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Discussion Starter · #1 ·
It's looking like my 4 year old DS will be coming with us to the hospital for the birth of the twins. It's a long story, but basically he has some complicated medical issues and I don't feel comfortable with anyone taking care of him for an extended period of time, so we've decided that having him with us is going to be the least stressful option for everyone.

I plan to deliver vaginally (G-d willing) in the OR and have an epidural (no flames please - both are hospital protocol for twin deliveries, we've thought this through and feel it's the best decision for us to go along with it). My mom and sister will be in the L&D room with us, and will watch him while we go into the OR for delivery. I feel comfortable with them being able to care for him for a short amount of time, just not hours on end.

He's a very mellow kid. He's in a wheelchair so he won't be running around pulling on tubes and stuff, and generally is very content as long as he's got his DVD player and favorite shows to watch.

We've been talking to him about going to the hospital when the Baby Sisters are ready to come (he was very pleased to hear that we're going to the hospital for mommy and the babies and not for Jackson!
). I haven't done a lot of prep work for the labor part - I had an extremely easy labor with him and I'm hoping for the same with the twins, plus the epi will hopefully help keep things peaceful in the L&D room.

I feel comfortable with this solution, but I'd love to hear any thoughts or input from the mamas here. Thanks
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Can I ask a non-flaming question? Have you researched epi and Krabbe disease? Cuz some of the meds are fairly incompatible. Do you have a good metabolic anesthesiologist who will be doing your meds? All carriers are to be considered symptomatic....which isn't something parents are always told.

As to your other q: I think the key is with having siblings at births to have someone else available to care for them and to have another location if they choose or if you choose to have them go to that location. Have plenty of options so you can be as flexible as possible.

 

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Discussion Starter · #3 ·
Quote:

Originally Posted by mamaverdi View Post
Can I ask a non-flaming question? Have you researched epi and Krabbe disease? Cuz some of the meds are fairly incompatible. Do you have a good metabolic anesthesiologist who will be doing your meds? All carriers are to be considered symptomatic....which isn't something parents are always told.
I have never heard this before... carriers are considered to be symptomatic? Can you explain a bit more?

And thanks for your response to the other stuff
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It's somewhat complicated, but in many types of metabolic disease, carriers are carriers, but they are still symptomatic. Like in Fatty Acid Oxidation disorders...which leukodystrophies are sort of a step up in severity from....the mothers and fathers are told not to fast and not to do diets like Atkins because they are carriers. Many of the parents complain of muscle pain themselves...when they are only carriers.

I realize leukodystrophies aren't exactly the same thing....but it's something to consider and research.

All of the really good metabolic docs we know and know of say this...but ....again, it could be different.

I'm not trying to scare you. But it's something to look into. And without the buzz words like epidural...cuz you want a straight answer, not a "I did it and I was fine" answer.

 

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Discussion Starter · #5 ·
OK, I see what you're saying. As a carrier my GALC enzyme level (the enzyme that Jackson is missing) is lower than a non-carrier, and no one is really sure how that affects us - there's no evidence so far that it does (according to Jackson's specialists, as we've talked about this with them in discussing having carrier children vs. non-carrier), but the fact is there is just so little known about these diseases. Definitely something to look into - thanks for mentioning it!
 

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I can't offer substantial advice because I've never had a baby so I don't know what the birthing scenario is like, but I think it could definitely work out to take your son along. Especially if he's a mellow, good-spirited kid who has no problems entertaining himself if need be. (you mentioned the portable DVD player) He'll also have his aunt and grandma around, so there will be lots of familiar faces! Not to mention he'll be able to be around for the excitement of the birth. He's old enough now to realize that's something special. Just as long as the babies AND Jackson are fussed over and given lots of smooches!


BTW, I have noticed your signature and your son's webpage before and he is an absolutely beautiful child! Congrats on what I'm sure will be two more beautiful children!
 

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My only concern would be to make sure your hospital staff is going to be supportive. I'm not sure how to ensure this, but I'd be far more worried about them being panic-y and irritable about your child than your child having a problem.

I attended a lovely birth in Oct. where the mama's 4 yr old dd and special needs 2 yr old ds were present and everything could not have gone smoother. Originally, they'd planned to have care for the 2 yr old, but concerns about his medical needs finally made the mama feel that she'd be more comfortable having him with her. Her labor nurse teaches our sibling class and was comfortable talking and interacting with the 4 yr old, and the 2 yr old, who is profoundly disabled mostly slept, and was held be his dad when he was awake. The moments after birth with the whole family snuggling on the bed were some of the sweetest I remember in a hospital birth. I think it can turn out very well, and would just make sure the hospital is either used to having siblings around or comfortable venturing into new territory.
 

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I just attended a birth where a 3yo was present, and it was not the best experience. It began late, so he was tired from the get go. He was distracting her so she asked grandma to take him away. While gone he fell asleep and came back around 1:30 still sleeping, after sleeping in the roon for a bit he woke up and started crying and would not stop. Mom had gotten an epi so she was all hooked up and everything, plus he woke up in the middle of the night someplace he'd never been before. Eventually he had to go home, b/c he wouldn't calm down.

Of course you know your son, and 4 is older than three. Of course, make sure somebody is there just for him.
 

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Discussion Starter · #9 ·
Thanks so much for the responses - it's good to hear both the good stories (to help me feel like this is going to be a good experience for us all) and the bad (to help me plan for possible problems).

Quote:

Originally Posted by doctorjen View Post
The moments after birth with the whole family snuggling on the bed were some of the sweetest I remember in a hospital birth.
This is an image I have in my mind too - all of us snuggled up together getting to know the Baby Sisters
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