Medical Mumbo-Jumbo (FAQ about Jax’s Medical Issues)

Thank you all for your very good and sincere questions about Jax’s medical issues! I’ve gotten so many good questions, that I thought it would be fun to write a little FAQ post. Do you have more questions? Please ask – I’m happy to answer!

1. Can Jax see? Yes! Jax’s vision is perfect right now.

2. Can Jax go blind from the Retinopathy of Prematurity? Well, technically yes, the disease could still cause blindness. The disease causes the blood vessels in his eyes to grow all wonky (technical term?). If the vessels grow too crazy, they can pull on the eye and cause the retina (what allows you to see) to detach from his eye. You would not be able to tell this happened just by looking at him; his eyes would look totally normal from the outside. But if his retina detached, he would be blind. Jax received the Avastin injections and the laser eye surgery to stop the blood vessels from growing “wonky.” Hopefully, he won’t need any more treatment! Our follow-up appointment is on Thursday, so we’ll know more then.

3. Is the laser eye surgery that Jax got the same as LASIK eye surgery that I got? No – the two surgeries are nothing alike. LASIK for adults cuts off a tiny portion of the outside of the cornea to reshape the eye to improve vision. The laser eye surgery that Jax got was for bad blood vessels inside his eye. His laser eye surgery zapped the bad blood vessels so they would stop bleeding and stop growing “wonky.”

4. Will Jax wear glasses? Maybe. If he takes after his mama, then he will for sure! 🙂 The laser eye surgery took 5% of his peripheral vision, but he won’t even notice that as he grows older.

 5. Did they remove part of Jax’s intestine during the hernia surgery? No. Jax has all of his intestines. A hernia is caused by weakened muscles in the groin (or umbilical) area. The weakened muscles allow a gap for intestines to sneak out of the abdominal cavity. The surgeon pushed all of Jax’s intestines back into the abdominal cavity and then stitched up the hole so they won’t sneak back out again. His intestines work perfectly!

6. Will Jax need to have any more surgeries? Yes. Jax will have at least one (maybe two) surgeries for his hypospadias when he is around 1 year old. Hypospadias is where the urethra doesn’t end up in the right place. I do not recommend Googling this disorder – you will not like what you see…trust me on this one! But here is a good link for more info in case you are curious…

7. Does Jax have Cystic Fibrosis? NO! Hooray! We got the results from the final sweat test last week. Jax does not have the disease. What a relief! We do know, however, that he is a genetic carrier for two rare gene mutations that cause Cystic Fibrosis. When Jax gets older, he and his partner will have to decide what to do with this information before they have their own children.

8. Jax is 6 months old, but he’s still so small! And my 3 month old baby is doing more things than he is doing. Is this normal? Remember, Jax get’s 4 extra months to accomplish things like sitting, rolling, babbling, etc. This is called “adjusted age.” Adjusted age is the age a baby would be if he was born on his due date. To calculate “adjusted age”, you take the babies actual age and subtract the number of months he was born early. So, since Jax is 6 months old and was born 4 months early, right now he has an adjusted age of two months. Preemies get a little bit of leeway when it comes to developmental things. Jax gets those extra four months to do things. For example, if  most babies start to sit at 3 months old, we can expect Jax to sit at 7 month old. We will use adjusted age until Jax is about 2 years old. By then, he should be “caught up” with other kids his age.

9. Jax seems to be doing fine. Why are you still on “lock-down” and not allowing very many visitors? Thankfully, Jax is doing very well! And we want to keep it that way! 🙂 Jax’s preemie lungs are still very fragile – if he caught a respiratory sickness (RSV, a cold) he could have trouble breathing. If he has trouble breathing, he would have to go back to the hospital. No thank you! We are really looking forward to summer when we will be able to introduce Jax to more of you guys.

10. Are you guys going to have more kids? Maybe. We haven’t gotten that far yet!

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Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

3 thoughts on “Medical Mumbo-Jumbo (FAQ about Jax’s Medical Issues)”

  1. Thank you much! I think I’ve probably asked you every one of those questions! There is no question that Jax is a ROCKSTAR. He wouldn’t be who he is without you. Amazing parents raise amazing children. Case. In. Point.

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  2. Thank you for all the information. What a great way to answer frequently asked questions. I can’t believe “wonky” is a technical term, at least its a easy one to remember. Hooray no cystic fibrosis, one more thing to cross off your waiting list. Jax looks like a well rounded,silly, healthy, little boy, oh I forgot super cute and handsome. He will hit all the milestones within the time frames expected of him. The wonderful part is there are so many resources available to you to help him along the way if he needs a little help. They do catch up eventually, I know this for sure! As far as more kids, I think people ask that question of anyone with a child(ren). Its just the natural progression. First
    its when are you gonna settle down, then when you gonna get married, then when you gonna have kids, then as soon as you have one, when are you gonna have more. I have 3 following me and everyone asks if when were going to have more 🙂 Thank you so much for sharing your life with Jaxson.

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