Elijah's Heart - a CHD Journey
Donation protected
Healing Baby Elijahs Broken Heart
Once again little Elijah and his family are embarking on a roller coaster of uncertainty.
The Back Story...
In October 2018, Sarah and Antony were elated to find out that they were expecting. They had been trying for 3 years and finally with medical intervention, a miracle happened! In December they found out it was a double miracle! Twins! They went through many different emotions and they finally were at peace with the fact that along with their 4 yr old son, their children would out number them. About half way through the pregnancy Sarah ended up on modified bed rest and at one point was on strict hospital bed rest. She did as she was told in hopes of keeping those babies until term. She was given steroids to help the babies lungs develop just in case. She was released to bed rest at home but a week later, due to a tragic accident Sarah lost her beautiful cousin and best friend Krista. She decided that to honor her cousin, Baby B's middle name would be Kristan.
On June 17, 2019 at 37 weeks, Sarah gave birth to her beautiful and perfect twin boys Spencer Cole and Elijah Kristan! They were released after 48 hours and went home to start life as a family of five. Everything was perfect. Sure there were sleepless nights and exhaustion but they were happy. When the babies were 8 days old, Sarah and Antony started having some concerns with Elijah. His eating had slowed down and his coloring was a little off. They had a well baby appointment booked for the next morning so they could address their concerns with their doctor. Upon seeing baby Elijah, Dr. Amster sent them immediately to Windsor Regional Hospital. Told them to bypass the ER and go directly to pediatrics.
Once there they were sent down to have his blood drawn. Sarah and Antony were immediately concerned, as the lab were not able to draw blood from him. At this point, he was completely lethargic, turning grey and would not eat at all. Once more, they were sent back upstairs to see the nurses there. A nurse brought them into a room to take his vitals and weight, however they had trouble doing that as well. Another nurse was called in. And then a doctor, who scooped him up and ran him down to the NICU.
From *there it was a flurry of activity with Doctors and nurses arriving from everywhere. They worked hard to stabilize him and it was said that if he had arrived even a half hour later they would have lost their beautiful baby boy. The doctors decided he needed to be flown 370 km (230 miles) away to Sick Childrens Hospital in Toronto, Ontario. I (Grandma) was called to come to the hospital to pick up Spencer and bring him home. I kept their sons Xander and Spencer with me. The transfer team from London, Ontario was called in to stabilize and transfer him. At this point it was 10 pm and Sarah was devastated to learn that she would not be allowed to fly with him. Her and Antony would have to make the 4 hour drive on no sleep. Thankfully a hospital advocate stepped in and talked the team into letting Sarah go with him. They drove by ambulance to Windsor airport and were flown to Toronto airport where an ambulance was waiting to take him to Sick Kids Hospital. Once there he was re-hooked up to all the monitors and Sarah was shown around.
Antony came home to pack up some things and try and sleep for an hour to make the drive. Upon arriving home, Xander was still up crying for them so Antony layed down with him and read him a story. They both fell asleep so I decided to let him sleep for a while, hoping he'd be refreshed enough to drive.
Antony drove up the following morning and met Sarah at the hospital. The pediatric cardiologist sat them down and told them... Elijah has 4 Congenital heart defects (CHD) with one of them being critical. They decided his little body was too weak to have the surgery that day so they would keep him sedated til the following day and perform the life saving surgery. The Critical CHD is called Coarctation Of the Aorta followed by Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD) and Bicuspid Aortic Valve (BAV)
Once again little Elijah and his family are embarking on a roller coaster of uncertainty.
The Back Story...
In October 2018, Sarah and Antony were elated to find out that they were expecting. They had been trying for 3 years and finally with medical intervention, a miracle happened! In December they found out it was a double miracle! Twins! They went through many different emotions and they finally were at peace with the fact that along with their 4 yr old son, their children would out number them. About half way through the pregnancy Sarah ended up on modified bed rest and at one point was on strict hospital bed rest. She did as she was told in hopes of keeping those babies until term. She was given steroids to help the babies lungs develop just in case. She was released to bed rest at home but a week later, due to a tragic accident Sarah lost her beautiful cousin and best friend Krista. She decided that to honor her cousin, Baby B's middle name would be Kristan.
