Our Christmas

I thought I'd share some pictures of Harper and Teddy that were taken over Christmas...

Opening her first letter from Santa...

Teddy as a Shepherd in his preschool Nativity...

When they met Santa...

  

Christmas Day...

Their main presents..

Disney Cars table from Costco...

Little Tikes Activity Garden...

I hope you all had a brilliant Christmas and we wish you all a Happy New Year!!

XxX

6 Month update

Harper turned 6 Months old on the 21st of December..it's a big deal for us as she's managed to go this long without any surgery.

She was supposed to have an appointment with GOSH on the 23rd but because of her trip to hospital she wasn't allowed and it has been moved to the 19th of January. I'm glad in a way as it meant we didn't get any bad news before Christmas..but also means she's going almost an extra month without being seen.

We have started baby led weaning..she was weaned on purées because she was so young but now that she's 6 months I felt that I would like to give it a go. She seems to have taken to it pretty well..

She is still doing well on the high calorie milk and was last weighed at the hospital and was 13lb 7oz. She has just gone in to 6-9 month clothes. 

She can sit unaided for a little while and has started to try and get up on her knees during tummy time so I don't think it will be too long before she's on all fours getting ready to crawl.

She's loving toys at the minute especially her Bright Starts Minnie Mouse walker that she got for Christmas...she loves to be on her feet!

Hospital for Harper

The week before Christmas was the hardest week of my life so far..

Harper had caught a cold from Teddy but it didn't seem to bother her at all. A few days later she got a cough that seemed to get worse pretty quickly. On Monday 15th December I took her to my GP..they said it was just a cold and that she would get over it by herself. 

That afternoon I decided to take the kids to see their Nan & Grandad in Surrey. When we got there Harper didn't seem herself at all..she suddenly got a temperature and went floppy so we called for an ambulance.

As soon as we got to the hospital and described what had happened they told us she had bronchiolitis and would need to be put on oxygen as her levels were really low. 

We waited 8 hours for a bed for her..she had a feeding tube put in and a nasal cannula as well as a mask for oxygen.

Everyday was up and down..one minute she seemed to get loads better and they would turn the oxygen right down..then she'd need it turned right back up. She started to refuse to be bottle fed which was worrying, she didn't start again until day 5.

Teddy found it really hard..he wasn't sleeping, I was told he was waking in the night crying for me. In the end he spent most days up the hospital with us which seemed to help but it was heartbreaking watching him leave in tears. I felt like I was choosing one of my babies over the other. I don't know how it's going to work when Harper goes for her heart surgery..we already know other children aren't allowed up there.

I found it a constant battle with the nurses as none of them understood Harpers condition and would do things that GOSH had already told me they shouldn't do. One night I sat awake watching her SATs monitor because the nurse kept switching her oxygen up when she's normally only 95 anyway..I felt I was constantly reminding them to do things and begging them to call GOSH to check things with them first.

We spent 6 days in Epsom hospital..finally getting discharged on the Saturday evening. Neither Harper or Teddy were 100% even on Christmas Day but I was glad we were all home and could spend the day together.

XxX

Immunology Appointment

Harper had an appointment with immunology at the Royal London Hospital yesterday to check if her spleen was working.

Babies with Heterotaxy are often born with no spleen or one that has split into two or more, both options mean the baby doesn't have a working immune system and would need to be on medication for life.

The consultant we saw told us that a scan had shown Harper had one spleen but it was an abnormal shape. He told us this was because it had tried to split at some point but hadn't. Blood tests showed that she has a good working immune system so is classed as having one working spleen.

This is such a relief and one less thing to have to worry about. We are off to Great Ormond Street today for a heart scan as they have brought her appointment for December forward to today as she has struggled with weight gain.

Keeping our fingers crossed it's more good news today xxx

The Mummy Tag

1. Are you a Stay at Home Mum, or a Working Mum?

A stay at home mum.

2. Would you have it any other way?

Defiantly not, I love spending all my time with my babies, especially with Harper's condition I think it's important that I'm with them all the time. 

3. Do you co-sleep?

We do with Teddy, but it wasn't intentional. He slept in his cot until 8 months old, then he was poorly one night and wouldn't settle at all, so in the hope of getting some sleep I put him in my bed. He then refused to go back in his cot and even now at almost 2 he wakes in the night most of the time to get in our bed. I won't co sleep with Harper.

