Our family has had such an amazing week. As I’m sure was evident in my last email, we’ve been having a rough go at things lately, as sometimes it seems as though Pearl’s life is sifting through our fingers so quickly and yet we are unable to stop time. It was good to have a week filled with love, patience, hope, and grace. Delivery day appears to be barreling down the track at 100 mph; all the while life seems somewhat in slow motion. On one hand, I’m happy to reveal all the good and bad of our experiences, but on the other its somewhat embarrassing to read back over all that I’ve written. Thanks for being graceful towards us as we stumble through this, processing and feeling everything in a somewhat public way.
We had another appointment this week, and it went really well. We had a chance to meet with the same doctor we met with when Pearl was first diagnosed, and she is wonderful. We had another ultrasound, and everything still looks to be progressing as it should for a baby with alobar holoprosencephaly. She also mentioned that right now, there are no signs that Ruth may go into labor early. That was great news!
After the ultrasound, we sat down with the doctor, who pulled up each image and walked us through everything that she saw. When looking at an image of Pearl’s stomach, she mentioned, almost as an aside, that Pearls belly was full, which means that she is swallowing. This was surprising considering the news of our last appointment. I mentioned that we had left our previous appointment under the impression that Pearl’s brain can’t really tell anything how to function, and that basic functions would probably prove to be impossible. After trying for a moment to explain that Pearl has a completely normal and healthy cerebellum, which controls many of her “automatic” functions, she decided to find someone who was a little more experienced in the design of baby brains.
She returned with another doctor (who I think is the head of the NICU) in tow, with the hopes that he could explain in a little more detail what condition her brain and cerebellum are in.
Man, I could go on and on about what a gift this man was to Ruth and me. He was quick to tell us that while he would not be surprised if Pearl is born and her body won’t accomplish any of those necessary survival tasks that she needs to accomplish in those first few hours of life, he also wouldn’t be surprised if she comes out fighting with everything she’s got and is able to accomplish a lot of these tasks.
He encouraged us to think through how much intervention we wanted him to give. Again, last appointment we were told that even if we asked for specific interventions, our requests would likely be denied. He encouraged us to think about what is best for Pearl. If she shows signs that she is going for it, then we will be prepared to fight along side of her, but if she seems to be telling us that she doesn’t have any fight in her, then he suggested we be prepared to not put her on life support.
More than anything else though, he stood in complete agreement that God is sovereign over all things concerning her life. He agreed that her condition is no mistake but that God has woven Pearl together in Ruth’s womb. He even brought up the fact that no matter what, she is going to be fine and that thousands of years from now when she is still existing, that the length of her life has no impact on the value of her life. Before he got up and left the room, he told us that he had a little girl born in 1979 who was overtaken by a somewhat similar brain disorder called microcelephaly. He told us her name was Hope, and then he left the room.
He gets it! It’s was so comforting to be in the presence of an older man, who will actually be caring for her, who understands completely the eternal value of life and that God himself has written this story. He understands that our job as parents is to care for her in the best way we can, and to put her interests and needs ahead of our own personal desires. He understands what it’s like to make decisions when you aren’t sure if your child is going survive. And he also knows what its like to say goodbye. We couldn’t ask for more, and are so thankful that he will be caring for our daughter.
Please continue to pray for Pearl, and for Ruth. We are rounding third base right now and are on the home stretch. Her due date is August 12th. Please pray that Pearl will continue to grow, as she is in the single digit percentile in terms of her size. Please pray that God will give her the strength to survive delivery and fight for her life after she is born. I’m so encouraged by her ability to swallow though I know that her fight isn’t about getting over certain hurtles. Pray for our family as we prepare for delivery day. Last week, I met with the guy who runs the cemetery/funeral home here in East Nashville, where Pearl will be laid to rest if God sees fit. He was very caring but it was tough to be face to face with the realities of everything that our future may hold as a family. I know that God will be faithful to give us the strength that we need, and that if Pearl doesn’t make it, she is going to be more than okay, but its not easy to plan for one thing and pray for another.
I’m so thankful for all of you. The care that you have shown us in the last week has been a wind in our sails. Thank you for being here with us. I’m attaching a photo of Pearl. She’s already shy… trying to hide her face, while peaking between 2 fingers! You can see her right eye staring at us.