March 14, 2013

Update, a Plan of Action, and Some Amazing Girls

We've had quite a few appointments since the last time I've updated so I wanted to make sure I update everyone.

First, some answers to prayer that I want to make sure to include because I know they're the result of you guys praying and to give God the glory. One of the original prayer requests we had was for the fluid around her heart and neck to go away (signs of heart failure). The fluid in her neck has been gone for awhile and yesterday Dr. Hardy, our pediatric cardiologist, said she has NO SIGNS of heart failure! Thank you, Lord.

She is growing at the rate she should be, right on track with a 24-week old baby in the belly. I feel her moving lots and the ultrasound tech who does our regular echo-cardiograms said we're going to have our hands full with her because she definitely has a mind of her own. Apparently as soon as the tech gets a good look, Grace flips on her. Every time. That makes me smile to think about.

Yesterday we had our latest appointment with Dr. Hardy and he said that her heart rate is consistently between 65 and 75 BPM. One thing that I did not fully understand until about two weeks ago is that she has two separate heart conditions - heart block (which is causing the low heart rate) and a single ventricle heart defect. I had thought the heart block was caused by the heart defect but it's actually not. I was very frustrated when I first heard that.

So right now the most concerning thing is her low heart rate. Their concern is that she will get to a size where her low heart rate can no longer sustain her, but because she needs open heart surgery right after birth, they want her to be full-term; they don't want to add prematurity to a major surgery, obviously. So that's probably our biggest concern and prayer right now is that God would sustain her heart rate to full-term.

The fix for heart block is a pacemaker which Dr. Hardy says they'll most likely add when they're doing her first surgery. There is no fix for a single ventricle heart defect (apart from a heart transplant, but that's actually riskier and not their first choice if she doesn't need it right away), so basically they compensate for it with the Norwood procedure and the subsequent surgeries. Little by little this is making more and more sense to me.

As for our Seattle plans, we have appointments the beginning of April to have an echo-cardiogram with a pediatric cardiologist from Seattle Children's, an ultrasound with a perinatologist, and consultations with both where they'll explain in great detail what they see, what will happen, what we can hope to expect, delivery, transfer, what our time, the surgeries, and everything else will look like, etc. Obviously, we're very excited for that, as it will add more pieces to this gigantic unseen puzzle.

If all goes well (and we pray it does), we will go to Seattle when I'm 36 weeks (around the first week of June) and hang out there until Delivery Time (I feel that's momentous enough to be capitalized). Sometime around 38-39 weeks, I'll be induced if I haven't gone into labor naturally. Whether I deliver naturally or by C-section will be determined by her heart rate and how it handles labor.

We have some general information about what comes after that but I think I'll wait until after these appointments in Seattle to say so that we know more concretely.

I'll end by sharing something that puts me in awe of God's goodness and provision. First, he has completely blown my mind with the friends he has brought into my life the last year to year and a half. Especially because it's something I prayed for. Genuine, authentic friendships that I could share life and motherhood with.

As things have unfolded with Baby Grace, from the very beginning, these friends have shown up in real life to walk this with me and pray with us every step of the way. First, Reese put together a Pinterest-worthy "Prayer Shower" for Baby Grace.

Here's beautiful Reese with one of her three handsome sons.

She made this cake! 

That's ice cream in the middle. Go ahead, take a moment. 

 She also made bookmarks with a day of the week on it to remember to pray and on the other side are the prayer requests we had written. So creative!

I wish I had more pictures of how beautiful she made it and all the amazing girls that came. It was so incredibly meaningful. Everyone had written cards and prayers for us, which I've kept by my bedside. They shared some really encouraging verses and words and then we spent a lot of time in prayer interceding for Grace and her life. It was amazing.

And then yesterday my friend Sarah called and said she had been talking about us with a couple other girls and they want to put together a big fundraiser for the time we'll be away in Seattle! Seriously, you have no idea how completely floored I was (Matt too). One of the girls doesn't even know me!

Here's Sarah. I love her. 
(But I don't love how tiny she stays when she's pregnant.) (Well, I love it for her.)

Beautiful Camille. So incredibly sweet and genuine. 
(Pregnancy/staying-tiny thing goes for her too.)

And these are just the "big" things. They've sent cards, asked me repeatedly how I'm doing, researched books for the boys that would help them transition, looked for shirts for the boys to celebrate their Seattle time (sweet Molli), cried with me, prayed with me, and a thousand other meaningful things.

These are just a few of the others, The Preggos. (Half our group was/is pregnant!) 


These girls have no idea how much they've totally blown our minds. They've shown me over and over what authentic friendships look like. And I am more humbled and thankful than I can possibly put into words. It's hard to be on the receiving end (it's way easier to give) but I'm thankful they make it a little easier.

Thank you to all of you. Those I know and those I only know through this blog that I wish I could know! Thank you for praying, for caring, for being so thoughtful, for lifting us up. For a thousand other things that don't go unnoticed.

To God be the glory.

6 comments:

  1. Hi Sara,
    I just started following your blog in January and I left a comment on one of your other posts recently. I hope you got it. I left it awhile after you posted.

    I am so blessed that our Gracious God has brought wonderful women into your life as genuine friends. I've prayed for the same thing here for 5+ years and He has blessed me with several dear friends. What a faithful God!

    I'm praying for you, Matt and Baby Grace often. I appreciate the updates. I'm grateful that none of this took God by surprise and I trust Him to be in every detail, decision and step along the way. Love & hugs to you & Matt!

    ReplyDelete
    Replies
    1. Hi Joanne! Yes, I did get your other comment, sorry I never replied back! Thank you so much for taking the time to comment, I love receiving them. :)
      Thank you for praying for us, we definitely need it! And thanks for taking the time to let us know. :)

      Delete
  2. Hi Sara,
    My name is Erin and my daughter Raygen is turning two this week and she was born with HLHS also. She had all her surgeries at Seattle and we know them well. You will be in good hands. My blog is www.praying4raygen@blogspot.com I will be praying for you and your family and if you ever have any questions or just want someone who knows what your going through please feel free to contact me erinmarielyons@gmail.com
    God Bless.

    ReplyDelete
    Replies
    1. Hi Erin,
      Thank you so much for contacting me! It's so comforting to have someone available to talk to who has gone through the same situation. I'm looking forward to reading your blog and seeing your story. Thank you again for contacting me!
      Sara

      Delete
  3. Hi Sara,
    I just wanted to let you know our family is praying for yours. Emma and Riley just turned 5 last month, but reading your story brings back all the emotions surrounding their early arrival at 24 weeks like it was yesterday. Dr. Hardy was one of their docs and he's fabulous.

    During that time I clung to Jeremiah 29:11. I'll continue to pray for you that you will experience peace during this time that can only come from knowing God's in control and has a plan for you and baby Grace. I'm glad you have such a wonderful circle of friends for support. Let me know if you need anything.

    ReplyDelete
    Replies
    1. Joy, I've actually thought of you several times over this journey. I can't believe it's been 5 years already! I remember those first days, keeping up on their progress through your mom, and praying for you guys.
      Thank you for praying for us, I know you understand how much we need it. :)
      And thanks for responding, it's always so encouraging!

      Delete