Celebrations

 

Over the last weekend, we have had been enjoying a couple of celebrations.  Friends of PICU, the charity which supports children on the paediatric intensive care unit in Southampton and their families celebrated reaching the million pound milestone in their fundraising with a party which Jessica enjoyed very much.  It was particularly lovely to see Willow, who is a similar age to Jessica and who we last saw as a baby in hospital after her Glenn procedure, and her family.  What a joy to see two little heart girls together again and doing so well.

The following day we were visiting Nanny and helping her celebrate her birthday.  This also meant seeing a lot of other family members who were dropping in to wish Nanny a very happy birthday and Jessica thoroughly enjoyed seeing her cousins, aunties and uncles.  Jessica also got to see her cousins on Daddy’s side of the family as they made a brief trip over from Luxembourg and it was lovely to see her and the twins playing so nicely together.

Jessica had a trip to the dentist last week and got a sticker for being a very good girl and letting the dentist check her teeth (getting her to roar like a lion worked quite well for getting her to open her mouth nice and wide!)  Dental care is really important in children with CHD because of the potential risk of endocarditis with tooth decay or gum disease and it is always a relief to be told that Jessica’s teeth look clean and healthy!

With Sophie getting bigger, we are having a time of transitions.  Jessica’s highchair has now been put away and so she sits at the table in a booster seat and she loves this.  We have also now finally got the seat to convert our buggy into a double and Jessica has been enjoying riding with Sophie in the buggy (it will be nice when Sophie can move into the pushchair seat and then they will be able to face each other).  Jessica has also had a little taste of sleeping in a ‘big girl bed’ when we were away for the weekend as we have now moved her from a travel cot into a toddler readybed so that Sophie can use the travel cot.  

Weighty worries

We had our monthly visit from the community nurse today and Jessica has lost a little weight and is back down to 11.64kg (25lb 9.5oz).  Like most toddlers, she goes through phases of being a picky eater and other times she will eat really well.  Weight-gain wise it often feels like she takes three steps forward and then two back and it is easy to start worrying about her weight when she doesn’t seem to be gaining very much or losing weight but looking back to just before her second birthday, she has gained 780g overall and is just about managing to stay on or above the 25th centile.  The community nurse is not particularly concerned about her weight – it is just us as parents who tend to worry about these things!  Sats-wise though she is staying fairly stable – today her sats were 77-81 which is fairly standard for Jessica.

One of the reasons for her weight loss may be because she has been teething recently but the last two molars have now appeared and Jessica now has her full set of milk teeth.  We had a few unsettled nights as a result of teething but this is now much better.

Jessica has been enjoying spending lots of time with family over the last week – Auntie Fizz and cousins Ebony and Erin came to stay last week and we had trips to the Museum of Childhood and did some baking (Jessica particularly enjoyed spooning cake mix into paper cases and then eating it before it could go in the oven!) and some crafts (making a birthday card for Grandma).  Godmummy Gillian also came to stay as it was Sophie’s christening yesterday and Jessica enjoyed seeing lots of family and all her godparents there.

CHD Awareness Week 2014

Today is the beginning of congenital heart defect (CHD) awareness week and so we have put together a video summarising Jessica’s journey so far in order to help raise awareness.

Here are a few facts about CHD:

• Approximately 1 in 100 babies are born with a CHD. Some are detected at the 20 week scan although others are not detected until after birth. Several heart groups have been campaigning for pulse oximetry screening to become part of the newborn check in order to improve detection rates and therefore improve survival rates.
• There are more than 35 different CHDs.
• CHDs are responsible for twice as many child deaths each year than cancer and are the biggest cause of death from a birth defect – 1 in 5 babies born with a CHD will not live to see their first birthday.
• Thanks to research and improvements in surgery, the death rate for CHD has declined by 30% in the last ten years.
• 12-15 babies with CHD are born each day in the UK
• CHDs cannot be cured and so children born with CHDs will require heart monitoring throughout their life and many will require multiple open-heart surgeries, some, like Jessica, within hours of birth.

Teething and talking

Jessica has been quite subdued though over the last couple of days and we think this is probably due to the second set of molars making their way through as she wants to chew on her clothes and toys and has been more unsettled at night than she usually is.  Two of the molars have already made their way through in the last couple of weeks so just two more to go and then Jessica should be done with teething for the foreseeable future (hopefully we’ll have  a few more weeks before Sophie starts the teething process though!)

Teething aside though, she has recovered well from her cardiac catheter and we have had a letter from Dr Archer to let us know that the team have discussed the results which are “very satisfactory” and have agreed that “continued observation is all that is required with a very good chance that we will not need to talk about further cardiac surgery during the course of 2014” – good news!  Our next planned hospital check-up is not until the beginning of April (with the paediatrician at Wexham Park) and hopefully we can stay out of hospital until then!

