Oops! I didn't realize that my post from this morning didn't show up! I was having problems with my computer again and tried multiple times to post this. I was in a rush to get out the door to our appts. and thought it went through.
I'll copy in this mornings which thankfully I saved when I was having troubles. I will write more later today when I'm able about our appointments which were both good and helpful. Here is the first post.
Thank you dear friends for your prayers. Please keep them coming. Yesterday was a much better day and I have a list of things for which I'm thankful.
*Eliana did not spit up at all! I decreased her rate of feed and her amounts. I also spread out the feedings. Not sure if one or all of these things helped, but am glad nonetheless that things stayed in. The "full tummy" still seems to be an issue though. When I try to disconnect her tubing and close her button, often the formula just seems to pour out. Not a lot of fun at all!
*I spoke with the surgeon's nurse. She helped me with the fit of the "flatter" attachment so that the line doesn't stick up from her tummy like in the photo yesterday. I thought it didn't fit and am so glad I was wrong! I'm hoping this will help it not to be grabbed and also be easier to manage. As we talked, she told me several things that were different from what I'd been told in the hospital. (Like I was using the wrong attachment!) I kept saying that this was what they had told me. She asked if I'd like to come in the following day (today) and she would help me. I of course said yes! I started to choke up and cry and she said she knew that I had hoped this would be a panacea and that it wasn't turning out that way. Yes, I just keep hoping for that "magic" fix - but there probably isn't going to be one. It is just going to take time.
*A sweet friend came over and did art lessons with my children - outside - while I napped in a quiet house. The children were thrilled with the beautiful bird houses that they painted. (I'll try to post pictures later.) It was so nice to get some more sleep. All of us were being blessed at that time! Thank you Rebecca!
*Another dear friend brought us dinner. A delicious meal with so many different things from chicken to broccoli, fruit to bread and more. It was a sweet gesture that meant a lot to all of us. Thank you Ruthie!
*Sweet notes of encouragment here and in my email box. I loved the things that ya'll have shared and the verses too. I'm sorry that I haven't been able to write each person back, but please know that each of you ministers to my heart. A lack of response is only due to lack of time - or my computer being down - not from anything else. I am deeply thankful for the body of Christ and the way that it loves on us.
That's all I can think of at the moment. A dear friend on the FIAR boards noted that this is probably much harder on ME than on Eliana. She encouraged me to do more to take care of myself. As Moms, you all know how hard that is to do sometimes. You just do what needs to be done. I think she is right though. I know that the nap and the meal were things that helped me and refreshed both my spirit and my body.
Today we have a long time out. We will be meeting with the surgeon's nurse (who is a friend of our ped) and then with the feeding therapist a couple of hours later. I'm very hopeful that both will be times of help, wisdom and encouragment.
Please pray for wisdom in feeding Eliana. Pray that I would "hear" what I need to hear in order to help Eliana. Please pray that I would know how to better care for myself so that I have plenty to give to my family. As always, pray for health and healing for our sweet girl. Lastly, pray that I would listen to God, follow Him and keep my eyes fixed on Him so that through this trial His glory is evident.
With much love and gratitude,
Leslie
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