Does Lanis Heart Ache??? Downs Syndrome and heart problems

Lanis Heart – Does it ache????

When Lani was born they listened in to her heart and heard a murmur!!!! I duly freaked out – what does this mean, I was in a total state. I asked our paediatrician “will Lani die?” I don’t remember exactly what she said but she didn’t say no. I remember thinking my heart was breaking, was Lanis too? They within half an hour brought in a machine to our room and rigged her up with little stickers and wires all over her dinky chest. Lee and I watched, waited and dreaded the worst. They found that she did / does have a heart condition but wanted us to go to Southampton hospital as they are the leading hospital for babies hearts in the area. The wait for the appointment was terrifying, the unknown is horrendous. Our hospital told me that if when I was feeding Lani she went blue or floppy or sweaty or any of these as a combination than I had to ring the bell or if it happened any other time, I spent all my time watching her so carefully. So the day came to go down and have our little girl check out, I was feeling so sick that day driving down. The Doctor told us that looking at her report he felt he may be giving us bad news about her heart and he wanted us to be prepared for that, as he was saying this to us my eyes welled up and I felt myself not even being able to concentrate, I fell apart, my heart was breaking. They laid Lani on a bed and asked me to hold her still but I just couldn’t and Lee was dealing with the whole thing so well he was there and dealing with our princess in a millisecond. They scanned her heart, checked it, rescanned her, checked it, the Doctor asked us to give him a few minutes while he went to see his head of the department. Then they both walked back in and he looked at the scan and rescanned her himself, they discussed Lani so so quietly I could not hear what they were saying and pointing at the machine. Then the top Doc said “yes I agree”. They had a diagnosis. The Doctor who was helping us sat down and told us that he was very surprised to have not seen what he expected, Lani has an congenital heart defect which is a heart defect present from birth, Lanis is a  Atrial Septal Defect (ASD)this is where there is an abnormal opening in the dividing wall between the upper filling chamber of her heart. Why was the Doctor smiling and why did he think this was good news, it felt awful to me. Lani has a hole in her heart how is this good news??? Now I know a little more about DS and how some children have very server heart issues and Lanis is mild, its a small hole and they predict that it may heal itself. OMG how lucky are we and lets all give a huge whoop whoop to the human body for its self healing powers, I hope and pray it will heal itself in time. We have another appointment at the hospital in 2013 and will be told at that point what the situation is. In the mean time I am very conches of the possible effects of her heart and I have to admit I worry about this probably more than I should.  So to answer the title Lanis Heart – Does it ache???? I don’t think so I think all the love she is shown has filled up that little bugger of a hole xx 

 

Blog diary

9th October 2012

Morning

Today was the opportunities group again in the next town over from us, we got there late again!!! Lee was able to come today which was great and we got Lani playing with the doll’s house trying to show her makaton for each of the different rooms and what was in them. Lani also played with a tray of cornflakes and embarrassingly chucked them on the floor – oops lol. We spent quite a bit of time in the sensory room again as Lani just loves it in there and then she ate some snacks and we made a move home. I love having Lee be able to come to these groups with me and Lani it shows what a devoted, loving dad he is. Our daughter is a lucky girl to have a dad like Lee. 

Afternoon

Lani has slept most of the afternoon so I have cracked on with my job, when she was awake I put on Mr Tumbles for her, we have done a little bit of speech therapy and her sit-ups. I won’t do physio today as she has had a upset tummy.... Lani has a low immune system!!!! 

Evening 

I have brought a wonderful new book which has children’s poems in it, tonight I plan to read some to her whilst giving her lots of cuddles and kisses.

Q – No question again, don’t forget I am happy to answer anything.......please!!!!