Our baby is amazing

So after getting myself in a bit of a state and having no sleep Tuesday night worrying about our Great Ormond Street appointment we ended up with some unexpected good news - well as good as it gets when your baby has a severe heart defect.

We got to GOSH really early and luckily was taken straight in for my scan. The sonogropher & doctor don't talk to you at all during it, they just talk to each other and more often than not you can't understand what they are talking about. All they kept saying was that our baby had an SVC, I laid there thinking great something else wrong with her heart, she didn't need that on top of everything else.

We were then called into another room with our nurse Pippa while we waited for the doctor. Pippa started going through a pack of information she'd put together about GOSH and NICU and other wards that we will be on after our babies operation. Then the doctor walked in - with a smile on his face. He said he had some good news, although our baby still has a serious heart condition it seems that she's coping with it pretty well. He explained that the SVC is a vein that's supposed to disappear during the pregnancy, but our little girl has kept hers because she's missing another important vein. This SVC has now taken over the role of the missing vein. He also told us that at the last scan she has a closed valve, which is now half open. So in a sense she has tried to correct her own heart problem - I can't stop thinking how amazing this is! Because of all this and the fact that her heart rate is still going strong despite being at risk of heart block it's looking like she doesn't need surgery until she's 3 or 4 months old.

We are over the moon with this, it's really looking like we get to bring her home from hospital for a while once I've had her. She is still at risk of bowel obstruction but we won't know if this is the case until she's born. If it is she can have a straightforward operation to correct it at the hospital I'm having her in. The doctor from GOSH is going to come over to see her when she's born and scan her to check she's able to go home, but he doesn't see why she can't.

He then went into explaining what they need to do to fix her heart, they are hoping to be able to fix it in just 1 operation but it depends how well she copes during the surgery, but the most she will need is 2. The success rate of this operation is 95-98% and she's looking at a recovery time of 10-14 days.

Its brilliant news for us as I had imagined her having to be in there months and being taken away as soon as she's born. I feel like I can now start to enjoy the rest of this pregnancy a bit more now we know everything is looking as good as it can be.

I was also told that he has written a letter to my consultant at London Hospital to request that I'm not allowed to go overdue, he recommends I'm induced on my due date. He did explain that the consultant still has the final decision but he doesn't see why they won't agree. I'll find out at my next scan on 9th April whether this will be the case.

Pippa then wanted to show us around NICU and the other wards where she will stay, I was dreading this as I thought it would break my heart seeing all the babies with all the wires and machines everywhere but I was wrong. Although it isn't nice seeing any baby like that we could see how well looked after they all were by the nurses - they all looked really peaceful. We were told that once she comes out of NICU we are allowed to stay in the room with her 24/7, there is a bed and a shower for us in the room. We were really pleased with everything and I defiantly think our little girl will be in the best place.

I'm going to do some online shopping now, our little girls going to need things now she's allowed home :D

XxX

Wordless Wednesday

Preparing for my heart to break

So tomorrow morning we have our second appointment at Great Ormond Street and as much as I'm looking forward to having the rest of my questions answered I'm also dreading it.

Our nurse Pippa called me this morning to see how I was and explained what will happen tomorrow - we will be having a tour of intensive care. As much as I know it's going to help in the long run, knowing what to expect when it's our little girls turn, I know it's going to break my heart seeing other families and their babies in there. 

I'm really hoping they can tell me their plans for her birth tomorrow, it's horrible not knowing whether she's going to need to be born early or not. We should also find out what operations she's going to need and when - at the moment all we know is that it will be before she's 5 months old.

After our appointment at GOSH we then have to rush to the Royal London Hospital for them to check my heart. They found that I have a heart murmur at the heart and lung check so I've been referred to a high risk clinic. I've not been told much so not sure what to expect tomorrow. 

I'm hoping to get an early night tonight as I'll be up first thing tomorrow to make sure Teddy has everything ready for the day - my mum will be looking after him and I'll have to be on the train for 9am.

I have a feeling I won't get much sleep though, I have way to much on my mind!

XxX

I used to love baby shopping..

One of the reasons I wanted an early gender scan was because I couldn't wait to go out and start spoiling our baby, just like we did with Teddy (and still do).

But after finding out about her heart condition it's become really hard for me to buy anything for her. The main reason is at the moment we're not sure how long she will have to spend in hospital and how old she will be when she has to have her operation. I've seen so many pretty dresses and although I have caved and ended up buying a couple - most of the time I end up putting them back. It's silly because I know I can just spoil her once she's here and we know what's going on but at the same time I see posts from other mums that have been out buying for their little ones & I just wish I could do the same. 

