Making good progress

We have had Nanny come to stay with us over the last week or so which has been wonderful – Jessica has been enjoying lots of cuddles and Louise has been very thankful for all the help and support that she has been getting from her mum!

Jessica is continuing to do well and her oxygen saturation levels are generally staying in the mid to high 70s which is good. The diuretics that she was taking have now been stopped and so far she seems to be coping well without them. She is getting quite a big girl now – her weight yesterday was 5050g (11lb 2oz) and she is now above the 0.4^th centile line and almost on the 2^nd centile line. She is still having the Monogen mainly by tube and is mostly keeping it down. The six weeks of Monogen end on Sunday and hopefully Jessica will be able to breastfeed again. Louise has been expressing regularly over the past weeks to maintain her supply and the donor milk bank in Southampton has benefited from some of the surplus milk! We are hoping that the chylothorax will have healed and that Jessica will be able to cope with having mummy milk again.

We are due to go back to Southampton next week for Jessica’s next cardiac catheter investigation which is due to take place on 2^nd February. This will check the pressures in the blood vessels around Jessica’s heart and lungs and will help to plan when the next procedure is likely to take place. We anticipate that we will be in hospital for a couple of days whilst this takes place and will be keeping you posted as to how she gets on.

Settling back into being home

Our first week back at home has gone well. Jessica has been enjoying playing with some of the toys she received for Christmas and the activity mat has gone down particularly well. She is getting better at being able to reach out and grab her toys and is now at the stage that all her toys have to be tasted once she has managed to get hold of them!

Thankfully the feeding tube has stayed in place and Jessica is now managing to tolerate four-hourly feeds. She still brings up the occasional feed but the reflux is much better than it was a couple of weeks ago and she is gaining weight beautifully – now up to 4870g (10lb 11.5oz) and 57.8cm long. Gail, our lovely chiropractor has also been treating Jessica and hopefully this has also helped to ease the reflux.

The community nurse is visiting twice a week to check Jessica’s weight and oxygen saturation levels and all has been well with these. We had an appointment in Oxford on Friday for an echocardiogram. All looked good on scan and our cardiologist decided that the diuretics dosages that Jessica was on could be halved and hopefully stopped at the end of this week if she continues to do well.

Jessica attended her third wedding on Saturday – a wedding blessing for our friends Toby and Ange who got married in Australia at the end of August. We would have loved to have been there for their big day back then but it was too close to the due date to be able to fly out there so it was great to be able to celebrate their marriage with them and for them to be able to meet Jessica.

One of the good things about our recent hospital stay was that we got into a more established routine with Jessica which we have been able to continue since coming home. She continues to be a very happy and smiley little girl and brings so much joy to our lives. We are truly blessed with each and every day we have with our little miracle.

Home, hospital and back home again

It was wonderful to finally be able to come home with Jessica yesterday evening after another good day with her feeds. She passed the ‘car seat test’ (having her oxygen saturation levels measured whilst sitting in a car seat for an hour) with flying colours – her sats were about the best we’ve ever seen them.

Our first night back at home went very well – Jessica had a lovely settled night and slept through the tube feeds. However, she then pulled out her nasogastric tube just as Louise had prepared her morning feed which meant that the community nurse needed to come out and re-site the tube which Jessica was very unimpressed about.

Our problems with the feeding tube were not yet over though – later on in the evening we were unable to aspirate the tube and were concerned that it might have become blocked or dislodged which resulted in us having to make a trip to Wexham Park hospital. The car journey seemed to have helped move the tube though as by the time we were seen by the nurse, there were no problems aspirating it!

Jessica will continue to have her oxygen saturation levels monitored at home and we will be going to Oxford for a check-up at some point next week. We anticipate that we will be returning to Southampton in a few weeks’ time for a cardiac catheter investigation to help plan the next stage but at the moment, we will enjoy being able to have time at home as a family once again. As always, thank you to everyone who has been supporting us, thinking of us and praying for us during our stay in hospital and we will continue to keep posting updates over the coming weeks.

