What if I told you this life was gonna be hard? What if I said that there would be days you feel God had given you more than you could handle?? What if I said there would be times you felt like your heart couldn't take one more hit?? What if I told you there would be so many tears and times that the fear would overtake you? Times that you felt so crushed and defeated with no end in sight. Would you make the same choice? Would you have to think twice? Would there be a different outcome to it all?
Before Connor came home we knew many details about him. We knew a lot of his likes and dislikes and were given a medical report. All I was concerned about was his heart. When we found out that his heart was fine, I relaxed.
Connor came home and in a few weeks we were off to the doctor. To have a physical, get shots, and just give him a good one over basically.
We were sent to a cardiologist. We wanted the peace of mind of being sure for ourselves. There were a few concerns that turned out to be no big deal and within his first year of being home we were discharged from his cardiologist and told he didn't need to see us anymore. All the world was right.
We met with a urologist and picked a date for Connors first surgery it was for a condition we knew about from his doctors in Hong Kong so it came as no surprise. And after being home only 8 weeks Connor had bilateral orchiopexy surgery. You want to talk about having your heart ripped out. When they told us we couldn't go any further the helpless feeling that floods your body is the most overwhelming thing I have ever experienced. The nurse carried Connor away and I was crushed. However in a few hours we were led back to his recovery room and I was told " Mom you can pick him up if you want" I scooped him off that bed and sat down in a rocking chair and rocked and sang and touched his hair and in that moment I was alone. Everything and everyone else faded away and it was just us and we were safe.
Next came Connors first ambulance ride and hospital stay due to pneumonia. I watched this beautiful boy go from joyful and playful to a lethargic tearful child that I almost didn't recognize. It was certainly one of the scariest times of my life, and yet I needed to be strong for him so that's exactly what I did. I helped nurses hold him down for ivs and tubes. I begged him to eat and drink. I sat in his hospital bed in the most comfortable positions for hours while he slept because he wouldn't sleep without me holding him. I watched as he slowly came back to that happy boy I knew. I cheered with him the night we left to go home, and once we got home and I tucked him in safely for the night and I was finally alone in a quiet house I let myself break. I cant remember how long I cried that night, but I do know once the tears started they just kept coming. And yet he never knew . No one ever knew because the next morning when he woke up there was mommy with her cheerful smile.
Then started the ear infections. Within a week back to the ER we went and I remember being so so afraid this time because I was afraid it was pneumonia. But it was a ear infection no big deal right get antibotics and recover and then go back to normal life. Only it would be 12 weeks of back to back to back ear infections and antibotics with horrible side effects and a sick sick boy. Finally we were referred to a ENT. Tubes it was and our next surgery was havng tubes put in. Only this time when they took him from me, It was in a hospital bed and although this is how the movies always show it, and I thought when the nurse carried him away for the first surgery it was the worst thing ever, I soon learned that him laying in a hospital bed being wheeled away fro me was much much worse. Surgery went great and this time Connor was even better than the cheerful boy he was before. His ENT explained that he had likely always heard like he was underwater and after 4 years all of a sudden the world was crystal clear. It was an amazing experience to see him after that surgery to watch his head turn and the way he would look when we talked to him. By far one of the top amazing experiences of my life.
In a few weeks Connor still would not comply for a hearing test so he was put to sleep again this time for a ABR. auditory brainstem response ABR; a special hearing test that tracks the nerve signals arising in the inner ear as they travel along the auditory nerve to the brain region responsible for hearing. This was over within minutes and we were thrilled to learn that Connor hears perfectly with the tubes and fluid gone.
Connors latest surgery was on his eyes. Connors eyes muscles are too weak, which means his eyes would turn in. The biggest problem with this is it gives you double vision. So what happens is the brain learns to ignore one eye so that it is not seeing double. If the brain ignores the eye long enough it could stopping seeing with that eye all together so obviously we wanted this corrected asap. This was by far the toughest surgery recovery wise. Connor woke up from surgery in a lot of pain. He fought us and would not open his eyes for an entire 24 hours. All he did was cry and his tears were pure blood. It was one of the most heart breaking things I had ever seen and it was a helpless feeling when he wouldn't accept our comfort because he hurt so badly. The day after surgery when he did open his eyes all the white in his eyes was blood red. This stayed this way for 3 weeks before it slowly began to fade away. Surgery was a success and his eyes look straight ahead now.
After Connors first time with pneumonia we were referred a Pulmonologist ( a lung doctor). She discovered that Connor has scarring in his left lung and although this is not a big concern now it is something we have to watch and be very attentive to. Connor also has pectus excavatum which is a congenital deformity of the anterior thoracic wall in which the sternum and rib cage grow abnormally. More than likely this will not be a concern as he grows, but we do have to watch to ensure as he grows it does not crowd his lungs. Connors was also put on a steroid to ensure that his lungs stay clear. This steroid however will not help once he becomes sick, it only works as a preventative. If Connor has a cold we immediately start breathing treatments every 4/6 hours on a different medication.
So Connor sees his 3 specialist every three months.
His Pulmonologist
His ENT
His Eye Doctor.
