I cannot believe it has been 4 weeks since we went in for our regular 2nd trimester appointment. The appointment that has forever changed our lives.
Today (November 12th) I had my “regular” checkup with my OB who I haven’t met with since this whole journey began. We discussed the results of the blood test I had done at Children’s Mercy for the testing of Trisomy 13 and what all that entails. We talked about where to go from here and started discussing delivery and labor options.
Honestly. The hardest thing for me right now is deciding where to deliver and get all of the care for me and sweet Annalise. If you know me at all, you know I’m a HORRIBLE decision maker. Especially when it comes to big decisions like this. So deciding to keep my regular OB and the convenience of Shawnee Mission being several blocks away from our home or switching to Children’s Mercy where we have met with all the amazing specialists is just too difficult for me. There are pro’s and con’s for both places so for all you prayer warriors out there- please pray for us as we continue seeking guidance and figuring out where our little girl will get the best care possible.
Overall, this past month has had its downs but it has definitely had its ups as well. When people face trials, struggles, and suffering, it’s hard to imagine those situations as blessings or a time of joy. I’ll admit. The first couple days after finding out was hard. I’m not going to lie and say it has always been easy just because I believe in Jesus. We all have to deal with pain and suffering at some point and we have to effectively cope with it. It’s part of being human.
I’m a sucker for songs. There are just some songs that help me get through things and help me cope. They are the ones that have taught me what I needed to learn most. If you didn’t notice. The last 2 posts ended with song lyrics. The first post referenced the song “Whom Shall I Fear” by Chris Tomlin. This was the song I heard on my way to work at 6:30 AM, the morning after we found out about her brain. Literally just 12 hours after. “My strength is in Your name. For You alone can save. You will deliver me. Yours is the victory..” I’m not a strong person. I have realized that more than ever in the last month. My strength is found in Him and in Him alone.
Just a few days after finding out, we headed to my parents house to be with family. While driving there, a song called “Fall like the Rain” by Citizens Way started playing. I shared the chorus on my Facebook page before anybody knew what was going on. “Why is healing so painful? It feels like I’m losing this war. But I know You’ll be there as we walk through this struggle, because You’ve always been there before. There’s a peace that’s perfect, a hope that is real. There’s a plan and a purpose no matter how you feel…” This was just what I needed to remind me that our trials and struggles refine us and strengthen our faith. We respond to suffering with confidence that God knows, plans, and directs our lives for good. He always provides His love and strength for us. He is so good.
The last post had the lyrics from the song “O’Lord” by Lauren Daigle. “Your strength is found at the end of my road. Your grace it reaches to the hurting….I will stand my ground where hope can be found.” Our hope is in Christ and when we stand firm in His promises, we know everything is going to be alright. We have a peace knowing that God will work this out whichever way He has planned.
When it comes to finding the blessings in trials…One of the little blessings, for me anyways, in this journey is being able to do more sono’s. Since most people only get a couple sono’s throughout their entire pregnancy, I’ve been so blessed with having 6 done in the first 21 weeks! Since we don’t know the life expectancy of our little peanut, it has been such a privilege getting to see her grow every couple weeks. I absolutely love watching the life she has now and celebrating the fact that we, as her parents, can see her growth and development now…since we may not get the opportunity later. And let me tell you. She is one ornery little girl. She is ALWAYS moving and will never let the sonogram technician get a good enough look at her. Which just means I always have to go back to redo the sono later. She knows just what her momma needs 😉
Now that my thoughts from the last month are out there, I suppose I should reveal the test results and not make you guys wait any longer!
So here it is: the blood test which looked into my DNA to see if the number of chromosomes for chromosomes 13, 18, and 21 were off came up NEGATIVE! Annalise Hope does NOT have a trisomy disorder on top of her HPE disorder. This means that the cause of HPE is unknown. And it will be unknown until Annalise is born and they can run genetic tests on her after birth. This does give us hope that she will make it full term and be delivered alive but there’s always a chance that the brain will shut down at any given second from here on out.
This simply means one thing. The rest of this pregnancy is unknown. We will not have the answers to anything. We won’t know how severe she is, until she is here. We won’t know if she makes it, until she is here. But. We are okay with that. Sometimes I feel like it is better to know God than to know answers. I believe it challenges us to trust Him even beyond understanding.
And that is exactly where I’m at in this unexpected journey….while eating my pickles. 😉