Elliot's Fight ♡
Donation protected
Elliot's Journey started at our 20week scan where 'Bump' was diagnosed with a Echogenic Bowel, Which after seeing specialists was told this was an indication our baby could have Down syndrome or Cystic Fribrosis.
From then on we had weekly scans as bumps growth was also concerning under the 10th centile, our baby was tiny..
We were offered the Anminocentisis test, but we declined as it was to risky to our unborn child, we was even offered to not continue on with this pregnancy.. he or she was still our baby, we had the weekly scans knowing any week they could decide it was time for him or her to be born, at 33 weeks i was admitted into hospital, pumped with steriods for our babys lungs, a further 4scans and we made it to exactly 34weeks where i was induced, 1 hour later our tiny 4lb baby BOY was born!
he was taken straight from me into his awaiting incubator with a room full of medical professinals.
Elliot spent 2.5 weeks in Neonatal Intensive Care on Cpap helping him breathe, oxygen, feeding tubes, covered in tubes & wires, he had many xrays, head scans, tests, photothearpy, whilst in ICU he was diagnosed with Sepsis & treated for this, a heart mummur & clicky hips.
It was a long 2.5 weeks emotinally back and forth to the hospital taking him my expressed breast milk i was pumping every 2-3 hours, holding this tiny little boy through his incubator door, NG tube feeding him and finally naming him after a week 'Elliot Jay Harridge'
Finally the day come i could start breastfeeding him and not breastfeeding a pumping machine!, and soon enough he was allowed to come home :)
We thought this was the start of our family together, but we had no idea this was just the start of our problems...
Elliot was re-admitted into hospital for jaundice, he was so jaudince his levels where just under the blood transfusion levels, he ended up being admitted every few days and had a total of 7 photothearpys and doubled ones for his jaundice, the doctors did not know why his levels kept coming back & so hig, they spoke to Kings college hospital in London.. until Elliot become very poorly in hospital and was daignosed with Bronchiolitis whilst in hospital he stopped feeding from me (BF) and formula so he was NG tube fed and on oxygen as he was really struggling with his breathing , early the next morning our little boy took a huge turn for the worse when he was being ng tube fed by nurses he stopped breathing completly and went floppy and stopped breathing, the emergency button was pulled, the room filled with doctors, nurses and the Crash team came and cut his clothes off and helped him.
Elliot was put back on Cpap machine which would help him breathe after being put on a apea alarm where he set it off a futher 7times within a few minutes where he would stop breathing, xrayed & bloods reviled he has Asperation Pneunomia and was diagnosed with Gastro-oesophageal reflux disease & Apnea episodes where he would stop breathing
They asked & i explained he had gone floppy on us a few times at home when i would feed him but we didnt know this wasent right as he would always De-sat in neonatal so i thought this was just one of them and after 2 healthily girls this was all new to us..he was so so sick after pretty much every feed as they see for themselves his 'large vomits', he spent 2 weeks on the ward before coming home, but Elliot contiued to have problems we spent many more days and nights in A&E with them thinking he had too much fluid around his brain which turned out to be he had malnutrition from being so sick all the nutrients went to his head to perserve his brain and not his tiny little body, and many more admissions for his severe vomiting and then finally he was admitted on Christmas Day afternoon, we was trying to hold out till atleast boxing day due to being christmas day and having 2 other children but Elliot really wasent well at all, his cough that he always has had was awful, he was so sick and very sleepy, Doctors told us it was a 'bug'..he was severly dehydrated so was put on a drip, his cap refil was 4-5seconds, he was cold and his soft spot had sunken in all this came on so quickly.
once he was hydrated he was sent home on a new high calorie milk, his 6th type of milk by this point as SALT told me it was too dangerous to breastfeed him after 1st pneunomia, so we was home a whole day before we brought him back to A&E for the same thing, he was severly dehydrated again he was admitted and kept in and then things went wrong again on New Years Day morning around 1am Elliot was tube fed after being nil by mouth for a few days dur to his breathing difficulties this was his 2nd feed, and he chocked on his own vomit & milk as it went down & came straight back up, he was taken to Resus he was very poorly he spent hours & hours in resus with me and all the medical team trying to canulate him to get fluids in, they tryed 7 times in his hands & feet before last resort shaving and putting a canular in his head, squezed fluids into his body via his head.
once he was stabilsed he had a emergency xray in resus as his resp rate was over a 100 breaths a min, they came back very quickly and was told he has Asperation Pneunomia for the 2nd time, scaring to his lungs & a partical right collapsed lung as a result of damage from pneunomias , he as kept in a further 2weeks on Cpap ,oxygen, suction & nebulisers, IV antibotics once he was well enough he was reassed by SALT and deemed Unsafe Swallow, and that his breathing & feeding problems as he was not coordinated and forgets to breathe and aspirates into his lungs, he was sent home NG tube fed again and continued to be so sick even being tube fed , he kept loosing weight, his failure to thrive was concering as he wasent even on the charts he was well below & still is any of the lines, so he was re- admitted by his consultant and has a NJ tube placed into his bowel so he could not be sick and aspirate , he was put on a continous pump, I had to be trained again once again and we was sent home with both NG & NJ tubes, and a feeding pump.
