Monday, March 30, 2009 - When Lee and I got to the NICU this morning - this is what we found our sweet little girl doing...cuddling with her pacifier! It's orange - so it might be hard to see in the picture - but it was such an adorable sight to see! Lee left for work after saying good morning to Miss Elle. Shortly after Lee left, I met with the new cardiologist for this month. He discussed Elle's surgery with me - but was pretty vague about it. His main concern is meeting with Neurology again before they set her surgery up. He said he was worried about her shaking episodes and posturing - fearing that they might be seizures. He was supposed to get with Neurology today - but I don't think that happened. Between the cardiac team coming to Elle's bedside and the next round of doctors coming by - Elle was visited by her favorite "voice." Every Sunday from the time I was 6 months pregnant - I would experience full belly movement in church. Our Pastor, Pastor Lance, would start talking and Elle would go crazy. She wouldn't stop moving until the music started. I loved every minute of it! Pastor Lance came by and it was such a blessing to have him there with Lee's grandparents. It was comforting to hear that familiar voice again praying for our little girl and for us - and I'm sure Elle recognized it - although she slept through his visit. The Neonatologists then came by and decided to increase Elle's feedings from 24 cc to 28 cc. She's growing! Our day nurse today, Claire, was wonderful. Her whole goal today was to let me hold Elle as much as possible. I was able to hold her for over 2 hours today and it was so special!
We even got some eye action today! Her new nickname is Elle "Left Eye" Lupher because she loves to keep her left eye open and only occasionally will she open her right eye. Her right side it still a little swollen and her tubes are all on that side of her mouth - so I'm sure it is awkward for her to open up that little eye! Today was the most eye opening we have had so far and Miss Elle is figuring out the world around her - her little hands are going constantly and she has also discovered her pacifier. It was such a wonderful day with her! Lee came back to the NICU after work and we enjoyed a wonderful dinner with my parents, Lee's parents and his brothers. It was so good to be surrounded by wonderful family members - eating in the Ronald McDonald House - it's a mini escape from reality. When we got back to the NICU, our night nurse, Andrea, laid the big news of the day on us. Elle might be having surgery tomorrow. There were some openings for surgery and Elle is on the list - along with three other candidates. If they can get the ok from Neurology - our little one might be having the BT Shunt procedure sometime tomorrow. It could happen at 9:00am or it could happen in the afternoon. I don't think doctors recognize specific hours in the day - to them its just a number. If Andrea hears anything tonight she is going to call us - so both Lee and I have our phones on loud and right next to us. Walking back to the hotel after leaving our baby, I was in tears. I guess the shock of hearing that the surgery may actually happen tomorrow hit me like a ton of bricks. During surgery they will also be putting in a line in her leg so she wouldn't have to have the PIC put in. I told Lee I was scared and his response comforted me in so many ways - simply put - give it up to the Lord....just pray about it! Just one of the reasons why I love my husband.
Psalm 56:3 -4
"In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?"
Proverbs 3:5-8
"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Be not wise in your own eyes; fear the Lord, and turn away from evil. It will be healing to your flesh and refreshment to your bones."
3 comments:
You guys are so strong. She is going to have such good parents. If you guys need anything, please let us know.
Nathan
I didn't care for the way they switch dr. every month when we were there. Just when you are getting to know a dr. or a nurse they switch. Maybe its a good thing so that you can get different opinions. We hope and pray that Elle will have her surgery soon. May the Lord guide the doctors for perfect timing!
To our dear neighbors,
We pray for Elle to remain strong, like her parents, during this difficult time. Our hearts go out to you. You are in our thoughts constantly, and here for you if there is anything you need.
Dan and Sara Gilbert
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