Finding that new normal. It's something I've talked about - and had others talk about it too. I know that things are going to be different. There are some parts of change that you expect with a new person added to your family. Eliana however has brought many more changes than we ever anticipated. There are many things I need to learn or relearn in a new way. I need new routines for managing my home and family. I need to get organized! (Something I really enjoy doing, but honestly just haven't had the energy to do yet.) I sometimes wonder why I'm not able to get more done. I wonder if I'm lazy. I think I should be able to handle what is on my plate now, but the reality is that it is going to just take awhile - for all of us.
While we are struggling with something as big as feeding, it's going to be hard to have things seem "normal". i sometimes wonder if I'll ever think things are normal again. I do have glimpses of it though. Times when the children are all playing - and including Eliana in their play. Tonight having the children (4 of them - the unhelpful one shall remain nameless) help with cleaning the wood floors just turned into a time of chaotic fun. (I loved watching our 2yo help - and his excitement of being a part of it all.) He also helped calm Eliana when she was fussy tonight in her swing just by being there and talking to her. It was sweet. Eliana is so very social and often if she gets upset, she just wants someone to talk to her.
As I try to figure out how things need to be managed, I am thankful to be on this side of surgery. Things are much better now. The time before surgery was just hard - painful - heavy. It's hard to even explain the overwhelming nature of all that I felt during those months. Walking through times of "crisis" is difficult and while we are on the other side of that difficulty, I know we have other trials to work through as well. Thankfull though we also have times of joy! Eliana is just a delight. She has the sweetest laugh, a smile that could melt an iceburg and the cutest little face. (Yes, I know I'm biased.)
There are many families facing surgery now or just recently been through it on a Downs Heart loop that I'm on. It is exciting to hear of each new child that successfully makes it through the surgery. Sometimes when I reflect on Eliana's medical issues, I think that had she been born in a different time, she would not be here. It isn't just the heart, but the fact that going into heart failure made her unable to eat. I'm so very thankful that we didn't have to walk that road. I'm thankful for the many medical advisors and doctors we have had to care for our sweet daughter. I'm thankful for the work God has done in her - and also the work He is doing in me.
I'm praying that through all of this that God would give me peace, wisdom, patience and a heart filled with love. I know that some of the requests I've made have not been answered as I would have liked. I know also that many of them have - and even sweeter are the times I've been given a answer to something I had not yet asked for. God is good. He is faithful. He is my strong tower.
Eliana's feeding is not improving. At times she seems to do better after some oral exercises, but not enough. In fact, her feedings seem to be getting worse. One of my friends commented that it was hard to believe she had feeding issues when she was so pudgy. It's just due to the feeding tube though. Today she ate 2.5 oz by the bottle (12:30am - 9pm). At the 12:30am feeding just now, she did take 2 ounces which is much better than she has done recently. I am still hopeful, though also trying to be realistic that there may not be an easy fix for our sweet girl.
Thursday morning, I will be meeting again with the feeding therapist. (#4 from the list below) I'm looking forward to hearing what she has to say. Later that afternoon we'll see the physical therapist. I think Eliana is doing well with her physical skills. She is quick at rolling and enjoys doing it.
I am hoping to post some updates on Rebecca's wholehearted bracelets soon. She has taken the last month off to work on finishing up some of her badge work for our Keepers of the Faith club. She has been diligent to finish up her badges. Just today she started beading again. We have some outstanding orders and hope to get to those soon! I'm also planning to post some photos of her bracelets here for those that would like to see them.
Please keep us in your prayers.