Its a lot of appointments. Its a lot of stress and worry, but we are so so grateful for each of them and the way they have helped Connor.
We had another scare last week with Connor he couldnt breathe and after two ambulance rides and two different hospitals we found out it was pneumonia. Luckily his while blood count was not elevated, the way it normally is with pneumonia meaning we caught it very early. After 4 breathing treatments Connors oxygen level was back to normal and we were discharged. With antibiotics he is back to his cheerful self and were hopeful he is finally on the road to recovery once again. We go back for a x ray soon and were hopeful that his lungs will be clear.
Connors last appointment at his ENT we discovered his tubes had fell out. They had been in 6 months. There was no fluid and all looked well so we were told as long as he didn't have another infection we should be in the clear and not need another set. Today we had a appointment with his ENT and it was discovered that the fluid was back. Normally we would immediately schedule surgery to have tubes put in again, however with pneumonia he cannot be put to sleep. So we have the surgery scheduled for may so that he has time to heal and recover.
Are you feeling overwhelmed yet?? I know I am. It seems no matter what I am always waiting for the other shoe to drop. Because I have found that it always does. Now I know what your thinking this is no way to live and im well aware, but its become my normal. Because it seems everytime I let my guard down I am faced again with a setback. But as hard as it can be at times I push through. Not because im some resilient person. Not because im super brave, and certainly not because im tough enough to handle it, but because being his mother is a privilege.
Through all this Connor is the resilient one. He is the bravest kid I know. He is so tough and he handles it all with stride. He has been through so much and this is not even counting all he went through the three years prior to coming into our lives. I am honored to just know him, little on being blessed to be his mother. I had no control over bringing him into this world and yet He has become my whole world what a privilege that is.
You can bet that life is hard. I certainly have thought on several occasions that God has given me more than I can handle. I would be lying If I said there weren't times that I thought my heart couldn't take anymore. Im certain I could fill a ocean with my tears and have felt fear like I have never known before. I have been crushed and defeated on many occasions. And yet even if I knew all this before hand. Even If God had given me a glimpse of all this before my choice would remain the same. A different outcome is not something I can even fathom. Because even in my darkest hour, even when im crushed and defeated and the tears are pouring there is a bigger fear above all the rest. A fear that is so real that it cuts me to the core. It takes me deeper than my heart can even possibly fathom, the fear of knowing that I could have missed this. I could have easily said no, I could have let the fear of unknown dictate my decision to be this beautiful souls mama. I could have let the what Ifs and the worries win. I could have let the fears take over, but I didn't because I had this feeling that God placed in my heart. This feeling that I needed to know him. That I needed to have him in my life. This feeling that life might be harder, but that life would be better with him. That feeling was 100% right.
"And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you."
Before Connor came home we knew many details about him. We knew a lot of his likes and dislikes and were given a medical report. All I was concerned about was his heart. When we found out that his heart was fine, I relaxed.
Connor came home and in a few weeks we were off to the doctor. To have a physical, get shots, and just give him a good one over basically.
We were sent to a cardiologist. We wanted the peace of mind of being sure for ourselves. There were a few concerns that turned out to be no big deal and within his first year of being home we were discharged from his cardiologist and told he didn't need to see us anymore. All the world was right.
We met with a urologist and picked a date for Connors first surgery it was for a condition we knew about from his doctors in Hong Kong so it came as no surprise. And after being home only 8 weeks Connor had bilateral orchiopexy surgery. You want to talk about having your heart ripped out. When they told us we couldn't go any further the helpless feeling that floods your body is the most overwhelming thing I have ever experienced. The nurse carried Connor away and I was crushed. However in a few hours we were led back to his recovery room and I was told " Mom you can pick him up if you want" I scooped him off that bed and sat down in a rocking chair and rocked and sang and touched his hair and in that moment I was alone. Everything and everyone else faded away and it was just us and we were safe.
Next came Connors first ambulance ride and hospital stay due to pneumonia. I watched this beautiful boy go from joyful and playful to a lethargic tearful child that I almost didn't recognize. It was certainly one of the scariest times of my life, and yet I needed to be strong for him so that's exactly what I did. I helped nurses hold him down for ivs and tubes. I begged him to eat and drink. I sat in his hospital bed in the most comfortable positions for hours while he slept because he wouldn't sleep without me holding him. I watched as he slowly came back to that happy boy I knew. I cheered with him the night we left to go home, and once we got home and I tucked him in safely for the night and I was finally alone in a quiet house I let myself break. I cant remember how long I cried that night, but I do know once the tears started they just kept coming. And yet he never knew . No one ever knew because the next morning when he woke up there was mommy with her cheerful smile.
