- R
- K
11/8/17 UPDATE:
A complication of his last surgery was that his heart rate is slow, about 50 bpm, and it isn't firing as well as it could/is needed to. We found out a few weeks ago that he has "heart block"...and had him on a take home monitor for a few days. We were pending those results to see WHEN we needed a pacemaker...thinking it could be months.
Well, Cedar's first ever cold led to fluid in his lungs and I found myself with our Dr. Cotts in Pediatric Cardiology at Mott's yesterday. And, instead of a few weeks or months, Cedar will have a pacemaker put in tomorrow morning. Ouch. Sigh. #$%.
It'll be a two lead pacemaker, on the outside of his little heart, and they plan to go in from the side of his ribs instead of sternum...to save the number of times they can go in the front, as we will still need a valve repair surgery sometime soon (years? who knows!).
What does this mean? Our sweet little baby will likely always have a pacemaker. They have to be changed, surgically, or batteries changed, every few years. As kids, maybe that means every 5 years...as adults, more like 8-10. My heart absolutely breaks with the certainty of more surgeries. And I hold that heartbreak with the gratitude and joy that is the fact that Cedar will live and will have a great life and that there IS SOMETHING we can "do".
There are so many thoughts that run amok. And as my dear teacher, Stephen, was describing to Connor and I last night...being with it, in the hospital means having your head down and completely mired in it all...and every now and then maybe one of you can peek up and out of it and see a wider view...and keep trying to do that. Ride the waves. Hold on. And screw that being OK bullshit. I'm not okay! And I'm not - not okay. Strength? Grace? Courage? Requirements. Being in the moment, yet not in the moment...because sometimes you have to ride through it to be with it at all.
THANK YOU to everyone who came out for Night of Grief & Mystery Concert ~ Ypsilanti last night. I'm so glad you were there. What an intense, beautiful thing.
I am deeply grateful for this life and for everything we've been through and are in, and for everything after this moment. I love. So much love. That's all I've got.
I'm becoming very good at deep, abiding love. Strong love and faith. Loving with, despite of, in and through it all.
~~~
Emily and Connor and Cedar live in Ann Arbor Michigan. Cedar was born on April 24th and it was soon discovered that he had multiple heart defects/heart disease. He had a standard "AVSD" - atrial ventricular septal defect, but also, his right atrium wall was small and pushed over to the right side and was blocking blood flow to his lungs, and his heart was basically functioning as a three chamber heart. Besides that, Cedar was an extremely healthy baby boy! We were so grateful.
We were rushed from St. Joe's hospital to the NICU at Mott Children's hospital and placed in the care of the exceptional pediatric cardiology team there.
Emily's (my) original plan was to stop my stressful corporate job and take care of Cedar and fully launch my own business adventures in the realms of intimacy, grief and relationship coaching. But, we were lucky to have access to health insurance, and needed to keep it through my job for Cedar's surgeries. We went home after 4 days in the NICU and kept an eye on Cedar, with weekly echocardiograms and x-rays to monitor his blood flow and lack of oxygen in his body, and had to do open heart surgery when he was just one month old. The recovery time was 8 days in the hospital, just one month after I gave birth to him. It was stressful and scary and we were so supported by our friends and family and the great staff at Mott's!
The surgery was very successful, and, we had to have another surgery when Cedar was just four months old. We were in the hospital for just 6 days. This time, the surgeons removed the pulmonary band, and inserted two small patches of Gortex to fix the hole in his heart. We also learned that Cedar's mitral valve was incredibly unique and has 5 flaps instead of the normal 2! The surgeon spent about an hour working just on this valve! Because of this unique heart architecture, he'll need another surgery...maybe a few years from now.
One of the biggest stressors at this time has been our medical bills and how we're going to pay for everything. I'm working full time, from home, in order to keep the insurance, and, we have about $400,000 in claims right now. I am guessing we will hit a half million dollars in medical claims by the end of the year.
In between Cedar's two heart surgeries, I (Emily) had to have a parotid gland tumor removed. I had been putting it off for about two years. They say the only small surgery is the one that happens to other people...and while I thought this surgery would be tiny, as it was just one overnight in the hospital...it came with about a month and a half of recovery from complications. I have been seeing the ENT team at Henry Ford and U of M, weekly, to drain the fluid build up that my body put in place of the tumor. I have also been wearing a headwrap 24/7 until just yesterday. Sigh. It's been extremely hard to work full time, breastfeed full time, take care of my baby, myself and my family.
While we were at the Orphan Wisdom School last weekend, in sharing our stories, I realized I had not told many people about my tumor removal. I kind of felt like I have tapped out all the good well wishes and kind hearted prayers and offerings that have come our way. My friends have encouraged me that there is no quota on well wishes and that they would like to keep supporting me/us in any way they can.
We have been extremely well supported by friends and family and offers of babysitting and meals. I am so very grateful for everyone's kind words and support!
Even with all these medical surgeries and issues, we only owe about $8,000...and I have a wonderful babysitter who comes into the home to babysit Cedar while I work full time. I am working full time because we have hit the "out of pocket maximum" for our health insurance plan for the year...and if I were to quit, and switch plans, we would owe another $8-13,000!!! This system is insane. But, the cost of COBRA for our plan and for family coverage would be $1,000/month. So, i we were to be able to pay our medical bills and afford the COBRA coverage for two months, I could focus solely on my family and healing and supporting the world in far better ways. For this reason, I'm setting our "limit" at $10k.
