Two years post-Glenn

Today is one of Jessica’s heart days – it is two years today since her Glenn procedure. This time two years ago, she had just come out of theatre and was in PICU.  It is such a huge blessing to look at her today and see how far she has come.  Like all heart parents, we have learned to make the most of every moment with our children and we were very sad to hear that some friends of ours recently lost their little girl.  We are reminded that our children are a very precious gift and how important it is to make sure they know they are loved and enjoy all those precious moments.  Our thoughts and prayers are with our friends at this very sad time.

 

We were sad to say goodbye to our wonderful toddler signing teacher Bev at Tinytalk today as she is stepping down from teaching baby signing.  Bev has taken all of the signing classes that Jessica has attended for the last two years and we will miss her – thank you Bev, we have enjoyed the last two years of your classes very much.  

Jessica is now able to recognise all the numbers from 1 to 10 which is great fun when we are in the lift at the shopping centre as she points out the numbers each time the doors open: “Hello number three, bye-bye number three, see you soon number three!”  She is also getting there with being able to count to 20 and is starting to learn her colours although still gets a bit mixed up with these at the moment.

We had a lovely few days staying with Nanny and catching up with the family last week whilst Daddy was away in Berlin and Jessica and Sophie got to meet their new cousin Gracie-Mae who was born a few weeks ago as well as seeing a few of their other cousins.  They also have another new cousin who was born earlier this week – baby Freddie – although we haven’t yet met this latest addition to our family.

Check-ups, coffee mornings and celebrations

Jessica had her check-up with the paediatrician at Wexham Park this morning.  She weighed in at 11.9kg (26lb 3oz) today, so continues to follow the 25th centile line for weight and her height was measured at 82.8cm, putting her between the 0.4th and 2nd centile for height – so far she seems to be taking after Mummy on the centile charts (Sophie on the other hand is on the 50th centile for weight and the 75th centile for length!)  Jessica’s sats today were between 77 and 81 so remain stable.  The paediatric team are happy with her progress and will see her again in six months’ time.  

We also had an appointment for Sophie at the same time as we have noticed that her hands and feet are often blue when she wakes in the morning.  We were reassured to be told that Sophie’s sats are normal as were her heart sounds but have been referred for an echo just to be on the safe side.

We have had a very busy weekend with our girls – we had a coffee morning raising money for Little Hearts Matter at church on Saturday morning (thank you to everyone who came and helped us raise £52.80 for the charity) and then celebrated Mary & John’s diamond wedding anniversary before heading off to two first birthday parties for Jessica and Sophie’s friend Alex and their third cousin Elisabetta.  Mummy enjoyed Mother’s Day with both her girls and got very emotional at church seeing Jessica walk in with the other children and help hand out daffodils.  It made us realise how truly blessed we are and how far Jessica has come on this journey so far – God has been so very good.

It has also been good to be able to get out and about a lot more now that the weather has started getting nicer.  Jessica has been enjoying trips to the park and walks around Black Park (we were quite impressed that she managed to walk all the way from the car park to the playground and then part of the way back – that’s quite a long walk for those little legs!)  She has also been enjoying helping Mummy bake cakes (although admittedly none of the cake mix in Jessica’s bowl manages to make it into the oven!)  Jessica is getting more and more chatty now as well which is lovely and also loves to sing along to her music – it is lovely to hear her singing away (although sometimes she goes a little shy if she realises we’ve been listening!)

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.