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Aloha all. I was recommended by many people to start a GoFM (including the baby's pediatrician) so I'm going to give this a whirl. I don't have many contacts, so I'm just having to send this to friends in my phonebook. I am the first person to understand not being able to give... but if you could maybe share on your social media if you feel inclined to do so, it would be so much appreciated by me and my family.
My Story:
I was 8 months pregnant in Nov 2017. I had stopped feeling my baby move on a Monday night. Didn't think much of it bc all my Drs visits and exams always went well. Tues morn at work, I was feeling like this wasn't right. Long story short, ended up in hospital for emergency c-section. The Drs diagnosed the baby with Hydrops Fetalis and Chylothorax. They told me that had I waited any longer, I'd have had a stillborn.
The baby was ripped from me and immediately swept away by a team of Drs to keep him alive. The first time I got to see him was 6 hours later (fully enclosed in an incubator) and covered head to toe in tubes and wires. I saw my first born for about 5 minutes until he was having to be Medivac'd from Maui to Oahu to begin his stay in the NICU for 2.5 months.
I called Kapiolani Hospital in Oahu every 2 hours while I was bedridden and childless. I pushed myself to walk, and do what was necessary to get out of Maui Memorial, on Tues & Wed after my surgery, so I could get to Oahu to see/ meet my baby. I was released 2 agonizing days later (Thurs afternoon), and was on a flight to Oahu 3 hours after that.
I stayed with him the entire time. I couldn't bare to leave his side. He had chest tubes in him, breathing tubes, catheters, pic lines, Iv's... etc... It was absolutely horrible, to say the least. His eyes were swollen shut until Thanksgiving when he half-opened his left eye. I wasn't able to hold him until a month after birthing my child.
The Drs called him a "mystery" bc they could never seem to understand why his body went haywire ~ berserk and constantly couldn't stay stable. They would "guess" daily on how to treat this mystery baby.
By the end of Jan, the Drs finally decided to release him home to Maui with me bc he was barely doing "okay enough" that I could probably keep him alive. I was beyond ecstatic!
While performing a routine MRI, as they do with all infants as they depart from the NICU, they found a lot of hemorrhaging in his cerebellum. This would later be bc of the AV fistula in his brain.
Now my choices were to have him go thru a rare, life saving, never-performed-before surgery, which may not even work. Not only that, but the dye used to find the fistula could/would compromise his kidneys and he was considered to have Stage 4 Kidney Disease. Kidney failure was a high risk. Also, the Dr's could accidentally puncture the main artery in the leg while entering, or anywhere along the travel to the brain, causing him to become paralyzed. Lastly there was a chance the glue would not stick, or immediately dislodge either traveling to the lungs or brain causing fatality
... OR I could Not do the surgery, take him home to Maui with me, let him see the waves and feel the sunshine. Let him know he was loved for as long as he was allowed to be my earthly baby.
Nevermind. We were no longer going home. I made the unbelievably difficult decision [alone] to do the surgery. This surgery had never been performed on a infant at his age of 2 months, and never in this location of the body. ((Usually you find fistulas in the arms or legs of elderly.))
We took off from Oahu to San Fran, via Medivac, to now put my entire trust in the team of Dr's at UCSF.
On my bday (Jan 26), he was fixed-- the surgery was successful (for the time being) and on Feb 1st, both me and Baby Joel were released from the confinement of hospital walls. What an amazing bday present for mommy. That birthday will never be beat!
***********************************************
Where we are now:
He requires around-the-clock care. Feedings are every 2 to 3 hours to keep his sick kidneys hydrated. He has constant physical therapy sessions, Dr appts (in both Maui and Oahu) regularly, bi-weekly blood work draws, & needs an understandably substantial amount of 'Mommy&Me Time' to work on his severally delayed development.
He has a significant amount of hemorrhaging in the cerebellum which not only messes with his coordination, but it's taking a toll on his muscle tone. So, basically, the constant feedings end up plumping him up, to whats equivalent of a 1 year old... but the lack of muscle tone bc of the damaged cerebellum has him performing at a 3 or 4 month old's capacity. I feel like we are set up for failure. He is asked to lift twice the weight than he is realistically capable of. This seems like a joke. How are we ever suppose to hit milestones or advance?