Since then we have been plodding along, doing okay-ish he was diagnosed with Reflux Gastrisis where he vomits old blood , his xray showed he has a huge dilated intestine/ dilated looped bowel, he kept loosing weight as he likes to pull his tubes out, he put on a oz this week but is still only 9lb, 5oz & over 6months old now, we still spent alot of time in hospital just this week we have spent 3 days in hospital, he has alot of scans, xrays & tests all the time, he is being kept nil by mouth as its too dangerous to feed and wean him.
And then we had an appoitment with his consulatants & specialists on Tuesday 12th April. at 9.00am we left 2 hours later with a Rare diagnosis our little boy has extra chromosones in his body, Elliots particilar diagnosis Chromosones disorder is so rare there is no other with the same in the whole world, there is no name, no answes as to what life holds for him as no one has had his type of dignosis, so we dont know what his develpment, life expectancy, quality of life will be but this could explain why he has so many problems..
this is just the start for us he has now been reffered to GOSH for a Peg to be fitted and the Fundoplication Operation to stop him from being sick, ans suffers with reflux gastritis where he vomits old blood oftern, we had genetic testing today, and further CF testing as hes always been too small to test..he had a consultant appoitment today also and has to have A MRI scan under anesthtic so awaitng to be admitted into hopsital, again!..the MRI is due to him being diagnnosed with a dilated intestine/ Dilated Looped Bowel something isnt right..:( and now he has been reffered for physio for his body as he was diagnosed hypermobile in his shoulders, hips knees and ancles, with still a clicky hip so cant do anything yet..
Update 2017- Elliot 19months, 12lb, 5oz
So a brief update, Elliot has his surgery at GOSH in septmber, fundoplication to stop him from ever able to be sick so he cant aspirate and a gastrosotmy so we could loose the Ng & Nj tubes, sadly his surgery failed and Elliot was chronically aspirateing he has now fought 9, yes 9 Aspitation Pneumonias, collapsed lungs and 100's of repository infections from aspirating, so he went back to NJ tube which lead to many more issues and the hardest hospital admissions i have faced with him where the Nj would come out wih him throwing up, leading to sometimes 48 hours in hospital without beig fed as they couldent get it back into his bowel, BM's of 1.1 so he was havig hypos despite full maintainace and glucose drip, anyway since then he has now had further surgery for a GJ placement, a tube into his bowel where he is fed, and another tube into his stomach for all his medications.
Elliot is also under neurosurgeons for his brain conditions, whilist in GOSH he had another MRI scan of his brain this time, Ultra sounds of his brain which have now got brain diagnoses, with 3/4 brain conditions we are awaiting his 3rd MRI scan this time of his spine & sleep study to move foward with brain surgery, its our last glimmer of hope it feels like :( whilst in gosh we also had heart echo scans as he has a hole in his heart too.
Genetics are further looking into more conditions, so we are awaiting results.
we are under many teams at GOSH, econdineolgy, chest team, genetics, acute care, and complex care, gastro, and Neurology,..aswel as teams at our local hospitals, physio, eyes, peads,nurses ect
the last 6 months have been the hardest for us, i oftern think 'why him'? hes thr most adorable loving tiny little boy ♡
Elliot is 24hour care he sleeps & screams all day and night, but when he is awake for one or two wake periods a day he is BEAUTIFUL with or without 2 tubes!..he is still like a newborn baby, he can smile and grab his toys but thats about it on the development side, Elliot has 2 big Sisters Ebony (8) and Esmae (3) who love and adore him, I was overwhelmed to hear and be told people would like to donate to him, i still dont know what to say!
So here is his story as brifely as i can explain most of his journey and thankyou very very much love Elliot's, Mummy,Daddy, Ebony & Esmae! XxX
UPDATE- MAY2018
Elliot went into GOSH last september 2017, he spent 6months there. he has 7 operations in total, starting with a central line into his heart, Where he was put onto TPN, He was diagnosed with Intestinal Failure, so after 6months come home on HomePN.
Elliot is neutropenic, no one knows why yet, is was discoverd whikst we was in gosh for so long, and has stayed severly neutrpenic, he has VRE & has recently had his 2nd Septic Line infection where he was back in our local hospital for 3weeks saving his line.