4. What is your one must-have item for your baby?

Harper's favourite thing is a blanket, she won't settle without one and likes to have it next to her face, which gives Mummy a heart attack!

5. How many kids do you plan on having?

I'm happy with 2, I don't plan on having anymore.

6. Date nights? How often do you have them? 

Never if I'm honest, I don't really feel comfortable leaving the kids.

7. Your child's favourite show?

It changes all the time but Teddy loves Mickey Mouse Clubhouse at the minute. 

8. Name one thing you brought before you had the baby and never ended up using?

A Dr Browns microwave sterliser, the Tommee Tippee one is much easier to use.

9. Your child's favourite food?

Toast haha. 

10. How many cars does your family have?

2

11. Weight gain, before pregnancy, during, after and now?

Before Teddy I was around 9st, I went up to 11st and only managed to get down to 10st 7 a year after and then fell pregnant with Harper. I was over 11st during my pregnancy with Harper but didn't really weigh myself that much and am now down to 10st 3lb 4 months after. I'd like to lose a stone before their Christening next month.

12. Dream holiday with your kids?

Disneyland Florida - one day :)

13. Dream holiday without your kids?

If I could leave them lol it would probably be Mexico or Paris.

14. How has your life changed since having kids?

I don't go out anymore, I haven't had a drink in almost 2 years but my days are full of fun and non stop laughter. 

15. Finish the sentence "It makes heart melt when..."

Teddy is loving towards Harper

16. Where do you shop for your kids?

Mainly Next but also Spanish Boutiques.

17. Favourite make-up and skincare products?

Couldn't live without my MAC Studio Sculpt foundation and Liz Earle Cleanse & Polish. 

18. Huggies or Pampers?

Pampers! I found Huggies leaked when I tried them with Teddy, I've never had a problem with Pampers.

19. Have you always wanted kids?

More than anything.

20. Best part of being a mum?

The lovely cuddles and kisses I get all the time.

I tag anyone who reads this :)

4 Month Update

I really can't believe 4 months have passed since I met my beautiful baby girl, I also can't believe how much she has changed in that time.

She is becoming her own little character now and is such a smiley happy baby. She has just learnt to blow raspberries which she finds really funny and is cooing away non stop lately.

She seems to be hitting milestones pretty well despite us being told that she'd probably be slower than a heart healthy baby.

So far she can:

- Smile

- Laugh

- Hold her head steady

- Roll from front to back

- Reach for objects and grab them

- Bring objects to her mouth

- Coo

- Stand with support

She had her first go in a door bouncer a few days ago, I was really nervous for some reason and thought she'd hate it but she loved it! Teddy found it amusing too even telling her to 'dance Harper'.

By the time Teddy was 4 months old we had started to wean him, down to health visitors advice because he had silent reflux, but I'm not planning on doing the same with Harper. I don't feel that she is ready at all and I think I'd like to try BLW this time as Teddy was weaned on purées. The health visitor has mentioned weaning earlier than 6 months on a high fat diet to help with weight gain so I'm not sure how this will fit in with BLW until I speak to her more about it.

Harper now weighs 11lb 13oz and is in 3-6 month clothes. She's very long though and think she will have to wear 6-9 month sleepsuits in the next few weeks, they grow too fast!

XxX

Too tiny

One of the main things Great Ormond Street have told us to keep an eye on is Harper's weight. It's important for her open heart surgery that she is as big as she can possibly be, making it easier for the surgeons and should help with recovery.

Over the last few weeks Harper has gradually dropped down a centile and was heading towards passing another. I was extremely concerned (although my health visitor didn't seem to be) and called GOSH to get their advice.

They have advised me to try a high calorie milk in the hope that this will boost her weight gain, they have started her on SMA high energy which she seems to have taken to pretty well. After only being on it for a few days it seems that it is working as she is now climbing back up the growth chart.

This has made our consultant at GOSH reconsider Harper's next appointment, she wasn't due to be seen until December, but they are now sending an appointment out to see her in the next couple of weeks.

