GOSH Outpatients Aug/Sep

I haven't posted in ages, mainly because I've been struggling to deal with everything and couldn't face writing it all down. 

At Harpers first GOSH appointment back in August we didn't get the news we had hoped for, we were told to expect her to need surgery within the next few months and when I asked about her life expectancy I was told she would 'hopefully go to school'. They told us they were going to discuss Harper with the other cardiologists that evening and would give us another appointment in a months time.

When we went to the follow up appointment last week I had prepared myself to be told she needs surgery now and had to hold back tears in the waiting room. We were called in to the ECHO room and saw a different consultant. He explained that there was some confusion over some of her veins, as her condition changes the place of everything in the body. He said they would need to be clear where they all where before they could operate. 

Once he had finished the ECHO he had a huge smile on his face & told us he had good news. All her veins are in the correct place and doing what they should be. That wasn't all - the hole between the bottom chambers has completely closed, there is no rush to do surgery now. 

I have never felt so relieved, although I know there will be a time that she does need open heart surgery, it's not right now. GOSH don't even need to see her for another 3 months as she's doing so well.

It looks like we will get to spend Christmas all together, something I'm looking forward to more than anything. Although it's still months away I've already started my shopping and looking for new decorations as everything was really rushed last year because we had only moved in to our house at the end of November.

Update - 1 Month old

I can't believe Harper is a month old already. It's going far too quickly. She has already outgrown 2 sizes in clothes, and due to the hot weather she's not even worn some of them! 

The health visitor comes home to weigh Harper once a week, as we are unsure whether her immune system works properly they felt it best if she was kept away from baby clinics. They are really pleased with how she's doing, she now weighs 7lb 13oz and has jumped up 2 centiles in height! No wonder her sleepsuits don't fit.

She's still feeding every 3 hours during the day but seems to be more settled and go longer between feeds during the night. We've noticed over the past couple of weeks that she's had episodes of crying in pain that can last ages, we think she may have silent reflux as Teddy suffered with it although Ted would refuse his bottles - Harper doesn't and is taking around 4 ounces per feed.

We have our first appointment through for GOSH - 13th August, I'm dreading it as the next date we will get from them will be for her heart surgery. Even though I've known for the last 6 months that she needs it done I still feel so unprepared, I think I'll be a wreck once that date comes through. 

I'm so grateful for how well she's doing though, sometimes I forget there's anything wrong with her as she seems no different to a heart healthy baby. 

We've planned to go away for a few weeks during the summer holidays, it will be Harpers first trip away :).

XxX

Pregnancy update 37 weeks

Not a lot has happened this week, but I'm finally full term! Although I don't want baby to make an appearance too soon as she's still pretty small, but if she comes a few days before she's due I'll be a happy mummy as I'd rather avoid induction.

I had a doctors appointment on Monday for my headaches but my blood pressure and everything else was fine so I think I might not have been drinking enough. I've made sure I've had loads to drink since and I haven't had anymore headaches.

I also spoke to my midwife who has agreed to see me every Monday now until my induction on the 2nd July to keep an eye on the baby. I'm hoping she will offer me a sweep at either my 39 or 40 week appointment but have to see what she says on Monday.

Our wall stickers for the babies room have arrived today so I have a busy weekend planned finishing off the last few bits, we are also planning on getting the Chicco next to me crib on Sunday as we've been having problems with our moses basket.

Here is my bump picture from this week along with last weeks one, I think she may have dropped?

XxX

Pregnancy update 36 weeks

I've had a really busy week this week, I moved back in with my mum on Sunday and will be staying here until I have baby except for weekends when I'll go home to get some bits done but I might do a separate post on this and the reasons why.

I had what will probably be my last midwife appointment on Monday, everything seemed okay until she measured my belly and told me I was measuring at 32 weeks, 4 weeks smaller than I should be. I had been told before that baby was on the smaller side but not to worry, this time the midwife seemed worried & wanted the consultant to check her growth at my scan on the Wednesday.

I really started to panic before the scan as GOSH have told us the bigger the baby the easier it is for them to operate and the better they recover. I mentioned the midwife appointment as soon as I went in for my scan so he checked straight away and told us she is smaller than average but nothing to worry about as she is weighing around 5lb 6oz.

He carried on with the scan and told us there is still no sign of heart block and can't see any bowel obstruction so we are praying things stay the same.

We did have a shock when I asked him about what will happen with my labour, it had been mentioned briefly at our last scan at GOSH that I would probably have neonatal nurses in the room with me but the consultant I saw at my hospital where I'll have her said I won't but she will be taken straight to special care once she's born. Although I know they are doing it as a precaution and so they can check her properly it's heartbreaking knowing your baby will be taken off you, we have no idea how long she will be there for or when we will get to see her.

As advised by GOSH I have been booked in for induction on my due date, 2nd July at 9am. I'm keeping my fingers crossed that she comes naturally before then but I am glad that I'm not going to be allowed to go overdue.

I got the final bits for my hospital bag today so I'll be doing a post on that over the next few days.

XxX

Pregnancy update 34 weeks

I've been a bit quiet over the last couple of weeks mainly because we've had so much going on and have had a bit of a rough time lately.

Joe's aunt sadly passed away and he'd also come down with a virus that meant he couldn't even make it to our final scan at GOSH so we've both been feeling pretty down.

I was also worrying about this scan as it's been a while since my last one and I know how quickly things can change. Luckily we were given some really good news which we are over the moon about so we are starting to get back to normal.

This appointment was much quicker than the scans before as the doctor spoke to me during the scan rather than take me into a seperate room after. He explained that sometimes with heart problems such as our baby's things can start to deteriorate before they are born but we are lucky and her heart and lungs seem to be working fine.

Because of this I don't need to be induced before my due date anymore and he is pretty confident that when she's born she will be able to come straight home once she's had some tests done. The doctor from GOSH doesn't even think he will need to see her after birth and is still sure she won't need an operation until she is at least 3 months old. 

We have been worrying that we will need to be really careful with baby as we know she will have a weak immune system so have turned down invites to weddings and christenings for the rest of this year but the doctor has reassured us that she will be fine and we can treat her as normal which is a big relief. 

We are back at GOSH on Tuesday for Teddy to have a scan done to make sure he is heart healthy. We don't think there will be anything wrong as I'm sure it would of been picked up before now but we'd rather have him checked over properly.

This week will be my last week at home before I move back in with my mum and we still have so much to do, lucky it's a bank holiday so Joe has an extra day off to help.

Hope you all have a lovely weekend :)

XxX

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