Teddy - 2 year update

Finally getting round to writing up Teddy's 2 year update..my baby is now turning into a little boy!

He had a brilliant 2nd Birthday, we took him to the Sealife Centre in Brighton as he loves fish and it was a brilliant day out. Even Harper was mesmerised by all the fish and the pair of them were as good as gold considering it was quite a long day.

Ta Da!

On Brighton beach

Teddy has now started pre school, this is a huge change for us as we are together all the time, he rarely stays away & if he does it's only been because we didn't have a choice. He's been going 3 mornings a week but is struggling to let me leave and has attached himself to one of the nursery staff and doesn't leave her side at all. I'm hoping the more he goes he'll eventually enjoy playing with the other children.

Over the past few weeks we've noticed that he is more interested in Harper (he usually just ignores her) he's wanting to play with her and I've caught him trying to make her laugh a few times. 

He still has a dummy (or 5) and we have noticed that it's starting to affect his speech. When he hasn't got it in he talks really well so we are working on getting rid of them, it's hard as Harper has one and if we take Teddy's away he takes hers instead..maybe we should try and get them both off them?

How did you manage to loose the dummy? Leave a comment below as we are willing to try anything.

XxX

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

Wordless Wednesday

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