Because there is hope
Donation protected
Jeremiah was born on March 27 of 2016. That was the most waited day of our lives and the most-scary one...
I had a healthy pregnancy everything was fine, but all of that changed the day my contractions started and I was induce, after having a terribly delivery our little angel was born, as a mom after giving birth all I wanted to hear was my baby cry for the first time. He was not breathing the doctors immediately give him CPR around 20 or more minutes, he didn't cry and was not responding, after a while he responded but needed to be translated to another hospital to the NICU area.
My husband went with him, he recalls that was the longest and saddest ride he ever had... I felt miserable in the hospital, confused and heart broken, I had to stayed in the hospital without having my baby next to me...
Jeremiah got intubated 4 times and took the tube out 2 times in the ambulance and finally arrived breathing on his own.
He spent the first night of his life in the hospital by his self, my husband was not allowed to stay longer but they allowed both of us to see the baby the following day.
The second day my husband and I went to visit Jeremiah and that was the first day I saw my baby... it wasn't supposed to be like that! I saw my baby with all kind of wires connected to his little body, I couldn't believe that precious baby was inside my belly and I couldn't believe he was still alive! From that moment I knew that I have a warrior, we decided to name him Robert Jeremiah.
Because of lack of oxygen, the doctor explained to me that Jeremiah suffered hypoxic-ischemic.
We were shock! we were told that Jeremiah may not live but if he made it, he would have a significant brain injury and that his body may not function properly... (We were terrified at this point.)
That same day we found out his liver, heart, kidneys were all functioning well and that was a lot of good news for us. Despite of the sad moment we were going through! I had the chance to see him for 30 minutes and share another 30 minutes with his dad!
That was it!! Only 30 minutes or less every day and come back the next day.
We felt an empty feeling every time we had to leave, both of us were confused and that bitter sweet feeling of what will happen tomorrow.
The next day we went to see Jeremiah with our heart bursting out of our chats and waiting for our turn to let us inside to see the baby...
My husband went first I saw his sad face, I was second...
The doctor explained to us that Jeremiah had brain internal bleeding due to his brain swell, he was not doing good, he had a seizure and fever... he is not responding well and the nurses around us did not give us much hope. At that moment he was connected to a mechanic ventilation and had nasogastric tube to pass all liquids, he didn't have the opportunity to get cooling treatment due to hospital low equipment.
I studied psychology and completely understood what the doctor was telling us... I imagine the worst case scenario, I felt I was going to lose him and there was nothing I could do for him.
My husband almost pass out and we were nothing but heartbroken... I felt that was the end! I hug my hubby and encourage him to pray despite we just wanted to die ...
We prayed!! The most honest pray, from the depths of our hearts asking God for a miracle and to let us keep our precious child... I felt death in my heart but a voice told me: he will live!
After 4 days... Jeremiah was not there when we went to visit him!!!!
They took him early in the morning to medium care unit, he did so well.
Jeremiah started improving and eventually he was moved to minimum care unit and was there a total of 3 weeks in the hospital.
I want to tell you all that the day we took Jeremiah home was the most blessed and terrifying day of our lives, we have a warrior and a miracle, we have a compromise and continuous challenge!!
With all our ups and downs, Jeremiah was diagnosed with West Syndrome at 4 months but went undiagnosed until 6 months which is infantile spasms and seizures.
He has refractory epilepsy, it means that medicine isn't bringing seizures under control. A condition called by some other name, such as uncontrolled, intractable, or drug-resistant epilepsy.
He develop microcephaly at 4 months old and his MRI showed his brain has severe atrophy and HIE grade 3 with global delay, also almost all his tissue is damaged.
He used N tube for about for 4 months and due to aspirating slowly and a swallow failed test the gastroenterologist suggested along with neurology and other doctors that he must needed a feeding tube for hydration and feeding and got the tube at 10 months old.
He can have baby juices, blended food, all vegetables, meat except sea food only fish and baby food all by feeding tube.
He was not taking the proper medication, Jeremiah regressed on his progress many times until a good neurologist changed his medication to Sabril (vigabatrin) that's the main medication that can stop mostly his seizures and it can only be found in few countries in the whole world as well is the most expensive treatment he is taking right now. Any virus, health problem, infections can trigger his seizures so we need to be very careful with him and making sure he is in good health.
These are the meds Jeremiah is taking daily for seizures and spasm:
Valproic acid
1 or 0.5ml
Keppra
4 or 4ml
Sabril
1 or 2 pills
Also for reflux he is taking Nexium, Ranitidine and unamol daily twice a day.
For vitamins he is on Omega 3, Kaler and vitamin C.
Needless to say having a special needs baby is hard and among those medicines he would need much more, like doctor’s appointment, ER hospitalizations, therapy, clothes, milk, pampers etc.
Our little hero is the most beautiful little person we have in our lives!! We love him to death and all his conditions and diagnosis, even his slow development and not reaching mile stones, we continue day by day giving him the most of us. As parents we are proud of him and continue to encourage him with all our love, we see lots of obstacles but also know there is hope.
As a special need mom I have no idea where my strength comes from but there is no doubt its coming from God, He’s the only one keeping my husband and I going on without giving up, we get worried, exhausted, many restless nights, but when we see our child overcome those obstacles that does not have a price!
Keeping him health has been a huge battle, last few months he’s been fighting all kind of infections, virus and bacteria’s, because his little body is fragile and immune system is weaker because of his condition.
Thanks to all our family and the church and all of our friends that love Jeremiah!
God and all those prayers is what keeps us going in our journey!
All I can say I know what a warrior looks like and that’s our most precious son.
Mom and dad.