Then started the ear infections. Within a week back to the ER we went and I remember being so so afraid this time because I was afraid it was pneumonia. But it was a ear infection no big deal right get antibotics and recover and then go back to normal life. Only it would be 12 weeks of back to back to back ear infections and antibotics with horrible side effects and a sick sick boy. Finally we were referred to a ENT. Tubes it was and our next surgery was havng tubes put in. Only this time when they took him from me, It was in a hospital bed and although this is how the movies always show it, and I thought when the nurse carried him away for the first surgery it was the worst thing ever, I soon learned that him laying in a hospital bed being wheeled away fro me was much much worse. Surgery went great and this time Connor was even better than the cheerful boy he was before. His ENT explained that he had likely always heard like he was underwater and after 4 years all of a sudden the world was crystal clear. It was an amazing experience to see him after that surgery to watch his head turn and the way he would look when we talked to him. By far one of the top amazing experiences of my life.
In a few weeks Connor still would not comply for a hearing test so he was put to sleep again this time for a ABR. auditory brainstem response ABR; a special hearing test that tracks the nerve signals arising in the inner ear as they travel along the auditory nerve to the brain region responsible for hearing. This was over within minutes and we were thrilled to learn that Connor hears perfectly with the tubes and fluid gone.
Connors latest surgery was on his eyes. Connors eyes muscles are too weak, which means his eyes would turn in. The biggest problem with this is it gives you double vision. So what happens is the brain learns to ignore one eye so that it is not seeing double. If the brain ignores the eye long enough it could stopping seeing with that eye all together so obviously we wanted this corrected asap. This was by far the toughest surgery recovery wise. Connor woke up from surgery in a lot of pain. He fought us and would not open his eyes for an entire 24 hours. All he did was cry and his tears were pure blood. It was one of the most heart breaking things I had ever seen and it was a helpless feeling when he wouldn't accept our comfort because he hurt so badly. The day after surgery when he did open his eyes all the white in his eyes was blood red. This stayed this way for 3 weeks before it slowly began to fade away. Surgery was a success and his eyes look straight ahead now.
After Connors first time with pneumonia we were referred a Pulmonologist ( a lung doctor). She discovered that Connor has scarring in his left lung and although this is not a big concern now it is something we have to watch and be very attentive to. Connor also has pectus excavatum which is a congenital deformity of the anterior thoracic wall in which the sternum and rib cage grow abnormally. More than likely this will not be a concern as he grows, but we do have to watch to ensure as he grows it does not crowd his lungs. Connors was also put on a steroid to ensure that his lungs stay clear. This steroid however will not help once he becomes sick, it only works as a preventative. If Connor has a cold we immediately start breathing treatments every 4/6 hours on a different medication.
So Connor sees his 3 specialist every three months.
His Pulmonologist
His ENT
His Eye Doctor.
Its a lot of appointments. Its a lot of stress and worry, but we are so so grateful for each of them and the way they have helped Connor.
We had another scare last week with Connor he couldnt breathe and after two ambulance rides and two different hospitals we found out it was pneumonia. Luckily his while blood count was not elevated, the way it normally is with pneumonia meaning we caught it very early. After 4 breathing treatments Connors oxygen level was back to normal and we were discharged. With antibiotics he is back to his cheerful self and were hopeful he is finally on the road to recovery once again. We go back for a x ray soon and were hopeful that his lungs will be clear.
Connors last appointment at his ENT we discovered his tubes had fell out. They had been in 6 months. There was no fluid and all looked well so we were told as long as he didn't have another infection we should be in the clear and not need another set. Today we had a appointment with his ENT and it was discovered that the fluid was back. Normally we would immediately schedule surgery to have tubes put in again, however with pneumonia he cannot be put to sleep. So we have the surgery scheduled for may so that he has time to heal and recover.
Are you feeling overwhelmed yet?? I know I am. It seems no matter what I am always waiting for the other shoe to drop. Because I have found that it always does. Now I know what your thinking this is no way to live and im well aware, but its become my normal. Because it seems everytime I let my guard down I am faced again with a setback. But as hard as it can be at times I push through. Not because im some resilient person. Not because im super brave, and certainly not because im tough enough to handle it, but because being his mother is a privilege.
Through all this Connor is the resilient one. He is the bravest kid I know. He is so tough and he handles it all with stride. He has been through so much and this is not even counting all he went through the three years prior to coming into our lives. I am honored to just know him, little on being blessed to be his mother. I had no control over bringing him into this world and yet He has become my whole world what a privilege that is.
You can bet that life is hard. I certainly have thought on several occasions that God has given me more than I can handle. I would be lying If I said there weren't times that I thought my heart couldn't take anymore. Im certain I could fill a ocean with my tears and have felt fear like I have never known before. I have been crushed and defeated on many occasions. And yet even if I knew all this before hand. Even If God had given me a glimpse of all this before my choice would remain the same. A different outcome is not something I can even fathom. Because even in my darkest hour, even when im crushed and defeated and the tears are pouring there is a bigger fear above all the rest. A fear that is so real that it cuts me to the core. It takes me deeper than my heart can even possibly fathom, the fear of knowing that I could have missed this. I could have easily said no, I could have let the fear of unknown dictate my decision to be this beautiful souls mama. I could have let the what Ifs and the worries win. I could have let the fears take over, but I didn't because I had this feeling that God placed in my heart. This feeling that I needed to know him. That I needed to have him in my life. This feeling that life might be harder, but that life would be better with him. That feeling was 100% right.
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