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.

Withdrawal symptoms

Jessica is now off the ventilator. She was on CPAP for a short while yesterday and is now having oxygen through opti-flow nasal specs. We had a brief moment between changing oxygen delivery method and putting a new feeding tube in to be able to see her beautiful face without all the tubes! So far, she seems to be coping very well without the ventilator.




However, as she has been quite sedated for most of the time since her operation last week, Jessica is experiencing some withdrawal from these drugs and so was very awake throughout most of yesterday and quite jittery. Despite looking completely exhausted, she was really struggling to fall asleep – she would close her eyes briefly and then would be very wide-eyed again and upset. Jessica was also rolling her tongue about which was due to the withdrawal and although using a dummy helped to calm her down and soothe her, the tongue rolling meant that it kept falling out and she would then get quite upset again. She was given some oral sedatives last night but they didn’t seem to have that much effect and it wasn’t until 3am that she finally managed to fall asleep. Thankfully all her other observations stayed normal during this time which was reassuring but it was very hard to see Jessica getting distressed and not being able to do very much to soothe her.

This morning though, she seemed better – her gaze yesterday was very fixed and she would only look at us if we put our faces very close to hers whereas now she is looking around more. The tongue rolling is also less than it was yesterday so hopefully the withdrawal symptoms are starting to ease. She is still on morphine though and so we may have more withdrawal symptoms when she stops having this.

Another little trip on the rollercoaster

Jessica had a fairly quiet day for most of yesterday – the team had decided that as she had had a struggle with being off the ventilator the previous day, it was best to keep her on the ventilator for at least another day so that she will hopefully cope better the next time it is removed. She was more awake though and seemed to be quite chilled out about all the tubes, just looking up at us and even managed a couple of half-smiles.

In the evening though, we had another ride on the PICU rollercoaster as Jessica’s oxygen saturation levels were starting to drop again and so she had another chest X-ray and echocardiogram to try and find the cause of this. The chest X-ray showed that her lungs were a little wet so the doctors have increased the dosage of the diuretics to help with this. On the echo, Michael, the registrar, was able to see the flow through the top and middle of the shunt but not at the bottom and although there was still blood flow to the lungs, he suspected a small blood clot. It meant that Jessica was put back on heparin to help break the clot down and the surgical team were informed just in case Jessica’s chest needed to be re-opened in order to remove the clot.

Thankfully, within about half an hour of starting the heparin, Jessica’s oxygen saturations started to come back up again and when the echo was repeated in the morning, there was clear flow through the shunt. The cardiology team were considering whether Jessica needed to go back to theatre today for a cardiac catheter investigation to look more closely at the shunt and check whether there is a clot there but they have now decided that they are happy with the results of the echo for now.

Jessica has also had her central line (one of her IV lines) taken out today so there are a few less tubes coming out of her and the plan is to take her back off the ventilator later today. Hopefully she will cope better with it this time.

A reminder of the PICU rollercoaster

We have been reminded today that life on PICU is a bit of a rollercoaster ride and that one stable day does not necessarily mean that things will continue on an upward trend without a few hiccups along the way. When Louise went in to express her milk at 4am, Jessica was quite unsettled and agitated which was causing her blood pressure and heart rate to rise. None of the attempts to calm and settle her down seemed to be having any effect and by 6am, the team on PICU decided that it was safest to sedate her again and put her back on the ventilator.

Jessica has had a chest X-ray and an echo, neither of which have given any particular indication as to why Jessica was quite so agitated – it may just have been that the ventilator was taken out a little too soon and that once Jessica started getting stressed, she got into a bit of a spiral and worked herself up and then couldn’t calm down again. Her blood pressure and heart rate were back to normal once she was sedated and we are hoping that perhaps she can come back off the ventilator in the next couple of days.

The second bump on the rollercoaster ride came later in the morning, when we were told that Jessica had something called a chylothorax which is an accumulation of lymphatic fluid (chyle) in the lung cavity. This is a common side-effect of surgery as the thoracic duct, which is a lymphatic duct, can be damaged. The leakage of chyle into the lung cavity can cause damage to the lungs and so in order to stop this, Jessica needs to been put on a reduced fat formula called Monogen for around six weeks, in order to allow the duct to heal. In the meantime, she is unable to have any breast milk due to the way the fats in breast milk break down.

Whilst we understand now why Jessica has to have the Monogen, Louise was still quite upset by this as breast feeding is something that is very important to her and has been one of the few things she has been able to do whilst Jessica has been on PICU. As Louise has been expressing regularly to maintain her milk supply, we currently have quite a surplus of expressed breast milk (EBM) (about three litres currently!) and Louise is hoping that she can donate this to the milk bank in order to help other babies. She is also intending to continue expressing her milk as hopefully Jessica will be able to breastfed again at some point in the future.

