Journal entry by Emily Sands —
Douglas is making such funny expressions as he learns how to move his face around. It's getting easier to see his macrostomia and Tessier Type 7 facial cleft.
On December 12 Doug will have surgery to fix his lip and the underlying muscles. The surgery will take 2.5 hours and we will stay in the hospital overnight. They will use stitches and glue, and the stitches will come out about 2 weeks after surgery. He'll have a slight scar but they make a z-shaped incision so any scar tissue can stretch as he grows. They will also remove some of the abnormal growth in front of his left ear, though that's partly cosmetic. Douglas also has a branchial cleft cyst on his left cheek. They can often go away on their own, and since they grow around one of the main facial nerves, it's best to leave them alone until and unless they grow.
You can watch a video of the surgery here - be forewarned, it's hard to watch: https://www.csurgeries.com/video/repair-of-tessier-7-cleft-lip-deformity/
We noticed his ear right away, and that triggered the NICU team to check his kidneys. Ears and kidneys develop at the same time in a fetus, so a problem in one can sometimes signal a problem in the other. His lip defect wasn't evident at birth, and it wasn't until Doug was a little bigger and he didn't have any tubes in his mouth that anyone noticed it. It's very subtle but if it weren't addressed he may have trouble eating and speaking. We're fortunate that it hasn't caused him any trouble drinking from a bottle, though we worked with Occupational Therapy to learn a few tricks to help him compensate.
Our surgeon is Dr. Luke Jakubowski at the U of M. At our pre-surgery appointment, he took lots of pictures so he and his team of attending physicians and fellows in training can jointly figure out how to get the best result. He saw Doug twice in the NICU so when we met with him last month he was ready to recommend the surgery and get it scheduled.
We are having this done when Douglas will be 7.5 months old, 5 months adjusted age (his age had he been born on his due date). That's enough time for him to grow stronger and therefore better able to tolerate anesthesia, without waiting so long that it sets him back developmentally.
The insurance nerd in me is morbidly curious to see what happens when Doug's medical expenses surpass a million dollars for the year. So far he's racked up $982,108 in medical charges. The Affordable Care Act prohibits lifetime maximums on health insurance benefits, which pre-Obamacare were frequently set at $1 million. Douglas would have become uninsurable before his first birthday. Not to mention his pre-existing conditions. I'm voting for candidates who support the ACA and the provisions that keep insurance available and affordable for all.
Finally, between starting daycare, cold & flu season, and his compromised lungs, Douglas is going to need some help and some luck to stay healthy this winter. If you are able, please get a flu shot. We've all gotten our shots - it's free, it's easy, and Target will give you $5 if you have it done there. Buy yourself Starbucks on the way out as a reward for helping babies like Douglas stay healthy.
On December 12 Doug will have surgery to fix his lip and the underlying muscles. The surgery will take 2.5 hours and we will stay in the hospital overnight. They will use stitches and glue, and the stitches will come out about 2 weeks after surgery. He'll have a slight scar but they make a z-shaped incision so any scar tissue can stretch as he grows. They will also remove some of the abnormal growth in front of his left ear, though that's partly cosmetic. Douglas also has a branchial cleft cyst on his left cheek. They can often go away on their own, and since they grow around one of the main facial nerves, it's best to leave them alone until and unless they grow.
You can watch a video of the surgery here - be forewarned, it's hard to watch: https://www.csurgeries.com/video/repair-of-tessier-7-cleft-lip-deformity/
We noticed his ear right away, and that triggered the NICU team to check his kidneys. Ears and kidneys develop at the same time in a fetus, so a problem in one can sometimes signal a problem in the other. His lip defect wasn't evident at birth, and it wasn't until Doug was a little bigger and he didn't have any tubes in his mouth that anyone noticed it. It's very subtle but if it weren't addressed he may have trouble eating and speaking. We're fortunate that it hasn't caused him any trouble drinking from a bottle, though we worked with Occupational Therapy to learn a few tricks to help him compensate.
Our surgeon is Dr. Luke Jakubowski at the U of M. At our pre-surgery appointment, he took lots of pictures so he and his team of attending physicians and fellows in training can jointly figure out how to get the best result. He saw Doug twice in the NICU so when we met with him last month he was ready to recommend the surgery and get it scheduled.
We are having this done when Douglas will be 7.5 months old, 5 months adjusted age (his age had he been born on his due date). That's enough time for him to grow stronger and therefore better able to tolerate anesthesia, without waiting so long that it sets him back developmentally.
The insurance nerd in me is morbidly curious to see what happens when Doug's medical expenses surpass a million dollars for the year. So far he's racked up $982,108 in medical charges. The Affordable Care Act prohibits lifetime maximums on health insurance benefits, which pre-Obamacare were frequently set at $1 million. Douglas would have become uninsurable before his first birthday. Not to mention his pre-existing conditions. I'm voting for candidates who support the ACA and the provisions that keep insurance available and affordable for all.
Finally, between starting daycare, cold & flu season, and his compromised lungs, Douglas is going to need some help and some luck to stay healthy this winter. If you are able, please get a flu shot. We've all gotten our shots - it's free, it's easy, and Target will give you $5 if you have it done there. Buy yourself Starbucks on the way out as a reward for helping babies like Douglas stay healthy.
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Douglas's range of emotions, captured in the space of about 20 ...
Three areas where you can see the evidence of Douglas's facial ...
Doug is on track to be a million dollar baby. The teensy green ...Patients and caregivers love hearing from you; add a comment to show your support.
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