Defying the Odds
Just like everything else so far in our adoption journey, bringing baby Jaylen home has been bittersweet. Saying goodbye to N. was very hard to do. I have come to love her and admire her in a way that I have never experienced before. How do you describe the love you have for the woman who gave you a remarkable gift you didn't deserve... Purely out of love? Christlike is the closest possible descriptive I can imagine.
On the other hand, I was ready to be home. Two of us were still in the city, three were home, and two others in Michigan. Having my family spread around the country was unsettling and I was very eager to put my huge family puzzle back together.
We arrived home on Wednesday night, and it was nice for some friends and family to meet Jaylen for the first time. Things were not completely normal since Harper and London weren't there, but home still felt nice.
Thursday morning was a whirlwind - Tom left at 5:00am to travel for work, I got the kids off to school, then brought Jaylen to their classes for a drive by show-n-tell and then took him to his first check up since being discharged from the NICU.
I expected to take a decent amount of time reviewing all the medical craziness of the past two weeks... I did not anticipate getting a new list of medical craziness to look forward to. Below is an overview of the big ticket concerns that had either been overlooked, or mistreated during our stay in the Bronx, that we are now concerned about:
- Jaylen has a severe heart murmur that was noticed, but was treated as a sign of the infection and never mentioned again. Our doctor was shocked that he had not been given and echocardiogram and insisted that we have one done sooner than later since the antibiotics cleared up the infection, but did not erase the significant heart murmur.
- Jaylen, again, failed the hearing test. While he was startling to very loud noises in the NICU, we have discovered that he no longer responds to sound at all. We went to a 10 school drum line competition today, and he didn't so much as blink when the drumming started. Our doctor looked at me after the hearing tests and plainly said "yeah, he can't hear anything." I knew he was not responding to sound, but I was still somehow shocked when those words came out of her mouth. She suggested we start looking at early sign language books.
- There is some concern with possible visual impairment, as he struggles to keep his eyes straight and focused for any length of time. Not sure if this is a muscle control issue, or a visual issue, but either are very concerning.
- We need to consult a general surgeon for an umbilical hernia, and to possibly have his circumcision redone.
- His grasping reflex is inconsistent at best, which was another indicator of muscle control issues, and concern for the doctor.
- He has gained about two pounds since birth, which we thought was really good... but we now understand that it's an unusually large amount of weight to gain in such a short period of time. We don't know what this means... But it was one more thing the doctor was a little baffled by.
So, from here... We are trying to get a pre-approval from our insurance to visit the Kirch Center, where specialists will evaluate Jaylen at a sort of "super appointment" then come around a table at the end of the day to discuss a diagnoses and care plan for him. It takes two months to get an appointment, so in the mean time, our doc is scheduling appointments with a cardiologist, an audiologist, an opthamalogist, a general surgeon and a pediatric dermatologist. (The dermatology concern is regarding some spots that we were told were birth marks, but may in fact be cafe au lait spots that sometimes present with hearing loss and indicate a possible genetic condition.
While I know that it is tempting to share every story of misdiagnosis and medical success, I ask that you please refrain. We KNOW that these things could all amount to nothing, and that there can be a complete healing. We KNOW that there are plenty of stories where a child was told he couldn't do x, y or z... but he defied the odds and did those things and more. We share these things not because we are worrying or doubting and need some encouragement, we share these things for the sole purpose that we DO believe in prayer, and are asking for these things to be lifted up to the God who heals, and sees, and knows... because He is the same God who creates.
Jaylen is a racial minority, born in the Bronx, which is the abortion capitol of the world... The fact that he is even here on this planet is already a miracle. I will unabashedly ask for you to join me in begging God for miracle after miracle to be performed in this boy's life, because I know that He created Jaylen with purpose. I simply cannot wait to see what He does in response to our collective prayer. More than anything though, I can't wait to see what He does in and through our son, this beautiful miracle who has already defied the odds.
On the other hand, I was ready to be home. Two of us were still in the city, three were home, and two others in Michigan. Having my family spread around the country was unsettling and I was very eager to put my huge family puzzle back together.
We arrived home on Wednesday night, and it was nice for some friends and family to meet Jaylen for the first time. Things were not completely normal since Harper and London weren't there, but home still felt nice.
Thursday morning was a whirlwind - Tom left at 5:00am to travel for work, I got the kids off to school, then brought Jaylen to their classes for a drive by show-n-tell and then took him to his first check up since being discharged from the NICU.
I expected to take a decent amount of time reviewing all the medical craziness of the past two weeks... I did not anticipate getting a new list of medical craziness to look forward to. Below is an overview of the big ticket concerns that had either been overlooked, or mistreated during our stay in the Bronx, that we are now concerned about:
- Jaylen has a severe heart murmur that was noticed, but was treated as a sign of the infection and never mentioned again. Our doctor was shocked that he had not been given and echocardiogram and insisted that we have one done sooner than later since the antibiotics cleared up the infection, but did not erase the significant heart murmur.
- Jaylen, again, failed the hearing test. While he was startling to very loud noises in the NICU, we have discovered that he no longer responds to sound at all. We went to a 10 school drum line competition today, and he didn't so much as blink when the drumming started. Our doctor looked at me after the hearing tests and plainly said "yeah, he can't hear anything." I knew he was not responding to sound, but I was still somehow shocked when those words came out of her mouth. She suggested we start looking at early sign language books.
- There is some concern with possible visual impairment, as he struggles to keep his eyes straight and focused for any length of time. Not sure if this is a muscle control issue, or a visual issue, but either are very concerning.
- We need to consult a general surgeon for an umbilical hernia, and to possibly have his circumcision redone.
- His grasping reflex is inconsistent at best, which was another indicator of muscle control issues, and concern for the doctor.
- He has gained about two pounds since birth, which we thought was really good... but we now understand that it's an unusually large amount of weight to gain in such a short period of time. We don't know what this means... But it was one more thing the doctor was a little baffled by.
So, from here... We are trying to get a pre-approval from our insurance to visit the Kirch Center, where specialists will evaluate Jaylen at a sort of "super appointment" then come around a table at the end of the day to discuss a diagnoses and care plan for him. It takes two months to get an appointment, so in the mean time, our doc is scheduling appointments with a cardiologist, an audiologist, an opthamalogist, a general surgeon and a pediatric dermatologist. (The dermatology concern is regarding some spots that we were told were birth marks, but may in fact be cafe au lait spots that sometimes present with hearing loss and indicate a possible genetic condition.
While I know that it is tempting to share every story of misdiagnosis and medical success, I ask that you please refrain. We KNOW that these things could all amount to nothing, and that there can be a complete healing. We KNOW that there are plenty of stories where a child was told he couldn't do x, y or z... but he defied the odds and did those things and more. We share these things not because we are worrying or doubting and need some encouragement, we share these things for the sole purpose that we DO believe in prayer, and are asking for these things to be lifted up to the God who heals, and sees, and knows... because He is the same God who creates.
Jaylen is a racial minority, born in the Bronx, which is the abortion capitol of the world... The fact that he is even here on this planet is already a miracle. I will unabashedly ask for you to join me in begging God for miracle after miracle to be performed in this boy's life, because I know that He created Jaylen with purpose. I simply cannot wait to see what He does in response to our collective prayer. More than anything though, I can't wait to see what He does in and through our son, this beautiful miracle who has already defied the odds.