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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Saturday, December 17, 2011

Sweet Lilly's last day on earth

I wanted to share some details about Lilly's last day. This may be a long post, but bear with me. I have the need to get it all written down for our family record.

It was a wonderfully happy ordinary day! In fact the first half was so ordinary I have suddenly found myself hazy on the details. Lilly woke up and we did her usual morning routine. She was happy and smiling a lot. I got lots of neck sugar from her! Her congestion seemed a bit better, though she was coughing occasionally a cough that sounded a bit barky. I did her nebulizer treatment, gave her the antibiotic, and she had yogurt with it. (I had planned to do a post soon about how Lilly's blenderized real food diet via g-tube was going. I still want to in case it helps someone else. So that will be forthcoming.)

While I was washing Lilly's things in the sink, I had her in her bouncy seat. That was when she was really playing well and I got my camera and shot a short video. I'm so thankful I did!

In the early afternoon, Lilly had physical therapy. She did great, working hard, and seemed to be really enjoying practicing sitting. Her therapist even commented, at least once, that it was hard to believe Lilly was sick because she was acting the best she had since we brought her home from open heart surgery last month.

It really seemed that overall Lilly was doing well. I knew she still had some congestion so that something was going on inside. But she was on the antibiotic, and Xopenex, and was just acting so Lilly-like that I thought she was really on the mend.

Lilly was usually in my arms, lap, or close to me throughout the day every day. That day was no different.

After a feeding and nebulizer treatment, Lilly and I sat on my exercise mat while I did my afternoon set of exercises to try and heal my diastis. (My stomach muscles are still split apart some from being pregnant with Lilly.) She laid in my lap for one type of exercise, then we both laid down on the mat for the other. This always made her grin!

At this point my husband came home from work early because he had been at the dentist. (Praise God for that appointment or else he would not have seen Lilly alive that day!) He enjoyed coming in and seeing Lilly laying there smiling. He held Lilly some and talked with her. Then it was time for her afternoon nap so he put her down on her pallet where she always naps. She had her toys around her and her face turned towards her mirror. She loved looking at herself in her mirror as she feel asleep!

Lilly fell asleep pretty quickly, which was normal.

We usually let her sleep until about 6:30 p.m. She often woke before that, or around that time. I liked to feed her and we liked her up by then so she'd be sleepy at bedtime. But this evening she didn't. And because she had been sick, I decided that we'd let her sleep until 7:00. So we had our family devotion after dinner. Then I went to wake her.

As I usually did, I knelt down by her and started speaking to her as I pulled off her blanket. When I did I suddenly noticed she felt cold. REALLY COLD. I exclaimed "Oh my poor Lilly!" and grabbed this flannel blanket and began to quickly wrap her as I lifted her up.

Then I saw her face.

The coloring was completely wrong. It resembled some of the pictures I had seen in a class I took on death investigation back in college.

I yelled that something was wrong and told my husband to call 911. He did and then began trying to do CPR. I ended up with the phone in my hand. The operator kept talking to me and asking me questions. It was all I could do to keep from screaming at her as I found her questions so irritating. I knew she was doing her job. But I just wanted the paramedics there. It was too hard to focus on a phone conversation.

They arrived within minutes and grabbed Lilly. I ran with them out to the ambulance which was parked in our driveway. We got in and they immediately began trying to revive Lilly. (We didn't go anywhere but stayed in the driveway.) Lilly looked like a rubber doll lying there. I held one of her little hands as they worked. I felt numb with shock. Perhaps that was good though, I was able to mechanically answer all the questions coming at me about Lilly's complicated medical history. I appreciated the group of paramedics. Especially one that had a scripture bracelet on. I even thanked him for wearing it.

From what I could see out of the ambulance, it looked like the street was filled with flashing lights. I later learned there was a fire truck, another ambulance, and many police cars. Neighbors too.

Lilly wasn't responding to anything they tried. They told me that they would keep trying as long as I wanted them too. My husband was finally able to join me. We decided that it was time for them to stop. Lilly wasn't coming back.

A certificate of death was needed. They asked about calling Lilly's doctor. I said "Which one? She has so many!" But I remembered that her pediatrician had been ready to do this, at the end of Lilly's first week, when we thought she was dying. So they said they would try and reach her. And they left my husband and I alone with Lilly in the ambulance.

