Hi ladies,

Just thought is give you an update on Owens heart. At birth they found a heart murmur and after an ECG and xray found his heart was enlarged. They couldn't get anyone to do an echo so we were given an outpatient appointment for next thurs (5 weeks 3 days old) for follow up.

Last Friday we saw the gp as I noticed how sweaty he gets when feeding which I was told to watch out for. She said his heart murmur was still there and quite loud and his heart was working very hard - 'hyper dynamic'. She said if I noticed any worsening conditions to take him to paediatric a&e.

Well I took him to a&e today after telling my hv his lips were looking a bit dusky after feeding. They were fantastic and checked his bp on all limbs, femoural pulses, oxygen levels, ECG, x ray. His bp and oxygen etc were fine which was great - his lip colour just shows he is working hard but not that he is lacking oxygen. His x ray & ECG showed he has worsened since birth though and they were glad I brought him in. He def has a hole or other serious abnormality but we need the echo to determine what. After speaking to the registrar we found out his appointment next week is not for an echo, it is to determine if he needs an echo - would still need to wait a couple weeks after that! I had specifically asked previously if they would do the echo there and then if they thought he needed it and they said yes! Anyway, registrar wants to see him again on Friday to check if he's deteriorating and i should take him in tomorrow if im concerned at all and he's going to try to get the echo booked as we def need it.

Anyway, it's not nice to know his condition is serious and worsened / worsening but it's good they are being thorough and they were really nice & reassuring.

On the plus side, his weight gain is good - weighed 9lb 10oz today at 30 days from regaining his birth weight of 8lb 3oz at 2 weeks. So that's a really good sign.

xxx

Oh hun. I'm so sorry to read what you and little Owen are going through. Haven't got any advice but just wanted to wish you all the best for your appointment on Friday. Will be thinking of you.

I didn't realise Owen had a heart condition... that must be so stressful and worrying for you. Just wanted to offer you some *hugs* and to say that at least they know what the issue is and are actively monitoring it. Hopefully that means you will get treatment sorted for him quickly so you can move forwards...

I don't know if it would help at all but it may be worth looking at the BLISS website and message boards. They offer help and advice for parents of both premature and sick babies. I'm sure you will find parents on their message boards who have gone through what you are going through now. I found it a great source of information and support when ds1 was in hospital. Thinking of you xxx

Oh you poor thing, glad they're moving quicker! It's great to hear he's putting on weight hope you get more goood news soon x

Aw hun I'm sorry the murmer is still there.
But I have to say it seems odd, if they suspect a serious abnormality I would have thought they would do an echo sooner than later. Whenever Abby was seen at a&e as a baby she was always given an echo before they would let her home but they know best and I guess if they're not rushing to do anything that means they aren't too concerned so thats a good thing.
I went through it all when Abby was a baby and I remember how devastating it was being told my perfect little baby was ill, if theres anything I can do or you want to talk to someone or even want some help understanding anything (7yrs on I'm starting to understand the jargon!) just give me a shout.
Abby used to go grey in the lips and forehead when her heart was strained eg feeding or crying and she even now her lips go dusky when she's been running.
xxx

Thanks Girls

Pickles, can I ask what condition Abby has / had? We were also surprised they didnt sort out the echo but like you say hopefully that means they're not too concerned...

Will let you know how it goes tomorrow x

Abby has Tetrallogy of Fallots, also known as Fallots Tetrallogy or TOF!
She has several issues with her heart one of them being a large hole in the heart.
xx

Oh hon I'm sorry to hear its got worse, but hope like Pickles said about the echo that they don't think its too serious. Really hope the app with the consultant goes well on friday and that he can get you in for the echo asap - at least then you'll know what you're dealing with.

He sounds like he's doing well though and brill that he's putting on weight, shows he's a strong lil thing. I know its easy for me to say but I'm sure he'll be fine - its amazing what they can do. Hugs xxx

Aw hun really hope it goes well on friday and sounds like they are doing all they can to help Owen. What a worry for you all but he sounds like he's a little fighter! keep us updated. Hugs xxxx

oh hun what a worry, I really hope you the echo asap, glad he is feeding well though like you say that is a good thing!!
friends of ours have a son aged 10 now and when he was born he had heart problems too and he is fine now. For years he had regular hosp appts but was discharged a few years ago as all was well!! try to stay positive hun xx

Oh hun hope they get the echo done soon so you at least know where your going from here, must be awful not knowing what is wrong but really good to hear that he is feeding well and gaining weight.
Sending big hugs to you both and hope all goes well tomorrow x x x

Hun been thinking of you, and you must be so worried, My heart goes out to you, but sounds like Owen is doing well and eating and putting on weight which is a lovely sign and hope that the murmer clears up as they can and all rights itself very soon, wishing Mummy and Owen lots of hugs and a speedy recovery to 100% health. xxx