Milestones and moving forward

Jessica has been doing very well over the last few days and we have now managed to increase the amount of milk she is able to drink and have gaps of three-and-a-half hours between feeds which is much more manageable than the two-hourly routine we were on just a few days ago! Whilst we are still having the occasional feed coming back up again, it is nowhere near to the extent it was before so the reflux medication and gradual increase has obviously helped. Ultimately we are still aiming for getting a four-hourly gap at night but the current feeding schedule is one which will be manageable at home.

Jessica has now been moved into one of the side rooms so that Louise can room in with her and provide all her care (with support from the nurses as needed) in preparation for going home. After more than three weeks of having to sleep in a different room (and sometimes a different building) it is great to be able to be so near to Jessica again at night.

Jessica is continuing to gain weight and is now 4600g (10lb 2oz). She was four months old on Friday and celebrated this little milestone by rolling on to her tummy for the first time which was amazing. Unfortunately she had just brought up a feed a moment earlier and rolled straight into it which was less good and meant a bath was definitely in order! She is becoming more and more interested in her toys and can spend ages watching her little hands in fascination. She is also becoming even more of a wrigglebottom than she was before and we have found her in some very interesting positions in the bottom of her cot in the morning where she has moved about so much. It will be interesting to see how she copes with going back to sleeping in the much more confined space of her Moses basket!

Jessica has had a chest X-ray and echocardiogram today and all looks well. Michael has been back with us over the weekend and was greeted with a very big smile from Jessica who was very happy to see her daddy again! She has also had visits from Nanny and Auntie Loraynne and met our friends Emma and James for the first time. We are hoping that we will be able to go home tomorrow which will be wonderful.

Spacing out feeds

Over the last couple of days, we have been focusing on trying to increase the amount of milk Jessica is taking for each feed and to try and space them out. She has tolerated the increase in feed needed to go to two-and-a-half hour gaps between feeds but still struggles with keeping down the three-hourly amount. We are now alternating larger feeds with smaller ones to gradually try and get her used to a bigger amount and get into a feeding pattern which will be manageable at home.

Otherwise, all is well. Jessica is now 4510g (9lb 15oz) and is as happy and smiley as she was before her surgery. She is very inquisitive and loves to watch everything that is going on around the ward. She is also a very sociable baby and has been treating all the nurses and her visitors (Richard, Nicki, Greg, Helen and Katy) to big smiles.

Michael has had to go back home now to go back to work but hopefully it won't be too much longer before we are able to all be home again.

More fun with feeds

Feeding and reflux have been the main issues over the last couple of days with Jessica. Our attempts at trying to help her keep her feeds down weren’t as successful as we hoped they would be and so she is now on domperidone and ranitidine to help ease the reflux. Despite being on extra medication, she was still bringing up most of her feeds yesterday. The team have now decided that as she was breastfed, she was probably used to much smaller amounts of milk than she has been given over the past couple of days and that her tummy probably just isn’t big enough to cope with the volume of feed and so her feeds are now given two-hourly so she can have smaller amounts but more frequently. The aim is to gradually try and increase the volume of milk and start reducing the frequency of feeds before we go home. So far this plan has been successful – she has only brought up a small amount of milk once since starting the smaller feeds this morning and seems much happier. Despite the reflux, she has managed to put on weight and is now 4460g (9lb 13oz).

It is lovely to see her more awake and happy now as well. We have been making the most of various toys and equipment on the ward – she loved the swing and has happily sat in the Bumbo a couple of times and had a look around at everything. There was a magical moment this morning where three of the babies in the nursery were all on the playmat together – two in Bumbos and the other in the swing – a brief and beautiful moment of normality and almost forgetting that we were in a hospital environment.

We have had a couple of visitors – our friend Helen, who met Jessica for the first time, and Katy, one of Jessica’s godmothers. We also managed to stay up to see in the new year (and had a small glass of champagne with some of the other parents!) although Jessica slept through it all. One of the nice things about the ward is the real sense of community with the other parents who are going through very similar experiences – everyone is so supportive of each other which is wonderful.

Happy New Year to you all and hope 2012 will be a good year for everyone.