From then on we had weekly scans as bumps growth was also concerning under the 10th centile, our baby was tiny..
We were offered the Anminocentisis test, but we declined as it was to risky to our unborn child, we was even offered to not continue on with this pregnancy.. he or she was still our baby, we had the weekly scans knowing any week they could decide it was time for him or her to be born, at 33 weeks i was admitted into hospital, pumped with steriods for our babys lungs, a further 4scans and we made it to exactly 34weeks where i was induced, 1 hour later our tiny 4lb baby BOY was born!
he was taken straight from me into his awaiting incubator with a room full of medical professinals.
Elliot spent 2.5 weeks in Neonatal Intensive Care on Cpap helping him breathe, oxygen, feeding tubes, covered in tubes & wires, he had many xrays, head scans, tests, photothearpy, whilst in ICU he was diagnosed with Sepsis & treated for this, a heart mummur & clicky hips.
It was a long 2.5 weeks emotinally back and forth to the hospital taking him my expressed breast milk i was pumping every 2-3 hours, holding this tiny little boy through his incubator door, NG tube feeding him and finally naming him after a week 'Elliot Jay Harridge'
Finally the day come i could start breastfeeding him and not breastfeeding a pumping machine!, and soon enough he was allowed to come home :)
We thought this was the start of our family together, but we had no idea this was just the start of our problems...
Elliot was re-admitted into hospital for jaundice, he was so jaudince his levels where just under the blood transfusion levels, he ended up being admitted every few days and had a total of 7 photothearpys and doubled ones for his jaundice, the doctors did not know why his levels kept coming back & so hig, they spoke to Kings college hospital in London.. until Elliot become very poorly in hospital and was daignosed with Bronchiolitis whilst in hospital he stopped feeding from me (BF) and formula so he was NG tube fed and on oxygen as he was really struggling with his breathing , early the next morning our little boy took a huge turn for the worse when he was being ng tube fed by nurses he stopped breathing completly and went floppy and stopped breathing, the emergency button was pulled, the room filled with doctors, nurses and the Crash team came and cut his clothes off and helped him.
Elliot was put back on Cpap machine which would help him breathe after being put on a apea alarm where he set it off a futher 7times within a few minutes where he would stop breathing, xrayed & bloods reviled he has Asperation Pneunomia and was diagnosed with Gastro-oesophageal reflux disease & Apnea episodes where he would stop breathing
They asked & i explained he had gone floppy on us a few times at home when i would feed him but we didnt know this wasent right as he would always De-sat in neonatal so i thought this was just one of them and after 2 healthily girls this was all new to us..he was so so sick after pretty much every feed as they see for themselves his 'large vomits', he spent 2 weeks on the ward before coming home, but Elliot contiued to have problems we spent many more days and nights in A&E with them thinking he had too much fluid around his brain which turned out to be he had malnutrition from being so sick all the nutrients went to his head to perserve his brain and not his tiny little body, and many more admissions for his severe vomiting and then finally he was admitted on Christmas Day afternoon, we was trying to hold out till atleast boxing day due to being christmas day and having 2 other children but Elliot really wasent well at all, his cough that he always has had was awful, he was so sick and very sleepy, Doctors told us it was a 'bug'..he was severly dehydrated so was put on a drip, his cap refil was 4-5seconds, he was cold and his soft spot had sunken in all this came on so quickly.
once he was hydrated he was sent home on a new high calorie milk, his 6th type of milk by this point as SALT told me it was too dangerous to breastfeed him after 1st pneunomia, so we was home a whole day before we brought him back to A&E for the same thing, he was severly dehydrated again he was admitted and kept in and then things went wrong again on New Years Day morning around 1am Elliot was tube fed after being nil by mouth for a few days dur to his breathing difficulties this was his 2nd feed, and he chocked on his own vomit & milk as it went down & came straight back up, he was taken to Resus he was very poorly he spent hours & hours in resus with me and all the medical team trying to canulate him to get fluids in, they tryed 7 times in his hands & feet before last resort shaving and putting a canular in his head, squezed fluids into his body via his head.
once he was stabilsed he had a emergency xray in resus as his resp rate was over a 100 breaths a min, they came back very quickly and was told he has Asperation Pneunomia for the 2nd time, scaring to his lungs & a partical right collapsed lung as a result of damage from pneunomias , he as kept in a further 2weeks on Cpap ,oxygen, suction & nebulisers, IV antibotics once he was well enough he was reassed by SALT and deemed Unsafe Swallow, and that his breathing & feeding problems as he was not coordinated and forgets to breathe and aspirates into his lungs, he was sent home NG tube fed again and continued to be so sick even being tube fed , he kept loosing weight, his failure to thrive was concering as he wasent even on the charts he was well below & still is any of the lines, so he was re- admitted by his consultant and has a NJ tube placed into his bowel so he could not be sick and aspirate , he was put on a continous pump, I had to be trained again once again and we was sent home with both NG & NJ tubes, and a feeding pump.
