she is on three-hourly feeds which works well during the day but we are hoping to increase the night-time feeds to four-hourly before Jessica goes home!

On a positive note though, Jessica has come off the ECG and has moved from high-care into the nursery – another step closer to being able to go home! She no longer needs to have her oxygen saturation levels continuously monitored which means we are able to wander around the ward with her a bit more. She is also doing well with her weight – down 30g yesterday, but staying static today so hopefully not retaining any more fluid.

We have had a few more visitors – Nanny, Auntie Twinny, Uncle Adrian, Auntie Julie, Phil and Becky have all been to see Jessica over the last couple of days and the ward was also visited this morning by a couple of stormtroopers, Captain Jack Sparrow and Batman. We’re still not quite sure what that was all about, but it was entertaining!

High-care ups and downs

Jessica gained another 80g weight yesterday but this morning we were happy to see that she had lost a little weight (30g) so hopefully she is now starting to lose any excess fluid and now weighs in at 4350g (9lb 9oz). It seems very strange to be pleased that she has lost weight rather than gained! She had a chest X-ray yesterday to check that there is no excess fluid accumulating in her chest and this was fine.

Jessica is still being mostly tube-fed with the Monogen and we are getting more confident at checking her tube and giving her feeds with this. Louise no longer needs to be supervised when doing this and Michael has almost reached the point where he doesn’t need to be supervised either. Jessica is getting a little better at taking the Monogen via a bottle but we haven’t yet managed to get her to finish the whole bottle! She had her feeding tube replaced yesterday which seemed to cause some irritation as she was quite sick with the next couple of feeds but has mostly been fine today.

This morning, Jessica was all set to move across to the nursery when the monitor started picking up brief moments where her heart rate was up to around 235bpm. This happened a couple of times yesterday and on screen it looked as though the probe on her foot wasn’t picking up a proper trace but when it was repeated again today, she went back on the ECG which confirmed that there were some irregular beats causing this. Dr Gnanapragasam, our consultant, explained that this was due to supraventricular tachycardia (SVT) which is where her heartbeat is initiated in another part of her heart as well as the sinoatrial (SA) node, where the heartbeat is usually initiated. She has been given a couple of doses of digoxin to suppress these irregular beats.

Whilst she is still having the occasional moment where her heart rate goes back up over 200bpm, this is very short-lived (less than 20 seconds) and she doesn’t seem bothered by it. It does mean though that she needs to be back on the ECG monitor for the next couple of days and staying in high-care for the time being and may also need to go on digoxin for a while if these irregular beats don’t resolve. She also had another echo this afternoon and all looked well on this plus she has also been managing to keep her oxygen saturation levels up in air so is now off the oxygen again.

Otherwise, Jessica continues to do well although still spends quite a lot of her time sleeping as she is still recovering from her operation. She had a lovely visit from Nanny and cousin Wayne yesterday and has been enjoying lots of cuddles.

Making progress

The first time we were on Ocean Ward after Jessica was born, the daily weigh-ins were a source of anxiety, particularly on the days when Jessica lost weight. This time around, we find that gaining weight can also cause anxiety as Jessica seems to have gained 120g since yesterday, bringing her weight to 4300g (9lb 7oz). This amount of weight gain is likely to be due to fluid retention, possibly because she has gone from having her diuretics given intravenously to having them orally. She doesn’t look particularly puffy though and hopefully this is just a blip and will resolve quickly – although the cardiology team are keeping an eye on it.

On a more positive note though, Jessica was able to have her chest drain removed as the amount of chyle leaking out is very minimal now. She also had her last cannula removed and it is much easier to give her cuddles now that the vast majority of tubes and wires connected to her have been removed!

She is still being tube fed and the nurses have been teaching us how to give feeds and then supervising us doing the feeds in case we have to continue giving feeds via a tube when Jessica goes home. We have attempted to give the Monogen via a bottle and Jessica has managed about half the bottle before she decides she doesn’t like the taste anymore!

We are now seeing more and more of Jessica’s personality re-emerging and she was very smiley this morning and happily lying under an activity gym trying to hit the toys. It is such a joy to see her getting more back to her normal self and to know that she must be feeling so much better.

Jessica's first Christmas

We have had a lovely first Christmas with Jessica on Ocean Ward and Jessica has been thoroughly spoilt by everyone! We left a stocking at the end of the cot ready for Santa last night but in the morning discovered that Santa had also left an extra stocking next to Jessica’s cot with a toy for Jessica and a little gift for Mummy and Daddy too! Santa also paid a visit in person to the ward in the morning and delivered some more presents.

