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