August 2nd, 2010

By this evening, Verity was so stable, even without the sedation, that I was able to kiss her again, and her blood pressure did not rise!

So that phase of her recovery is past, and may it not return.

And she passed her C-PAP trial (breathing practice session) tonight, which puts her on track to get her vent out tomorrow!  Thank You, Lord!

We noticed that her bottom lip and tongue kept quivering around the ventilator tape, and I wondered if she was trying to cry.  But when I asked the nurse about it, I was overjoyed to learn that those are attempts to suck!  Oh, how we hope and pray…!

Joe was watching the external pacemaker tonight, and called my attention to the fact that the bottom half of her heart (ventricular) is *very occasionally* firing on its own, which it had not done at all before.  So we are praying and waiting to see what God will decide about that!

Today in the parents’ waiting area, another mother asked me what our child was in for.  When I explained that she was recovering from open heart surgery, she was very interested.  When I mentioned that Verity also had Down syndrome, her face grew sad and she said that she was sorry.  So I had an opportunity to use my prepared answer.  “Oh, please don’t be sorry!  We aren’t sorry!”

Tonight a little ten month old baby girl died there in the Intermediate Unit, hours after being taken off of life support following “an unfortunate incident with a babysitter.”

Verity has Down syndrome and is recovering from major heart surgery.  She has a long road ahead of her, with more struggles than many of us have faced.  Please don’t be sorry about that, for us or for her.  She is alive.

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24 Responses to “Sorry?”

  1. I love your response and I have a huge knot in my throat for the family that lost their child.  I’ll be praying for them during the night.. along with sweet Verity.  I’m so glad to hear about her attempts to suck.. that will be my next “To pray for” for Verity!

  2. Ashley says:

    Beautifully put! She is gorgeous. What a blessing!

  3. Jasmine says:

    Yes, beautifully put and wonderful advocacy for all of us who go through similiar encounters.

    She’s so beautiful.  I hope you don’t mind me reposting this on Facebook.  The more in prayer – the better.

    Thank you for sharing. xox

  4. rebecca says:

    How sad to witness a child die. Sorry? Come on Verity is blessed with a wonderful family. God knew exactly who needed her she truly is a blessing! Prayers for your family.

  5. Aunt Carol says:

    God knows what He’s doing.  He put Verity with your family because He could trust you with that precious little gift.  Am continuing to pray.

  6. Marilyn Osborn says:

    ((((((((((((morning hug))))))))))))))))
    still praying!

  7. Denise says:

    Yeaaaa   VERITY!!!!  (Thank you GOD!)   Those are such great praises~!!!  I am so happy!!!!!!!!!

    Can’t wait to see her picture w/o the vent!!!

    She was definitly doing that sucking thing yesterday— it was so beautiful!!!

    God Bless you today– and strengthen you–   and comfort you today…

  8. Cole says:

    Just checking in- Love the morning hug above! What a strong little girl- she is doing beautifully! more morning hugs all around-
    Thankank you for sharing your strength in the need to hold and having to hold back- my mother’s arms are with you-so hard to feel that…

  9. Becky says:

    Glad to hear that Verity is doing well!  Can’t wait to see that bundle of joy again!  Praying for the family that lost their sweet little one.

  10. Sabrina says:

    Praising God with you for the blessings and the healing! I burst into tears reading that she’s making sucking motions, and when you mentioned your milk supply. I am so hoping with you that you’ll be able to nurse her. You guys are doing such a great job keeping positive. Good job letting people know not to be sorry. People just don’t know.

  11. Anna T says:

    YEA!!  How exciting that she was sucking on the vent!!  I am so glad that she passed last evening’s “test”.  I am continuing to pray, God is so very good all of the time (YEA!!)!! 

  12. Sheena says:

    Hey Sweet Momma!! I am so thrilled to hear that Little Verity is doing so well!! I will continue to pray for your family. You are such an encouragement
    While Hunter was in the hospital for open heart surgery I wrote in a journal and then when we got home I compiled it all to one blog entry. I just wanted to encourage you and if you have time and wish to read it I’ll leave the link here.

  13. Amy (choochie) says:

    WOW!!  I’ve been on a computer break and I completely missed that Verity’s surgery was moved up and just *all* of this and this AM, I read over all your recent post and kept getting tears in my eyes!!  Praise the Lord for sustaining that precious baby girl and you all as well!!  I am praying now too (and am sad that I missed out on praying for her while in surgery….)!!
    May your sweet baby Verity continue to improve moment by moment and may your faith continue to be strong and steadfast!!  What an Awesome God we serve, keeping you all in such “perfect peace” through such a time!!  There’s such strong faith and trust in each of these posts!  May HE continue to hold and strengthen you all.

  14. Danielle says:

    Yay Verity!! :)

    Susanna – how is that young teenage girl who was in the car accident? We have been praying for her as well.

    Thinking of you all the time..

  15. Melissa says:

    I’m so thankful to hear that Verity’s heart is firing on occasion, but my heart is sad for the other family. 

  16. Angiedawn says:

    Oh my heart breaks for the other family.

    You Susanna make me think about so many things and I love that.

    I want to jump up and down at the thought of her sucking and her heart attempting to do what it should and just everything.I am so so happy to read this.Your faith is so so inspiring .I wish I could see her in person.

    ((((HUGS)))) to all of you.

  17. Joy Horton says:

    I’m rejoicing with you in ALL of the wonderful improvements. GO VERITY! How precious that she’s trying to suck! Oh, that made my heart dance!!!! I’m SO happy!!!

    I also rejoice with you that Verity is ALIVE – and hurt for those that lost their little baby. God, be with them!


  18. Shari~hotfudgecustard says:

    This is all such good news!  Praise the Lord!

    I’ll be remembering the other family, too, as well as the babysitter.  What a heavy load for them all to carry!  Maybe they know the Lord and can roll it off onto Him.  Hope so.

    (((((Hugs))))) to you, Joe and Susanna!

  19. Angela in MT says:

    Dh and I continue to lift Verity up.
    I did want to encourage you that Ally was unable to nurse for the first 2+ months of her life because of her cleft.  After the surgery, she picked it up like she was a natural.  I know this does not happen in every case, but it DOES happen.  I will pray specifically for this!
    I also wanted to say just how blessed we have been by your blog.  Praise the Lord for the work he is doing through you and your family!  We have found your faith so very encouraging!

  20. Amy says:

     I love how upbeat and faithful you are. We are continuing to pray for Verity and all of you.
      Our Daughter had OHS at the age of 4. She was 4 before the Dr’s decided to listen to me that something wasn’t right and when they found it she had to have immediate open heart surgery. She will be 11 soon and is such a joy. We live life differently because of her heart defect and it has been a blessing. God has been so good to us and I know he will be to your family as well. God Bless you All.

  21. jennifer76 says:

    I am so so happy at the wonderful news about Verity’s recovery!! I think my heart broke in half hearing about the other family losing their 10 month old like that :(.  How sad.  (((Susanna)))

  22. Lara Font says:

    yeah Verity!!!  can’t wait to see your pics without your vent and in your Momma’s arms!  Perfect answer to the “I’m sorry” thanks for standing up for those of us traveling that same path!  truly Verity is a gift from God!

  23. allison (christianmomoflots) says:

    Oh such wonderful news! We are praising God over here for her!

  24. Lorena says:

    Your perspective is so beautiful; it encourages me in the smaller daily struggles of motherhood.  Speaking of which, thanks to your advice on the feeding schedule, Isaiah is doing much better!  :o)  Thanks for taking time to talk.

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