Knee Deep in Water Chloe
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Post by Knee Deep in Water Chloe on May 22, 2013 20:53:47 GMT -5
Hi. I know I don't post on this sub-board often, but I thought I'd share my two cents. We haven't traveled across the country, but we have traveled across the state--about 300 miles. My husband needed surgery and my daughter started having seizures. We don't live in an area with, IMO, adequate medical services. We did tons of driving, staying with relatives, and staying in our camping trailer. Medical expenses did cost a lot out of pocket, and we had double coverage for both my husband and my daughter. Travel expenses came close to pushing us over the edge, but I don't regret making the choice to get the doctors I wanted my husband and daughter to see.
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Queen of Interesting Nuts
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"In the end, we remember not the words of our enemies but the silence of our friends"
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Post by Queen of Interesting Nuts on May 22, 2013 21:12:30 GMT -5
The only thing I know is that my friend and wife were at the hospital ALOT, even with an older child. Now I don't know if they were just okay with the hospital or the wanted to be close as to not disrupt things.
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Sam_2.0
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Post by Sam_2.0 on May 30, 2013 10:58:12 GMT -5
I don't want to keep bringing down the kid's thread, so I'll just throw this out here. It's not related to my OP, but what the heck, it's my thread For a summary on where we are now: un-supermom.blogspot.com/2013/05/aubree-grace.htmlI asked my dad to look into funeral arrangements for Aubree. Just doing a quick google search for places in our area showed a WIDE range in costs for services, and some were not even listed so you had to call. I just couldn't bring myself to do it. My dad called and got all the information and told me he has it ready for when DH and I need to make a decision. Nothing is set up yet, but we know where to go when things happen. Then my mom stepped in and tried to be helpful. She called the cemetery where my grandma is buried and asked if they would consider opening the plot to bury Aubree with her. I don't even know if that's what we want to do. DH has said he can't stand the thought of a burial and funeral. The baby caskets the size of shoe boxes are just too much to handle. We've discussed having her cremated so she can be buried with us at a later time. We don't want to stay in this town either, so I don't want to bury her in some random part of town that we may never be near again. I told mom I appreciated her efforts, but I am just not ready to talk about it right now. She keeps pushing me for an answer on this one And then she went to DH's parents and asked if they wanted to help pay for the costs. That really upset DH. He does not want to accept financial help from anyone right now because we can cover the cost on our own without real hardship. I know our families love and care for us, but I never intended to ask for anyone to help pay for things! All I needed was info on which funeral home to call when the time came so we could have the numbers ready in our hospital bag. Now this has added even more stress on top of everything else.
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raeoflyte
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Post by raeoflyte on May 30, 2013 11:02:26 GMT -5
Would one of your siblings be able to talk to your mom? Maybe email them what you've posted and ask them to politely and discreetly talk to your mom and maybe in-laws to give you and Dh time to grieve on your own?
I'm so sorry. I just can't even imagine.
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midjd
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Post by midjd on May 30, 2013 11:37:32 GMT -5
Would one of your siblings be able to talk to your mom? Maybe email them what you've posted and ask them to politely and discreetly talk to your mom and maybe in-laws to give you and Dh time to grieve on your own? I'm so sorry. I just can't even imagine. Or anyone else who can run interference for you? This isn't something you two should have to deal with right now. Her intentions are probably good, and I'm sure she's grieving too, but she's definitely overstepping her bounds.
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mollyanna58
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Post by mollyanna58 on May 30, 2013 12:03:04 GMT -5
I'm so sorry, Sam.
Your mom is also grieving, and trying to do something is her way of coping. However, her needs are very secondary to your and your DH's right now. Mid is right; someone needs to run interference for you and take on the burden of dealing with your mom. Maybe your clergy can help.
Hugs and prayers to you and your family.
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econstudent
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Post by econstudent on May 30, 2013 17:43:53 GMT -5
I'm so sorry, Sam. Your mom is also grieving, and trying to do something is her way of coping. However, her needs are very secondary to your and your DH's right now. Mid is right; someone needs to run interference for you and take on the burden of dealing with your mom. Maybe your clergy can help. Hugs and prayers to you and your family. I agree.