My heart is absolutely broken. I find that I'm having to remind myself to just keep breathing. I've never understood when someone found it "hard to breathe". Totally get it now! I do everything I can to stay positive, kind, & sane, but I'm not sure what to do anymore. This is completely insane. The Drs bills, special formula, Meds, copays, my expenses that racked up from being off-island and away from home to stay with my One&Only while he was going thru a really rough start to what is suppose to be magical & wonderful beginning ... etc... all have me spread very thin. I'm on the verge of complete exhaust. I'm trying to keep my head above water with 2 cynderblocks tied to my feet.
If you read this & can help me, I'd be forever grateful (which goes without being said). You have the chance to change my world and give Baby Joel a chance to live another day. He is 8 months old now (July 2018) and he may be disabled for the rest of his life. Our journey will never be over either. The AV fistula will never be fixed 100. It always has a chance to burst and implode at any moment.
I try not to get too attached to him, to possibly avoid complete mental devastation if something was to happen to him... but this is an unrealistic and impossible task. I have had to disconnect from all social media outlets bc everybody else's complaints/problems of their healthy child are my dream to have. While most mothers worry about their child's nutrition or common colds they may acquire, I wake up every single morning prepping myself in case he is not breathing bc his AV fistula gave out from the pressure of my growing boy. I'm thinking that this is now my everyday constant norm/ worry going onward in motherhood.
Ironically, this is the type of work I did/do. I worked with autistic/ developmentally disabled children as a Paraprofessional in schools, and took a second job as a Registered Behavioral Technician to help these kiddos in a home/ community setting when school was over for the day. Now I may have one of these children myself.
I keep telling myself ...
"he was given to me for a reason. I will take care of him better than anybody else. I am meant to be his mother. Nobody else will work as hard as I work for this little boy"
... now I just gotta buy {believe} it.
I feel like I'm on the verge of losing everything... especially my life (which is my child). I ask many "what would you do to get through this and survive?". I have received No answers. So, I guess I'm trying this GoFM thing & reaching out for a savior[s] who can help me in my worst time of need. All donations will go towards his medications he needs daily, special formula, copays for the many appointments scheduled from now until forever, possibly. The insane hospital stay bill that could pop up at anytime. Future procedures he may have to undergo.
Basically anything that will help Joelito survive.
If you have a FB [or something similar] and feel like sharing this, I'd appreciate it. Thank you.
If not, no worries. Just know this is currently my situation, and a prayer *here or there* for me and Baby Joelito is worth more than you could ever imagine.
Mahalo in advance for sharing, contributing, and/or for even just taking a moment out of your life to read this random person's struggle.
We all have difficult paths to travel. This is currently mine.
<3
My Story:
I was 8 months pregnant in Nov 2017. I had stopped feeling my baby move on a Monday night. Didn't think much of it bc all my Drs visits and exams always went well. Tues morn at work, I was feeling like this wasn't right. Long story short, ended up in hospital for emergency c-section. The Drs diagnosed the baby with Hydrops Fetalis and Chylothorax. They told me that had I waited any longer, I'd have had a stillborn.
The baby was ripped from me and immediately swept away by a team of Drs to keep him alive. The first time I got to see him was 6 hours later (fully enclosed in an incubator) and covered head to toe in tubes and wires. I saw my first born for about 5 minutes until he was having to be Medivac'd from Maui to Oahu to begin his stay in the NICU for 2.5 months.
I called Kapiolani Hospital in Oahu every 2 hours while I was bedridden and childless. I pushed myself to walk, and do what was necessary to get out of Maui Memorial, on Tues & Wed after my surgery, so I could get to Oahu to see/ meet my baby. I was released 2 agonizing days later (Thurs afternoon), and was on a flight to Oahu 3 hours after that.
I stayed with him the entire time. I couldn't bare to leave his side. He had chest tubes in him, breathing tubes, catheters, pic lines, Iv's... etc... It was absolutely horrible, to say the least. His eyes were swollen shut until Thanksgiving when he half-opened his left eye. I wasn't able to hold him until a month after birthing my child.
The Drs called him a "mystery" bc they could never seem to understand why his body went haywire ~ berserk and constantly couldn't stay stable. They would "guess" daily on how to treat this mystery baby.
By the end of Jan, the Drs finally decided to release him home to Maui with me bc he was barely doing "okay enough" that I could probably keep him alive. I was beyond ecstatic!
While performing a routine MRI, as they do with all infants as they depart from the NICU, they found a lot of hemorrhaging in his cerebellum. This would later be bc of the AV fistula in his brain.