Since then we have been plodding along, doing okay-ish he was diagnosed with Reflux Gastrisis where he vomits old blood , his xray showed he has a huge dilated intestine/ dilated looped bowel, he kept loosing weight as he likes to pull his tubes out, he put on a oz this week but is still only 9lb, 5oz & over 6months old now, we still spent alot of time in hospital just this week we have spent 3 days in hospital, he has alot of scans, xrays & tests all the time, he is being kept nil by mouth as its too dangerous to feed and wean him.
And then we had an appoitment with his consulatants & specialists on Tuesday 12th April. at 9.00am we left 2 hours later with a Rare diagnosis our little boy has extra chromosones in his body, Elliots particilar diagnosis Chromosones disorder is so rare there is no other with the same in the whole world, there is no name, no answes as to what life holds for him as no one has had his type of dignosis, so we dont know what his develpment, life expectancy, quality of life will be but this could explain why he has so many problems..
this is just the start for us he has now been reffered to GOSH for a Peg to be fitted and the Fundoplication Operation to stop him from being sick, ans suffers with reflux gastritis where he vomits old blood oftern, we had genetic testing today, and further CF testing as hes always been too small to test..he had a consultant appoitment today also and has to have A MRI scan under anesthtic so awaitng to be admitted into hopsital, again!..the MRI is due to him being diagnnosed with a dilated intestine/ Dilated Looped Bowel something isnt right..:( and now he has been reffered for physio for his body as he was diagnosed hypermobile in his shoulders, hips knees and ancles, with still a clicky hip so cant do anything yet..
Update 2017- Elliot 19months, 12lb, 5oz
So a brief update, Elliot has his surgery at GOSH in septmber, fundoplication to stop him from ever able to be sick so he cant aspirate and a gastrosotmy so we could loose the Ng & Nj tubes, sadly his surgery failed and Elliot was chronically aspirateing he has now fought 9, yes 9 Aspitation Pneumonias, collapsed lungs and 100's of repository infections from aspirating, so he went back to NJ tube which lead to many more issues and the hardest hospital admissions i have faced with him where the Nj would come out wih him throwing up, leading to sometimes 48 hours in hospital without beig fed as they couldent get it back into his bowel, BM's of 1.1 so he was havig hypos despite full maintainace and glucose drip, anyway since then he has now had further surgery for a GJ placement, a tube into his bowel where he is fed, and another tube into his stomach for all his medications.
Elliot is also under neurosurgeons for his brain conditions, whilist in GOSH he had another MRI scan of his brain this time, Ultra sounds of his brain which have now got brain diagnoses, with 3/4 brain conditions we are awaiting his 3rd MRI scan this time of his spine & sleep study to move foward with brain surgery, its our last glimmer of hope it feels like :( whilst in gosh we also had heart echo scans as he has a hole in his heart too.
Genetics are further looking into more conditions, so we are awaiting results.
we are under many teams at GOSH, econdineolgy, chest team, genetics, acute care, and complex care, gastro, and Neurology,..aswel as teams at our local hospitals, physio, eyes, peads,nurses ect
the last 6 months have been the hardest for us, i oftern think 'why him'? hes thr most adorable loving tiny little boy ♡
Elliot is 24hour care he sleeps & screams all day and night, but when he is awake for one or two wake periods a day he is BEAUTIFUL with or without 2 tubes!..he is still like a newborn baby, he can smile and grab his toys but thats about it on the development side, Elliot has 2 big Sisters Ebony (8) and Esmae (3) who love and adore him, I was overwhelmed to hear and be told people would like to donate to him, i still dont know what to say!
So here is his story as brifely as i can explain most of his journey and thankyou very very much love Elliot's, Mummy,Daddy, Ebony & Esmae! XxX
UPDATE- MAY2018
Elliot went into GOSH last september 2017, he spent 6months there. he has 7 operations in total, starting with a central line into his heart, Where he was put onto TPN, He was diagnosed with Intestinal Failure, so after 6months come home on HomePN.
Elliot is neutropenic, no one knows why yet, is was discoverd whikst we was in gosh for so long, and has stayed severly neutrpenic, he has VRE & has recently had his 2nd Septic Line infection where he was back in our local hospital for 3weeks saving his line.
Organizer
Vikki Mason
Organizer
