Well whats been happening since the last time I posted? Erm Logans been in and out of hospital with various viruses so he has been put on antibiotics over the winter to prevent it and it seems to be working..week 3 of not being ill! Wahoo! And he has finally started eating an evening meal! Weighed 12lb 8 at last weigh in.
Had echo for Brendan yesterday and all is clear and genetics appointment today which was just explaining about genes and the kids being able to have children which they can YAYYY
Erm thats it just looking forward to Christmas!
Tuesday, 15 December 2009
Friday, 30 October 2009
Sunday, 18 October 2009
Logans cardiologist appointment 13th October 2009
Saw Dr Derrick today. Logan has a slight wheeze so has been put on Diuretics to make him less breathless and as he has high blood flow hope it takes some of the moisture from his lungs.
Thats all that was really done, no echo etc! Still no test results! No surgery before xmas so we are taking the kids to Disneyland Paris at the end of January..something to look forward to. Also planning on getting Logan christened on 6th Dec. Im also fundraising got a sponsored walk on 21st Nov so BUSY BUSY
Best way to be atm.
Thats all that was really done, no echo etc! Still no test results! No surgery before xmas so we are taking the kids to Disneyland Paris at the end of January..something to look forward to. Also planning on getting Logan christened on 6th Dec. Im also fundraising got a sponsored walk on 21st Nov so BUSY BUSY
Best way to be atm.
Thursday, 1 October 2009
Hospital appointment yesterday
Well I was hoping to get the kids test results back for 22q11 but nothing as yet. Logan now weighs 11lb 14 and apparently he isnt gaining enough so within the next 2 weeks Ive gotta try and stuff and extra ounce into each of his bottles plus a breakfast meal as well as a teatime one.
TBH Weaning isnt going well I feel like he is constantly spitting it out and Im repeatedly shoving it bk in. I will try and do as they ask but I dont think its gonna be easy....NG Tube will then be put in if no change :(
He is doing well otherwise. SAT'S are good 89%..he is on no medication except an inhaler and calorie stuff for his feeds. He is obviously hungry as the past 2 nights he hasnt eaten his tea he has been waking 2-3 times in the night.
Another battle to over come i guess.
We are seeing Dr Derrick in 2 weeks and Im dreading it tbh...he will wanna discuss surgery. Wish I could hide away.
TBH Weaning isnt going well I feel like he is constantly spitting it out and Im repeatedly shoving it bk in. I will try and do as they ask but I dont think its gonna be easy....NG Tube will then be put in if no change :(
He is doing well otherwise. SAT'S are good 89%..he is on no medication except an inhaler and calorie stuff for his feeds. He is obviously hungry as the past 2 nights he hasnt eaten his tea he has been waking 2-3 times in the night.
Another battle to over come i guess.
We are seeing Dr Derrick in 2 weeks and Im dreading it tbh...he will wanna discuss surgery. Wish I could hide away.
Thursday, 13 August 2009
I feel the need to waffle
I feel the need to update this blog as Im feeling a bit down about everything. I keep seeing babies the same age as Logan if not younger doing well, laying on their tummies and holding their heads up and he doesnt do any of that, he cant hold his head up and he is 13 weeks old. I know thats just how he is and its to be expected but I do feel a little jealous seeing healthy babies which is probably wrong of me.
Hospital appointment yesterday.....Well we didn't get in til 5.15 and our appointment was at 4.15!! Anyway she wants me and Lee tested then i chimed in and said I wanted kids done too so we are all being tested for 22q11. Food wise he hasnt gained weight this week but they are happy with him atm, tube isnt needed yet and they want him weaned asap so 16 weeks. Heart is ok atm, lungs are clear. His sweaty ness is fine that's normal for him. Will see Dr Derrick in maybe his October clinic and they wont operate until he starts to struggle giving him the best poss chance of growing. Rang CLN today and she is chasing up test results for calcium and immunity.
Think thats all for today!
Hospital appointment yesterday.....Well we didn't get in til 5.15 and our appointment was at 4.15!! Anyway she wants me and Lee tested then i chimed in and said I wanted kids done too so we are all being tested for 22q11. Food wise he hasnt gained weight this week but they are happy with him atm, tube isnt needed yet and they want him weaned asap so 16 weeks. Heart is ok atm, lungs are clear. His sweaty ness is fine that's normal for him. Will see Dr Derrick in maybe his October clinic and they wont operate until he starts to struggle giving him the best poss chance of growing. Rang CLN today and she is chasing up test results for calcium and immunity.
