Caring for Kaz
Donation protected
I hate to admit that I need help. I feel like there are so many people in this world that need assistance, so how can I even think of asking? But we've reached a point where I don't know what to do anymore. I'm hoping that through this campaign, I'll be able to focus on my sick baby and my family. Let me explain.
When I became pregnant with my second child, I immediately started planning. I saved all my vacation and sick time. I was able to plan ahead and figured that I would be covered for my unpaid maternity leave minus 2 weeks, so I slowly put enough money aside to cover those two weeks. Then Kaz came into the world sick and I had to take a little extra time. But we figured it out. Our baby was slowly getting better and he was home with us. His first 3 months were a roller coaster.
I should have known something was up when he was born during a hospital wide fire alarm. He came out fast and furious... and quiet.
Despite being huge and early but considered full term, Kaz was unable to breath on his own. I held him for the briefest of moments and then they took him away. I went from a room full of people to being completely alone in the worst pain both physically and emotionally that i had ever experienced. It felt like my heart stopped beating.
Kaz was fully sedated and intubated. He got a large transfer team and was put on an ambulance at 2:30am and sent to Hartford Hospital NICU while we stayed behind. There wasnt enough room for us to ride with him. I was transferred separately and my husband John drove behind.
For 8 days Kaz had machines doing everything for him. He was intubated, sedated, had a catheter and 3 different I.V.s. He was not allowed to be fed and instead recieved nutrients through a central line placed in his umbilical stub. He went from 9lbs 13.5 oz to 8lbs 9oz. We couldn't even touch him and risk stressing him out more.
For still unknown reasons, Kaz's body was trying to cut off blood flow to his lungs and instead send it to a placenta that was no longer there for oxygenation. His lungs were wet and partially collapsed and there was really nothing to be done but support him with machines and wait to see if he would do it on his own.
When he was just 9 days old, I developed mastitis. Due to 6 known antibiotic allergies, I was admitted to Midstate and seen by Infectious Disease Specialists to decide how to best treat me. Spoiler alert... I'm now allergic to 8 antibiotics.
But I got through it, 3 days in a separate hospital from my sick newborn. I was discharged and went right over to see Kaz. I was finally able to hold him. I could see his little face, his eyes were open. I got to nurse him for the first time and then held him while he slept.
He was a little jaundiced so he went under the lamps. Those didn't help so he was given medication. That didn't help so we had an ultrasound. The ultrasound showed a healthy liver but also an under formed, underfunctioning right kidney and a large unexplained mass under his left kidney. He then had an MRI. They found a second lump and realized the kidney issue was more severe than originally assessed.
Suddenly I was introduced to a Urologist, a Nephrologist, a Surgeon and a Hematology Oncologist. At just shy of 2 weeks old, my baby went in for surgery to remove one of the masses for pathology. For 2 long weeks after that I waited to find out if my little guy who had overcome so much already would have to overcome cancer.
After exactly 3 weeks, Kaz was discharged. A week after that we were told the masses are benign. His billieruben and liver enzymes have slowly leveled out. I was confident that his long medical journey was coming to an end.
One week ago I brought Kaz to the GI. I was excited to see how much he had grown. Hes been hitting most of his milestones and he was finally starting to get little butt cheeks. Instead I was told that he is 'failure to thrive'. His BMI is less than 1st percentile. His weight is 2nd percentile and his head circumference is 4th percentile. He hadn't grown at all in 6 weeks. The GI looked me in the eye and told me "one illness could make him float away."
Then he started coughing and acting lethargic. I became aware that he had been exposed to RSV. I brought him to the hospital and sure enough he has it. As if this weren't terrifying enough, he was also diagnosed with a UTI. A UTI that he was already on antibiotics to attempt to prevent from happeneing since his kidney is already weak. His bloodwork came back bad. His electrolytes are all out of whack. His sodium is too low which could cause seizures or cardiac episodes.
During all of this, Kaz lost 3 oz that he didn't have to loose. He developed terrible diarrhea and is barely eating. He is now being tube fed since he can barely stay awake. He has been labeled "severely malnourished". Despite my cutting all dairy/soy/nut/egg out of my diet to be able to breastfeed him, his allergic colitis is out of control. He cant process my milk and is now on prescription amino acid based formula. Formula that he hates and refuses to drink.
I dont know how this ends. But I do know that tomorrow morning I am going to wake up and drive to work. Not because I want to, but because I cant afford to take unpaid time off. There are amazing nurses and doctors that will care for my child in my absence. He is 3 months old and will never remember that I had to leave him so I could work to provide for our family and pay our bills. But maybe, just maybe there is a way that we can raise just enough money so I can stay here and hold my sick baby.