We had a visit in the afternoon from Grandma and Grandad which was lovely. All in all though, it has been quite a stressful day, but the main thing is that Jessica is still recovering well, even if there have been a few little hiccups on the way!

On TV and off the ventilator

Jessica is doing really well. She finally had her ventilator tube taken out this evening and is now on CPAP. Her observations are remaining fairly stable and she is much more awake than yesterday, although isn’t too impressed about all the tubes and despite being quite hoarse from the ventilator, is trying her best to let us know about it.

We had a visit from Santa in the afternoon who came to deliver presents, along with a camera crew in tow. Louise was interviewed briefly about our feelings about Jessica spending her first Christmas in hospital – we are just so happy at the prospect of her being here for Christmas that we really don’t mind where we spend it. With everything going on in PICU, we soon forgot about the camera crew until a text from a friend informed us that Jessica had been on Meridian News that evening! The news bulletin is online here if you want to see our little girl's first TV appearance!

It is nice to see her a little more awake today although she is still quite drowsy with the morphine she is having but hopefully this will start to be reduced soon. Last time she was a little jittery as a result of morphine withdrawal so we are hoping that this won’t be the case this time. We are also hoping that her central line will be able to be removed tomorrow so that there will be a few less tubes going in!

Starting to wake up a little

After all the excitement of the surgery and having to have her chest re-opened, Jessica had a fairly quiet 24 hours being kept heavily sedated and ventilated to allow her time to recover. Thankfully things remained stable during this time and the surgical team were happy to re-close her chest again on PICU this morning.

Now that her chest has been closed, the drugs which are keeping Jessica still and sedated can be reduced and stopped and so she has gradually started to move a little more and has opened her eyes a few times when we have been giving her a kiss and talking to her – just to check that Mummy and Daddy are there before going back to sleep again as she is still very sleepy. She has also been starting to have small amounts of mummy milk again through her feeding tube.

At the moment, she is doing well although her kidneys are struggling a little bit and she is needing a higher dose of the diuretics to help with this. This is likely to be due to her having such a long operation and her kidneys just hopefully need a little time to recover from this. If all continues to be well overnight then hopefully she will have the ventilator tube taken out in the morning.

Jessica - the first 100 days

On a lighter note, Jessica is 100 days old today. Given that at one point in this journey, the odds of us having just one precious day with our daughter seemed slim, it is a huge blessing to have been able to have so many days of being able to get to know her and watch her grow.

Jessica’s first 100 days in the world in numbers:

Days spent in hospital: 33

Surgical procedures (after birth): 3 plus 1 cardiac catheter investigation

Hospital appointments: 8

Blog entries since birth (not including this one): 33

Weight gained since birth: 1530g (3lb 6oz)

Length increase: 7cm

Times sleeping through the night: 6

Weddings attended: 2

Smiles: Too many to count!

It has been quite a journey getting to this point but we are so blessed to have made it this far and we hope and pray that we will be blessed with many more days with our beautiful little girl.

Completing the Norwood

Jessica is now back on PICU and currently stable after a very long and anxious day for us all yesterday. We had some lovely cuddles and smiles before Jessica went off to theatre around 9.45am and then we had an anxious wait for news. In the meantime, Michael helped decorate the ward ready for Christmas (being tall enough to hang the baubles from the ceiling without needing a ladder!) and Louise added some more photos to Jessica’s memory book.

We received regular updates from the anaesthetist to let us know that things were progressing and at 6pm we finally heard that Jessica was off bypass and would be ready to go to PICU around 8pm, although it was 10.15pm before we were finally able to head down to PICU and see her.

The operation was much more difficult than anticipated. The aortic arch repair was successfully carried out but there was a lot of fibrous tissue around the pulmonary bands which caused problems with removing these. The wall of the pulmonary artery was very thin and split which meant it needed to be patched. Mr Haw, our surgeon, attempted to insert the Glenn shunt and this was done but the pressure gradient across the lungs was too high for Jessica to be able to cope with this in place and so it had to be removed and the site where it was inserted re-patched. It meant that he needed to insert a Norwood shunt which uses arterial pressure to help blood flow around the lungs (the Glenn shunt uses venous pressure).

Basically, what this has meant is that instead of being able to carry out the two operations as hoped, Jessica has only had the first stage (Norwood) operation and will still need the second stage (Glenn) operation at a later date. Her pulmonary blood vessels have been quite damaged and will need time to repair and re-grow before this can happen.