Think thats all for today!
Thursday, 30 July 2009
Weight Issues
Logan is now 11 weeks old..gone fast! But only weighs 9lb 15oz. My health visitor is faffing as he only put on 3oz this week and the dietician wants him to take another 100ml of milk, which is near on impossible as he just refuses it.
Im trying to get them to understand that heart babies do not gain weight well especially those babies with Digeorge syndrome. Poor weight gain is one of the symptoms and Im really lucky he feeds by himself. Discussions will be held next week and Im worried they will suggest an NG feeding tube. I really do not want this for him yet as he feeds by himself and feeds well. I know its going to be an option when he has surgery so he doesnt waste energy.
So I think im in for a fight with health visitors and dieticians. I know he needs to pack on weight before his 1st operation but I think we just have to let Logan do that by himself. I will worry when he looses weight and becomes withdrawn but atm he is a happy smiley baby.
Im trying to get them to understand that heart babies do not gain weight well especially those babies with Digeorge syndrome. Poor weight gain is one of the symptoms and Im really lucky he feeds by himself. Discussions will be held next week and Im worried they will suggest an NG feeding tube. I really do not want this for him yet as he feeds by himself and feeds well. I know its going to be an option when he has surgery so he doesnt waste energy.
So I think im in for a fight with health visitors and dieticians. I know he needs to pack on weight before his 1st operation but I think we just have to let Logan do that by himself. I will worry when he looses weight and becomes withdrawn but atm he is a happy smiley baby.
How it all began
5th September 2008 I found out I was pregnant with my baby boy :)
All of our scans were normal...a healthy baby or so we thought. I always thought he looked like Rian here he has his nose. 23+6 scan
My C section was booked for 14th May and I couldnt wait...huge wasnt the word, everyone expected a big baby but Logan was a weeny 6lb 4oz
Logan was born on the 14th May 2009 at 1.01pm . After 15 long months of trying for him he is a much wanted baby. We had a problem free pregnancy and were so happy when Logan came into the world.
All was going great, we were discharged after 2 days in hospital and had 3 fabulous weeks at home.
When Logan was 3 weeks old he got a nasty cold that we had all had, he was so bunged up and saw the Dr on Monday 8th June where he was prescribed Saline drops for his snotty nose.
On the 10th June I decided to get Logan weighed. He had lost a couple of ounces and the health visitor Anette wanted me to see the nurse again as his cold was no better. We saw the nurse who then asked Dr Rudd to come in and assess his breathing. His respiratory rate was high and Dr Rudd wanted us to go to Queen Elizabeth Hospital in Kings Lynn. In the lift of the hospital I thought it would be a waste of time, he only had a cold like we had all had and kids get colds all the time right?
Once in our side room the nurses came in and did the usual Obs on him. One nurse sucked all the snot out of his nose. It was horrible seeing that tube being stuffed down his nose.
A paediatrician then came in. She wanted a chest xray to see if his chest was clear. She then picked up a heart murmur. At this point I was thinking that's ok sometimes they fix themselves!
So an echo was ordered. The xray was done then Dr Rubin came to do his Echo. She was talking to her colleague with big words I didn't understand..large overriding Aorta was mentioned alot and VSD. I broke down and ran out of the room to call Lee and i just kept saying to him theres something wrong with his heart its his heart.
Dr Rubin then explained to me that Logan had something called Tetralogy of Fallot and gave me a little booklet which I read 100 times over. Brain damage/death/open heart surgery/and bypass machine words stuck out at me and I cried pretty much all the time during our stay in hospital.
Logan was hooked up to a SAT's monitor and oxygen tube for his nose.
On Friday 12th June we were transferred to Great Ormond Street Hospital in London to attend Dr Derricks clinic. He is a Paediatric Consultant Cardiologist. He did an Echo on Logan and confirmed Dr Rubins findings and also that his Pulmonary valve was missing AKA Pulmonary Atresia.
Logan was sent back to QEH to finish his antibiotics for his chest infection and to be taken off oxygen as that would make him more breathless.
