Our 32 week old unborn baby has serious heart problems.
- Thread starter Gordon Gekko
- Start date
Aww!!!! How so very cute! Congratulations, she looks so healthy 
Not quiet sure yet, she has a hole in the middle wall and some valves are too small. Her first op will be a "shunt" on the outside of the body to fix the flow of the heart to the lungs.
Jay
Hi All,
Quick update!
She is 8 days old, taking 9mil of mums milk every 2 hours, hasn't put any weight on yet.
Held her for the fisrt time today and gave her a sponge bath, it was fantastic
Cheers
Jay
Quick update!
She is 8 days old, taking 9mil of mums milk every 2 hours, hasn't put any weight on yet.
Held her for the fisrt time today and gave her a sponge bath, it was fantastic
Cheers
Jay
Only just saw now she's been born.
Congratulations!
I wish you all the very best.
Congratulations!
I wish you all the very best.
Hi All,
We have just been dropped a bombshell.
Our beautiful girl has Di George Syndrome / VCFS / Deletion 22q11 They are 3 of the names given to the condition.
My wife are struggling with this new news not because we feel sorry for ourselves or "why us", we just love our little girl and want the best for her.
I keep on saying i have come to terms with "it" but i really haven't because i have know idea what to expect.
But first things first, we need to get our prem little princess over her heart and breathing problems. She is now 1.6kg, we are waiting for her to get to about 2.5 - 3.0kg before she can have her first heart op to put a shunt in.
We keep you updated, as i have said before, SS is just one way i am "releasing" my thoughts
Cheers
Jay
We have just been dropped a bombshell.
Our beautiful girl has Di George Syndrome / VCFS / Deletion 22q11 They are 3 of the names given to the condition.
My wife are struggling with this new news not because we feel sorry for ourselves or "why us", we just love our little girl and want the best for her.
I keep on saying i have come to terms with "it" but i really haven't because i have know idea what to expect.
But first things first, we need to get our prem little princess over her heart and breathing problems. She is now 1.6kg, we are waiting for her to get to about 2.5 - 3.0kg before she can have her first heart op to put a shunt in.
We keep you updated, as i have said before, SS is just one way i am "releasing" my thoughts
Cheers
Jay
although i can understand this is tough, but it's great to have early diagnosis.
so, take one day at a time ... your little princess may have no problems, a few problems, or need extra help - but - knowing early you can give/get her any help she needs.
i think it's fantastic that you know what to keep an eye out for. she has choosen fabulous parents.
so, take one day at a time ... your little princess may have no problems, a few problems, or need extra help - but - knowing early you can give/get her any help she needs.
i think it's fantastic that you know what to keep an eye out for. she has choosen fabulous parents.
I agree with Lizzie, at least you found out sooner rather than later.
Keep us posted, i'm sure your beautiful princess with be just fine
Keep us posted, i'm sure your beautiful princess with be just fine
'at least' anything is chilly-cold comfort.
the list of symptoms is quite a long one, but remeber, just because she has VCFS does NOT mean she has all of them - she more than likely only has one - being the heart defect.
remember, give yourselves some credit. you created this little bundle of joy who's clearly healthy sans the heart issue (which lets face it, next to the brain, is the next most complicated organ). although any advice is going to be cold comfort until she's home with you.
the list of symptoms is quite a long one, but remeber, just because she has VCFS does NOT mean she has all of them - she more than likely only has one - being the heart defect.
remember, give yourselves some credit. you created this little bundle of joy who's clearly healthy sans the heart issue (which lets face it, next to the brain, is the next most complicated organ). although any advice is going to be cold comfort until she's home with you.
We had a meeting with the Genetics specialist yesterday, he said that her only issue at the moment is her heart condition, so no kidney, liver or eye issues. So that was great news for us, i know it sounds funny but we hold on tight to any positives.
She is such a beautiful little girl
She has been put onto caffine because she was having low oxegen saturation in her blood, so the caffine helps. Might have to get her a Babycino when she gets out of hospital
Jay
I've been watching this quietly and my thoughts and prayers are with you.
Don't underestimate what medicine can do. And hold onto these moments - they are precious and make life worth living.
Don't underestimate what medicine can do. And hold onto these moments - they are precious and make life worth living.
Hi Jay,
Yeah, definately hold onto the positives! Fantastic news there are no issues with eyes, kidney, liver!!!
How's she going with the weight gain?
How's mum going?
Maeve is gaining weight but the more weight she gains, the closer the operations are, funny how your mind plays tricks on you.
