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On January 5th, 2021 sweet little Cooper Hamilton Johnson was born to Josh and Rachel down at the Mother Baby Center at Abott Northwestern Hospital. Josh and Rachel also have 2 beautiful little girls, Tatum (3.5) and Peyton (2), who only get to see their new baby brother over facetime.
Soon after delivery, Cooper was taken to the Children’s Cardiac ICU needing extra oxygen support, lines placed, cardiac medications started, and more testing/imaging to confirm suspected diagnoses.
Cooper was born with 2 heart conditions, both which are commonly found in kids who have Trisomy 21 (Down Syndrome), which Cooper has been diagnosed with. The first Heart condition is an atriovententricular septal defect (AVSD), which will need to be fixed around 6 months old. The second is an aortic coarctation with a transverse aortic hypoplasia, which needed to be fixed a few days after delivery.
On January 11th, Cooper went in for his first open heart surgery to fix the coarctation. Cooper’s surgery was successful, but because the doctors had concern over swelling in his chest, they had to leave his chest open after surgery. After 4 days, the doctors felt comfortable with Cooper’s progress to take him back to surgery to close up his heart. Cooper remained on the ventilator after that procedure. On January 18th Cooper was able to be weaned from the ventilator and placed on a nasal cannula, heated hi flo machine.
However, since the surgery, a number of complications have arisen. The main challenge, is that Cooper has needed to remain on high breathing support to keep his lungs working adequately. The doctors are running tests to figure out what is going on in Cooper’s lungs. He burns so much energy just trying to breathe that it makes it very difficult to gain weight. He needs to keep gaining weight in order to prepare for his upcoming surgery, but with increased work breathing and multiple delays in feeding, the process has been slow.
Most recently, on February 10th, Cooper developed an infection in his intestines (necrotizing enterocolitis or NEC), most likely caused in part from low blood flow to the gut. Praise God, they were able to catch and treat it before it got severe or required surgery.
During this time Josh and Rachel have been staying down in the cities, near the hospital, to be close to Cooper. They have been seeing their 2 daughters on the weekends, and family and friends have been very helpful watching them during the week. As it has now been a month of non-normalcy for the girls, Josh and Rachel have now decided to take turns being at home and in the cities. They have a room at the Ronald McDonald house, which allows one of them to stay close by, while the other will be at home with the girls.
As things continue to be pushed back, and the time spent at the hospital keeps increasing, a few things the Johnson Family are needing help with…
- Covering 4-5 months of Rachel’s salary, so she can focus on their 3 children
- The Johnson family vehicle is getting down to its last leg; they had been saving before having Cooper, however the priority had to change to cover other needs during pregnancy and Cooper’s hospitalization. They are needing to buy a reliable vehicle to help them get to and from the hospital, carrying 3 kids (who all need carseats), and extra luggage.
- Cooper is needing another open heart surgery in 3-5months, having a little extra in savings to help them with extra expenses at that time.
These are just a few of the main needs during the next few months that we want to address.
They do want to thank all who have helped already… the Love and generosity has already been shown by so many (family, friends, Calvary). If you have already helped, please don’t feel obligated to give again, we just wanted to provide an opportunity for others to contribute to their needs. The Johnson family wants to say thank you for…
- The Prayers
- Family and friends who have helped with the girls
- Phone calls, texts, facebook posts, and cards
- Financial help
- Sending food
Thank you!
Please continue to keep praying for Cooper, Josh and Rachel, Tatum and Peyton, and the medical staff. Your prayers are the most important thing we can ask for during this time.
God is so faithful and we know that He has been and always will be watching over the Johnson Family through every moment of this Journey
Thank you everyone! The Johnson Family is feeling the Love and support from you all.
Soon after delivery, Cooper was taken to the Children’s Cardiac ICU needing extra oxygen support, lines placed, cardiac medications started, and more testing/imaging to confirm suspected diagnoses.
Cooper was born with 2 heart conditions, both which are commonly found in kids who have Trisomy 21 (Down Syndrome), which Cooper has been diagnosed with. The first Heart condition is an atriovententricular septal defect (AVSD), which will need to be fixed around 6 months old. The second is an aortic coarctation with a transverse aortic hypoplasia, which needed to be fixed a few days after delivery.
On January 11th, Cooper went in for his first open heart surgery to fix the coarctation. Cooper’s surgery was successful, but because the doctors had concern over swelling in his chest, they had to leave his chest open after surgery. After 4 days, the doctors felt comfortable with Cooper’s progress to take him back to surgery to close up his heart. Cooper remained on the ventilator after that procedure. On January 18th Cooper was able to be weaned from the ventilator and placed on a nasal cannula, heated hi flo machine.
However, since the surgery, a number of complications have arisen. The main challenge, is that Cooper has needed to remain on high breathing support to keep his lungs working adequately. The doctors are running tests to figure out what is going on in Cooper’s lungs. He burns so much energy just trying to breathe that it makes it very difficult to gain weight. He needs to keep gaining weight in order to prepare for his upcoming surgery, but with increased work breathing and multiple delays in feeding, the process has been slow.
Most recently, on February 10th, Cooper developed an infection in his intestines (necrotizing enterocolitis or NEC), most likely caused in part from low blood flow to the gut. Praise God, they were able to catch and treat it before it got severe or required surgery.
During this time Josh and Rachel have been staying down in the cities, near the hospital, to be close to Cooper. They have been seeing their 2 daughters on the weekends, and family and friends have been very helpful watching them during the week. As it has now been a month of non-normalcy for the girls, Josh and Rachel have now decided to take turns being at home and in the cities. They have a room at the Ronald McDonald house, which allows one of them to stay close by, while the other will be at home with the girls.
As things continue to be pushed back, and the time spent at the hospital keeps increasing, a few things the Johnson Family are needing help with…
- Covering 4-5 months of Rachel’s salary, so she can focus on their 3 children
- The Johnson family vehicle is getting down to its last leg; they had been saving before having Cooper, however the priority had to change to cover other needs during pregnancy and Cooper’s hospitalization. They are needing to buy a reliable vehicle to help them get to and from the hospital, carrying 3 kids (who all need carseats), and extra luggage.
- Cooper is needing another open heart surgery in 3-5months, having a little extra in savings to help them with extra expenses at that time.
These are just a few of the main needs during the next few months that we want to address.
They do want to thank all who have helped already… the Love and generosity has already been shown by so many (family, friends, Calvary). If you have already helped, please don’t feel obligated to give again, we just wanted to provide an opportunity for others to contribute to their needs. The Johnson family wants to say thank you for…
- The Prayers
- Family and friends who have helped with the girls
- Phone calls, texts, facebook posts, and cards
- Financial help
- Sending food
Thank you!
Please continue to keep praying for Cooper, Josh and Rachel, Tatum and Peyton, and the medical staff. Your prayers are the most important thing we can ask for during this time.
God is so faithful and we know that He has been and always will be watching over the Johnson Family through every moment of this Journey
Thank you everyone! The Johnson Family is feeling the Love and support from you all.
Organizer and beneficiary
Rachel Johnson
Beneficiary