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whoisjohngalt
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Post by whoisjohngalt on May 30, 2013 18:37:36 GMT -5
I am just so so so very sorry. You are absolutely amazing and both girls are so very fortunate to have you as a mom.
Prayers to you and your family
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Apple
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Post by Apple on May 30, 2013 20:45:45 GMT -5
So sorry <3 And I agree with everyone else, hopefully you have someone who can run interference with your mom. Some people mean well, and they want to fix things, but they don't realize that their fix just isn't what is best for you.
ETA, well crap, I tried to click on the "participated" button and my screen jumped back down and I clicked on "liking" my own post. Please ignore that part! I can't figure out how to unlike it.
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seahorse
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Post by seahorse on May 31, 2013 15:00:27 GMT -5
Sam: In our area there is a funeral home that did Alicia's service and cremation for free. Our only expense for Alicia's service was the urn. The hospital in your area may be a good place to ask b/c they had the funeral home we used listed as one to contact first. We went to a different funeral home to purchase the urn and they called the first funeral home just to make sure the services were free. We had a lot of kind people that guided us and made sure everything was what DH and I wanted. The funeral home also had excellent advice on how to deal with relatives. Giant hugs for everything you are going thru. Focus on every movement and wiggle Aubree gives you they are so precious. Get as many pictures as possible..write a journal on everything Aubree is doing. Hugs , hugs and more hugs
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on May 31, 2013 15:15:44 GMT -5
I wanted to say you don't bring down the kid thread Sam. We're all here for you. Would your dad be willing to sit your mom down and talk to her? Your dad can make it clear that while her heart is in the right place this isn't what you want. He can let her know you already asked him to look into things and he's taken care of it. Your DH might want to make his preferences known to his parents so if mom calls again they can also gently let her down if they have not done so already.
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Chocolate Lover
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Post by Chocolate Lover on May 31, 2013 15:19:34 GMT -5
Sam, I am so sorry to hear this, there are no words Hope someone can reign your mom in for you.
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Queen of Interesting Nuts
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Post by Queen of Interesting Nuts on May 31, 2013 15:29:02 GMT -5
It's your thread Sam, it is remarkable your strength. I think it is very difficult. I remember my Kate's cremation was around 500.00 and we have a beautiful urn that stays with us. The funeral director was very helpful and sympathetic and understood why we were crying the whole time. Please believe that they understand what you are going through and that crying is a part of it.
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bean29
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Post by bean29 on May 31, 2013 15:31:09 GMT -5
We had a Mom on the old boards who went through something similar. I don't know if she still posts here - if she does, she changed her name. I am so sorry to hear your little Aubry is not doing well. I will pray for your family. I would definately talk to the hospital. We had a touching article in the local paper about a service the local hospital provides for parents who lose infants at birth or shortly after. They have caregivers who work with the families to help them grieve. I would think talking to the hospital would be a good idea, but since you have a closer relationship to your OBGYN right now, you might want to ask them first. Maybe they will make the call for you.
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seriousthistime
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Post by seriousthistime on May 31, 2013 18:45:12 GMT -5
We had a Mom on the old boards who went through something similar. I don't know if she still posts here - if she does, she changed her name. Are you thinking of NewMummy? I've thought about her from time to time, and reading about Aubrey makes me think of NewMummy all the more. NewMummy had multiple issues (loss, illness, divorce, finances) hitting one after the other and all right together. She also showed admirable strength and composure.
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bean29
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Post by bean29 on Jun 1, 2013 3:02:09 GMT -5
Yes. That is who I was thinking of.
Sent from my MB855 using proboards
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Sam_2.0
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Post by Sam_2.0 on Jun 7, 2013 9:02:19 GMT -5
I miss NewMummy. She was here briefly, but then left. I used to have her on FB but she's gone there too. And Lisamomof4 - I miss her as well.
Dad and DH went golfing yesterday and got a lot of stuff ironed out. Glad DH felt up to talking about it. My parents faced a somewhat similar situation years ago so I think it was really helpful for DH to talk to my dad.
Going shopping for some outfits for Aubree tomorrow and finishing up the hospital bag while I am in the mood to do it. We got a picture frame that has a clay insert on one side for hand & foot prints. And I crocheted a blanket for her. Not a big scrap-book person but I might get some nice paper for hand & foot prints that we can put into the photo album we've started for her.