Jay
Jay,
Great to hear she is gaining weight and doing so well. The hospital staff in the ICU used to say to us little ones are very strong, they have a fighting spirit....and it is true
Ours was born only 730 grs and was abt 2.5 kg when he had his 1st operation while he was still oxygen dependent and was drinking only 12 mls via IV tube. He was t'fered from Royal Women to Royal children in an ambulance for the operation.....Though he stayed in Royal Women for 6 months, though he was 5 months and 2 weeks on Oxygen and so many times we recievde call late @ night early in the morning to come in to say good bye ....BUT he kept fighting and since discharged miraculously no complications, no side effect ...
Now a very healthy teenager - taller and heavier than me so tell your wife to believe in Maeve. Our own little angels are really strong and can feel our love...to keep fighting
Cheers, Tracey
Great to hear she is gaining weight and doing so well. The hospital staff in the ICU used to say to us little ones are very strong, they have a fighting spirit....and it is true
Ours was born only 730 grs and was abt 2.5 kg when he had his 1st operation while he was still oxygen dependent and was drinking only 12 mls via IV tube. He was t'fered from Royal Women to Royal children in an ambulance for the operation.....Though he stayed in Royal Women for 6 months, though he was 5 months and 2 weeks on Oxygen and so many times we recievde call late @ night early in the morning to come in to say good bye ....BUT he kept fighting and since discharged miraculously no complications, no side effect ...
Now a very healthy teenager - taller and heavier than me
so tell your wife to believe in Maeve. Our own little angels are really strong and can feel our love...to keep fightingCheers, Tracey
Awesome news, Jay, I'm delighted to hear this.We had a meeting with the Genetics specialist yesterday, he said that her only issue at the moment is her heart condition, so no kidney, liver or eye issues. So that was great news for us, i know it sounds funny but we hold on tight to any positives.
She is such a beautiful little girl
Yeah, give her a few fags for a nicotine hit, while you're at it.Gordon Gekko said:She has been put onto caffine because she was having low oxegen saturation in her blood, so the caffine helps. Might have to get her a Babycino when she gets out of hospital
Caffeine's an interesting drug. If you're migraine-prone and don't yet have a migraine, caffeine can induce a migraine in some people, so is best avoided. Yet if you already have a migraine, caffeine is often administered for its actions as a vasoconstrictor.
That's an awesome story, Tracey, I'm so pleased to hear your story.so many times we recievde call late @ night early in the morning to come in to say good bye ....BUT he kept fighting and since discharged miraculously no complications, no side effect ...
Now a very healthy teenager - taller and heavier than me
Virtual hugs and prayers to Maeve and family.
Whilst I have not commented until now, I too rejoice in the birth of your beautiful girl Maeve, (I to love her name).
You do have to look and hold on to the positives.
My son when he was 1 week old, corrected dates had a cardiac arrest, he to was on a caffiene drip to stimulate his breathing.
I hope you and your wife and other children are looking after yourself. I recall how difficult it was having a baby in hospital for weeks, I had a little one who I had left at home whilst I was in hospital for 6 weeks, before having my son, then when I did go home I travelled 100km round trip every day, to see my baby, with a little esky of expressed milk. My son was fortunate that he did not have other medical issues, and I only did this for 3 weeks, and another 9 days when he arrested. You have a longer haul ahead of you, take care, all my prayers and sincere wishes are with you all.
You do have to look and hold on to the positives.
My son when he was 1 week old, corrected dates had a cardiac arrest, he to was on a caffiene drip to stimulate his breathing.
I hope you and your wife and other children are looking after yourself. I recall how difficult it was having a baby in hospital for weeks, I had a little one who I had left at home whilst I was in hospital for 6 weeks, before having my son, then when I did go home I travelled 100km round trip every day, to see my baby, with a little esky of expressed milk. My son was fortunate that he did not have other medical issues, and I only did this for 3 weeks, and another 9 days when he arrested. You have a longer haul ahead of you, take care, all my prayers and sincere wishes are with you all.
Thank you everybody for your prayers and your own stories.
It really is a rollercoaster ride, we have our good days and our bad days. And sometimes we have good and bad times in the same day.
The Doctors, nurses and the specialist are so wonderful. We go home to sleep and they stay there thru the night (away from their love ones) and look after our beautiful princess.
Jay
It really is a rollercoaster ride, we have our good days and our bad days. And sometimes we have good and bad times in the same day.
The Doctors, nurses and the specialist are so wonderful. We go home to sleep and they stay there thru the night (away from their love ones) and look after our beautiful princess.
Jay
