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