The first thing I did was to carefully re-dress Lilly. Then I wrapped her back in the blanket and held her tight. I hummed "How Firm a Foundation" - her favorite song to her. I talked to her about God and Jesus and heaven. I told her I loved her. I kept kissing her. Then my husband held her for a little while. He prayed. Then I got her back. Her head was cold but she felt just right snuggled in close.

Finally the pediatrician was reached and she said she was on her way to our house. My husband went in and talked to T. our 10 year old daughter to see if she thought she wanted to see Lilly. She did. So we took Lilly back inside the house, and all the vehicles left, except a police officer that was waiting for the pediatrician.

My brother P., and mom and stepdad were inside with T. and H. (our 3 year old son). After a few minutes, T. was holding Lilly and crying and talking over her. It was so precious! Then she gave her back to me to hold so she could do Lilly's hair. She gave her the "Lilly bug" hairdo. (Looked like Lilly had two antennae sticking up on her head!) Then H. got in my lap and I helped him hold Lilly for a few minutes. When he got back down I snuggled Lilly as close as I could again.

The pediatrician arrived and hugged us and checked Lilly's pulse. It was obvious she really cared about Lilly. She stayed extra and hugged on T. and talked to her. The next day she even sent T. a peace lily plant! A "lily" to give her "peace."

It was starting to get late now and my husband went to call a funeral home. He opened the phone book. We should have had a plan all ready but we never did. He stood looking at the page but not knowing who to call. My mom suggested one that she had been at recently. I really liked the picture in the ad of that home (a large old house) and so my husband called them.

It wasn't too much later that a man from the funeral home arrived to take Lilly. I couldn't stand giving her up. But I did know I couldn't hold her forever. T. was so worried that Lilly would be cold at the funeral home. But when the man came in, he had a big, thick pink blanket with him and he had me wrap Lilly up in it. And he said for us to tell our children that he would keep Lilly safe and warm!

I kept the flannel blanket I had had Lilly wrapped in and held it close as I watched him carry our precious baby's body out the door. (This flannel blanket is very special - it was made for Lilly by the sister of a Trisomy 18 baby that had died. See the link above to read the story. I thought about this baby Hannah Grace meeting Lilly in heaven. Along with Lilly's Pop and a number of other Trisomy 18 babies who I was familiar with.) I told the man to keep the clothes Lilly was wearing safe because I wanted them back. Even her cloth diaper! (She was wearing new sock monkey pjs from my cousin M.)

The blanket is now in Lilly's co-sleeper bed, which is still by my side of the bed. I love to touch it.

I really didn't cry so much until the next day. (Yesterday.) Even now, I think I'm still in shock. And we've just been so busy that it hasn't really sunk in. But I am feeling the huge void of Lilly not being here. I have the need to take care of her still. And so I'm feeling lost without doing that. Without getting her neck sugar. Without holding her.

But it really does give me great consolation to know that she is in heaven with a Lord and Savior that love her even more than we possibly can. It amazes me that that is even possible! But I know it is!

"But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast." - Ephesians 2:4-9


  1. I share your every thought and tear as we also mourn the loss of our Julia this week. You and Lilly have been such an inspiration to me on this trisomy journey. Bless you and your family in this difficult time.


  2. So prayerful for all of you these next days as you endure this difficult time. So glad it was an otherwise pleasant and enjoyable day and that Bubba got to see and play with her. Thank you for the details as it helps the hearts that are hurting for you from far away.
    Hugs and love,

  3. God bless you all during this difficult time! I have prayed and prayed for God to give you peace throughout this and have faith that He will. God had such an incredible plan for Lilly's life and the first step in that plan was giving her to you and allowing your family to care for her here on earth. You have done such an incredible job and I know you have blessed countless families through Lilly and the journey you all took with her. Thank you for sharing with everyone... I have been blessed by Lilly. So sorry that she's no longer in your home, but so comforted that she's safe, warm, and whole in her forever Home. Much love and prayers!

  4. I'm so sorry that Lily left. I was really rooting for the lil firecracker. I'll pray for you. The coming months will be hard.

  5. Starla (my wife) called me at the office as soon as she of Lilly's passing. It had just been a day or two since I had read of Lilly's congestion but seeming improvement. Though her new life leaves a void here with many, our prayer is that the blessings of reflection on God's word and Lilly's life will bear fruit. Y'all are in our prayers. (David Halbrook)

  6. So thankful we were there thursday night and could be part of lilly's last hours with you. so thankful for granddaughter T's maturity during those final hours and her great love for lilly. if lilly had to leave us, her parting family scene could not have been more beautiful. how blessed she was to have been placed with the mother, father, sister and brother that she had. my overarching prayer is: "Dear Heavenly Father, please don't let us miss any lessons that you meant to teach us through lilly's life and death. Give us a greater love and more compassion for others, and a deeper trust in You."

