We were unable to meet with Dr. B today. He had an emergency cesarean. We did enjoy seeing our little girl! My fluid is up to almost 32 cm. I’m concerned that Brielle’s brain stem is not functioning well, that amniotic fluid is deteriorating her brain, or that she might have a brain bleed. We really won’t know until I have an MRI, hopefully something we can discuss next Tuesday.
Okay, more prayer requests. I have another doctors appointment this afternoon. The last one went well and he was receptive to the information I gave him. This time, I have even more. I’ll be sharing my preliminary thoughts on procedures that should be put in place. And also sharing with him all of the potential causes of death for anencephaly. I’ll be talking to him about ways to avoid these problems and how to save Brielle. Again, this isn’t done. Actively trying to save a child with anencephaly is not done or encouraged. So prayers for this would be greatly appreciated. Also, please pray that God can open my eyes to more information and give me more understanding so that I can figure out how to save these babies.
I have a very specific prayer request. We are going to push for MRI’s and imaging to check on the health of Brielle’s brain. Please pray that not only will we be connected to the right doctors for this, but also that insurance will approve it. It is not normal to have these babies treated, so our insurance may tell us no. Please pray that they say yes. We so badly want to give Brielle her best chance.
I have a couple of thank yous today. I received this beautiful blanket from Lois M. a few days ago. It is so soft and beautiful. I love it so much! I’m sure Brielle will love it too and she’ll look beautiful all snuggled up in it. I can’t wait to hold her in this sweet blanket! Thank you Lois!!!
I also received a book a few days ago titled “You’re Here for a Reason” by Nancy Tillman. I do not know who sent this, but whoever did, please let me know. I’d love to thank you for it! David was just saying we needed more books for Brielle and this book is perfect. Brielle loves the book “Wherever You Are, My Love Will Find You” by the same author and she loves this book as well. I like the elephant on the front, it matches her heartbeat elephant bear (pictured below).
It warms my heart to know Brielle is loved so much. Thank you for these gifts. Brielle, David, and I will treasure them.
I can no longer clip my toenails. So a couple of weeks ago, late at night, David clipped my toenails. As he was doing this, he stopped and said, “Thank you for carrying Brielle. Thank you for doing all of the hard work.” I didn’t really know what to say. He was thanking me as he clipped my toenails. He comes home from work and says, “You’re the best wife and best mommy.” He then leans down and rubs on Brielle, gives her a kiss and says, “Hello baby Brielle! How’s my beautiful girl today? Daddy missed you!” Brielle generally starts moving excitedly when she hears him talking to her and rubbing on her.
David will then begin to clean up the kitchen, prepare dinner, and as I apologize and begin to help him, he tells me to go sit down. He asks me what I’ve found today. And as he takes care of the house and me, I tell him about what new discovery I’ve made today for anencephaly research. He remains attentive even when I can see his eyes glaze over, mostly because not everyone shares the same enthusiasm as I do for cerebral hemorrhaging. We chat over dinner about his day and then he gets up and cleans up dinner. He does this all after having extremely stressful days at work.
Most days, I sit and think, “I do not deserve him.” I’m so thankful for him. He stays strong for me when I can’t physically keep up or emotionally when I’m deep in my own grief. He’s not angry with me for not keeping up with the house, having dinner planned, or waking him up at one in the morning so that he can read to Brielle. He understands and helps me shoulder the burden.
I think what is even more wonderful about him, is that he knows it’s okay to be vulnerable with me too. I don’t need a husband who keeps his hurt and pain from me. I need a husband that I can grieve with. And in those moments I stay strong and let him hold onto Brielle and deal with his own anguish. A few days after we were given Brielle’s diagnosis, I told David, “I need you to be here with me. I need you to hurt with me. I don’t want you to hide it. That wont fix it, it wont make me feel better. It will just make me feel more alone, isolated, like I’m the only one in this.”
And so, as hard as it is for him, he lets himself grieve with me. I think more of him for being honest with me, being honest with himself and how he feels. On the days he can’t keep up, I let him lean on me, and on the days I can’t keep up, he let’s me lean on him.
I love David more now than I ever have. We could have let this tear us apart, let it drive a wedge between us, but instead we’ve chosen to let it bring us closer together. We’ve chosen to use this pain for good. Some days he comes home and we sit and cry through dinner together. Some days he comes home and we laugh and joke about the funny things of the day. He’s with me through it all. He’s there for every good moment and every bad moment. I couldn’t have asked for a better husband or partner through this journey. And Brielle could not have been given a better daddy.
lovingbrielle.com 