On June 17, 2019 at 37 weeks, Sarah gave birth to her beautiful and perfect twin boys Spencer Cole and Elijah Kristan! They were released after 48 hours and went home to start life as a family of five. Everything was perfect. Sure there were sleepless nights and exhaustion but they were happy. When the babies were 8 days old, Sarah and Antony started having some concerns with Elijah. His eating had slowed down and his coloring was a little off. They had a well baby appointment booked for the next morning so they could address their concerns with their doctor. Upon seeing baby Elijah, Dr. Amster sent them immediately to Windsor Regional Hospital. Told them to bypass the ER and go directly to pediatrics.
Once there they were sent down to have his blood drawn. Sarah and Antony were immediately concerned, as the lab were not able to draw blood from him. At this point, he was completely lethargic, turning grey and would not eat at all. Once more, they were sent back upstairs to see the nurses there. A nurse brought them into a room to take his vitals and weight, however they had trouble doing that as well. Another nurse was called in. And then a doctor, who scooped him up and ran him down to the NICU.
From *there it was a flurry of activity with Doctors and nurses arriving from everywhere. They worked hard to stabilize him and it was said that if he had arrived even a half hour later they would have lost their beautiful baby boy. The doctors decided he needed to be flown 370 km (230 miles) away to Sick Childrens Hospital in Toronto, Ontario. I (Grandma) was called to come to the hospital to pick up Spencer and bring him home. I kept their sons Xander and Spencer with me. The transfer team from London, Ontario was called in to stabilize and transfer him. At this point it was 10 pm and Sarah was devastated to learn that she would not be allowed to fly with him. Her and Antony would have to make the 4 hour drive on no sleep. Thankfully a hospital advocate stepped in and talked the team into letting Sarah go with him. They drove by ambulance to Windsor airport and were flown to Toronto airport where an ambulance was waiting to take him to Sick Kids Hospital. Once there he was re-hooked up to all the monitors and Sarah was shown around.
Antony came home to pack up some things and try and sleep for an hour to make the drive. Upon arriving home, Xander was still up crying for them so Antony layed down with him and read him a story. They both fell asleep so I decided to let him sleep for a while, hoping he'd be refreshed enough to drive.
Antony drove up the following morning and met Sarah at the hospital. The pediatric cardiologist sat them down and told them... Elijah has 4 Congenital heart defects (CHD) with one of them being critical. They decided his little body was too weak to have the surgery that day so they would keep him sedated til the following day and perform the life saving surgery. The Critical CHD is called Coarctation Of the Aorta followed by Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD) and Bicuspid Aortic Valve (BAV)
On June 29th at 11 days old, Elijah received surgery on his heart to mend the COA. The surgery was successful! The following day he was taken off the ventilator, weened off the epinephrine and his blood pressure stabilized. He was still receiving fluids and morphine for pain but he was opening his beautiful eyes and moving his limbs! It was at this point we decided to also bring Xander and Spencer to Toronto so the little family could be together. Xander was having more issues with separation anxiety which had started previously when Sarah spent a week in hospital while pregnant. In Toronto, they spent the first couple nights in the hospital with him and eventually they were accepted to Ronald McDonald House.
The unexpected cost of all this was adding up and already there was no income coming in. Gas, food, lodging is pricey in Toronto and even hospital parking is $20 a day. Antony was waiting for his Parental leave to kick in which ended up taking 3 months. Sarahs cousin Kayla started a facebook fundraiser to help them and family, friends and even some people we didn't know sent in donations and oh my goodness we were so grateful! They managed to raise $4000. Antonys employer, Teppermans also did a fundraiser with employees that helped immensely. With bills at home still needing to be paid and adding the expense of Toronto with no income coming in, the funds donated kept them a float. They were able to dedicate their all to Elijah without the stress of worrying as much about money. It also helped with gas, food and lodging in London for all of his monthly follow up appoints. Without the help from others Im not sure how they would have managed.
