Post by noodleskooze on Mar 30, 2015 9:25:44 GMT -5
Wishing you the best of luck! I'm sorry for all you're facing, but you seem to be handling it with a positive attitude. You and the baby are in my thoughts!
Thank you for updating. I'll continue thinking if your family. I remember the first time I heard about that surgery. I could not believe it was possible. It's amazing how far science and medicine has advanced.
I have been following your saga and was wondering how things were going. I saw that on PBS there is a mini series documenting CHOP and their fetal surgery program. www.pbs.org/program/twice-born/ The first episode is this Tuesday night. Good luck with everything!
I talked to HR yesterday... After my FMLA coverage runs out, it's up to my department if they want to keep me on or not. Based on my supervisor's past actions, I'm not counting on her deciding to keep me. Luckily I've been working on establishing my own bookkeeping business, so I'll just have to put more into expanding/ getting new clients once we're home.
PM ME!! I haven't been on this site in forever, but just hopped on to share about the new documentary on fetal surgery that is airing tonight on PBS.
My baby girl has spina bifida and we had fetal surgery in Houston in December 2013. Feel free to ask me any questions! I'll have to go back and read your posts, but I want to offer you hugs and prayers! I've been exactly where you have been!!
Second, I think you need to get clarification regarding bedrest. I have to assume when they say bed rest that will be hospital bed rest, without doubt. They can monitor you and the baby and when the time comes they can transfer you to CHOP for the delivery. I was just on hospital bed rest with my twins for two months a year ago with complete previa but I can almost guarantee they won't just let you sit in the Ronald McDonald House without 24 hour monitoring. This would be welcomed since you will be there anyway. You will have full access to nurses, monitoring, full-care, food, showering and people.
In my case, I am actually regionally closer to Philly- live in Philly burbs- where the plan was for me to be at U. Penn on hospital bed rest. In my case, depending on the severity of the emergency, would have delivered at Penn, the twins would have then been transferred to CHOP. I ended up going up to Lehigh as they have the equivalent NICU rating but could also accommodate myself.
I would definitely speak with the doctors about hospital bed rest. Not like anyone actually wants to be on it, but in this situation, I don't see any downfalls as long as your insurance is decent. You will have the care, food, and be there in case of an emergency.
Lastly, I would immediately apply for disability through your disability coverage at work. When I went out, I had a 15 day waiting period and was placed on short-term disability which then turned into long term disability after 9 weeks. It covered all of my bed rest and flowed right into my 8 weeks I received for the C-section. It was pretty simple, surprisingly. They contacted the hospital, handled all of that themselves and would call me time to time and speak with a nurse to verify that I was in there.
I know FMLA only covers up to 12 weeks and I don't know for certain as every place is different, but I was able to extend my leave as I was on disability so it may be worth looking into. I hope your job will work with you and seriously wish you all the best.
If you have any questions let me know. I wish you all the very, very best!!! I am in the Philly area as well as several others and if you need anything or have questions I am sure everyone here would love to help.
Hey if you are talking about CHOP in Philly, it is simply the best. There is a reason we brag about it. I know you don't know me, but if there is something I can do for you, please let me know, even a simple errand or a magazine run, I'm up for it. I will be praying for you. PM me, please, if you need anything, I mean it. I work in Philly and CHOP is not far from me, so if you just need something, anything..let me know. Chin up kiddo. I can always leave everything at the front desk so they can deliver it so you don't have to meet an awkward stranger as well.
PM ME!! I haven't been on this site in forever, but just hopped on to share about the new documentary on fetal surgery that is airing tonight on PBS.
My baby girl has spina bifida and we had fetal surgery in Houston in December 2013. Feel free to ask me any questions! I'll have to go back and read your posts, but I want to offer you hugs and prayers! I've been exactly where you have been!!
OMG! Your daughter is adorable!
I was born with spina bifida and hydrocephalus and I will be 29 in a few months. If you have any questions about anything with regard to a patient perspective, please do not hesitate to ask me. Also, if you are interested in reading my blog, I can PM it to you.
nikki25, I'll double check on the hospital time/bed rest. My understanding was that most of the bed rest is on my own, with frequent check ups, but it doesn't hurt to clarify. Thanks for the reminder about disability- I only have long term disability through work & it has a 4 month wait period. I'll have to see if it'll cover post c-section time though. I really wish my employer offered STD though- that would've been awesome in this case.
Hey if you are talking about CHOP in Philly, it is simply the best. There is a reason we brag about it. I know you don't know me, but if there is something I can do for you, please let me know, even a simple errand or a magazine run, I'm up for it. I will be praying for you. PM me, please, if you need anything, I mean it. I work in Philly and CHOP is not far from me, so if you just need something, anything..let me know. Chin up kiddo. I can always leave everything at the front desk so they can deliver it so you don't have to meet an awkward stranger as well.
You're so sweet! I tear up every time someone offers to help- I ❤️ this place!
Hey if you are talking about CHOP in Philly, it is simply the best. There is a reason we brag about it. I know you don't know me, but if there is something I can do for you, please let me know, even a simple errand or a magazine run, I'm up for it. I will be praying for you. PM me, please, if you need anything, I mean it. I work in Philly and CHOP is not far from me, so if you just need something, anything..let me know. Chin up kiddo. I can always leave everything at the front desk so they can deliver it so you don't have to meet an awkward stranger as well.
You're so sweet! I tear up every time someone offers to help- I ❤️ this place!
I mean it, sometimes it's the little things that can mean so much and plus, it's goes on my angel point cards, lol. City of Brotherly love, right? Seriously, you just PM and I will leave anything you need at the nurses desk no questions asked and may later we can meet or just leave it be, or you can pass it on. I hope everything goes well for you and that baby.
nikki25, I'll double check on the hospital time/bed rest. My understanding was that most of the bed rest is on my own, with frequent check ups, but it doesn't hurt to clarify. Thanks for the reminder about disability- I only have long term disability through work & it has a 4 month wait period. I'll have to see if it'll cover post c-section time though. I really wish my employer offered STD though- that would've been awesome in this case.
Yes, once they stabilize you after the surgery and you are clear to discharge (usually about 5-7 days), you will be on bed rest at home or where you will be staying afterwards. You will need to have someone with you at all times during your bed rest.
CHOP is pretty strict as far as how close they want you to be to the hospital. I know some hospitals will let you go home and then return when it's closer to your due date or will allow you to deliver at a local hospital if they have a good children's hospital nearby. I think CHOP wants you to stay near the hospital the entire period from after surgery to delivery. Where I had the surgery, they wanted me to stay within a 10 mile radius even though I lived about 30 miles away from the hospital. In the end, they did let me go home eventually.
After you hit a certain number of weeks, depending on how well you're doing, they will most likely let you leave the house for short periods of time in a wheelchair. My hospital actually let me walk short distances, but nothing too long.
I Pm'ed you the other day, so let me know if you didn't get it. I hope the eval goes well. Please keep us posted! And feel free to reach out to me anytime!!