Isla Hope

The Hope Diaries

Sun, 20 Jan 2013 19:21:54 -0500

Cardiac Clinic

Fri, 18 Jan 2013 08:28:29 -0500

Hey everyone,

I thought I’d write a quick blog about our cardiac clinic at Alder Hey last week.

We went with the expectation that we were going to be given a date for Isla’s next operation. We did the usual checks and shockingly enough her saturation levels had shot up to the mid 80’s. We thought nothing of it as during the whole of December they were in the 70’s.

We went in to see Isla’s consultant and he was reviewing her and her MRI results, he nodded and said that everything is going great, and that she won’t need her operation for 3 – 4 months. At the time we were in shock so just accepted the decision and went to book the appointment for 2 months away. Because we had to wait for Isla’s flu injection, it got us thinking that maybe his decision is wrong, so we spoke to the cardiac liaison nurse, who double checked Isla’s saturations on 2 different machines (this is because over the last month, they’ve not been good) and they were still in the high 80’s. So we accepted the decision as we’ve been proven that her saturations were good.

Ever since this appointment she has been proving us wrong and keeping them in the high 80’s.

She’s a little monster.

Thank you for reading, have fun and stay safe in the snow!

(P.S. I’ve been quiet because I’m currently in the process of setting up The Hope Diaries, it’s very similar to this blog, but it’s a diary of Isla’s life, through her parents eyes, but most importantly something she may want to take over when she’s old enough)

Guess who got 2 teeth in 1 day??

Wed, 16 Jan 2013 12:01:48 -0500

Guess who got 2 teeth in 1 day??

All grow’d up in my walker! #cheeky #biggirl...

Tue, 15 Jan 2013 08:27:01 -0500

All grow’d up in my walker! #cheeky #biggirl #thehopediaries

Isla in the ball pit!

Tue, 08 Jan 2013 10:33:02 -0500

Isla in the ball pit!

What a month!

Sun, 06 Jan 2013 16:04:47 -0500

The last month has been hectic. For most people christmas and new year are busy enough. But for children with CHD’s it’s an extremely worrying month.

I don’t want to make this post just about Isla and her struggles, there are people (friends of ours), that have had it harsh over the Christmas period, so much so that although we don’t feel it, we have an extremely lucky month.

Isla has had a small term in hospital with a chest infection that affected her saturation a really bad, and cause quite a rapid decline in her health, this opened her up to a number of other illnesses, bad cold, chicken pox, she has become a breeding ground for bacteria, and it was the result of what we would consider a mild chest infection. I’m just glad she appears to be on the mend now, and getting back to her good ol’ self.

Another thing that I haven’t blogged about recently is the plans for the next operation. On the 17th December she had a cardiac MRI scan, we haven’t had any of the results from them yet, but were due to get them on the 10th January. I can only presume that because we’ve heard nothing back that there is nothing pressing and urgent that needs seeing too. We expect her next operation will be February time, but this is just based on our opinions and not on her consultants information.

Once our appointment is over, I’ll let you all know the results.

Hope you all had a great new year, and thank you for reading.
(P.s. if there are any odd spelling errors, I wrote this on my iPad so the autocorrect tool may have stung me, or I’m just silly and missed it!)

Photo

Tue, 27 Nov 2012 12:25:57 -0500

Photo

Fri, 26 Oct 2012 03:25:31 -0400

A quick update.

Fri, 26 Oct 2012 02:28:18 -0400

Good morning everyone.

We had a cardiac clinic appointment on Wednesday. They scan Isla heart and found no reason for concern. But have decided to move her operation forward. At the minute we don’t have a date, just early January. But they are booking her in for an MRI in 2-3 weeks, this will tell them when she needs the operation.

I am hoping the estimated time for her operation is correct. I don’t really want it interfering with Christmas, that would be really unfair on my other two. I am sure no matter what the outcome we will work it all out!

Anyway, until next time, goodbye!

Big girl feeding her self! (Taken with Instagram)

Wed, 17 Oct 2012 08:29:15 -0400

Big girl feeding her self! (Taken with Instagram)

18 Weeks Later

Wed, 10 Oct 2012 15:35:59 -0400

Hey everyone, I haven’t blogged in a long time (bare with the spellings, I am writing via iPhone). It’s not that I have given up on it. It’s just a case of how upside down life becomes when you have a newborn baby. Let alone one with a congenital heart defect.

Over the past weeks there have been a lot of twists and turns. With Isla’s weigh gain starting off really poor, to her not being able to catch her breath when we are out. But with all this I still want to focus on the good points.

Isla has now conquered her weight gain issues, and doctors are really pleased with how she is doing now. Isla will have another scan soon to see if she can come off her thickened formula without aspirating.

She is smiling (really cute, but also very cheeky), giggling, and managing to hold toys all by herself. We have also started weaning Isla, she weren’t keen on baby rice but everything else she has no problem with, if its food she’ll eat it.

P.S. I just want to thank everybody who showed their support 18 weeks ago, I love you all, and I’m sure Isla does too.

Don’t worry I will be once again updating this regularly!

Bye x

"Isla hope is back! After a good few months I thought I’d update how things are going! I will..."

Wed, 10 Oct 2012 12:34:00 -0400

“Isla hope is back! After a good few months I thought I’d update how things are going! I will post it up later tonight!”

Photo

Sun, 22 Jul 2012 12:41:26 -0400

I'm still here!!!!

Sun, 22 Jul 2012 12:40:18 -0400

Hey guys, just a quick blog to let you all know I’m still here. It’s been a very busy few weeks with Isla. I will be video blogging on my days off (with Isla). Just so you all can say hi. I promise the blog will become a little busier now I have some spare time on my hands!

I just thought this was cute!

Wed, 04 Jul 2012 09:49:18 -0400

I just thought this was cute!

So were home!

Tue, 03 Jul 2012 14:53:51 -0400

Hey guys, just a quick update because I am aware I haven’t blogged in a little bit.

So Isla is now home and has been since the 27th June. I haven’t blogged to let anyone know because things have been a little bit hectic as you could imagine. And we also didn’t want to jinx the fact we were home and celebrate too early. But Isla has been fantastic, taking feeds better, putting on weight and being that good at night I have to wake her for feeds.

Its taken a lot of getting used too what with medication daily, and measuring thickened feeds. Its just a completely different routine to what were used too from previous children.

Since coming home, she has had numerous visits from the District Nurse, and are due one from the Health Visitor tomorrow. They come to measure a set list of things, to asses how well Isla is doing.

Well that’s pretty much the bulk of the update, thank you for reading, see you soon!

Sleeping on daddy.

Sun, 24 Jun 2012 11:39:37 -0400

Sleeping on daddy.

Daddy and Isla away from from the ward.

Wed, 20 Jun 2012 08:08:59 -0400

Daddy and Isla away from from the ward.

"Isla now weighs 5lbs 6oz."

Wed, 20 Jun 2012 04:54:27 -0400

“Isla now weighs 5lbs 6oz.”

So tonight they have stopped measuring her heart rate and...

Tue, 19 Jun 2012 17:09:59 -0400

So tonight they have stopped measuring her heart rate and respiratory rate. So now all their measuring is Isla’s saturations.

Why is this good?
It means we are one step closer to “H”.

What are saturations?
All this measurement is, is to measure the oxygen in the blood being pumped round the body.

How is it measured?
By a little probe that is wrapped around a child’s hand or foot, it beams a tiny red light onto the child’s skin, which measures the oxygen levels.