A cardiac catheter procedure was done on 3rd July. We stayed in London for 2 days and did a bit of sightseeing while we were there. Logan was so good he had to be starved for a good 7 hours and he only cried the last half an hour.
All you think about is how can this be happening to my baby, is he going to make it and you basically feel like your world has ended and your not going to cope. Tears come and go, I was even scared to hold him at one point.
A diagnoses letter came through once home and Logan has Pulmonary Atresia with VSD, Right Aortic Arch, MACPAS, and 22q11 deletion which is a chromosome deletion aka DiGeorge syndrome.
Logan has been put on Infatrini to help him gain weight for his 1st operation.
They plan on joining up his collateral blood vessels as the angio showed he has high blood flow to the left lung and not so much to the right. So they want to join them all back up back to his heart and a conduit valve then close his VSD but leave a small gap as a blow off valve.
This will all be done once Logan is bigger as its a tricky operation.
All of our scans were normal...a healthy baby or so we thought. I always thought he looked like Rian here he has his nose. 23+6 scan
My C section was booked for 14th May and I couldnt wait...huge wasnt the word, everyone expected a big baby but Logan was a weeny 6lb 4oz
Logan was born on the 14th May 2009 at 1.01pm . After 15 long months of trying for him he is a much wanted baby. We had a problem free pregnancy and were so happy when Logan came into the world.
All was going great, we were discharged after 2 days in hospital and had 3 fabulous weeks at home.
When Logan was 3 weeks old he got a nasty cold that we had all had, he was so bunged up and saw the Dr on Monday 8th June where he was prescribed Saline drops for his snotty nose.
On the 10th June I decided to get Logan weighed. He had lost a couple of ounces and the health visitor Anette wanted me to see the nurse again as his cold was no better. We saw the nurse who then asked Dr Rudd to come in and assess his breathing. His respiratory rate was high and Dr Rudd wanted us to go to Queen Elizabeth Hospital in Kings Lynn. In the lift of the hospital I thought it would be a waste of time, he only had a cold like we had all had and kids get colds all the time right?
Once in our side room the nurses came in and did the usual Obs on him. One nurse sucked all the snot out of his nose. It was horrible seeing that tube being stuffed down his nose.
A paediatrician then came in. She wanted a chest xray to see if his chest was clear. She then picked up a heart murmur. At this point I was thinking that's ok sometimes they fix themselves!
So an echo was ordered. The xray was done then Dr Rubin came to do his Echo. She was talking to her colleague with big words I didn't understand..large overriding Aorta was mentioned alot and VSD. I broke down and ran out of the room to call Lee and i just kept saying to him theres something wrong with his heart its his heart.
Dr Rubin then explained to me that Logan had something called Tetralogy of Fallot and gave me a little booklet which I read 100 times over. Brain damage/death/open heart surgery/and bypass machine words stuck out at me and I cried pretty much all the time during our stay in hospital.
Logan was hooked up to a SAT's monitor and oxygen tube for his nose.
On Friday 12th June we were transferred to Great Ormond Street Hospital in London to attend Dr Derricks clinic. He is a Paediatric Consultant Cardiologist. He did an Echo on Logan and confirmed Dr Rubins findings and also that his Pulmonary valve was missing AKA Pulmonary Atresia.
Logan was sent back to QEH to finish his antibiotics for his chest infection and to be taken off oxygen as that would make him more breathless.
A cardiac catheter procedure was done on 3rd July. We stayed in London for 2 days and did a bit of sightseeing while we were there. Logan was so good he had to be starved for a good 7 hours and he only cried the last half an hour.
All you think about is how can this be happening to my baby, is he going to make it and you basically feel like your world has ended and your not going to cope. Tears come and go, I was even scared to hold him at one point.
A diagnoses letter came through once home and Logan has Pulmonary Atresia with VSD, Right Aortic Arch, MACPAS, and 22q11 deletion which is a chromosome deletion aka DiGeorge syndrome.
Logan has been put on Infatrini to help him gain weight for his 1st operation.
They plan on joining up his collateral blood vessels as the angio showed he has high blood flow to the left lung and not so much to the right. So they want to join them all back up back to his heart and a conduit valve then close his VSD but leave a small gap as a blow off valve.
This will all be done once Logan is bigger as its a tricky operation.
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