Sunday, July 01, 2007

Been reading emilys blog regarding CF

Now Cystic Fibrosis doesnt affect this family. And I dont know much about it, I have asked Emmie a few questions so kind of know the basics.

Emily was talking about having further children knowing you carry the genes for CF and the 1 in 4 chance of future children having CF. Well, in a way, it has made me think.

We have a daughter of 2 years old called Serena. Peter was put on the transplant list 2 weeks after she was born. He was diagnosed with dilated cardiomyopathy 3 years previous to that, after Nicole was born and I was 20 weeks pregnant with Lauren. Serena was a planned baby. That fact alone takes some people by surprise. I have had people ask me 'why did you want another child knowing your husband was so ill?' It is something that I did think about a lot in the early days of his downhill stages. I was juggling a newborn and a seriously ill husband who was in and out of hospital for 5months. When I had given birth to Serena, I was taken to the ward in a wheelchair. Then the Porter used the wheelchair to take Peter to his car. When he visited me and serena in hospital (we were in for 5 days, thats another story), he would push Lauren in the buggy slowly to the ward, then rest for a while. I would put Serena in her goldfishbowl crib, set that alarms, give the crib to the midwives, take the keys with me, get a porter and wheelchair for Peter, push lauren back in the buggy to the car whilst a porter looked after Peter. The midwives were worried I was doing too much, but to me life was normal.


So why did we decide to have a 3rd child? At the point that we made the decision, Peter was fairly well. Yes he was struggling a bit, stairs were an issue, he was sleeping more, coughing more, but generally well. We were fighting for a more suitable house as we lived in a masionette with 2 flights of stairs. We wanted another child. We looked at the facts we had. Yes he had a heart condition which could deteriate rapidly, but he was stable. There had been no change in his heart function for over 2years. The doctors were happy with his progress. Life was surprsingly normal just at a little slower pace to most people. I had been told many times, that his condition was caused by a virus. After a positive pregnancy result, I was booked into seeing the midwives and consulatnt. Informed them of all the stuff regarding Peter. And was duley sent off to Guys hospital for foetal cardiac scans. I refused all other tests on the baby, just had my antibody tests done as i an Rh-, which means extra care and jabs. Nothing wrong with her heart. We moved into a 3 bedroom bungalow after a fight with the council. This was probably one of the best things we did, as within a matter of weeks, Peters health went downhill and fast. I was over halfway through pregnancy, and he was seriosuly ill. why then? The local hospital were next to useless. They kept diagnosing him with chest infections and pneamonia. They wouldnt admit him to cardiac ward. They did one echo, but without his previous notes on his echos, they didnt have anything to compare it to. We kept telling them many times over a two month period that he has a heart condition and was showing signs of progressing heart failure. His legs and feet were swelling up with water, all the way upto his hips. You could press your fingers into his skin and it would leave indents.
In the end, out of desperation and lack of faith in the local hospital, We took him to the hospital where he was diagnosed in 2002. By that point I was 5 weeks away from being due to give birth. Stressful, yes? Any regrets? No. I moved my own hospital care to the hospital where Peter was, as I figured if he was still in there, at least he would be close by. That hospital decided that I needed to be induced 2 weeks before my due date. Peter was transferred to harefield hospital. My first time there, I was very pregnant and waddling down to the transplant unit. He was being tested for suitability for the transplant list. He came out of hospital 2 days before my induction date after wrangling a deal with the medics. So he was there when I gave birth to Serena. We did have to explain many times, that although he was there, he wasnt to help out by fetching and carrying. Fortunatly labour was quick, and he was able to rest in the chair.

I was hoping to be out the following day, to get back home and look after my family. But Serena had low blood sugars and was admitted to SCBU. I will admit at this point i did have a few doubts sneaking in. Then some of her blood tests for liver function and blood count came back alarming low. They werent sure if it was a blip in the blood testing, but all i wanted to scream at them was 'NO!!!' They had to re-do the blood tests, which quite thankfully, came back all normal.

Two weeks later, Peter was placed officially on the active transplant list. He spent a lot of time between march to june in and out of Harefield hospital, mainly every other week to get fluid drained off. I didnt drive, so was catching lifts with people. A newborn baby with me everytime.

Any regrets then? No. Serena wasnt just a baby. She was, as well as the other girls, a reason for Peter to carry on fighting. He was determined to see her grow up. Still is. She has spent more time visiting hospitals than any other child her age that I know. She took some of her first steps in room 7, ward E.

I do worry about the impact all of this is having on our childrens lives. But to them, its normal. Lauren was just 2 years old and Nicole was 4, when Peter went downhill. They cant recall him being well really, which is sad, but I cant change that. They seem to say everyday 'when daddy gets his new heart....' and it breaks me everytime I hear it.

We made a choice in having Serena. If I knew then, what I know now regarding how Peters health would progress, would we still have had her? Yes, I believe so. You only have to meet my children to see that despite all the ups and downs, they are well adjusted, happy girls. Serena was, still is, one of the most laid back happiest baby i have met. She does keep us going. She is a fun little girl, who makes me laugh daily. Especially now with her Pirate obsession.

There are things that the girls and peter have missed out on, which is regrettable, but again, I cant change that, so try not to dwell on it too much.

We cant live out lives by 'what if's'. If we did, then we wouldnt do a thing.

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