Crawling, signing and socialising

 Over the last couple of weeks, Jessica has become increasingly mobile and is now quite adept at crawling commando-style across the floor – she particularly likes to get herself underneath our coffee table and computer chair which is fine until she sits up and bumps her head!  She isn’t quite yet pulling herself up on the furniture and trying to stand, but she can hold her weight on her legs briefly when held in a standing position and can also balance whilst sitting on her rocking horse, which she loves.

She has also been adding more words to her signing vocabulary – for a long time, milk was the only word that she signed, but now she will sign ‘daddy’, ‘more’ and ‘all gone’.  She also says ‘goo-ger’ which we think is Jessica-speak for ‘good girl’ given the amount of times we use this phrase each day!

Jessica’s sats continue to be in the high-80s and the community nurse has dropped the frequency of her visits from fortnightly to monthly as Jessica is doing so well – this time last year, the community nurse was visiting twice a week – what a difference a year makes!  Jessica continues to gain weight beautifully – she now weighs in at 8225g (18lb 2oz) and has moved up to the 9^th centile for weight.   She had her flu jab yesterday and was very brave – just a few tears when the injection was given and all smiles again within a couple of minutes.

Our little social butterfly continues to get out and about and enjoy being with people.  Over the last couple of weeks we have been away on the church family weekend, had another mini road-trip finding a few more Olympic gold postboxes (now up to 36 in total – 23 more to go!), helped Grandad celebrate his birthday by going out for a meal and had a visit from cousin Meryl. 

 It is such a joy to see how well Jessica is getting on and watch her discovering more and more each day.  We are due to have another check-up in Oxford on 16 November – hopefully all will continue to be well.

Home again

By Wednesday morning, Jessica was off the oxygen and almost back to being her usual happy self again.  There was good blood flow through the pulmonary arteries and aorta seen on echo and so we were able to go home.

Jessica has been doing well since we’ve been home – lovely and smiley as always and enjoying playing with her toys.  Her weight is now up to 8040g (17lb 11oz) so she is gaining weight beautifully.  Her little wounds from the catheter are all healing well and we are enjoying the fact that for the first time since she was born, we are all having time at home together without having a very clear idea of when the next trip back to hospital will be (other than routine check-ups!)

Ballooning blood vessels

We are back on Ocean Ward again – Jessica has had her cardiac catheter procedure and all has gone well.  All the nurses on the ward have commented on how much Jessica has grown since we were last here (five months ago – what a lovely long time we have had at home between hospital stays!) and how well Jessica looks.  She has been such a brave girl throughout the whole thing – other than being a bit unhappy about having bloods taken yesterday (not a fun process in spite of the magic cream) and feeling quite sorry for herself after coming out of theatre today (not too surprising!) she has mostly been her usual happy self.  Now that she is a big girl, she even has a sticker chart which is gradually filling up due to all the different tests that she has needed to undergo.

Other than all the tests needed in preparation for today’s catheter, Jessica spent yesterday quite happily playing with toys on a floor mat near her cot and giving all the nurses and Sue, the chaplain, big smiles when they came in.  We were second on the list this morning although were a little later getting to theatre than anticipated so lots of distraction was needed to take Jessica’s mind off the fact that she was not able to have any breakfast.

The catheter was being performed by Dr Wilson (the doctor who did Jessica’s very first operation before she was born).  It was a long wait whilst Jessica was in theatre – four hours in total, mostly due to the fact that there were difficulties getting the catheter into the veins, particularly the veins in Jessica’s neck which means that she now looks a little like she has been attacked by vampires, bless her!  There was some narrowing in her pulmonary arteries and aorta which has been ballooned and this should help improve the blood flow in these areas.  Jessica was a little bit wheezy when she first came out of theatre as she has a little bit of a cold but this improved soon after she arrived back on the ward.

 

Jessica has been recovering well – within minutes of getting back to the ward, she made it clear that she was hungry and then proceeded to make up for the missed feeds by having a lovely long feed from Mummy followed by a big bottle of Infatrini!  She got another certificate for being a brave girl and has mostly spent the evening snuggling up to Mummy and Daddy as she is understandably not quite as happy as she was this morning!  She has needed a little bit of oxygen to help boost her saturation levels whilst she is recovering but hopefully by morning she will be back to just breathing air again. 

Thank you to everyone for keeping us in your thoughts and prayers – hopefully all being well, we will be able to go home again tomorrow.