Wednesday, April 1, 2009

The Presumed Diagnosis

I had another appointment with Dr. Bonebrake on Monday. 3 weeks after my MRI. I had decided to wait to talk to Dr. B. about any results because I wasn't ready for more bad news. Yes, the possibility existed that there would be no bad news, but how could I know that for sure? It was worth waiting for whatever the news might be, because it offered me a break of sorts. I could put off this next appt. in my mind and just enjoy Judah the way he was, without adding anything scary or sad or new to the situation. There was grace in not knowing; (you're right, Amy). However, I experienced a lot of apprehension and anxiety the day before my appt. All of a sudden I had to face the possibilities that something else even scarier could be happening in my baby's brain; or, something I really felt incapable of dealing with, that Judah could have a cleft palate. I was terrified that after Monday I would also be grieving the loss of a nursing relationship with Judah, and everything that means to me...and him. Well, thank You, Jesus, for women who pray...4 to be exact...you know who you are! It's hard to describe what happened when Monday rolled around. First, I actually didn't lose any sleep on Sunday night. But then on Monday morning, all the way up to and through my appt...well, it's not like God's peace was overwhelmingly present, but that all of my anxiety was absent! I had a couple butterflies here and there, but the anxiety and fear was gone. I couldn't even muster any up when I sat in the room waiting for Dr. B. to bring in the MRI results. It was...weird. And beautiful. God, Jesus, was with me...right beside me in that room.
So, after the ultrasound we sat down together to discuss what the MRI found. The first thing he said was that the MRI was not able to see a cleft palate. It could depend on how Judah was laying, so he can't say 100% that he doesn't have a cleft, but we're now going on the assumption that he doesn't! I almost lost it right then! Relief is just not a strong enough word. He then went on to explain that the MRI confirmed everything he's been seeing on the ultrasounds, with nothing new to add. So, I actually got GOOD NEWS!!! And I got a presumed diagnosis: Aqueductal Stenosis. Out of the 4 ventricles in Judah's brain, 3 are dilated. The presumption is that their is a blockage of some kind in the 4th, so the other 3 are not able to drain properly. His little brain is kind of like a backed up sink. The next step for us on this journey is a consult with Dr. Puccioni, a pediatric neurosurgeon, to talk about what this means, or might mean, for Judah after delivery. Because of Judah's numerous symptoms, Dr. B. is still pretty convinced that he has a syndrome, so there will be blood work and exams/consults with the Genetics Specialist after birth, Dr. Puccioni again, and who knows what else. But, let's just take this one thing at a time, shall we?
There were 2 cool moments with Dr. B. One of the first things he asked me when he came into the room was if I still had my "pipeline" going up. I had no idea what he was talking about! He was like, "Ya know, the prayers around the world thing". I couldn't believe he remembered that! I said we absolutely had people praying for us and him all the time! We joke around a lot, so he started joking about how he'd just like prayer in general. Well, I'm taking him seriously! The other cool thing is an evidence of Christ working in me...and I totally didn't expect this. At the end of our discussion about the results, after all the information he had given me, he looked at me and told me that he knows it's a lot to deal with, there are a lot of questions, it's a lot to handle; but then he told me that I seem to be handling all of this really well. (I've been praying that God would give me courage to take the opportunities He opens up for me when I'm at my appts, etc., and He gave it to me.) I told Dr. B. that it's not me. I told him that it's the Lord and He sustains me through all of this. He said it's me, too, because I'm allowing God to work through me...and the conversation kinda just moved in another direction after that. I don't know where he's at spiritually, but I believe that he has some kind of religious background or something. Anyway, that's about it. I'm still processing everything, but not allowing myself to dwell on the long term implications or possibilities of all of this for Judah...or us. Today I'm choosing to dwell on God's goodness and the gift He gave me yesterday; that I can have some confidence that I will be able to nurse Judah and reach the goal of having a normal nursing relationship with him somewhere down the road. And today I will dwell on the fact that God is with me in every moment. And I will rejoice in the fact that Judah is. And we get the unbelievable privilege of calling him ours!

I almost forgot! We were talking about the possibility that the extra fluid in Judah's brain would resolve itself, and that he would have no lasting impact or syndrome. Dr. B. said that medically, he doesnt' think that's a possibility; but with the "pipeline" I have going, if any kid has a chance at that, it's this one! I think that Dr. Bonebrake has no idea how right he is! My God can do ANYTHING!!! Even give us the grace to praise Him, thank Him, and glorify Him should He decide not to heal Judah!

2 comments:

  1. Girl...Christ in you is so beautiful! Thanks for sharing this journey with us. Glad to be part of the pipeline!

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  2. Thank you, thank you, thank you, for posting an update. I have been praying daily for you all, and wisdom. What an amazing testimony between you and Dr. B. All for HIS glory, wow it gives me chills!!:) . I am amazed at your families strength...
    I will continue to pray about the nursing concern, and that God will give you peace no matter what the outcome is in this area. God is good. Thanks again for posting the latest information. I am thinking about your family all the time...

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