Another reason is the sizing - we have been told she's measuring small but that could mean anything. Small as in really tiny or small as in just below average? I don't know whether to be getting tiny baby or newborn sizes. For now I have a couple of each and the rest will have to wait until baby is here. 

We still have some things we really need to get though - moses basket, car seat cover, changing mat & nappies to name a few but I think I'm going to wait until I'm around 33 weeks for all that.

Here's a couple of pretty things I have brought -

XxX

Update 20-25 weeks

In the last few weeks I think I have felt every emotion going. I still have so many questions & although the nurses at Great Ormond Street are brilliant and have told me to call them whenever I need to I'd rather have some answered face to face.

I'd hoped I could talk to the consultant at my normal hospital at the 20 week scan. Unfortunately he couldn't answer anything - I then realised just how rare her condition was. He couldn't answer because he honestly didn't know. Everything else seems to look fine on the scan, she is measuring slightly small but I'm told its nothing to worry about. 

We have managed to find a bit of information online, however it's an American website and the condition is called something different there -Heterotaxy Syndrome. According to the information on there it seems we are pretty lucky that she has Left Atrial Isomerism and not right, as babies with her condition seem to do better and have less problems in the long run.

At my next midwife appointment I had quite a scare. As she listened to the heartbeat she told me it was slow and that we would need to keep an eye on it. The doctor at GOSH had already told us our little girl was at risk of heart block and that if this started to happen she may need to be born early.

But at that stage I was only just 24 weeks, far to early to have her anytime soon. I called the nurse straight away and was relieved to find out that although her heart rate was slower than a healthy baby's, it wasn't slow to them. They start to worry if the heart rate is below 60, hers is double that! So for now she seems to be okay.

There's only 3 days until our next appointment at GOSH & it can't come soon enough. 

XxX

The story so far

After spending the evening reading another heart mums blog and being amazed by the journey they have been on I've decided to start my own. Since finding out at 17 weeks pregnant that our baby has a rare and complex heart condition these blogs have helped me in more ways than one - I hope I can do the same for other heart mums. 

So I guess I'll start at the beginning..

This is my second pregnancy, I have a gorgeous and healthy little boy called Teddy who is 16 months old. We found out that I'd fallen pregnant again the day before his 1st Birthday party and although it was a shock we were over the moon as we'd always wanted our children close in age.

We were so excited (and impatient) that we decided to book a private scan to find out the gender, this would happen at 17 weeks.

However the scan revealed more than just the gender of our baby. As the midwife checked the heart she noticed something wasn't quite right - it looked like it hadn't formed properly. I was in complete shock and burst into tears, I kept asking what she meant and wanted to know exactly what was wrong with my baby - but the midwife couldn't tell us. She explained that she wasn't trained in that area but just knew what she was looking at wasn't right. She asked if we wanted the scan to continue - which we did and told us that our baby was a little girl. She then explained that she would call my hospital while we waited and make me an appointment to be seen the next day.

When we got back to the car I had messages from everyone wanting to know what we were having - we now had to explain over and over that we had a little girl but she had something wrong with her heart. 

I didn't sleep at all that night and couldn't wait to get to the hospital the next morning - I had so many questions and was desperate for answers. 

They didn't tell me anything, they wouldn't even scan me. I was basically told that if I hadn't of paid for a scan I wouldn't of known anyway because these things aren't picked up until 20 weeks. I couldn't go another 3 weeks worrying and not knowing so after sitting up the hospital all day they said the best thing they could do would be to refer me to Great Ormond Street, I'd be seen a week later.

It's a day I will never forget, I had an Echocardiogram done and me and my partner Joe were taken into another room. The doctor showed us a picture of a normal heart, then turned the page to show us a picture of our daughters heart. I broke down again - he didn't need to explain anything to me I could see by the picture that my little girl had a serious heart condition. The top 2 chambers of her heart are joined together. 

It's called Left Atrial Isomerism the doctor explained, her heart works just as a left side. He then went on to tell us that this also causes other organs to form on the wrong side of the body, her stomach is on the right which could cause an obstruction of her bowels. She will also have multiple spleens instead of 1 which will cause a low immunity. I thought that was it, how could she possibly make it with all these problems. 

To our relief the doctor then explained that this can all be fixed, she would need operations but once that's all over she should lead a normal healthy life - and that's what we have to hold on to right now.

He booked us in to see him again on the 26th March when I'll be 26 weeks pregnant - it can't come soon enough.

XxX