Because of the length and difficulties involved in the operation, and being on heart bypass for a long time, we were warned to expect a stormy ride with regards to Jessica’s recovery. Our feelings of relief after seeing her on PICU immediately after the surgery and seeing that she was stable did not last very long. We had just taken our suitcases to the family room opposite PICU when we received a phone call asking us to come back immediately. Jessica’s oxygen saturations were dropping and Mr Haw needed to open her chest immediately as this was likely to be due to a blood clot in the shunt.

As the team carried out the emergency procedure on PICU, we waited anxiously in the family room. Thankfully, we did not have too long to wait for news – after about 45 minutes, we received a call to say we could come back to PICU. Mr Haw informed us that there had been a blood clot and after removing it, Jessica’s saturations had picked back up. Jessica’s chest had been left open with a membrane covering it in case the procedure needed to be repeated, but if things remained stable, the plan would be to close the chest on Friday.

Overnight, Jessica has remained stable although we may have a bit of a rollercoaster ride as she recovers from this latest surgery. She is on the ventilator at the moment and heavily sedated but it is just so good to be able to be with her again. We will continue to post regular updates over the next few days.

Pre-op preparations

Over the last few days, we have been busy catching up with friends and family before Jessica was due to go back into hospital. Jessica has been meeting a few more members of her family and met Uncle Kevin and cousin Matt for the first time as well as catching up with other aunties, uncles, cousins, grandparents and friends over the weekend.

We are now back on Ocean Ward preparing for Jessica’s operation tomorrow. She has been having heart scans, ECGs, blood taken and cannulas inserted ready for this and has coped very well with it all. She also had a visit from some of the Southampton football players who were visiting the ward and delivering Santa sacks to all the children.

We are, of course, quite anxious about tomorrow as it is a big operation and will be praying very hard that our little girl will continue to be a little fighter and get through it all. Please continue to keep Jessica in your thoughts and prayers as she undergoes this next step on her journey. We will update again after the surgery.

13 weeks - Preparing for the next step

Now that the weather has got colder, we are discovering what an impact this can have on Jessica’s oxygen saturation levels. Our little house can get quite chilly on cold days if the heating is not on and this was the case when the community nurse visited earlier in the week. Jessica was feeding and seemed fine but when she was undressed ready to be weighed, her feet were more purple than usual and then her face had started to look a little more blue. We thought we were heading into hospital a little sooner than anticipated as Jessica’s oxygen saturations were measuring lower than usual but once she was dressed and wrapped in extra layers of clothing, her colour improved and oxygen saturation levels came back up. Needless to say, the heating is now on much more and we are making sure Jessica is very warmly wrapped up when we are out and about!

We had a routine check-up in Oxford towards the end of the week and Jessica is gaining weight beautifully – she is now up to 4060g (8lb 15oz).

The date of the next operation is drawing closer and we are due to go back into Southampton on Tuesday to prepare for surgery on Wednesday 14th December. This will be her biggest operation so far and involves reconstructing the first part of her aorta (main artery to the body) so that she doesn't need the duct which was stented and moving it to the right side of the heart from the left. This is the Norwood procedure. Then they also plan to carry out the next stage called a semi-fontan or Glenn procedure which will plumb the superior vena cava (main vein from the top half of the body) into the pulmonary artery (to the lungs). Blood will then flow from the top half of her body straight back to the lungs without being pumped. We are quite anxious that she is able to cope with both the surgery itself and also her new circulation.

We have been very fortunate that so far she has been able to bounce back from her previous operations with few complications along the way and it's easy to look at her and how well she looks and forget the underlying problems she has. Times such as now bring things into focus and we remember that there are several hurdles to cross yet on the path ahead and the future is not always certain. Nevertheless the support of others and our faith help to keep our spirits up and we can only hope for the best ahead and see what the future brings,

Please continue to keep us in your thoughts and prayers as we prepare for this next step on our journey.

12 weeks - meeting Santa

Jessica is now twelve weeks old and is doing so well with her weight gain – she is now up to 3980g (8lb 12oz) which is great, especially as she is still breastfeeding well and taking less and less top-ups of Infatrini.

She had her first visit to Santa’s grotto earlier this week and slept most of the time we were in the queue, waking up just as we reached the front of the line. She wasn’t quite sure what to make of Santa though and looked a bit wary!

We had another appointment at Oxford this week – this time it was for an ultrasound of the veins in her legs as there had been difficulty locating various veins when the team in Southampton did the cardiac catheter. On scan, the veins in her right leg look normal although the doctor was unable to see all the veins he was looking for on the left side. He didn’t seem too concerned though – just said that it was useful information for any future cardiac catheter procedures.

Jessica is cooing more and starting to be quite chatty which is such a joy to see and is such a smiley happy baby. She is also starting to realise that she can hit the toys on her bouncer/activity mat and make them move and gets very excited when she does so! As has been the case throughout this journey, we just continue to live from day to day and enjoy every precious moment.