On July 4th, Elijah was released from the hospital and into his parents care. The doctors wanted them to remain in Toronto until his follow up appointment a week later but due to the expense they asked if they could bring him home to Windsor and do his follow up appointments at the Children's Hospital in London since it was 2 hours closer to home. The doctors agreed. His first follow up appointment showed that he was healing nicely. He was on restrictions for about 10 weeks of no bathing, no picking up under arms and no tummy time. At birth he was 5lb 6oz and now he was weighing just under 5lb. We had to run out and buy him preemie clothes which he stayed in for almost another month.
Over the next few months they continued with their monthly appointments in London. He had an echo each time to check on the repair but also to keep an eye on the ASD and VSD. Doctors were hoping the holes would close on their own or at least show some progress. On their most recent appointment on October 10th... the defects were showing no sign of healing on their own. Elijah was doing ok with his weight for the time being. He was 4 months old and weighing just over 10lbs.
The holes are effecting him though. He at times is inconsolable, his feedings of only 3oz are difficult. He will sip from the bottle then arch his back and cry causing feedings to take 45 minutes. His lungs are being effected
The unexpected cost of all this was adding up and already there was no income coming in. Gas, food, lodging is pricey in Toronto and even hospital parking is $20 a day. Antony was waiting for his Parental leave to kick in which ended up taking 3 months. Sarahs cousin Kayla started a facebook fundraiser to help them and family, friends and even some people we didn't know sent in donations and oh my goodness we were so grateful! They managed to raise $4000. Antonys employer, Teppermans also did a fundraiser with employees that helped immensely. With bills at home still needing to be paid and adding the expense of Toronto with no income coming in, the funds donated kept them a float. They were able to dedicate their all to Elijah without the stress of worrying as much about money. It also helped with gas, food and lodging in London for all of his monthly follow up appoints. Without the help from others Im not sure how they would have managed.
On July 4th, Elijah was released from the hospital and into his parents care. The doctors wanted them to remain in Toronto until his follow up appointment a week later but due to the expense they asked if they could bring him home to Windsor and do his follow up appointments at the Children's Hospital in London since it was 2 hours closer to home. The doctors agreed. His first follow up appointment showed that he was healing nicely. He was on restrictions for about 10 weeks of no bathing, no picking up under arms and no tummy time. At birth he was 5lb 6oz and now he was weighing just under 5lb. We had to run out and buy him preemie clothes which he stayed in for almost another month.
Over the next few months they continued with their monthly appointments in London. He had an echo each time to check on the repair but also to keep an eye on the ASD and VSD. Doctors were hoping the holes would close on their own or at least show some progress. On their most recent appointment on October 10th... the defects were showing no sign of healing on their own. Elijah was doing ok with his weight for the time being. He was 4 months old and weighing just over 10lbs.
The holes are effecting him though. He at times is inconsolable, his feedings of only 3oz are difficult. He will sip from the bottle then arch his back and cry causing feedings to take 45 minutes. His lungs are being effected
. Doctors have stated that the VSD and ASD, if left untreated can cause heart and lung failure and in his case waiting is not an option. He will require open heart surgery to repair the defects.
Antony, as of today is again off work. Shortly after coming home from his first surgery, Sarah was diagnosed with post partum depression and is now on medication for it. Having twins in itself is a stresser but adding the health issues it became to much. Antony had returned to work about a month ago and her trying to do it mostly on her own with a 4yr old and two babies, with one of them needing round the clock care has taken a toll.
