My presence on the boards may be spotty for the next month starting sometime tomorrow or Sunday. (Not sure because my daughter is pretty sick right now from an infection from the C-section, so our departure may be delayed...)
They airlifted my 11 day old grandbaby to Philly today to the only center in the US that specializes in this disease. My daughter, myself and Cara's twin sister, Chloe, are headed down there tomorrow (hopefully). We expect a stay of a minimum of 30 days and possibly up to a few months.
I am told there is wireless access throughout the Ronald MacDonald house where we will be staying and also at the hospital, but really won't know until we get there.
I expect to still be here and will give anyone who is interested updates via hubs, but really not sure. So wish me luck, and keep Cara in your prayers. Seriously, keep her in your prayers. I'm counting on all of you.
FYI...this disease, Congenital Hyperinsulinism, is so rare that there are fewer than 80 babies born each year with it in the United States.
If you want to learn more, please visit http://helpcara.com.
Thanks for the update. I just posted a comment on the website. I have been and will continue to think of you all during this difficult time. When you can, leave us updates. Hang in there, sweetie!
Irohner, I'm sure you, your daughter, your little granddaughter, and the rest of your family will be thought of by a lot of people here on HubPages. Best, best, of luck to you, the baby, and her parents. How fortunate little Cara is to be able to be treated where they best understand her condition.
Thanks, Wordscribe and Misha. I'm hanging by a thread right now, so your support really, really counts.
The only good news out of all of this is that if they have to do a pancreatectomy (sp?) on Cara, my grandbaby, it might help my 21 year old diabetic daughter. It would be the first of its kind surgery.
FYI...I think I hit bottom today when they baptized Cara before they started transport. Pretty much everything hit home then.
CLS and Lisa, thank you for your thoughts and your support. I'm not overly religious, but please keep up the prayers.
I can imagine the baptism was incredibly emotional. Honestly, anyone would be hanging on by a thread right now. The website is a wonderful tribute, Irohner. Sometimes these can be very positive outlets. My sisters twins had a very rare in utero condition called Twin to Twin Transfusion Syndrome. The website they set up was a very helpful place to vent and journal. I will visit it for updates. Take care of yourself.
I broke down over the Baptism. But then I'm breaking down quite a bit these days. The dad can't be there because of his job, so I'm going to have to be the lead with the docs, take care of my daughter and my other grandbaby AND work full time. I'm pretty damn scared. I haven't really eaten or slept in days and am just trying to find the strength to do this. I'm a Mom so I know I will be able to do it, but can't really fathom right now where it will come from. I'm pretty sure you can sympathize with that.
Thanks Pearl. You have no idea how much your continued support means to me.
Unfortunately, most likely all will not be well. I'm sorry, but I've spoken with many, many parents who have kids that suffer from this and more than likely Cara will suffer brain damage or will have to live with learning disabilities. She will most likely be on feeding tubes for years. Or, if her condition can be helped by meds alone, she will most likely suffer from either anorexia or excessive hair growth. Right now, those are shining lights to me.
I'm sorry. Just having yet another breakdown, Pearl, and I am so not wrapping my head around this that it's pathetic and I really am appreciating your support.
I know you know you have to take care of yourself. You'll literally have to carve out the time to get your basic biological needs taken care of. Bring snacks with you. I know sleeping in hard under these circumstances, but TRY to make room for it. The more exhausted you are the more overwhelming everything is. You know all this. And, you're right, it's amazing what the Mother in you can accomplish. It is overwhelming and you have every right to feel that way. I hope you have some friends a little detached from it all to vent. If not, please do it here. Your family is very lucky to have you, you know. Not every grandmother would go to such lengths (sadly, my mom wouldn't). They are blessed to have you.
Thanks, WS. There's something about a problem cropping up and a mama lioness coming out. But I'm much older now. And quite frankly, there won't be time to take care of biological needs with a healthy infant, a critically ill infant and a daughter in denial and trying to recuperate from a c-section with medical needs. And I think that's what I'm afraid of. Although I know I'll do it, it just seems like too much. I'm so completely overwhelmed.
My prayer goes to you and yours! May God will always be with her. You take good care of yourself too, Irohner.
Whao, Irohner, just take it easy. Stay strong for your daughter, its gonna be alright.
An emotionally draining and scarry time for you all Irohner.
Praying for wisdom and guidance for the specialists and surgeons.
Peace and speedy healing for the parents.
And for Gramsy (hope I got that right) Aroha and Prayers xxoo!!
Kia Kaha-Stay Strong
Kia Manawa Stay Determined.
I just know in my heart ,that Cara has those 'fighting genes' so may these troubles pass quickly ,and one day just be a memory ...
P.S Hopefully you will have access to email etc Irohner, though Im sure computers will be the last thing on your mind..
I will remember to email you all the same ,even if its to send a hug.
I will be thinking of you, your daughter and your grandbaby.
Like others have said, take care of yourself.
Oh, I am so sorry to hear all this. Am on my way to see your site, but just wanted you to know you and your familly all will be in my thoughts and prayers to. I too, am not overly religious, but I read a report once, stating that people who were prayed for were more likely to pull thru a surgery and recover faster. So, it can't hurt!! Dont worry about all of it at once. Deal with one thing at a time as it comes up. Once at the hospital, let the nurses do thier jobs, make sure you let yourself have a minute here and there.
I just saw this post and the website for Cara. Stay strong Irohner. We're praying for you and your family, especially for Cara.
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