The last 36 hours Juliet has started struggling. She was doing so good for so long and then overnight we noticed a difference. Her first set back. This is the day I was dreading.
The week we brought Jules home she had a few apnea attacks at night. She would stop breathing for a couple of minutes and then come back fighting hard. Super hard for Mom and Dad to watch, and we said our goodbyes a few times during these. A couple of days ago she started having more apnea episodes. Our first real setback. She also has had to be on oxygen 24/7. The minute we take her off of it she starts to turn blue. Something we haven’t had before. It’s crazy how quick it can happen. I was just writing my post on how she hasn’t needed any oxygen, and 24 hours later we are on oxygen non-stop.
I thought I had prepared myself for this moment. I had come to terms with the outcome that this little lady would probably face. But a mammas heart never changes, their maternal instinct is fierce. I tried to even keep a bit of a guard up, to prepare my heart. I had grieved her once already not thinking we would bring a baby home, and now to grieve her all over again is hard to accept. During her attacks I want to tell her to just let go baby girl, your paradise is waiting…but I just can’t give up on her. I try everything to keep her here with us. Usually patting her back or kissing her head, which seems to help bring her out of them and start breathing again. I have also learned about the human body. It just keeps fighting.
I never thought I would have to witness one of my babies die in my arms. That reality is coming a little too clear. Jules has surprised us before and pulled through, and she may do it again..but it looks like her poor body is getting tired. And her momma is getting tired. Tired of waiting for her baby to die. Tired of watching her baby in pain. Tired of not knowing the future. Tired of the unknown. This is where the true test of faith comes in. This is where I choose to believe that God is in control, that He’s got this. That I can hand it over to Him and that He will not only usher my baby into His loving arms, which is hard to believe but are even more amazing than her mommas, but also that he will not forsake me. That he will carry me through this. That He will use this for good and make us more in love with Him after this.
Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. Isaiah 46:4
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
I serve a great God and he has used Jules in a mighty way. What an honor to be her mom and be used by God to share her story.
What an honor that God chose us to be her parents.
About a week ago Ryan and I were laying in bed and he said, would you take any of this back? Would you change it? All of me wanted to scream YES! I’d take a healthy baby that I could grow old with and keep with me forever. But after thinking about it that just isn’t true. I wouldn’t change it. I wouldn’t want to miss the chance of loving on this little angel. To see God’s hand working right before my eyes, using Jules to touch so many lives. To experience the love of people that is so deep. To experience the love of Jesus that has held our hand through every part of this journey. To grow in our faith and knowledge of who God is. No, I wouldn’t change it.
I always seem to end in prayer request, but I always see them answered, so I’ll put you to work again:) Please pray for Jules to be comfortable. And for strength and peace for mom and dad as we have some tough days ahead of us. The unknown may be the hardest part.
I would love to post in a few days that jules is doing great and enjoying time with her family, or that she is dancing with Jesus in heaven with her perfect body. Only God knows which it will be.