Antony will be calling Unemployment to see what his options are but even if he can get it, its less than half of your wage. They still have their house bills and now another stay in To
Antony, as of today is again off work. Shortly after coming home from his first surgery, Sarah was diagnosed with post partum depression and is now on medication for it. Having twins in itself is a stresser but adding the health issues it became to much. Antony had returned to work about a month ago and her trying to do it mostly on her own with a 4yr old and two babies, with one of them needing round the clock care has taken a toll.
Antony will be calling Unemployment to see what his options are but even if he can get it, its less than half of your wage. They still have their house bills and now another stay in To
ronto. We have found out that Ronald Mc Donald House wait list is upwards of 2 weeks and they cant apply for it until the day of surgery although they will be added to a waiting list. Surgery has been booked for November 19th with preop on the 18th so they will be driving up on the 17th.
We are still trying to learn as much as we can about Congenital Heart Defects. It is all so overwhelming.
There are 18 different types of CHD.
Statistics show that every year, more and more are being born with a CHD ranging from mild to severe.
There is no cure or magic fix. It is lifelong. Yearly checkups, medications, depression, more surgeries... those are things that CHD warriors have to live with.
We have struggled with the idea of asking for help once again but at this point we see no other way. Their 4 year old son, Xander, now suffers from severe separation anxiety and there is also a change in Elijahs twin Spencer when he is separated from his family so leaving them at home is not an option. I (Grandma Jean) will also be going to Toronto as caregiver to the 2 boys while their Mommy and Daddy are at the hospital with baby Elijah.
We have looked into hotels in the area that can accommodate them as cost effectively as possible while keeping them near the hospital and that is running approximately $1500 a week. Gas, food, formula, diapers etc will all be needed. On top of that, at home there are things that need to be done while they in Toronto such as having the ducts cleaned and sanitized. Sarahs father and I are doing what we can to help them as well.
We decided to start the go fund me now hoping that they will have some funds in place to make transition to Toronto less stressful. We are asking for your help to try and keep this little family together. Any donation, no matter how small will help them. And if you can not donate at this time (which we completely understand) please share to everyone and everywhere that you can think of such as facebook, twitter, Instagram and even email. Prayers and positive thoughts are also very much appreciated!
Thank you for reading and sharing baby Elijahs story <3
Facebook group for Elijah
#babyelijah #elijahsheart #heartwarrior #chdwarrior #congenitalheartdefect #onedayatatime #chdawareness
We are still trying to learn as much as we can about Congenital Heart Defects. It is all so overwhelming.
There are 18 different types of CHD.
Statistics show that every year, more and more are being born with a CHD ranging from mild to severe.
There is no cure or magic fix. It is lifelong. Yearly checkups, medications, depression, more surgeries... those are things that CHD warriors have to live with.
We have struggled with the idea of asking for help once again but at this point we see no other way. Their 4 year old son, Xander, now suffers from severe separation anxiety and there is also a change in Elijahs twin Spencer when he is separated from his family so leaving them at home is not an option. I (Grandma Jean) will also be going to Toronto as caregiver to the 2 boys while their Mommy and Daddy are at the hospital with baby Elijah.
We have looked into hotels in the area that can accommodate them as cost effectively as possible while keeping them near the hospital and that is running approximately $1500 a week. Gas, food, formula, diapers etc will all be needed. On top of that, at home there are things that need to be done while they in Toronto such as having the ducts cleaned and sanitized. Sarahs father and I are doing what we can to help them as well.
We decided to start the go fund me now hoping that they will have some funds in place to make transition to Toronto less stressful. We are asking for your help to try and keep this little family together. Any donation, no matter how small will help them. And if you can not donate at this time (which we completely understand) please share to everyone and everywhere that you can think of such as facebook, twitter, Instagram and even email. Prayers and positive thoughts are also very much appreciated!
Thank you for reading and sharing baby Elijahs story <3
Facebook group for Elijah
#babyelijah #elijahsheart #heartwarrior #chdwarrior #congenitalheartdefect #onedayatatime #chdawareness
Organizer and beneficiary
Jean Caunce Lendvai
Organizer
Windsor, ON
Antony Lewis
Beneficiary
