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On December 6, 2018, my twin nieces Oaklyn and Wrenley were born at just 25 weeks and one day. Oaklyn weighed 1 pound 5 ounces and Wrenley weighed just 13 ounces.
As some background, at 18 weeks pregnant, we found out that Kelsey and the twins were suffering from twin to twin transfusion syndrome (TTTS). In this situation, Wrenley was the donor (she was donating all of the nutrients to Oaklyn) and Oaklyn was the recipient receiving too many nutrients. Without immediate surgery, Wrenley would have passed from anemia and Oaklyn would have passed from excess fluids leading to organ failure. The surgery to reverse this is called laser ablation, in which stops the fluid exchange between the twins and halts/reverses the disease. Although knowing the many risks involved, we knew surgery was not an option if we wanted the twins to survive.
A short time later, we found out that this surgery led to a stage 3-4 asymmetrical brain bleed in Wrenley. Because these very rarely go away on their own, doctors recommended to my sister that it would be best to reduce the pregnancy to just Oaklyn as Wrenley was never expected to live a quality life. Doctors said she would never take a breath outside of the womb, she would be on life support her whole life, and she would never be able to walk or communicate with us. My sister refused to go against her faith and listen to the doctors and instead we prayed and prayed and prayed. Weeks later, we found out that the brain bleed had in fact gone away – my family, friends and Oaklyn and Wrenley’s support group prayed this brain bleed away. Doctors nor nurses could understand it.
Once the girls were born, we were told by nurses that babies this small typically do not survive, and not to get our hopes up. We watched their tiny, helpless bodies lay in their isolettes every single day fighting for their lives. We watched as they were intubated and couldn’t make noise, as they were poked for the many required blood transfusions, we watched as they had good days and bad days, but also we watched them grow, and begin to fit into clothes and watched their special features appear. We watched Oaklyn as she came home from the NICU after 94 days, and then we watched Wrenley get to come home after 249 days.
Before Wrenley came home though, we found out that she had pulmonary hypertension. The doctors explained it as if you hooked a water hose up to a fire hydrant. Her lungs were so under-developed that her heart was having to work super hard to pump blood to her lungs. Also, if an adult was told they had this, they wouldn’t be expected to live very long as there is no cure. But, children’s lungs regenerate until they are 7 years old so Wrenley had hope. This condition can put her into a crisis at any point if she gets too upset – while having her diaper changed, while being bathed, any type of surgery, etc. We have prayed and prayed she would grow out of this condition. She had to be intubated several times, unable to make noise. She is almost a year old now and has not much of a voice because each time she was intubated, her vocal cords were being damaged. She had to be put on steroids, receive breathing treatments, and is still on many medications including a chemotherapy drug.
We thought for a little she was getting better, but after coming home from the NICU, we realized she wasn’t getting better, but also not really getting much worse. She was in and out of the hospital consistently. She kept having spells, where her heart rate would sink, and her oxygen saturation would plummet. On October 24, she was admitted back into the PICU. They said her lungs are so bad she’s taking in small amounts of oxygen but not releasing the carbon dioxide and therefore her organs aren’t getting the oxygen they require.
On October 29, Wrenley had to get a trach put in. This will help her breathe better, allow her to thrive and hopefully give her lungs the time they need to develop.
On November 6, her heart stopped beating for two whole minutes. My family was there praying for God to give her back to us. After two minutes of chest compressions and 2 shots of adrenalin, she came back to us. She had more spells throughout the night, but is stable now. She is currently in a paralytic state, on sedatives and many other medications until her body has recovered.
I am asking for anyone to help out financially, as she will be in the hospital for a while. Money will go towards gas, lunches, and other basic necessities to help my sister and brother-in-law. If you are not able to help out financially, please help us out by praying. No donation is too small and no prayer goes unnoticed.
For regular updates, follow Oaklyn and Wrenley's Journey on Facebook.
As some background, at 18 weeks pregnant, we found out that Kelsey and the twins were suffering from twin to twin transfusion syndrome (TTTS). In this situation, Wrenley was the donor (she was donating all of the nutrients to Oaklyn) and Oaklyn was the recipient receiving too many nutrients. Without immediate surgery, Wrenley would have passed from anemia and Oaklyn would have passed from excess fluids leading to organ failure. The surgery to reverse this is called laser ablation, in which stops the fluid exchange between the twins and halts/reverses the disease. Although knowing the many risks involved, we knew surgery was not an option if we wanted the twins to survive.
A short time later, we found out that this surgery led to a stage 3-4 asymmetrical brain bleed in Wrenley. Because these very rarely go away on their own, doctors recommended to my sister that it would be best to reduce the pregnancy to just Oaklyn as Wrenley was never expected to live a quality life. Doctors said she would never take a breath outside of the womb, she would be on life support her whole life, and she would never be able to walk or communicate with us. My sister refused to go against her faith and listen to the doctors and instead we prayed and prayed and prayed. Weeks later, we found out that the brain bleed had in fact gone away – my family, friends and Oaklyn and Wrenley’s support group prayed this brain bleed away. Doctors nor nurses could understand it.
Once the girls were born, we were told by nurses that babies this small typically do not survive, and not to get our hopes up. We watched their tiny, helpless bodies lay in their isolettes every single day fighting for their lives. We watched as they were intubated and couldn’t make noise, as they were poked for the many required blood transfusions, we watched as they had good days and bad days, but also we watched them grow, and begin to fit into clothes and watched their special features appear. We watched Oaklyn as she came home from the NICU after 94 days, and then we watched Wrenley get to come home after 249 days.
Before Wrenley came home though, we found out that she had pulmonary hypertension. The doctors explained it as if you hooked a water hose up to a fire hydrant. Her lungs were so under-developed that her heart was having to work super hard to pump blood to her lungs. Also, if an adult was told they had this, they wouldn’t be expected to live very long as there is no cure. But, children’s lungs regenerate until they are 7 years old so Wrenley had hope. This condition can put her into a crisis at any point if she gets too upset – while having her diaper changed, while being bathed, any type of surgery, etc. We have prayed and prayed she would grow out of this condition. She had to be intubated several times, unable to make noise. She is almost a year old now and has not much of a voice because each time she was intubated, her vocal cords were being damaged. She had to be put on steroids, receive breathing treatments, and is still on many medications including a chemotherapy drug.
We thought for a little she was getting better, but after coming home from the NICU, we realized she wasn’t getting better, but also not really getting much worse. She was in and out of the hospital consistently. She kept having spells, where her heart rate would sink, and her oxygen saturation would plummet. On October 24, she was admitted back into the PICU. They said her lungs are so bad she’s taking in small amounts of oxygen but not releasing the carbon dioxide and therefore her organs aren’t getting the oxygen they require.
On October 29, Wrenley had to get a trach put in. This will help her breathe better, allow her to thrive and hopefully give her lungs the time they need to develop.
On November 6, her heart stopped beating for two whole minutes. My family was there praying for God to give her back to us. After two minutes of chest compressions and 2 shots of adrenalin, she came back to us. She had more spells throughout the night, but is stable now. She is currently in a paralytic state, on sedatives and many other medications until her body has recovered.
I am asking for anyone to help out financially, as she will be in the hospital for a while. Money will go towards gas, lunches, and other basic necessities to help my sister and brother-in-law. If you are not able to help out financially, please help us out by praying. No donation is too small and no prayer goes unnoticed.
For regular updates, follow Oaklyn and Wrenley's Journey on Facebook.
Organizer and beneficiary
Kelsey Hall
Beneficiary