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.