All monies will go directly to medical costs/coverages and we sincerely appreciate any funds you would like to send our way. Thank you <3
A complication of his last surgery was that his heart rate is slow, about 50 bpm, and it isn't firing as well as it could/is needed to. We found out a few weeks ago that he has "heart block"...and had him on a take home monitor for a few days. We were pending those results to see WHEN we needed a pacemaker...thinking it could be months.
Well, Cedar's first ever cold led to fluid in his lungs and I found myself with our Dr. Cotts in Pediatric Cardiology at Mott's yesterday. And, instead of a few weeks or months, Cedar will have a pacemaker put in tomorrow morning. Ouch. Sigh. #$%.
It'll be a two lead pacemaker, on the outside of his little heart, and they plan to go in from the side of his ribs instead of sternum...to save the number of times they can go in the front, as we will still need a valve repair surgery sometime soon (years? who knows!).
What does this mean? Our sweet little baby will likely always have a pacemaker. They have to be changed, surgically, or batteries changed, every few years. As kids, maybe that means every 5 years...as adults, more like 8-10. My heart absolutely breaks with the certainty of more surgeries. And I hold that heartbreak with the gratitude and joy that is the fact that Cedar will live and will have a great life and that there IS SOMETHING we can "do".
There are so many thoughts that run amok. And as my dear teacher, Stephen, was describing to Connor and I last night...being with it, in the hospital means having your head down and completely mired in it all...and every now and then maybe one of you can peek up and out of it and see a wider view...and keep trying to do that. Ride the waves. Hold on. And screw that being OK bullshit. I'm not okay! And I'm not - not okay. Strength? Grace? Courage? Requirements. Being in the moment, yet not in the moment...because sometimes you have to ride through it to be with it at all.
THANK YOU to everyone who came out for Night of Grief & Mystery Concert ~ Ypsilanti last night. I'm so glad you were there. What an intense, beautiful thing.
I am deeply grateful for this life and for everything we've been through and are in, and for everything after this moment. I love. So much love. That's all I've got.
I'm becoming very good at deep, abiding love. Strong love and faith. Loving with, despite of, in and through it all.
~~~
Emily and Connor and Cedar live in Ann Arbor Michigan. Cedar was born on April 24th and it was soon discovered that he had multiple heart defects/heart disease. He had a standard "AVSD" - atrial ventricular septal defect, but also, his right atrium wall was small and pushed over to the right side and was blocking blood flow to his lungs, and his heart was basically functioning as a three chamber heart. Besides that, Cedar was an extremely healthy baby boy! We were so grateful.
We were rushed from St. Joe's hospital to the NICU at Mott Children's hospital and placed in the care of the exceptional pediatric cardiology team there.
Emily's (my) original plan was to stop my stressful corporate job and take care of Cedar and fully launch my own business adventures in the realms of intimacy, grief and relationship coaching. But, we were lucky to have access to health insurance, and needed to keep it through my job for Cedar's surgeries. We went home after 4 days in the NICU and kept an eye on Cedar, with weekly echocardiograms and x-rays to monitor his blood flow and lack of oxygen in his body, and had to do open heart surgery when he was just one month old. The recovery time was 8 days in the hospital, just one month after I gave birth to him. It was stressful and scary and we were so supported by our friends and family and the great staff at Mott's!
The surgery was very successful, and, we had to have another surgery when Cedar was just four months old. We were in the hospital for just 6 days. This time, the surgeons removed the pulmonary band, and inserted two small patches of Gortex to fix the hole in his heart. We also learned that Cedar's mitral valve was incredibly unique and has 5 flaps instead of the normal 2! The surgeon spent about an hour working just on this valve! Because of this unique heart architecture, he'll need another surgery...maybe a few years from now.
One of the biggest stressors at this time has been our medical bills and how we're going to pay for everything. I'm working full time, from home, in order to keep the insurance, and, we have about $400,000 in claims right now. I am guessing we will hit a half million dollars in medical claims by the end of the year.
In between Cedar's two heart surgeries, I (Emily) had to have a parotid gland tumor removed. I had been putting it off for about two years. They say the only small surgery is the one that happens to other people...and while I thought this surgery would be tiny, as it was just one overnight in the hospital...it came with about a month and a half of recovery from complications. I have been seeing the ENT team at Henry Ford and U of M, weekly, to drain the fluid build up that my body put in place of the tumor. I have also been wearing a headwrap 24/7 until just yesterday. Sigh. It's been extremely hard to work full time, breastfeed full time, take care of my baby, myself and my family.
While we were at the Orphan Wisdom School last weekend, in sharing our stories, I realized I had not told many people about my tumor removal. I kind of felt like I have tapped out all the good well wishes and kind hearted prayers and offerings that have come our way. My friends have encouraged me that there is no quota on well wishes and that they would like to keep supporting me/us in any way they can.
We have been extremely well supported by friends and family and offers of babysitting and meals. I am so very grateful for everyone's kind words and support!
Even with all these medical surgeries and issues, we only owe about $8,000...and I have a wonderful babysitter who comes into the home to babysit Cedar while I work full time. I am working full time because we have hit the "out of pocket maximum" for our health insurance plan for the year...and if I were to quit, and switch plans, we would owe another $8-13,000!!! This system is insane. But, the cost of COBRA for our plan and for family coverage would be $1,000/month. So, i we were to be able to pay our medical bills and afford the COBRA coverage for two months, I could focus solely on my family and healing and supporting the world in far better ways. For this reason, I'm setting our "limit" at $10k.
All monies will go directly to medical costs/coverages and we sincerely appreciate any funds you would like to send our way. Thank you <3