Monday, May 30, 2016

Baby Sunday.

It’s been so long since I’ve blogged that I really didn’t know where to start. 

I’m not going to make this long even though I know I could. I can’t really begin where I left off. Not yet at least, because there are so many beginnings of different parts of our lives since last year. But I will tell you about the one thing that is filling my life the most. 

We found out that our little baby is indeed a girl. For sure. 100%. We also found out at 14 weeks that she also has Cystic Hygroma. 

I don’t want to get into all the details about how my doctor forgot to tell me for about a month when I had a 10 week ultrasound or how every doctor I’ve seen told me that it was because she had a chromosomal defect like Downs or Trisomy since I was older…which, in fact, she does not have after some testing. 

Or that the majority of babies similarly diagnosed are terminated due to the fact that it is recommended by most doctors. 

Or that now she is in Hydrops. 

In short, what the first perinatal doctor found was that her lymphatic node was not developed on one side and basically dead ended. So her body has been filling up with fluid. And her chance of survival is not good. At all. 

The second perinatal doctor we saw said it was a very extreme case of fluid, there was nothing that could be done and that she probably would not make it to full term. 

As a Mommy, I have gone through all the emotions of brokenness, hope, hopelessness, grief, hurt, heartache, researcher of the diagnosis, helplessness, anger and hope again. There is so much I can share and so many parts that aren’t in this post. But I think it’s important for me to share, record and start getting some of these things written down. 

I was lost when I first heard the words Cystic Hygroma and Hydrops. 

Even after many hours of Google research, (since none of the doctors I’ve seen really wants to get to attached to my pregnancy and be pro-baby) I still don’t know that much. I really can’t find any other situations matching my little baby’s condition. 

By the way, we named her, Sunday Brave. It’s funny because Chris and I had her named before we knew any of this or even if she was a boy or girl. This has never happened before with Chris and I; Sometimes we go back and forth with names until my ninth month. Chris isn’t really one to decide on a name so early. He likes to wait and take his time deciding with me. I really feel her name is God given. Sunday (Rest in God) and Brave (He gives courage). 
Psalm 27:14
Wait for and confidently expect the Lord;
Be strong and let your heart take courage;
Yes, wait for and confidently expect the Lord.

Even though my thoughts waver from hope to hopelessness, yet I will wait on the Lord and rest in Him. For He gives me courage and He is giving my daughter courage as she fights to live. Please keep us in your prayers and I will hope to go back and share more of the parts that I left out. The ‘in between the lines’ parts.


Vivian said...

I am so heart broken for you and your family. this truly isn't words i expected to hear...i am sure not words you wanted to voice.
we do know our God is an amazing God...he loves this child and if he calls her home, He alone will provide you with the knowledge she is taken to His side for loving care. She will be perfect...and you will be joined with her one day.
having hope is in His word..I know you and Chris live the word, fall onto the love He gives you...Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Jo said...

I don't even know you but I love you guys. I'm thinking of you right now and I hope your family can keep strong. We in the bloggerverse are with you no matter what happens.

Elicia Gregg said...

Thank you for sharing this post with us. You are probably my most favorite blogger of all time, and I have greatly missed your posts. If we were talking face to face I would not have anything to say because sometimes people just need to be heard and listened to and hugged. That is what am doing for you across the web. If you choose to share your journey I will read every word and listen to what you are saying, and although I cannot offer you a real hug please know that I will always offer a virtual hug. And if you choose not to share your journey I completely understand that, too. Sunday is a beautiful name for a beautiful baby. No matter how imperfect the world says she is - she is perfectly God's. My thoughts are with you and your family.

Nikki said...

I don't even know where to begin but wanted to let you know you are in my thoughts and prayers. I do know that we have a Savior who cares about every part of our lives and He understands. Praying for you, your sweet little girl and the rest of your family. We have had some scares with the precious baby we are expecting and a hymn that has blessed me is Just When I need Him Most. The fourth verse says Just when I need Him, He is my all, Answering when upon Him I call; Tenderly watching lest I should fall, Just when I need Him most. Just when I need Him most; Jesus is near to comfort and cheer, Just when I need Him most. ~ Rev. Wm. Poole

Tesha Papik said...

Beautifully said. You know your all my thoughts and prayers. Love you so much!