I had a healthy pregnancy everything was fine, but all of that changed the day my contractions started and I was induce, after having a terribly delivery our little angel was born, as a mom after giving birth all I wanted to hear was my baby cry for the first time. He was not breathing the doctors immediately give him CPR around 20 or more minutes, he didn't cry and was not responding, after a while he responded but needed to be translated to another hospital to the NICU area.
My husband went with him, he recalls that was the longest and saddest ride he ever had... I felt miserable in the hospital, confused and heart broken, I had to stayed in the hospital without having my baby next to me...
Jeremiah got intubated 4 times and took the tube out 2 times in the ambulance and finally arrived breathing on his own.
He spent the first night of his life in the hospital by his self, my husband was not allowed to stay longer but they allowed both of us to see the baby the following day.
The second day my husband and I went to visit Jeremiah and that was the first day I saw my baby... it wasn't supposed to be like that! I saw my baby with all kind of wires connected to his little body, I couldn't believe that precious baby was inside my belly and I couldn't believe he was still alive! From that moment I knew that I have a warrior, we decided to name him Robert Jeremiah.
Because of lack of oxygen, the doctor explained to me that Jeremiah suffered hypoxic-ischemic.
We were shock! we were told that Jeremiah may not live but if he made it, he would have a significant brain injury and that his body may not function properly... (We were terrified at this point.)
That same day we found out his liver, heart, kidneys were all functioning well and that was a lot of good news for us. Despite of the sad moment we were going through! I had the chance to see him for 30 minutes and share another 30 minutes with his dad!
That was it!! Only 30 minutes or less every day and come back the next day.
We felt an empty feeling every time we had to leave, both of us were confused and that bitter sweet feeling of what will happen tomorrow.
The next day we went to see Jeremiah with our heart bursting out of our chats and waiting for our turn to let us inside to see the baby...
My husband went first I saw his sad face, I was second...
The doctor explained to us that Jeremiah had brain internal bleeding due to his brain swell, he was not doing good, he had a seizure and fever... he is not responding well and the nurses around us did not give us much hope. At that moment he was connected to a mechanic ventilation and had nasogastric tube to pass all liquids, he didn't have the opportunity to get cooling treatment due to hospital low equipment.
I studied psychology and completely understood what the doctor was telling us... I imagine the worst case scenario, I felt I was going to lose him and there was nothing I could do for him.
My husband almost pass out and we were nothing but heartbroken... I felt that was the end! I hug my hubby and encourage him to pray despite we just wanted to die ...
We prayed!! The most honest pray, from the depths of our hearts asking God for a miracle and to let us keep our precious child... I felt death in my heart but a voice told me: he will live!
After 4 days... Jeremiah was not there when we went to visit him!!!!
They took him early in the morning to medium care unit, he did so well.
Jeremiah started improving and eventually he was moved to minimum care unit and was there a total of 3 weeks in the hospital.
I want to tell you all that the day we took Jeremiah home was the most blessed and terrifying day of our lives, we have a warrior and a miracle, we have a compromise and continuous challenge!!
With all our ups and downs, Jeremiah was diagnosed with West Syndrome at 4 months but went undiagnosed until 6 months which is infantile spasms and seizures.
He has refractory epilepsy, it means that medicine isn't bringing seizures under control. A condition called by some other name, such as uncontrolled, intractable, or drug-resistant epilepsy.
He develop microcephaly at 4 months old and his MRI showed his brain has severe atrophy and HIE grade 3 with global delay, also almost all his tissue is damaged.
He used N tube for about for 4 months and due to aspirating slowly and a swallow failed test the gastroenterologist suggested along with neurology and other doctors that he must needed a feeding tube for hydration and feeding and got the tube at 10 months old.
He can have baby juices, blended food, all vegetables, meat except sea food only fish and baby food all by feeding tube.
He was not taking the proper medication, Jeremiah regressed on his progress many times until a good neurologist changed his medication to Sabril (vigabatrin) that's the main medication that can stop mostly his seizures and it can only be found in few countries in the whole world as well is the most expensive treatment he is taking right now. Any virus, health problem, infections can trigger his seizures so we need to be very careful with him and making sure he is in good health.
These are the meds Jeremiah is taking daily for seizures and spasm:
Valproic acid
1 or 0.5ml
Keppra
4 or 4ml
Sabril
1 or 2 pills
Also for reflux he is taking Nexium, Ranitidine and unamol daily twice a day.
For vitamins he is on Omega 3, Kaler and vitamin C.
Needless to say having a special needs baby is hard and among those medicines he would need much more, like doctor’s appointment, ER hospitalizations, therapy, clothes, milk, pampers etc.
Our little hero is the most beautiful little person we have in our lives!! We love him to death and all his conditions and diagnosis, even his slow development and not reaching mile stones, we continue day by day giving him the most of us. As parents we are proud of him and continue to encourage him with all our love, we see lots of obstacles but also know there is hope.
As a special need mom I have no idea where my strength comes from but there is no doubt its coming from God, He’s the only one keeping my husband and I going on without giving up, we get worried, exhausted, many restless nights, but when we see our child overcome those obstacles that does not have a price!
Keeping him health has been a huge battle, last few months he’s been fighting all kind of infections, virus and bacteria’s, because his little body is fragile and immune system is weaker because of his condition.
Thanks to all our family and the church and all of our friends that love Jeremiah!
God and all those prayers is what keeps us going in our journey!
All I can say I know what a warrior looks like and that’s our most precious son.
Mom and dad.
Organizer and beneficiary
Johanna Hedman-Arch
Organizer
Lancaster, OH
James Arch
Beneficiary
