Silent Sunday!!

Pulse Oximetry screening!! #CHD

When we’re pregnant, we don’t want to imagine something could be wrong with our baby’s heart. Don’t heart defects happen to other families? Truth is, they happen to any family.

CHF is campaigning for the introduction of Pulse Oximetry screening for all newborn babies in the UK. 

The test measures the oxygen levels in the blood and evidence shows it is an effective test in detecting three quarters of congenital heart conditions..

The pulse ox is placed by a sticky strip, like a band-aid, with a small red light, or “probe,” on the baby’s hand or foot. The probe is attached to a wire, which is attached to a special monitor that shows the pulse ox reading. The pulse ox test takes just a few minutes to perform....

Maybe if this test was carried out in newborns my girls would not of been 2 and 7 years old when we found out about their heart problems....

Newborn babies already have a number of tests as part of their screening after birth, what we are calling for is for this quick, easy to administer and inexpensive test to be part of this process.....Already a number of hospitals and leading the way and using it, but we want every baby to be covered and all parents to have greater peace of mind. 

Our #CHD Story....Part Two! #CongenitalHeartDefects #AwarenessWeek

Continuing on from yesterday READ HERE this is the second part of our Congenital heart defect story. Just a warning there is a picture at the end of the girls after surgery which may upset or offend but just remember you have to look at it once. My girls live with the scars and the memories. 

We spent most of July and the beginning of August waiting for that phone call to call us to the hospital. We actually had the phone call twice, we were given dates and then the bed was needed by someone sicker than my girls were. It is understandable now but it was frustrating at the time.

16th August 2009

Sunday the 16th of August came and it was the day we went into hospital. I will never forget the day, it was Stu's birthday so not the best day for him. Me breaking down in tears every two minutes and the kids mixing between excitement and fear. 

Shortly after we got to the hospital we met the anesthetist who informed us they'd changed things round and Becky was being operated on first not Ellie. To me it didn't matter. The plan was Becky to have surgery Monday and Ellie Wednesday. 

 So we settled in and the evening consisted of x-rays, blood tests, blood pressure been taken, watching dvd's, cuddles & lots of tears mostly from me. 

After barely any sleep the nurses were in just after 7am getting Becky ready for surgery. She had her pre-med which turned her into a drunk like 7 year old. .She was even funnier then Ellie was on the drugs. 

Taking her to theater was awful!! I was trying to be upbeat and happy for Becky's sake but I was a wreck!! We got shown the bypass machine which would be keeping my girl alive. Thinking about it now it is amazing that a piece of machinery would be keeping my girls alive at the time it was terrifying. The nurses were brilliant and I held it together until I had to leave Becky and as soon as I was out the room I broke down. 

Five hours she was in surgery! It actually flew over. Ellie kept me busy Stu and I must of walked miles around the hospital! We got the phone call to say she's waking up and we could see her in intensive care!!

Nothing can prepare you for seeing your child full of tubes and wires, helpless and choking on a breathing tube. Luckily the nurse called Paddy, from the ward was stood behind me with a chair when my legs gave in on me. Becky was a star by 6pm her breathing tube was out and she looked better then she was. She slept a lot but she was as good as expected!!

At about 6.30am the next morning we got a phone call I thought something had happened to Becky but she was fine!! It was a nurse saying don't feed Ellie she's having surgery today as Becky was well enough to leave intensive care and Ellie can take her place in there. We didn't have much time to think about it and I think it was actually for the best.

By lunchtime Ellie had been taken to surgery and Becky had been moved to the ward. It does not get any easier taking a child to be operated on, if anything taking Ellie was worse as I had both of my girls hospitalized.

I got to spend some time with Becky while Ellie was in surgery and explain she was all fixed now and the worst was over. We watched tv, she slept & I did a bit too....lol

By tea-time Becky was eating again and Ellie came out of surgery and by the time we got up to intensive care to see her she had no breathing tube and was trying to sit up, less than 40 minutes after coming round from open heart surgery. The doctors were all set to sedate her at one point becuase she was too active. She looked so much better then Becky did. Still bad but not as bad. That night was spent spending time between Becky & Ellie. I wanted to be with both of my girls but it wasn't possible so Stu & I kept swapping.

Ellie came to the ward the next day and slowly they both had tubes and wires removed and more heart scans. Becky was the first to get out of bed and collapsed and stopped breathing for a few seconds which did seem like a lot longer. She was put on oxygen but the doctors said it was the stress of everything and she would be fine. She was!
 
We spoke with the doctors and they said the holes in their hearts had been fixed!! They explained it like fixing a puncture on a bike tyre. lol I don't care as long as they were fixed but with good news always comes bad. They had both developed leaking valves which will need surgery but not for at least 20 or so years. Phew! By the time they have it they will be adults. 

Back Home!

Saturday we were home in time for the new series of X-factor, less than a week after going to hospital. A lot earlier then we expected but the girls were doing great and there was no point us taking up 2 beds. 

We go back to the hospital every year for check ups but so far so good. For them it's just an afternoon off school & a bit of excitement.

It's funny how things happen. 

If Ellie hadn't of jammed her fingers in a door my girls would of been dead by the time they were 20 if not before. 

As bad as the experience was it's made us who we are. I have made a lot of good friends through it. There is such a great support network with all the heart mums on Facebook..

I am so proud of my girls. They were so brave and still are!! They are my heroes!!

There you have it. Our story!! It's the first time I've written it down. I've missed a lot out. I could of filled a week with blog posts about everything that happened but this was most of it. All the important bits anyway. 

Since I wrote this in 2013 I have written a lot more blog posts about heart defects which you can also read!