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Queen of Interesting Nuts
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Post by Queen of Interesting Nuts on Jun 7, 2013 10:15:09 GMT -5
They should take some pictures of her, and of course let you hold her. All involved should also be directing you to information that you can read.
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Sam_2.0
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Post by Sam_2.0 on Jun 25, 2013 9:23:04 GMT -5
I feel like I'm starting to lose it. I just need a break from life at the moment. But I don't have time What PTO I have needs to be saved for my impending medical leave. And I can't take unpaid time off. My thoughts are so scattered I can't even concentrate on what needs to be done here at work. And I know I am dropping the ball on some things that I really could care less about (party planning committe, upcoming project).
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Deleted
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Post by Deleted on Jun 25, 2013 9:26:00 GMT -5
I would tell the party planning committee that they need to find someone else, since it really is non-essential.
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raeoflyte
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Post by raeoflyte on Jun 25, 2013 9:30:56 GMT -5
Have you talked to Hr about an extended leave? If any circumstances warrant one it is yours. I know sometimes companies are too big to make individual decisions though.
Thinking of you!
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HoneyBBQ
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Post by HoneyBBQ on Jun 25, 2013 17:00:24 GMT -5
Sam - not sure if you've decided or not, but this is another vote for STL BJC/Children's. They are top notch in every way. I can't imagine trying to fly to Boston and all that. BJC is one of the top 5 Children's hospitals in the nation, depending what list you are looking at.
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Sam_2.0
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Post by Sam_2.0 on Jun 25, 2013 22:39:51 GMT -5
Well, it turns out Aubree has heterotaxy and a whole host of issues that go along with it. Only 4:1,000,000 live births have this diagnosis. Our cardiologist yesterday was very sure there is no hope for survival for Aubree. But of course I consulted Dr Google today and it appears Boston and CHOP have doctors familiar with this and can do surgeries to correct some of the issues. Or do a heart transplant. Now I have to figure out how to get our medical records to them for a 2nd opinion. Or maybe STL, I've not researched them as much yet.
Maybe I am being unrealistic, but I feel like I need to research every option before I just give up. Because if she has a chance with the right doctors and the right hospital then that is absolutely where we will go. And if we contact the experts and they confirm that she won't be able to make it even with the interventions, then I know we have really tried everything we can for her.
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taz157
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Post by taz157 on Jun 25, 2013 22:53:15 GMT -5
sam - I don't think you are being unrealistic. I would want to do the same thing that you are doing too. Good luck and sending ((((hugs)))) and ((((prayers)))) your way.
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Jaguar
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Post by Jaguar on Jun 25, 2013 23:20:00 GMT -5
Sam, I too am someone that wasn't suppose to make it. Do what you have to do, my prayers and healing thoughts are with you and Aubree.
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Sam_2.0
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Post by Sam_2.0 on Jun 26, 2013 15:55:51 GMT -5
Well, medical records are on their way to CHOP. If anyone can help us, it would be them. I've read nothing but amazing things about the Dr that will be reviewing our records. At least I can say we tried.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 26, 2013 15:58:01 GMT -5
I don't think you're unrealistic, Sam. I'd feel the same way. Do what you need too and good luck.
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wvugurl26
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Post by wvugurl26 on Jun 26, 2013 16:15:57 GMT -5
Good luck Sam. I don't think it is unrealistic, you are being a mom and fighting to give her any chance you can. She's lucky to have you as her mom.
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mmhmm
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Post by mmhmm on Jun 26, 2013 18:42:59 GMT -5
I've heard nothing but good things about CHOP, Sam, and you're certainly not being unrealistic. I'd do exactly as you're doing. I'd want to know I'd done everything I could possibly do.
I agree with others you need someone to run interference with the 'rents on both sides. A sibling would be perfect, IMO. The whole family is grieving, and people often don't make the best decisions when they're in that state. That said, you are amazingly strong. I'm awed!
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Jaguar
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Post by Jaguar on Jun 26, 2013 20:19:02 GMT -5
Well, medical records are on their way to CHOP. If anyone can help us, it would be them. I've read nothing but amazing things about the Dr that will be reviewing our records. At least I can say we tried.
And that's saying a whole lot.
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