35 week scan

Back to Oxford again this afternoon for another scan. The situation with Jessica’s heart looks pretty much the same as it has been at the last few scans – the foramen ovale still appears to be very small but there is blood flow through it and Jessica appears to be coping well. Her size wasn’t measured today but hopefully she is still continuing to grow well. She is still a little wrigglebottom and gets hiccups at least a couple of times a day. Just the fact that she is active and as well as can be expected is a huge blessing.

Another day, another hospital

Met the Southampton team today and have been booked for care there. The decision as to whether to attempt surgery will be made after Jessica is born as it depends very much on the situation regarding blood flow to the lungs which cannot be fully assessed until they are in use after birth. If this is poor, then Jessica is likely to get sick very quickly after birth and will be too unwell for surgery to be an option. The odds of surgery being a viable option are low but we will keep praying that it will be an option.

Had another scan at Oxford today to check how Jessica is doing. Her heart condition still remains pretty much as before and we are due to see the team at Southampton later this week for another scan and to discuss the possibility of post-birth surgery. Our consultant at Oxford has warned us not to raise our hopes too high though – the severity of Jessica’s heart condition does mean that the odds of post-birth surgery being likely to succeed are still quite low. On the plus side, she is still wriggly and we saw her beautiful little face on scan today.

32 week scan update - part 1

Today’s scan shows a similar picture in terms of blood flow to the one two weeks ago but we have been given another glimmer of hope. The team in Southampton have seen our scans and are willing to consider attempting surgery after Jessica is born. It will depend on whether she is well enough after birth for surgery to be attempted but at least it may now be an option. If I go into labour from now onwards, then Jessica will be given drugs after birth to keep the hole in her heart open and then assessed for possible surgery.

One week post-surgery - scan update

Our scan yesterday shows that Jessica is doing well after last week’s surgery. The team are pleased that the surgery was successful in that the hole in her heart has been enlarged and she coped well with the procedure. There is some improvement in blood flow through that hole and through one of the pulmonary veins although the blood flow through the other still seems much the same and so the current plan is still for comfort care after birth. We will keep praying for further improvements as she will still need more surgery after birth in order to survive.

Successful surgery (hopefully!)

The team at Oxford managed to carry out the surgery on Jessica yesterday evening and it looks like the hole in her heart has been enlarged although it is too early to tell whether it has made much difference to blood flow or whether her odds for post-birth surgery have improved. She seemed to cope very well with it all and is moving about this morning which is just the most amazing feeling in the world. We feel so incredibly blessed to be here right now with her still wriggling about – God has really been amazing throughout all of this.

Surgery update

Jessica is wriggling away this morning which is a beautiful feeling. We are going to be re-attempting the surgery again today though as she wasn’t in the best position to place the needle in her heart to do the procedure although the team did try a couple of times. She seemed to cope well with it (although tried to kick the needle away when they were taking the amniocentesis sample before she was sedated!) We have been told the risk of the procedure is 10-50% so any prayers for Jessica to get through all this will be very much appreciated.

Praying for Jessica

And so the big day is here and Jessica’s operation is scheduled for this afternoon. I am scared but I know that my baby girl is surrounded by so much prayer at the moment and there are so many people out there praying that the operation will be a success – family, friends and friends of friends. I know that Jessica is in God’s hands and that He is always with all of us – throughout the operation and in the days ahead. Every little wriggle today is precious and I pray that there are still many more of them to come.

A ray of hope

We have been praying for hope for our little Jessica and today it seems that our prayers are being answered. We had been exploring the option of fetal surgery to enlarge one of the holes in Jessica’s heart to improve her chances of surgery post-birth and at today’s scan it was confirmed that this is an option and we have been booked for this surgery on 28 June. It will be the first time (as far as we know) that this procedure has been carried out in the UK and it is risky but it will give her a chance.

Devastating news

We had an appointment for another heart scan at Great Ormond Street this afternoon and received further bad news. The complexities of the heart abnormality mean that surgery is extremely unlikely to be successful and the consultant did not advise attempting it. Unless a miracle occurs and the heart situation suddenly improves, our baby will have compassionate care after birth for however long she is with us. We are both devastated by today’s news and will continue to pray for a miracle. In the meantime we will be making the most of every precious moment we still have with her.

Still in shock

I feel so blessed to have such wonderful friends and family. We have received so many kind messages of support and to know so many people care about and are praying for our little girl really does help. We are still very much in shock – I keep wanting to wake up and find that all of this has just been a horrible dream whilst trying to find the strength to accept reality and keep going. Everything has been turned completely upside-down and we don’t really know what to do any more other than to just take everything minute by minute.

Please pray for our baby - part 5

Obviously we are both devastated by the news - my mum has come up to be with us and Michael's parents have been wonderful. We are trying to take each day as it comes but we know we have a very dark and difficult journey ahead of us and are praying very, very hard for the best possible outcome for our little girl. Please can you keep us in your thoughts and prayers during this difficult time. I know that it is hard to find words that can help, but the support of our family and friends means a lot.

Please pray for our baby - part 4

We hadn't planned to find out the gender but after this felt very strongly that we needed to know in order to bond with our baby as much as we can right now. On scan it looks like we are expecting a girl, currently still nicknamed Sprout but we will be giving her a name very soon. She is very wriggly at the moment and we are looking on each day that we can have with her as a huge blessing. We will continue to have repeated heart scans throughout the pregnancy to keep an eye on how things develop.

Please pray for our baby - part 3

All of this assumes that surgery is a viable option but the holes in the heart are giving particular cause for concern. They are likely to shrink or close and if they do then surgery may not be an option and we need to discuss this with the surgical team. If this is the case, then we have been told that our baby may survive a few days or weeks at the very most. We have declined the option of a termination – our baby is in God’s hands and we want to give her every possible chance that we can.

Please pray for our baby - part 2

We have been told that most babies are able to tolerate this type of condition during pregnancy and survive through birth. If they are born at term, then surgery may be an option. This would involve having three separate operations – one shortly after birth, one at 3-6 months and another around 2-4 years. We have been told that there is a 50% chance of a child making it through these to age 5. If they make it to age 5, there is a good chance of living to 15 and possibly into the 20s but after that it is unknown.

Please pray for our baby - part 1

Michael and I went for our anomaly scan yesterday and whilst it was lovely to see our little Sprout once again, we have received heartbreaking news. Our precious little one has some significant heart abnormalities. We were referred for a more detailed heart scan at the John Radcliffe which thankfully we were also able to do yesterday and have had it confirmed that there are several defects – it is all quite complicated, but basically the left side of the heart is underdeveloped due to a missing heart valve, there are two holes in the heart and narrowing of the aorta.