When I became pregnant with my second child, I immediately started planning. I saved all my vacation and sick time. I was able to plan ahead and figured that I would be covered for my unpaid maternity leave minus 2 weeks, so I slowly put enough money aside to cover those two weeks. Then Kaz came into the world sick and I had to take a little extra time. But we figured it out. Our baby was slowly getting better and he was home with us. His first 3 months were a roller coaster.
I should have known something was up when he was born during a hospital wide fire alarm. He came out fast and furious... and quiet.
Despite being huge and early but considered full term, Kaz was unable to breath on his own. I held him for the briefest of moments and then they took him away. I went from a room full of people to being completely alone in the worst pain both physically and emotionally that i had ever experienced. It felt like my heart stopped beating.
Kaz was fully sedated and intubated. He got a large transfer team and was put on an ambulance at 2:30am and sent to Hartford Hospital NICU while we stayed behind. There wasnt enough room for us to ride with him. I was transferred separately and my husband John drove behind.
For 8 days Kaz had machines doing everything for him. He was intubated, sedated, had a catheter and 3 different I.V.s. He was not allowed to be fed and instead recieved nutrients through a central line placed in his umbilical stub. He went from 9lbs 13.5 oz to 8lbs 9oz. We couldn't even touch him and risk stressing him out more.
For still unknown reasons, Kaz's body was trying to cut off blood flow to his lungs and instead send it to a placenta that was no longer there for oxygenation. His lungs were wet and partially collapsed and there was really nothing to be done but support him with machines and wait to see if he would do it on his own.
When he was just 9 days old, I developed mastitis. Due to 6 known antibiotic allergies, I was admitted to Midstate and seen by Infectious Disease Specialists to decide how to best treat me. Spoiler alert... I'm now allergic to 8 antibiotics.
But I got through it, 3 days in a separate hospital from my sick newborn. I was discharged and went right over to see Kaz. I was finally able to hold him. I could see his little face, his eyes were open. I got to nurse him for the first time and then held him while he slept.
He was a little jaundiced so he went under the lamps. Those didn't help so he was given medication. That didn't help so we had an ultrasound. The ultrasound showed a healthy liver but also an under formed, underfunctioning right kidney and a large unexplained mass under his left kidney. He then had an MRI. They found a second lump and realized the kidney issue was more severe than originally assessed.
Suddenly I was introduced to a Urologist, a Nephrologist, a Surgeon and a Hematology Oncologist. At just shy of 2 weeks old, my baby went in for surgery to remove one of the masses for pathology. For 2 long weeks after that I waited to find out if my little guy who had overcome so much already would have to overcome cancer.
After exactly 3 weeks, Kaz was discharged. A week after that we were told the masses are benign. His billieruben and liver enzymes have slowly leveled out. I was confident that his long medical journey was coming to an end.
One week ago I brought Kaz to the GI. I was excited to see how much he had grown. Hes been hitting most of his milestones and he was finally starting to get little butt cheeks. Instead I was told that he is 'failure to thrive'. His BMI is less than 1st percentile. His weight is 2nd percentile and his head circumference is 4th percentile. He hadn't grown at all in 6 weeks. The GI looked me in the eye and told me "one illness could make him float away."
Then he started coughing and acting lethargic. I became aware that he had been exposed to RSV. I brought him to the hospital and sure enough he has it. As if this weren't terrifying enough, he was also diagnosed with a UTI. A UTI that he was already on antibiotics to attempt to prevent from happeneing since his kidney is already weak. His bloodwork came back bad. His electrolytes are all out of whack. His sodium is too low which could cause seizures or cardiac episodes.
During all of this, Kaz lost 3 oz that he didn't have to loose. He developed terrible diarrhea and is barely eating. He is now being tube fed since he can barely stay awake. He has been labeled "severely malnourished". Despite my cutting all dairy/soy/nut/egg out of my diet to be able to breastfeed him, his allergic colitis is out of control. He cant process my milk and is now on prescription amino acid based formula. Formula that he hates and refuses to drink.
I dont know how this ends. But I do know that tomorrow morning I am going to wake up and drive to work. Not because I want to, but because I cant afford to take unpaid time off. There are amazing nurses and doctors that will care for my child in my absence. He is 3 months old and will never remember that I had to leave him so I could work to provide for our family and pay our bills. But maybe, just maybe there is a way that we can raise just enough money so I can stay here and hold my sick baby.
Organizer
Emily Jenkins
Organizer
North Haven, CT