We have some news - finally!

It seems like we have been waiting forever but Great Ormond Street have given us some news on Harper's upcoming open heart surgery.

We have been waiting for the cardiologist's to come to a decision on whether Harper should have her heart repaired now, or if it should be left until she's slightly bigger. 

They have decided she will have surgery in 4 months, I have to wait for a letter with an exact date but it will be sometime around May. GOSH will next see her for an outpatient appointment in April, this will be our chance to ask any questions about the surgery.

In a way I'm glad, the bigger she is the easier the surgery will be..it also means I've got quite a while to get my head around it. On the other hand May is the month before her 1st Birthday..we have no idea how long she will be recovering for..just to expect to stay for at least 2 weeks. I'd hate for her to have to spend her Birthday in hospital..but GOSH know what they're doing and that would just have to be something we would deal with...

Now we wait...

Harper had an outpatients appointment at Great Ormond Street yesterday, 4 months after we last saw them.

As she's been doing really well growth and development wise I had got my hopes up that we would be told the same as last time..that she was coping fine and they'd leave her a few months again.

This time we saw the cardiologist that had seen us throughout my pregnancy, this was the first time he'd actually met Harper. While they checked her over and after having an ECHO he told us that he was really pleased with her, he thought the weight she'd gained since birth was really good for a baby with a CHD. 

He then said something I wasn't expecting at all - he felt now would be the time for her surgery. In his opinion she is a good weight and he feels there's no need to leave it any longer, she needs it done at some point so why not now.

He explained that he would have to discuss her at a meeting with the rest of the cardiology team and get their opinions too, they might feel its best to wait until she's slightly bigger.

We are now just waiting on a phone call to find out the outcome of the meeting and the plan that they have decided on.

I've never been so scared, I'll be so glad once this part is all over and we can just look forward to the future 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

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

Teddy's GOSH appointment

I've mentioned in a previous post that Great Ormond Street had offered to check Teddy's heart for us as we have always been worried about his slow weight gain and the fact that he seems to pick up every illness going.

We already knew if they did find anything it wouldn't of been anything like what our unborn baby has as we would of known by now. We though he could have a possible hole in the heart as we know these can go undetected. 

We were lucky enough to be seen by the same doctor that is looking after baby and he was brilliant throughout the scan. Teddy hates getting undressed unless it's for a bath so he was already upset before the scan even started. By the time they had put the gel on him to start scanning he was hysterical. The doctor was lovely and put Peppa Pig on his phone for Ted, which seemed to calm him down for a few minutes. 

Luckily they didn't find anything to be concerned about on the scan so Teddy is heart healthy. I'm so relieved as I don't know how I would of coped if both my children had a heart defect. At least we know what to be prepared for when the baby's here as we know she will have to have these scans quite often, hopefully she won't get as distressed as Teddy did.

XxX