Dear Mr. Sparks,
My pregnancy started pretty normal. All seemed well. At my 18-week appt, one of my OB's thought I was measuring small. They did an ultrasound that day. I was 18 weeks, but the US tech couldn't get a good look at the heart. She still wanted me to have one at 20 weeks. Well, they didn't schedule me an appt and it also slipped my mind.
At 22 weeks, I went back. They wanted me to have the US done at my next appt at 26 weeks. So, at 26 weeks, went in had the US. Went to the exam room had my exam. At the end my OB said to meet him in his office he needed to discuss the US with me.
My thought was, this can't be good.
He explained that Olivia had a diaphragmatic hernia and she would need surgery after birth. I needed to see a Perinatologist. That's when we started at U of M. After about 2 visits, one of the perinatologists told us her hernia was pretty severe and that she had less than a 10% chance of survival. Her stomach, intestines, part of the liver were in her chest and her kidneys were floating up. We then had many US, Non-stress tests, consults with neonatology, pediatric surgery, pediatric cardiology. Boy, was it a long pregnancy.
On August 31,2002, Olivia was born at U of M. She was 5lbs 13oz. Which was bigger than we expected. She was immediately taken into the NICU and intubated. She was placed on an Osillating ventilator.
She was born around 5 pm. We were not able to see her until 11pm. By morning time, her CO2 levels were up. The oscillating ventilator wasn't working, She needed ECMO. They had difficulty getting her on ECMO because of her size. One cannula was put in the carotid artery and her vein was too small..they had to open her chest and put the other cannula into her heart. This was weird, too. I saw her x-ray and she had two hemi vertebrae and only 10 ribs. They did genetic testing to see if she had any genetic defects. That came back normal.
Olivia, was puffy due to all the fluids they gave her during her first surgery. And they were watching her for bleeding because of the blood thinner. Now it was a waiting game. We were waiting to see if she was going to be able to come off of ECMO before they repair her diaphragm. After 2 weeks and no luck at trialing off of ECMO, they did her surgery on ECMO. This is when they discovered she had no left diaphragm. They used a gortex patch to repair the diaphragm and the surgery was finished. Now we again had to worry about bleeding and wait for her to recover from surgery and see where things go. Bleeding was a big issue so they slowed down on the blood thinner to decrease the bleeding. She ended up with a blood clot near her chest tube site. They wanted to surgically remove the blood clot. We decided to go ahead with that. The day that surgery was going to take place. Olivia didn't look so good. Her fingers and toes were bluish. We new that surgery was not going to happen that day. We called in our family and we all visited her all day.
We finally spoke to the surgeons and he agreed that surgery would be futile. So that night, we held her for the first time. She was 20 days old. We had to be very careful for she was still on ECMO. Then they disconnected her and we took her to a "nesting room". Chuck and I held her for a long time. Her heart stayed beating for about 20 mins.
It has taken me 5 years, but finally here it is. The story of my daughter, Olivia.
After 5 yrs, all the memories get smooshed together. It was a very long 20 days, with many ups and downs. We are happy that we had those 20 days, but wish we had more days with her. We still miss her everyday.
Sincerely,
Olivia's mom, Kimberly Richards (MI, USA)
My pregnancy started pretty normal. All seemed well. At my 18-week appt, one of my OB's thought I was measuring small. They did an ultrasound that day. I was 18 weeks, but the US tech couldn't get a good look at the heart. She still wanted me to have one at 20 weeks. Well, they didn't schedule me an appt and it also slipped my mind.
At 22 weeks, I went back. They wanted me to have the US done at my next appt at 26 weeks. So, at 26 weeks, went in had the US. Went to the exam room had my exam. At the end my OB said to meet him in his office he needed to discuss the US with me.
My thought was, this can't be good.
He explained that Olivia had a diaphragmatic hernia and she would need surgery after birth. I needed to see a Perinatologist. That's when we started at U of M. After about 2 visits, one of the perinatologists told us her hernia was pretty severe and that she had less than a 10% chance of survival. Her stomach, intestines, part of the liver were in her chest and her kidneys were floating up. We then had many US, Non-stress tests, consults with neonatology, pediatric surgery, pediatric cardiology. Boy, was it a long pregnancy.
On August 31,2002, Olivia was born at U of M. She was 5lbs 13oz. Which was bigger than we expected. She was immediately taken into the NICU and intubated. She was placed on an Osillating ventilator.
She was born around 5 pm. We were not able to see her until 11pm. By morning time, her CO2 levels were up. The oscillating ventilator wasn't working, She needed ECMO. They had difficulty getting her on ECMO because of her size. One cannula was put in the carotid artery and her vein was too small..they had to open her chest and put the other cannula into her heart. This was weird, too. I saw her x-ray and she had two hemi vertebrae and only 10 ribs. They did genetic testing to see if she had any genetic defects. That came back normal.
Olivia, was puffy due to all the fluids they gave her during her first surgery. And they were watching her for bleeding because of the blood thinner. Now it was a waiting game. We were waiting to see if she was going to be able to come off of ECMO before they repair her diaphragm. After 2 weeks and no luck at trialing off of ECMO, they did her surgery on ECMO. This is when they discovered she had no left diaphragm. They used a gortex patch to repair the diaphragm and the surgery was finished. Now we again had to worry about bleeding and wait for her to recover from surgery and see where things go. Bleeding was a big issue so they slowed down on the blood thinner to decrease the bleeding. She ended up with a blood clot near her chest tube site. They wanted to surgically remove the blood clot. We decided to go ahead with that. The day that surgery was going to take place. Olivia didn't look so good. Her fingers and toes were bluish. We new that surgery was not going to happen that day. We called in our family and we all visited her all day.
We finally spoke to the surgeons and he agreed that surgery would be futile. So that night, we held her for the first time. She was 20 days old. We had to be very careful for she was still on ECMO. Then they disconnected her and we took her to a "nesting room". Chuck and I held her for a long time. Her heart stayed beating for about 20 mins.
It has taken me 5 years, but finally here it is. The story of my daughter, Olivia.
After 5 yrs, all the memories get smooshed together. It was a very long 20 days, with many ups and downs. We are happy that we had those 20 days, but wish we had more days with her. We still miss her everyday.
Sincerely,
Olivia's mom, Kimberly Richards (MI, USA)
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