we were still facing the giant. Open heart surgery for our baby girl! I was waiting to be plummeted into anguish and despair. I had been forewarned and completely understood that overwhelming fear - but thankfully it didn't come. Oh, I was afraid, but I was also given the gift of God's peace. I have to believe that this was the answer to many, many people praying for our family. First though I had to walk through a hard place with Him. I'm not saying He wouldn't have given me peace without doing this. I don't know.
I had to come to a place where I could say to God that no matter what the outcome, that I knew that He is good. I had to be willing to place my little girl in His hands. He had her anyway - maybe it was just that I had to be willing to let go. It was completely out of my control! Completely.
I heard someone say that facing surgery made the story of Abraham and Isaac come alive for them. That has never been a story that I really liked or understood. The willing sacrifice of your own child? How could you do that? I didn't know if I could if put in Abraham's place. It's really about trust. It's about knowing who is in control. It's about knowing that God loves my child more than I ever will. I had to realize all of this. All of the statistics and risks that we had to hear - and then sign a form saying that we understood them - twice. When I handed over our precious Eliana, I imagined handing her to God. He blessed us by having a man that took her tenderly ... lovingly ... and cradled her in his own arms. And then he thanked me! This was such a tender moment for me that pierced my heart. My God loves me so very much!
I have been overwhelmed with the many people, literally thousands that have prayed for our daughter and our family. People that have responded with love to the story of our family. Family, friends and complete strangers that have cared enough to pray for us! It brings me to tears just to think how much people care. What a blessing my aching heart has needed.
Why am I feeling sad now? I sometimes wonder if I'll always cry so often. I haven't been a "teary" person in the past, but I'm certain I've shed tears daily since Eliana's birth and many days a flood of them. Tears for many reasons - sadness, fear, pain and also joy, compassion and love.
It's late and I'm tired. I'm running on not enough sleep for far too many months now. My parents left this morning after being here for a week. I'm so thankful that they were able to be here with us - supporting us, loving us and caring for us physically and emotionally. My daughter Rebecca was hit with sadness tonight too. I just held her as she fell asleep. I feel like my heart has been put through the wringer. I hope that it is a better, more compassionate one now for having endured this pain.
I am blessed by your words to me. It amazes me that my words - the raw emotion of all that has gone on in our lives - could be a blessing to someone else. I ponder on how good God is and am amazed that He would choose to use me. Who am I that He would do that? I am thankful and humbled. I have often talked with God about what I'm feeling. I've asked Him to use all of this to change me. I told Him that I thought it would be a real shame to walk through this heartache and emerge unchanged. I want Him to mold me to be more like Him.
I have figured out how to respond to posts, but wasn't sure if just answering in a new post was easier? Wasn't sure if it would be easy for people to scroll back to comments to see answers? Anyway I thought I'd answer some here.
Eliana is taking Lasix twice a day. This is a diuretic which helps her to eliminate the excess fluids in her body. She has been on this since late January to help manage the fluid in her lungs as a result of the holes in her heart. She is no longer taking digoxin. Digoxin is a medicine that made her heart pump harder to try to help the blood get to the right place instead of shunting through her holes. (Due to the holes in her heart, sometimes the oxygen rich blood would be sent back to the lungs instead of out to the body or the oxygen poor blood would be sent out to the body instead of to her lungs.)
I tried giving tylenol through her feeding tube, but it seems too thick to flush due to the tiny size of her tubing. I tried using extra amounts of water, but it didn't seem to work too well. I didn't want to give it and have most of it just sit in her tube. So far, it's worked alright today to alternate and just give that to her when she is awake. She is awake so much more now!
Eliana's hiccups come on suddenly and I have no idea why. They also end suddenly and without cause (or so it seems to me). She has gotten these since before she was born. They have never really bothered her in the past. I think it's just hard on a chest that is already sore right now. Today when she got them in the afternoon I was talking with a friend. She prayed for my sweet girl and they went away quickly. It's so sweet when an answer comes swiftly.
Eliana is trying to feed orally - but it's not going so great. I've been working on trying to manage her pain the last couple of days and not willing to push her on eating. She seems to be feeling better and with that I'll feel more comfortable in trying more feeds with the bottle. For now, I try when she is awake for about 15 minutes or until she shows me that she is not interested any longer. We are scheduled to meet with a feeding therapist on Thursday. I'm hoping that as she feels better that she'll be able to eat! I look forward to the day that we won't have to use the feeding tube!
Eliana's feeding is through and I should probably go to sleep. Morning always seems to come so quickly.
Praying for you who are reading that you would know God's love in a very real way today!
25 minutes ago