Jessica’s speech has really been coming along over the last few weeks and she is putting a lot more words together to make phrases (I particularly like Jessica telling me I’m her ‘favourite mummy!’) and is also doing a lot more signing (picking up new signs from Tiny Talk and Something Special).  She made us laugh at bedtime when Daddy mentioned Mr Tumble and was promptly told.  “No Tumble.  Sleep.  Silly Daddy!”  We tried to teach her to say “Auntie Twinny” and were confused when she kept repeating “Auntie Fizz” until we realised that she thought we were saying “Auntie Tweenies” (Fizz being her favourite Tweenies character!)  She also now says “Sophie” rather than “Sofa” (although Sophie is often just referred to as “baby”) and is very good at sharing her toys with her little sister (although Sophie isn’t always so keen at having things shoved in her direction!) and making her smile.

Home again

We’re now all back home again after being discharged from Ocean Ward earlier today.  Jessica had a reasonably good night and by morning was getting back to her usual self, although was still a little bit on the subdued side.  She didn’t enjoy having her dressings removed but being able to ride the cars up and down the ward again soon helped to cheer her up again whilst we were waiting for the discharge paperwork so we could head home.

Thank you to everyone for all your support and thoughts and prayers over the last few days.  It feels good to be back home again!

Coping with another cardiac catheter

 

Despite being nil by mouth from 6am, Jessica was fairly happy throughout the morning, continuing to enjoy riding the cars up and down the ward and enjoying a trip up to the Children’s Playcentre on G level where a magician was visiting to entertain the chidren (plus there were even more fun toys to play with!) By lunchtime she was starting to get tired and tearful and kept asking for milk. Fortunately the Tweenies and Mr Tumble managed to keep her distracted until we were finally ready to go to the cath lab around 2pm. Sophie had timed her early afternoon nap beautifully and was fast asleep in Jessica's cot so we were able to leave her there and focus completely on Jessica going to cath lab. Mummy was able to cuddle Jessica and sing her to sleep in the anaesthetic room before we headed back to the ward to wait. Sophie sleeping in the cot was also good in that it meant we weren't coming back to an empty cot.

It was a couple of hours before we were able to go over to recovery and be with Jessica.  Jessica was very sleepy whilst we were in recovery but was doing well. She had two plasters on her neck as well as the two pressure dressings in her groin and collarbone from the catheter procedure as the team had attempted to go into her jugular veins which were both blocked and then had to go in via her right femoral artery and right subclavian vein.

Jessica continued to be sleepy for quite some time after returning to Ocean Ward as she recovered and Dr Hayes came to discuss the catheter results shortly after our return to the ward. Jessica's lung arteries are quite small (as they have always been although they are growing with her) but there is no discrete narrowing in the pulmonary arteries or the aorta and the areas where they had balloned last time appeared not to have narrowed again so no ballooning was needed.  The pressures in the pulmonary arteries are not particularly high which is good considering they are on the small side. It is likely that Jessica will need to have another cardiac catheter or MRI before the team consider her Fontan procedure (the next big op) to look again at her pulmonary arteries as they will need more time to grow. The smaller arteries may mean that her Fontan may be put off as long as possible as her lung arteries will need to be bigger to improve her chances of a successful Fontan completion.

Jessica has been doing well since the procedure and has not needed any extra oxygen since leaving recovery. Her sats have been around 75-80 and whilst she has been subdued, she does not seem uncomfortable or unhappy. She has added another certificate for being a brave girl to her collection and hopefully we will all be going home tomorrow.

Pre-cath preparations

We are back on Ocean Ward ready for Jessica's cardiac catheter investigation tomorrow. Jessica is third on the list so will probably be going to the cath lab sometime after 12 tomorrow. There was a little concern earlier that the cardiac catheter might have to be postponed as Jessica has had a bit of a cough recently (it has been off and on throughout the winter so far) but as she has had no fever, Dr Hayes, who will be one of the doctors performing the procedure tomorrow, has decided to go ahead with the catheter.

It has been a busy day up on the ward with the usual battery of tests being performed ahead of tomorrow's procedure. Jessica has had an echo, ECG, blood taken (which she was very upset by, poor little love), been weighed and measured (latest weight 11.6kg (25lb 8oz) height 82cm) and had sats, heart rate and blood pressure checked (sats are about 79).  In between she has enjoyed riding up and down the ward in the Little Tikes cars and had visits from Donna and Lily Jones (from Charlie Jones Foundation - lovely to finally meet them both after lots of online chats), Sue the lovely hospital chaplain, our friend Gavin and godmummy Katy.

Tomorrow's procedure is primarily to view Jessica's lung arteries and aortic arch, measure pressures and check that they are growing well. It may be that some ballooning will be needed if there is narrowing.

Daddy will be staying overnight with Jessica and Mummy and Sophie will be staying with our friends Nick and Charlie as the family accommodation near the hospital is full (thank you Nick and Charlie!). Jessica took a little while to settle at bedtime as was quite overtired and tearful after all the activity of the day but is now settled after lots of cuddles.  We will update again tomorrow and let you know how things go.