The past 24 hours have taken me to the lowest moments of the past 12 days and the highest moments. Yesterday morning, we had a conversation with Dr. N about the severity of Lila's state. We were informed that depending on how things progressed in the next 12-48 hours, we would need to change our course of care for her. All of this meaning, if things didn't improve we would begin to make her comfortable and the doctors care would change. We would be able to hold her and just love on her the last hours of her life. How do you process this as a doctor is telling you this about your 11 day old baby? How do you think about planning a funeral for your baby that you've never even seen her eyes? How do you tell your son when he gets older that he never got to know his sister? How do you look at your husband and try to make the hurt go away in his eyes? These were just a few of the questions that flew through my mind as we were having this conversation with the doctor.
For some reason, through this conversation, one thing that my mind kept going back to was "I want a bow for my little girl. She's never even had a bow." This is the strange lengths your mind goes to as you are being told your child may only have hours to live. That was the mission of the day, to get our sweet girl her first bow. Looking back, I think it gave me something to focus on for a bit rather than the gravity of the situation. Mom was able to find some ribbon and I made a bow sitting in the cafeteria of the hospital. When I asked the nurse if I could put it on her, she asked no questions. It's as if she understood. This grieving mother needed her baby girl to have a bow no matter how long or short her sweet life would be. In that moment, putting a little pink bow on Lila's fragile head, I felt like I had a daughter. A daughter that I pray will one day play dress up, will love her dolls, will walk down the aisle on her dad's arm and who will be an answer to a prayer of mine since I was a little girl.
By God's grace, that was yesterday's conversation. Today's conversation was a complete 180 from that. In the doctor's words today "she is a completely different baby than the one that I saw yesterday." Her "procedure" that they did yesterday on her intestines is working. Her blood pressure and all her levels were stable throughout the night. Her coloring is better. She's a fighter, I like seeing that she gets agitated when we mess with her....These are just a few things that Dr. N said to us this morning along with we are now going "day by day with Lila right now, not hour by hour." I've been waiting to hear her doctors say that for 12 days!! Yes, I'm realistic. I know that we may get to a point where we are hour to hour again but for right now we are day by day! Praise the Lord!!
So right now as I get ready for bed, I can rest in peace knowing that yet again God's healing hand is being made evident in the life of my daughter....AND.....she's wearing her purple bow that matches her purple flower bedding that the nurses insisted on her using so she coordinates. It's a good day!
Ephesians 2:10---For we are HIS workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.
Rebecca, although we both go to city view, I've never had the pleasure of meeting you. I have been praying for Precious Lila every time she crosses my mind, which is several times a day. This news makes me overwhelmed with joy and gratefulness! Lila has constantly led me to worship with her precious life, every time I read the group feed or your blog, worship just flows out. The Lord is glorious.
ReplyDeleteI continue to pray that Lila will grow big and strong, that the Lord work miracles and for peace that passes all understanding!
Seriously should have posted a mascara alert on this one, Becca! Geeze!
ReplyDeleteI am now comprehending the importance of that bow, and let me just say that your precious little girl is going to be swimming in bows soon! Each time one of my little munchkins hands me a bow to replace in their hair, I'm going to say a prayer (and try not to tear up) for precious Lila Elizabeth! God's promise in the Bible was a rainBOW, and now He gave you the sweet gift of the HAIRbow! Love it!
So many verses in tonight's sermon hit me for your situation - of course he also added in Ephesians 3:20!! :)
You all are continually on my mind. Lots of prayer - not only for sweet Lila, but for your strength, energy, peace, health...all of it! Thank you for the updates! I know that they must be hard yet joyous. And I can only imagine that you are the ultimate definition of exhausted right now. Much love!
ReplyDeleteHi Rebecca
ReplyDeleteI don't know if you remember me, I am dana gailey's daughter in law. We have been praying for little Lila and your sweet family and will continue to do so. Praying for Lila, and her strength, and that the Lord will heal her. Praying for the hands of the doctors, that the Lord will give them wisdom when making decisions. Praying for you and Scott, for your strength, and for peace in this situation.
Since having 3 girls of my own, I learned to make some fun bows, and I would love to send you one for sweet little Lila, if that is ok. A Bow of faith, faith in God, that one day sweet Lila will get to wear it. I would also love to bring y'all dinner whenever you are ready, so please let me know when would work for y'all.
With Love
In HIm
Caroline Mays
Hello,
ReplyDeleteMy name is Tiffany (Kingston) Morrison. I am a friend of Kim (Barnes) Thomson, and it is through her that I knew your husband, Scott, years ago at TTU.
My husband and I also had a NICU experience when my son was a newborn. He was born almost 10 weeks early. I realize the complications are vary widely at different stages, but I acutely remember those ups and downs of the NICU. One day we were being told our son was a healthy preemie, beating the odds and the next he was battling a serious infection, needing a blood transfusion, and we weren't allowed to hold him or touch him and all we could do was watch on helplessly from the incubator. I hated the constant poking and pricking of my baby's tiny veins. The constant beeping of all the machines. I could hear them even at home as I drifted off to sleep. My breast milk never really came in, due to his prematurity and I would spend hours trying to express what small amounts I could. Anything to feel like this child's mother. There was a lot of exhaustion, a lot of crying. My husband and I got to know one another in a completely different way.
It went on like this for 6 weeks, up and down, up and down. I think the days leading up to his homecoming I was practically begging the doctors, with tears in my eyes, to please just let us bring our baby home. We brought him home on Easter Sunday 2009. It was surreal. How would we function without the daily visits to the NICU, the nurses, the constant santizing of our hands, the visiting hours, calling ahead to get the security code for the parking garage and doors, etc. I hated feeling like I had to ask permission to hold my own baby, my very first baby. I don't think I even realized how much stress the experience was putting on my new family until it was all over.
I know our experiences are different, but in many ways we share something that only NICU parents share and we can completely empathize with you and your family. I remember other NICU parents reaching out to us, and it was comforting.
I am so happy to read that sweet Lila has taken a turn for the better, and that she got her first bow. I will pray for her continued improvement and strength, that she eats as much as she needs, that she is warm and that her heart is beating just as it should, and that all her organs continue to grow and function, and that the incredibly talented NICU staff continues to do God's work as they care for your sweet little girl. Stay strong Stepters, you are loved and thought of often.
From one NICU parent to another, love,
Tiff