Now my choices were to have him go thru a rare, life saving, never-performed-before surgery, which may not even work. Not only that, but the dye used to find the fistula could/would compromise his kidneys and he was considered to have Stage 4 Kidney Disease. Kidney failure was a high risk. Also, the Dr's could accidentally puncture the main artery in the leg while entering, or anywhere along the travel to the brain, causing him to become paralyzed. Lastly there was a chance the glue would not stick, or immediately dislodge either traveling to the lungs or brain causing fatality
... OR I could Not do the surgery, take him home to Maui with me, let him see the waves and feel the sunshine. Let him know he was loved for as long as he was allowed to be my earthly baby.
Nevermind. We were no longer going home. I made the unbelievably difficult decision [alone] to do the surgery. This surgery had never been performed on a infant at his age of 2 months, and never in this location of the body. ((Usually you find fistulas in the arms or legs of elderly.))
We took off from Oahu to San Fran, via Medivac, to now put my entire trust in the team of Dr's at UCSF.
On my bday (Jan 26), he was fixed-- the surgery was successful (for the time being) and on Feb 1st, both me and Baby Joel were released from the confinement of hospital walls. What an amazing bday present for mommy. That birthday will never be beat!
***********************************************
Where we are now:
He requires around-the-clock care. Feedings are every 2 to 3 hours to keep his sick kidneys hydrated. He has constant physical therapy sessions, Dr appts (in both Maui and Oahu) regularly, bi-weekly blood work draws, & needs an understandably substantial amount of 'Mommy&Me Time' to work on his severally delayed development.
He has a significant amount of hemorrhaging in the cerebellum which not only messes with his coordination, but it's taking a toll on his muscle tone. So, basically, the constant feedings end up plumping him up, to whats equivalent of a 1 year old... but the lack of muscle tone bc of the damaged cerebellum has him performing at a 3 or 4 month old's capacity. I feel like we are set up for failure. He is asked to lift twice the weight than he is realistically capable of. This seems like a joke. How are we ever suppose to hit milestones or advance?
My heart is absolutely broken. I find that I'm having to remind myself to just keep breathing. I've never understood when someone found it "hard to breathe". Totally get it now! I do everything I can to stay positive, kind, & sane, but I'm not sure what to do anymore. This is completely insane. The Drs bills, special formula, Meds, copays, my expenses that racked up from being off-island and away from home to stay with my One&Only while he was going thru a really rough start to what is suppose to be magical & wonderful beginning ... etc... all have me spread very thin. I'm on the verge of complete exhaust. I'm trying to keep my head above water with 2 cynderblocks tied to my feet.
If you read this & can help me, I'd be forever grateful (which goes without being said). You have the chance to change my world and give Baby Joel a chance to live another day. He is 8 months old now (July 2018) and he may be disabled for the rest of his life. Our journey will never be over either. The AV fistula will never be fixed 100. It always has a chance to burst and implode at any moment.
I try not to get too attached to him, to possibly avoid complete mental devastation if something was to happen to him... but this is an unrealistic and impossible task. I have had to disconnect from all social media outlets bc everybody else's complaints/problems of their healthy child are my dream to have. While most mothers worry about their child's nutrition or common colds they may acquire, I wake up every single morning prepping myself in case he is not breathing bc his AV fistula gave out from the pressure of my growing boy. I'm thinking that this is now my everyday constant norm/ worry going onward in motherhood.
Ironically, this is the type of work I did/do. I worked with autistic/ developmentally disabled children as a Paraprofessional in schools, and took a second job as a Registered Behavioral Technician to help these kiddos in a home/ community setting when school was over for the day. Now I may have one of these children myself.
I keep telling myself ...
"he was given to me for a reason. I will take care of him better than anybody else. I am meant to be his mother. Nobody else will work as hard as I work for this little boy"
... now I just gotta buy {believe} it.
I feel like I'm on the verge of losing everything... especially my life (which is my child). I ask many "what would you do to get through this and survive?". I have received No answers. So, I guess I'm trying this GoFM thing & reaching out for a savior[s] who can help me in my worst time of need. All donations will go towards his medications he needs daily, special formula, copays for the many appointments scheduled from now until forever, possibly. The insane hospital stay bill that could pop up at anytime. Future procedures he may have to undergo.
Basically anything that will help Joelito survive.
If you have a FB [or something similar] and feel like sharing this, I'd appreciate it. Thank you.
If not, no worries. Just know this is currently my situation, and a prayer *here or there* for me and Baby Joelito is worth more than you could ever imagine.
Mahalo in advance for sharing, contributing, and/or for even just taking a moment out of your life to read this random person's struggle.
We all have difficult paths to travel. This is currently mine.
<3