2 weeks ago today our Light and Sky came into our world. Happy Birthday babies. :)
Last night was a little better but equally as hard for us. Lucian was pretty stable while we were there but had desaturated before we came. They don't expect to do another echocardiogram until the end of the week or early next week so we have to wait to see how his PDA is progressing. I pray that the opening will be closed. Emma-Sky is still not being fed for now but they still say it doesn't appear to be NEC. If she's okay they plan to start feedings again at a smaller dosage. She's not taking many of her own breaths and it scares me that the machine is doing most of the work keeping her breathing, keeping her alive.
I was crying again which I know is normal but it's really out of my character. I just feel like I can't help them. I asked the doctor why she's changed so much, why she's now so dependant on the machines. "It's normal, at this stage of prematurity." There's that infamous normal again. I don't want to cry and have Adam have to carry the additional burden of worrying about me or having to make me feel better. But of course, true to his character, he wants nothing more than to help other people and will do absolutely anything for his family. He reassured me that we're doing everything we can and that we'd be okay. And we will be.
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Dear Jane,
ReplyDeleteI want to let you know you,Adam,Emma and Lucian are in my prayers everyday.You are an amazing person. If you need anything you know you can call us at 170.
Love,
Dee
Jane,
ReplyDeleteI hope you know it is okay to cry. I can't tell you how many times I have cried with concern for my kiddos. It wouldn't be "normal" if we didn't right? I am praying for you and your babies everyday. It is okay to cry. You are on a roller coaster rid eand when it is all over you will be okay. Every thing will be okay. Your children are beautiful Jane. I can't wait to meet them. XOXO
Amanda
Hi Jane and Adam, I don't know if you remember me Michelle Carroll we worked together at P.S. 170 a fw years back. I just wanted to say that I am praying for your babies each and every day and that you are all in my thoughts often. You must be so exhausted. I am home with my 1 year old and could make calls for you or do research online. Please let me know if I can help you I am here. I couldn't believe that the parking garage wpould not work with you guys. I had an idea I don't know if you are even interested but what about renting a garage in Park Slope? Last Tuesday there were a few. Iam not sure how close they are to the hospital. The prices ranged from $150.00-$300.00+ per month. If you want I can call for you. I think you can write back to be through the blog but if not Joanne M. at 170 can give you my info. It sounds like you have great support around you especially Adam. I love the blog. I will continue to pray for your babies. Love them up as much as you can they look so sweet. Don't forget that people want to help how ever they can so use us to make your lives easier. Take care, thinking of you all. Love Michelle
ReplyDeleteHi Jane and Adam, Sorry my comment was supposed to read Last Tuesday there were a few listed on Craigs List online. Michelle
ReplyDeleteHi Jane and Adam
ReplyDeleteI have being reading your blogs every chance I get. I work at P.S. 170 my name is elena gallo I am a school aide. The babies look beautiful and I am proud of you both. Every one is praying for you , adam and the babies.may God taking your beautiful family and bestow love, health and happiness. In time this will be in your past and your future will be bright.
Best Wishes
Elena Gallo