Although I'm so thankful that they want to check her over sooner I'm now terrified that this could mean surgery sooner than they had planned. I had pushed it to the back of my mind thinking that it wouldn't be something we needed to worry about this year, the day is going to come at some point, I just keep hoping that it's not just yet xxx

So proud

Over the last few months Harpers Daddy, Auntie & Uncle have been taking part in different events to raise money for Great Ormond Street.

Although Harper hasn't had any surgery there yet the support they have given us throughout pregnancy and over the last 4 months has been unbelievable. Any concerns I have about Harper they are only a phone call or email away and the cardiologists and nurses that we have seen so far have been nothing but kind and understanding.

Harpers Uncle took part in the 3 peak challenge back in September, climbing the 3 highest mountains in the UK in just 1 weekend, her Auntie took part in the color run in Brighton, something that's completely out of her comfort zone & her Daddy is taking part in the Royal Parks Half Marathon tomorrow. The 3 of them set a target for £2000 which they have manage to reach and pass raising over £2400. 

I am so proud of all of them for what they have done and would like to thank everyone who has donated so far, it means so much to us and I know what it will mean to GOSH.

If you would like to donate you can do via their Just Giving Page https://www.justgiving.com/teams/harpers-heart

3 Month update

I can't believe how fast the last 3 months have gone. Harper is no longer my little newborn baby. She's now smiling away and can even roll from her tummy to back. She's starting to hold her head really well too - all milestones that I am so proud of as we were told throughout pregnancy that she would probably be slower than other babies.

Harpers doing okay weight wise, but it has been very up and down. We will have days where she'll finish most of her feeds, but then others where she can only manage a few ounces. She weighs 10lb 7oz and is following the 25th centile although she has started to drop down below it. We are going to see how she does in the next couple of weeks and if she is still struggling the GP will talk to us about putting her on a high calorie formula. 

She's growing way too fast, I put a 3-6 month sleepsuit on her a few days ago and I'll probably be lucky if she gets another wear out of it! I can't believe I'm having to by 6-9 month clothes already.

She is so much like Teddy, not only her looks but everything she does..you can defiantly tell they are siblings. Ted loves her so much and Harper's even started to try and talk back to him.

Here is the first picture of them both together, pulling the same face!

I thought I'd share some pictures of her from the past month, you can also follow me on Instagram where I post more often, search for MissCharLouise xxx

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.

Feeling positive...

I really should be in bed, we have to be up at 5 tomorrow as Harper has her first appointment at Great Ormond Street, she will be having an ECHO and I'm assuming we will find out what operations she will need.

She's been doing so well that I'm feeling positive we will get some good news, although I don't want to get my hopes up too much. I've been speaking to another heart mum who's little girl is 6 and also has Left Atrial Isomerism. She hasn't needed any heart surgery as of yet so I've started to think that maybe Harper won't need hers at 3 months old as was planned during pregnancy.

The consultant she saw at my hospital for a routine check up also said he'd be very surprised if they operated that soon as she's coping very well, he thought all they'd do for now is something called a banding to slow down the flow of blood to the lungs.

I know Harper has to have open heart surgery at some point so I have to be prepared that it will still go ahead next month, in one way I suppose it's just best to get it over with..but I don't think I'm ready yet. 

XxX

Summer Holiday

Me & the babies spent last week at Joe's mums chalet in Leysdown-on-Sea Kent, it was lovely to get away for a while and enjoy the gorgeous weather. Most of Joe's family have chalets there so they all got to meet Harper for the first time. 

Teddy had such a good time as there are plenty of children for him to play with, he seems to have grown up a lot during the week and has even stopped having bottles completely and only has his dummy for naps. I've noticed how much he's talking now and has started to put 2 and 3 words together. 

We did end up at the local hospital though as Harper came out in a rash, at first we put it down to the heat but it ended up looking more like blisters so got it checked straight away. They have put it down to an allergy (I changed her formula to Aptamil the day before) and since changing back to Cow & Gate the rash has completely gone.

We also got to see Harpers first smiles, we were told that she would be behind development wise but here she is with her brother, smiling away at 5 weeks old :).

There was so much to do there that I didn't get much of a rest, but I'm glad as Teddy really enjoyed it. He got to play on the beach, enjoy his first 'mr whippy' ice cream, and soak the field with Nanny's hose. 

