I was beyond excited to bring my little angel baby home from the hospital, and be able to spend time with her…..but with that being said I was also scared to death. I was scared to become too attached, I was scared that I wouldn’t know what to do for her, I was scared to allow my mind to think maybe she might actually make it, but most of all I was scared to death of her dying in my arms.
I knew the reality of this was high, obviously the odds of a trisomy baby living are extremely low. But even though I KNEW the odds, it didn’t make it any easier for me to wrap my brain around. The fact that my baby would ultimately take her last breath in our house, hopefully with one of us holding her, that we would have to send her off never to see her again, this was just all more than I have ever had to experience.
I found myself reading a lot of blogs about trisomy families and their journeys. I found some comfort in the fact that I’m not the only one to have to go through this and I decided to write this blog today for that very reason. To hopefully help out some of those trisomy mommies or soon to be mommies that might have to face these same circumstances. Death seemed so scary to me, even though I knew exactly where Jules was going once she died. I have never seen anyone die before, so it was the unknown of what that looked like that was scary to me.
I talked with one of my friends mom who was able to be there for her sister-in-law as she lost her fight to Alzheimers, and I’ll never forget her words she said to me….they brought such comfort. She said it’s so beautiful to be there as one of God’s children are ushered into his kingdom. That visual brought such peace.
I must say, Juliet’s road the last few days of her life were not easy. There were times I was frustrated with the Lord, I thought for all of the prayers that are going up for this little lady, could you please take away the pain? I had allowed myself to think that when the time came, Jules’ would pass away peacefully in her sleep, or just slowly stop breathing. That was not the case for us. I don’t say this to make it harder for those of you who may be facing this same journey, but to let you know that through it all we still found God to be so faithful. Although not all the suffering was completely taken away, the Lord answered our deepest prayers.
From day one Ryan and I prayed that we would not have to make any decisions that would ultimately take Jules’ life. We did not want to have to ever look back and say, “what if” or regret a decision we had made. That’s the hard part about this journey as well. As your child’s advocate, and having a child deemed “incompatible with life” the doctors leave all of the decisions in your hands. They will do as little or as much as you desire. Then there are advocacy groups and parents messaging you telling you not to listen to the doctors, and do everything medically possible to make your child live as long as possible. We were hit from all sides and the pressure was overwhelming. So, Ryan and I decided to not join anygroups, and in turn, put our hearts desires at the throne of Jesus. We prayed for guidance and wisdom in this area. We prayed for peace in every decision….and he was faithful.
The Lord answered our prayer to spend time with Juliet at home, to get to create memories, and for her brother and sister to get to know her. He even gave us most of that time with Juliet pain free, equipment free, and medicine free….a huge miracle considering the severity of her cleft and condition. For awhile we all thought the Lord might allow us to keep her for quite some time. It was hard to not let your mind go there. To not think she was going to get to enjoy her first Christmas, and maybe we could see that first smile:) But that was not in the Lords plan.
As the final days drew near, it was hard for us to watch. It was hard to see her body fight so hard to stay alive, it was hard to see her come out of those apnea attacks. We had to keep the oxygen on her 24 hours a day, and since her nose was affected from her cleft, we had to hold the tube of oxygen right by her mouth. This meant that someone had to be up with her at all times to make sure she always had to oxygen. We were so grateful for Ry’s mom and my mom that came to help out on the night shifts! It was at this point when we started debating if we should take away the oxygen. When you watch your baby in this condition, you find yourself saying to her, It’s okay little lady, you can let go now. Your perfect body and life with no pain are waiting for you! We’ll be okay baby girl…please stop fighting. And she just kept going…
After phone calls to our pastor, a couple of doctors, and a nurse who works in the NICU, we found peace in the decision of taking the oxygen away. At this point we felt like the oxygen was keeping her going, even though her body wanted to give up…and it was never our intention to keep her suffering longer than she had to. We were told that if we give her some morphine, allow that to sit in her body for about 30 minutes, and then take the oxygen away, she would have no pain. Even though we were at peace with the decision, it didn’t make it any easier. We still did not want to be the ones to make the final call. And in our darkest hour God met us, and He made that decision for us. Jules’ had the morphine for about 15 minutes, and as we were snuggling her with the oxygen still on, she had a severe apnea spell….which happened to be her last. Although it was hard to watch, although I will never forget what it felt like to hold my baby girl as she took her last breath, although I so badly missed her already….God was faithful! He knew the desires of our heart. He didn’t make us live with that for the rest of our lives. And in this we say, GOD IS GOOD!
Daddy got quality snuggle time with Jule’s the morning before she died, when he took his shift. She held onto his finger letting him know she was going to be okay, or so I like to think:)
Tate had bought this squirrel at a garage sale this past summer, and said he was going to give it to Jules’ if she got to come home. These pictures were taken when the kids came up to tell Jules’ their final goodbyes….and he brought squirrely squirt as he named him, just for her. He thought she’d like that:)
Momma and her girls….or Jules’ and her two mommas:) Kynlee took such good care of her as well!
This is the last picture we have of Jules. A half an hour later she got to go meet Jesus….what a lucky girl.
And it was beautiful. I held my baby girl while her soul got to run to Jesus…and I’m pretty sure he scooped her up in his arms and twirled with her:) After Jules had died she looked so peaceful. Her skin was like porcelain ..her face relaxed. She wasn’t struggling to breath, her body was in no pain. The sun was shining so bright that day, and as we walked with her downstairs the sunshine caught her eyes and they shone brilliant blue. We took her down for the kids to see her after, so they could understand that our flesh is just a shell. We were hoping to provide some closure for them, and so they could understand that our bodies are nothing without a soul. And although they saw her, I don’t think they truly understood because she looked so perfect… but I was thankful for that.
How lucky are we to know without a shadow of a doubt that we WILL see her again, how cool is that! Now we just need to pray for patience….because man do I miss that little cutie:)