We went to the Christmas service in the hospital in the morning and then Grandma and Grandad visited in the afternoon bringing more presents and our Christmas dinner with them. Jessica had some cuddles with Grandma and Grandad and then settled down for an afternoon nap whilst we went off and had some Christmas lunch and opened some presents (thanks to some lovely friends of ours who let us use their house whilst they were away so we didn’t have to brave the hospital canteen or fight for space in the ward kitchen!)

In the evening, Jessica woke up and we opened her presents – she had lots of lovely things – lots of toys, pretty clothes and some keepsakes for her nursery (when we get around to finishing it!).

As far as her recovery goes, Jessica has had a good day. She was weighed in the morning and now weighs 4170g (9lb 3oz) – 90g more than when she was admitted nearly two weeks ago. We had expected her to lose weight so were pleased until we realised that the weight gain may also be due to fluid retention. She had an echo in the afternoon which was fine and there wasn’t any excess fluid showing on this so we are hoping that this is a proper weight gain!

We also were treated to some beautiful smiles from our little girl in the morning – the first real smiles since her operation which was the most wonderful Christmas present. Overall, we have had a lovely day – what a huge blessing it is to be able to spend our first Christmas with our beautiful and brave little girl. We have so much to thank God for – there have been many times on this journey when we barely dared to hope that we would get this far and even though our first Christmas with our little miracle has been spent in hospital, just being able to celebrate Christmas with Jessica here and doing well means that it truly has been the best Christmas ever.

Hope you have all had a lovely Christmas too.

Up on Ocean Ward

Jessica had another stable night on PICU and when we arrived to see her in the morning, we were very happy to see a dot next to her name on the board indicating that she was going to be transferred up to the ward. We were transferred up to Ocean Ward midway through the afternoon and Tany and Phil came to visit as we arrived on the ward.

Jessica has now had the ECG leads removed and is back on oxygen this evening as her saturation levels have been dropping a little bit as she is a little chesty but hopefully the oxygen will not be needed for very long. She is still having Monogen through her feeding tube – we tried to give her it via a bottle earlier in the evening but she wasn’t too keen – whether it was due to the taste or just that she was unsettled due to her new environment we weren’t sure.

Jessica has continued to be unsettled this evening and needing lots of cuddles to try and get her to sleep ready for Santa to visit. Her Christmas stocking is hanging at the end of her cot ready for Santa to fill and we are looking forward to celebrating our first Christmas with our little miracle.

Merry Christmas to you all and thank you to everyone who has been following Jessica's journey over the past year and supporting and praying for us.

A good day on PICU

Jessica is continuing to do well and has had another good day on PICU. She has now come off the oxygen altogether which is fabulous and was able to have more cuddles with Mummy this afternoon. Her pacing wires have also been removed and the team are happy that she seems to making good progress and maintaining good oxygen saturation levels.

Jessica had a visit from Uncle Adrian in the morning and Louise’s friend Vicky popped in to say hello in the afternoon. We are hoping that we will be able to go up to Ocean Ward tomorrow (Christmas Eve) as Jessica has been doing so well. She is sleeping more normally and seems much more settled when she is awake as well and it is lovely to see her being more like her usual self again.

Clots, cuddles and cartoon characters

Our rollercoaster ride on PICU continued yesterday evening when Jessica had a chest X-ray and another echo. The chest X-ray showed that her lungs were looking a little wet and the echo showed that the right lung was more solid than the left. The cardiology team thought that this might be due to a haematoma (blood clot) in the right lung and considered whether Jessica needed to go back to theatre to have her chest re-opened and the blood clot removed. However, as she was doing well off the ventilator and things were stable, Mr Haw, our surgeon, felt that it would be better to opt for conservative management and observe rather than putting Jessica through another operation which may not be necessary.

The plan was then for Jessica to have a CT chest scan in the morning if things remained stable overnight and take things from there. However, as Jessica had a good night and was looking better again in the morning, the team decided that the CT scan would not change the plan of conservative management. Jessica’s breathing rate was also less rapid than it had been the previous day and we are hoping that the clot will just break down and be reabsorbed into the body without the need to intervene.

After the rollercoaster of the past few days, it was wonderful to see Jessica doing so well and in the early afternoon, we were finally able to give our beautiful daughter a cuddle after more than a week of not being able to hold her. Such an amazing moment – we have really missed our cuddles during the last week.

Peppa Pig visited PICU in the afternoon and posed for a photo with the three of us. We also had a lovely visit from Nanny and Auntie Twinny who came bearing Christmas cards and presents from the family.

The number of tubes going in and out of Jessica is gradually decreasing as her arterial line and urinary catheter were both removed today. She has been more like her usual self, looking up at everyone who comes to see her and taking in what is going on, and is also sleeping more normally. We are hoping that things continue to improve over the next couple of days and perhaps we may be back up on Ocean Ward by Christmas Day.