Harpers first trip to the beach

There's only a shower in the chalet so Ted had to have his baths in the sink, and Harper in a blow up bath - which is a lifesaver and only £5 from Mothercare! 

I'd really recommend Leysdown as a place to visit, the beach is lovely, there's plenty of amusements and cafés in the town and family clubs with childrens entertainment. I'm hoping that we can spend some more time down there towards the end of the summer.

My happy babies

XxX

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

One week old

Harpers first week flew by! We didn't get home from the hospital until she was 4 days old and spent the next few days just trying to get Teddy used to her.

He seemed to really hate her & me at first. He'd been staying with my mum while we were in hospital and had never been left for longer than a night before. He wouldn't come near me & I felt terrible everytime I'd have to pick Harper up because he'd get even more upset. I was lucky that Joe had some time off and was able to give Ted lots of attention. 

The midwife came round when Harper was 5 days old to weigh her, she was back up to of 6lb 10oz after dropping to 6lb 7ozs at 3 days old. I was mixed feeding her which was going really well with her taking around 2ozs every 3 hours.

She got to meet her grandparents and aunts and uncles properly as they hadn't been able to see her when we were I hospital due to all the tests she needed to have done. 

I can't believe how quickly the first week went, and how much she's changing already.

Birth story - part 2

So Harpers now a month old and I'm only just getting round to writing the second part of my birth story. Having two babies under 2 is a lot harder than I thought, especially with one being a cardiac baby. Things have started to settle down a bit now so I should be able to update more often.

The first part of my birth story finished when they took Harper to special care straight after she was born. I'd had an epidural so couldn't follow her down as I'd hoped I would, but Joe was allowed to go with her. They told me I could go down in an hour once the epidural had worn off. As soon as the hour was up I was determined to go and see my baby, Joe came back to get me and took me down in a wheelchair..once we got into special care we wasn't allowed to take the wheelchair in so Joe had to help me walk over to her cot as I still couldn't feel my legs properly.

She looked tiny in the big incubator and had wires coming out from everywhere, the alarm kept going off as her heart rate kept dropping below 100, to around 90bpm but we were told this was fine as she'd had a low heart rate throughout my pregnancy. They explained they would do an ECG, a scan on her abdomen and an ECHO over the next few days to check she was all okay before they would let us home.

We had to leave her while they done the ECG and it was heartbreaking going back to the ward without my baby, I felt lost so as soon as I was able to go back to her I did. They told us the ECG looked fine and that they would start to get her ready to bring her to the ward. I sat with her until 3am while they removed different wires and tried to bottle feed her, which she struggled with at first but soon managed to take an ounce. 

At 4am we were back on the ward and she was just like a healthy baby, she could feed normally from a bottle and was filling her nappies too! This was a relief as we'd been told she was at risk of bowel obstruction so this was a good sign that things were working as they should. She still needed an abdominal scan to make sure which she had the following morning.

The scan showed all her organs are on the wrong side of her body, but seem to be working as normal. She has one spleen which is a normal size, but not the right shape..so she needs to have her immune system tested once she's around 2 months old to see if her spleen functions as normal.

They then got us ready to go down and have her ECHO done with the specialist. We were there over an hour with him checking every part of her heart in detail. He explained everything to us as he went along. Everything is pretty much the same as it was before she was born, the top two chambers of her heart have no separation so works as just a left atrium. She also has a small hole between the ventricals but this has partially closed and doesn't look like it will need surgical repair although we will have to wait for GOSH to confirm this. 

Overall the consultant was really pleased with how well she was doing and said we could be discharged right away. I'd been in hospital for almost a week - I'd never left Ted for more than a night so was over the moon that I'd be going home with both my babies.

The consultant said he would make all the necessary referrals, for an immune system specialist and GOSH to see her over the next few months. 

I can't believe how lucky we have been, Harper has a very rare & serious heart condition, yet is coping with it so well that to look at her you'd never know there was anything wrong. 

Teddy meeting Harper for the first time 

XxX

Birth story

I've finally got round to writing up my birth story, 3 weeks late! It's going to be a long post so I'm going to split it into two. This post will be up until Harper was born & the second will be on what happened after she went to special care. 

