This was a thread I found on the heartline message board. There are now well over 250 entries on the list – some funny and some sad. Some I found very relevant!
1. …..the predictive text on your phone sails through “echocardiogram”, “cardiovascular”, “catheter”, “venous”, “mitral” etc….
2. …. You have cried more since having your heart child than you have in the whole of your life.
3..you realise the important things in life.
4…..your HH child presumes your heart child is going to have his heart fixed everytime you say that he has a dr/paed/cardiologist appt and wants to know how many days you will be gone
5…..The list of phone numbers on your mobile phone contain, Cardiac liason nurse, hospital ward, drs, chemist
6…….Because there are times when you sit by their bed, watching them sleep with tears streaming down your face not knowing what the future holds
7……..When you seem to be the only person NOT complaining about the NHS.
8…….Targeted internet adverts are offering you very cheap cardiac invesitgations and aortic valve replacements
9…….Your 3 year old daughters favourite book of the moment is ‘Having a Cardiac Catheter’
Samuel is a very happy and smiley baby expect when there’s a camera around!!
I am a fan of most crafty things. I mainly do sewing but have started knitting in the last 18 months. I started the bag above in January and finished it last night. Sadly the photo doesn’t do it justice but I’m really pleased with it. I’m now being sad and knitting a coordinating brooch!
So that’s the story to date – congratulations if you’ve read it all! At the moment I’m not writing this with the purpose of it being read. Its more of a cathartic experience for me. I also plan this will be a way of keeping people up to date in the future when/if necessary.
Long term Samuel needs more surgery. Eventually he will need an aortic valve replacement as his valve won’t grow with him. It will either become blocked or will become too leaky with back flow (he currently has a little of both). The doctors have explained that they want him to be as old as possible to do the surgery as it has less risks the older he is. At present that would mean open heart surgery but we have been told that as medicine advances that might not be the case when the time comes for Samuel.
A time frame on surgery is also not possible at the moment. His last clinic letter was really positive and they feel he will get ‘good longevity’ from his valve. As an obsessive planner I really am struggling with the fact we have no idea when his operation will be. The doctors have said it may be in the next year or he might be a teenager – we just don’t know. Part of me wishes we could get it over and done with but another part of me is petrified at the thought of putting him through such a massive operation. The replacement valve also has a lifespan (approx 20 years) so potentially he will need further replacements.
Six weeks on from this Samuel is doing brilliantly. He’s putting on weight well and is very alert and happy. I’ve politely told my health visitor where to go as her input was anything but positive. I feel the dust is settling and I’m not sitting crying alone at night when I feed him. I’ve also managed to stop worrying that I’m going to wake up and find him dead one morning. Very macabre but that’s how my mind has been working in the last few weeks. Perhaps the citalopram is doing its job!
So we arrived at Oxford very late. The place was huge, we didn’t have a clue where to park and then couldn’t find a door open to get into the hospital. Luckily we found a few kind people who helped us out and took us to HDU. Samuel was thankfully fine on the journey over and was stable when we got there.
We met his consultant who again explained the problem with his valve and told us that they would operate the next day to open the valve up using a cardiac catheter. We were given a room for the night to try and get some rest but I found myself just laying in the dark for a few hours. My main thought was that this was so surreal, not happening to me, that it had to be some weird dream and I was praying that I would wake up soon. By 5.30am I was back downstairs with Samuel on HDU.
Thankfully my mum and uncle came to see us at the hospital that day. I think we would have gone insane with the wait if we were on our own (either that or argued!) Samuel finally went to theatre just after lunch. We were able to go into the room with him initally and told we could stay with him until he was under the anaesthetic. I found this thought too upsetting and eventually had to leave the room as I was crying too much.
A couple of hours later he returned to HDU looking very well and alert. The operation had successfully opened the valve without any complication and the difference in Samuel was instant. Beforehand he had always been a very quiet and sleepy baby. We felt he still hadn’t lost that newborn sleepiness or we just had a very good baby on our hands. Since the surgery he is now bright, alert, happy and smiling – very rewarding after everything that happened. He also cries alot more now but we find that reassuring!
That afternoon we both relaxed and felt like a huge weight had been lifted from our shoulders. I felt able to think a few days ahead rather than hours. We also felt able to acknowledge that it was Christmas! We had been given a room in Ronald MacDonald House at the hospital and when we returned to our room a hamper of food had been left for us and the kitchen was full of plenty of Christmas treats to keep us going. Very simple things that meant alot to us at the time.
Samuel continued to make excellent progress and moved to the ward on Christmas Eve. He was discharged home on Christmas Day. It was a relief to be home but sad as our daughter Eloise wasn’t with us – she was with Nanny and Grandad being spoilt so we were probably far from her mind!