  7. Your blog was sent out to parents at CCS, so being a blogger I came over. I don't know you personally, but as a mother I cannot imagine what you have been through. I have been weeping over your loss and will be praying for you and your family. I know God is carrying you through as you lean on Him.

    God bless you all. I pray you will continue to feel His arms wrapped around you each day.

    Beth Ferrell

  8. May I receive your love each day I am alive.
    May I accept death and struggles as my teachers.
    May I know peace and joy no matter the circumstance.

    I borrowed this from a friend that lost triplets born too early to survive on this earth. Please pass it on to other who may need it.


  9. I have always felt so endeared to Lilly and you all. I feel so blessed to share in these blog posts, to have read the caring & loving nature of each detail and each moment of Lilly's life as you lived it. I cannot imagine your pain & I am so sorry for your tremendous loss, I pray that God is there with you all comforting you with His mercy and love. Lilly seemingly did so much for so many in such a brief span of time, bringing many people together on her behalf, and for those others whom have Trisomy 18. On Lilly's behalf, on my facebook feed when I shared Aunt Nikki's blog posts & in my personal life as I spoke about Lilly, so many people around the world came together in prayer, celebration when things were going well and now, great sorrow at her loss. She left her tiny indelible footprints on many hearts around the world and is now surely continuing her role of angel there in Heaven. May God bless you all and keep you in His abiding arms of healing. Thank you for sharing everything with us in this blog, even these painful entries, as your blog has been a means of bringing us all closer to God reading them - your faith, your hope, and now your praise through your grief, is a blessing. You, Lilly, and your whole family have given us all a great gift of faith, love and Divine purpose through this blog. With my condolences and love, Cheryl Ries

  10. In am so very sorry for your lost. The pain in your heart will always be there you will only learn how to manage it better as time passes. God did not want Lilly to be in any more pain so he took her pain away and I know that with your faith in our Father he will also ease your pain as you take solace in knowing that. You are an amazing woman for having shared this journey of Lilly's life and may she rest in peace. There has to be significance in the Lord taking someone so near to the celebration of Jesus' birth. I lost 5 members of my immediate family one week before Christmas ! God Bless you and your family !

  11. I read your post on the way to church and cried the whole way. I have continued to ask the Lord, "Why?" and I'm sure you have done the same. I have asked that question about my own personal losses and sometimes it's just hard to understand. I marvel at your courage and the faith you have. Your children have such character and trust. It is testimony to the firm foundation you are establishing in your family. We all do not know the number of our days but Lilly treasured her time and the Lord has used her mightily and her legacy lives on. In a very real way I feel like my own life was changed because of your daughter. Thank you Little Firecracker from the bottom of this mama's heart.



  12. God bless your family! We have and will continue to pray for your family. Thank you for sharing your journey with us. -Annabel and Family

  13. Your family is an inspiration to everyone - a true picture of what faith is. Thank you for sharing Lilly's final day with us. You will all continue to be in my prayers.

  14. I only had the pleasure of meeting Lilly twice, when she was so little that I thought she was a doll in T's arms at first, but I could see clearly how loved and adored she was, and I can't imagine how much y'all must miss her or how hard this time must be. I wept while reading this, and can't but help to admire your strength and faith. My thoughts and prayers are with you and your family, and I look forward to seeing your little Lilly again someday, in a place with no sadness, pain, or tears.

  15. Lilly touched me deeply. Holding her gave me appreciation for life and hope. Watching your families acceptance of Gods will made me even stronger in my beliefs. I love you all.

  16. Our spiritual family in Mandeville, LA, has been following your story and praying for Lilly constantly. I sat in my study this morning and cried hard for your family. I pray that your faith will become ever stronger in our great God, that you find hope and comfort in Him, and that you long for the time when you will see Lilly a body immortal, imperishable, and victorious! (1 Cor. 15:50-58)

  17. We are praying for all of you right now. It brings lots of tears to my eyes, imagining how much you miss your little blessing, but what a greater blessing to know how happy she is in Heaven right now. We would have loved to meet our little cousin on this earth, but look forward to the hope of meeting her in Heaven one day.

  18. May god bless you and your family and friends, I am an aunt to a little angel who had passed of sids. i know its nothing like being a parent to a angel but i want you and your friends/family to know im praying for yall