On Tuesday 17th June me & Joe took Teddy to Legoland for the day, which involved a lot of walking! On the journey home I began to get contractions every 10 minutes lasting the whole 2 hour journey home, but once I had got home they had stopped. They then kept coming on and off during the night and stopped completely again. I then had reduced movement on the Wednesday so I went to MFAU just to be checked over. When they put me on the monitor they wasn't happy with her heart rate and asked me to stay in overnight to monitor it. On Thursday morning I saw a consultant first thing who examined me and gave me a sweep and said they would be inducing me as they were worried & as I was 38 weeks didn't see the point in waiting any longer. She also said she didn't think it would take long to get me into labour, I'd just have to wait to be taken down to the high risk ward because of the baby's heart condition  the neonatal team would need to be present. She explained she didn't think the baby would be able to breathe on her own and would need help at birth. They then handed over to a different set of midwifes and the treatment I got was disgusting! 

Our Baby's heart should of been monitored throughout the day - I wasn't monitored once as I was told they didn't have the time to keep checking. I was then told they didn't have a bed on high risk, then they did but didn't have a midwife spare & I'd need one to one care so I wouldn't be taken down till the following day.  

Exactly the same thing happened on the Friday, I was told that they had closed the ward so was expecting to be taken down but was then informed that women in labour were still coming in and there was nothing the hospital could do if they just turned up. By this time I'd had enough and was missing Teddy so decided to discharge myself - they magically found a bed. I was taken down to high risk at 9pm on the Friday and had prostin at 11pm. I started contracting immediately and they were really strong coming every 3 minutes. I was checked again at 6am Saturday morning and was only 2cms so they broke my waters.

The contractions started coming on even stronger and by lunchtime I couldn't cope anymore so asked for an epidural. I really didn't want one as I'd hadn't had any pain relief with Teddy even though I had a 33 hour labour but I was so tired I knew I couldn't deal with the pain anymore. I was terrified but I couldn't wait for the pain to stop. It didn't! The epidural hadn't worked so they had to re do it, but thankfully it worked the second time. After about an hour they checked me again and I was 9cms but baby's head was really high up. They said they'd leave me a couple of hours before I'd start to push. 2 hours later and the head still wasn't down but I was allowed to start pushing, the midwife asked for the neonatal team to be called to say the baby would be on her way. 

It then all happened so quick, I gave 1 push and her head was out, everyone was running round panicking as the neonatal team wasn't there, second push and she was here - still no neonatal team. She was just laying on the bed then she screamed! The neonatal team rushed in and she carried on screaming so I was allowed to hold her. They weighed her and she was 6lb 13oz, you wouldn't of thought it looking at her she was tiny.

The neonatal team then took her off to special care for different checks but Joe was allowed to go with her, with me allowed to go an hour later after the epdiural had worn off.

Joe's sister managed to get a few pictures before they took her away...

XxX

Our Heart Princess

Just a quick update that our heart baby is here! The last week has been so hectic that I haven't been able to update everyone.

I will do a full birth story this week, which is going to be a long one as I spent 4 days in hospital before I even had baby.

Here's our princess, born on Saturday 21st June, at 38+3 weeks weighing 6lb 13oz. 

Her Daddy has named her, Harper Jade...our heart princess 

XxX

Wordless Wednesday

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

Wordless Wednesday

Moving in with mum

It's been a week now since me & Teddy moved back in with my mum and so far we've had a lovely time. 

We decided to move in here until I have the baby because the hospital I'm having her in is in London, 15 minutes away from my mums. I live in Kent & don't have a car at the moment so if I'd of stayed there and gone into labour I doubt I would of made it to London. I'm also really suffering with SPD so it's nice to have my mum, brother and nan around to help with Teddy. 

I'm still going to go home weekends as Joe will be there with the car and be able to get me back to London if I need him to. It still gives me a bit of time to organise the house before the baby's here.

Teddy's loving all the attention here and my Mum & Nan even took him to see In The Night Garden Live last Thursday which he loved. 

Excited to see In The Night Garden Live

We don't have much planned this week but there's a huge park here which I think we'll take him to as the weathers supposed to be nice this week. 

Loves the park :)

I'm also off to see the antenatal doctor this afternoon as I've been suffering with headaches all weekend so going to make sure everything's okay. I will post an update of how I got on in my 37 week pregnancy update.

XxX