“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Tuesday, July 19, 2011

SuperBaby Rides Again!

I am so excited right now that I am almost in tears.

Yesterday was another worrisome day, with oxygen saturations on a roller coaster, which led John and I to be on one as well. The doctor decided late yesterday afternoon to do another chest x-ray (more for our sanity than anything). It came back good and he approached us about the possibility that Lydia was suffering from some pulmonary hypertension. He started her on a new medicine that would help balance it out, and told us that we should see results in 24 hours.
They also cut quite a bit of her pain medicines out and eliminated her sedation altogether.
This morning, she was awake, although still not very happy. After taking a short nap, she woke up with a much better attitude. We sat her up in the  bouncy seat and put on Sesame Street, which she watched intently for almost 2 hours!

Rounds brought us excellent news! It seems that the lessons I had to relearn Sunday have given us fruit already. :) They will be removing all tubes and lines today except for oxygen and her pacemaker, which will make it easier for us to hold her, feed her, etc. She is returned to on demand feedings, including baby food. Sooo she has had a bottle and a little bit of carrots this morning. Carrots because they are her favorites! :) Her heart rhythm seems to be attempting to return which means that the possibility of a permanent pacemaker having to be placed next Monday is a little bit more remote. Not impossible. But her heart just gave us a little more hope that it won't have to be placed at all.
What a miraculous turn around we have been given today! An absolutely awesome gift!

On Saturday when things were at their worst, I tried a thousand times to hand my fears to God. Every single time that I bowed my head, I had no words. My heart simply skipped and shuddered and my voice stuck on the huge lump in my throat. All that my heart and mind seemed able to say was, "Oh God." over and over again. My mom says that sometimes those are the very best prayers.
I still have to work hard every day to silence those mommy fears and hand my baby to Him. But days like this show me why it's necessary. :)

Thank you, God, for hearing the prayers of my heart even when I can not find the words to speak. Thank you for holding my precious girl in Your hands, even when I fight You to try to hold her in mine instead. Thank you for healing her by guiding imperfect people to perfect moments of shining brilliance. Thank you for Your grace, which forgives me my doubts and fears. But most of all, thank you for giving me this beautiful creation.....


  1. Yay!!! Amazing how I can love a baby I have never met! :-)

  2. Weirdly enough it happens a lot with Liddy! :) She's quite easy to love, that's for sure!!! BTW your baby is equally adorable!

  3. You should look up on Youtube, Better Than A Hallelujah. It is by Amy Grant. http://www.youtube.com/watch?v=lD_pCr_Xrnc

    Describes exactly your prayers of moans, groans, and utters of which God turns into a blessing. I love you. I love Lydia. Thanks for sharing.

  4. I love that Liddy too! I believe when you pray for someone, you love them :) She is my newest heart hero and I'm so glad today is better!

  5. My husband and I have been praying for your sweet little Liddy. So glad to see she is doing better today. Annie is my sister, and has been keeping me up to date on sweet sweet girl.

    p.s. I love her hair, could be the hair dresser in me, but it's pretty fabulous!

  6. We're praying for Liddy and checking your blog daily for updates. Thank you for taking the time to support us in 'Graceland' while you're going through all of this! You have our support as well.

  7. Oh Heidi. We are praying for you guys constantly. So happy to hear that things are heading in the right direction. Thank you so much for updating us on sweet beautiful Liddy!


Yes, I read every single comment and I love them all! Please leave us one (and imagine me doing a happy dance when I see it!)