We drove through an unexpected snowstorm last night to spend some time with Elsie. Had we known the weather was going to be so bad, we might not have gone, but we did, and eventually got to the hospital without sliding off the road. Much of the same news, including a second brain scan with the same results. It wasn't quite as hard to hear that as it was the first time. Elsie is also having trouble with her digestion, and currently has a tube to help drain excess gastric juices and air from her stomach. They will be doing some tests to try to determine the problem; if it is just that her stomach is way too immature to handle food, or if there is an underlying problem or infection. She is back on the higher-powered ventilator, but like I've said before, every day in the NBICU is up and down, one step forward and two steps back. I know I've said that before, and it's true, but even so, it's hard to receive discouraging news. We're trying to be strong.
Clayton and I have been finding ourselves in our spare time spending more time playing with Evje. She is such a comfort to us during this time. Every little hug is a moment to be treasured. I keep worrying about the effect that all of this is going to have on her. I know, kids are resilient and she'll probably not remember most of this, but it is still hard as her mother to watch her struggle with the changes. My heart breaks a little each time I drop her off at somebody's house.
We continue to be overwhelmed with the support of our family, friends, and even people that we don't know. Thank you for the outpouring of love, especially those of you who have reached out to us as strangers. It really means a lot to us and helps on the hard days to know how many people are praying for us and thinking about us. Thank you to the angels who came and cleaned our house while we were gone, even if I was embarrassed for you to see the messy state of our house. Thank you for the meals and treats that have been thoughtfully delivered. Thank you for watching our dear Evje for hours at a time. Thank you for the financial help. It is so humbling to accept so much that has been given to us, but we know that we couldn't do it without you. "Thank you" doesn't seem like enough, but it's all I can offer to you. Thank you.
I will tell you that when all this is over Evje won't remember any of it. When Abi was in the NBICU we brought Alivia up to see her, she was almost 3 and I thought at the time that it wouldn't bother her but as we were leaving she threw the biggest fit and demanded we take her with us. She was bothered by it for days. I was so upset because I thought the same thing you are that she would be affected by this. I spent most of the time up at the NICU so Alivia didn't see me for most of the time Abi was there but to this day she doesn't remember that time at all. Kids are resilient. Seeing all the feedback your getting from family and friends Evje is lucky to have all the play dates. We are keeping you and you beautiful family in our prays and if you need anything please let me know I have lots of little girls who would love to spoil Evje!!!!!
ReplyDeleteHey Ruth, I would like to talk to you about some financial resources that could help a little bit while Elsie is finishing her growing in the NICU. If you apply for social security income they will pay $30 a month while she is in the hospital. It's not much but as it was described to me back in the day, it's at least a tank of gas! Also another thing I would highly recommend is to apply for some other services which may be overwhelming (lots of paperwork) but I was so glad I did when Cam was born. Even though she didn't receive those services until 5 years later it was a huge blessing.
ReplyDeleteI know this is probably the last thing you want to think about, I did too, but it would help a little. I would be happy to help fill out the paperwork and make the calls to start the ball rolling on all of it. I will text you on Monday and come see you if that is ok and we can talk more then!
Cassidy was two when my girls were born and she was allowed to come in and see them and I tell you what, she ruled that NICU :-) I think the best advice I can give you on that is to just keep things as normal as possible. If you can get on a schedule of visiting, for lack of a better term, like a job (sorry if that sounds bad!) I think I went in tues and thurs (just me) and Saturdays and Sundays (with Barry) sometimes cassidy would come too and we would take turns with her in the playrooms and wondering the halls. Then he would come in on some nights (after work) without me. We also had other family come and spend time with Cam while I was at home with Cassidy so she would not "be alone". I agree with Debbie, Cassidy can't remember any of it except the fact that she was fed hot dogs a lot. LOL
Love you guys!
I tell my kids all the time how lucky they are to be sent to the same family. You never know! Evje could have volunteered to go first so she could be Elsie's big sister and protector someday. Evje will have her own set of blessings from this experience.
ReplyDeleteChristine has great hook ups and info, and not just because of her job. She's got Mommy Cred, like Street Cred, but WAY more useful. ;)
Love you!!