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A Lovely Day: July 26, 2012

July 27, 2012

I am thrilled to report that Oliver had a boring day! Big events included a sponge bath and changing his sheets. As you know, this is out of the ordinary for our little Drama King and I loved every minute of it. My mom gave me a hug and said I didn’t feel as tense as usual. Although now I felt exhausted to her instead. Tired is better than scared. I can take tired. I can SOLVE tired! The atmosphere around Ollie today was pretty optimistic. Lots of smiling. He’s still not out of the woods but he’s much closer to the edge! Now I’m praying he continues in this direction.

His left side is still pretty full of fluid, so they’re going to try to suck some out tonight instead of just letting it drain, which will hopefully result in some improvement on the ventilator. We’re still at 40-5-45-15 with a goal of 25-5-0-10. They tried taking his catheter out today but he didn’t wet any diapers so back in it went. He’s being weaned off the fentanyl and was SO awake today, it was fabulous. He had an ultrasound today. They used to give him extra sedation first and he would still desaturate. Today he was turned on his right and on a wean and STILL he tolerated it. He’s a little super hero.

Poppy continues to be our rock. I don’t know how we’d do this without her. We wake up as a family and put her to bed as a family and it brings this lovely sense of normalcy to even the most challenging day. We take turns spending the morning and afternoon with her, usually switching at lunch. Which means we both get some serious play time in and it forces us to be happy. She is such a blessing.

Ramsey is a super cool CDH warrior, his mom posted this story on her blog and I think it’s perfect. It gives me a really peaceful feeling about all that Oliver is going through, he has certainly unlocked a lot of love.

The Brave Little Soul
John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you”. God and the brave soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

The Original Post

My amazing little Ollie

He’s got a pretty serious grip now that he’s awake

Lovely new bedding



From → Uncategorized

  1. Sarah permalink

    So happy to read this!!!!

  2. Joan Tyler. permalink

    What an impressive story for sure…..however I am overjoyed that our hero Ollie is fighting with good results….more prayers…. keeping us full of hope, thanks to God for all His blessings !!!

  3. Nadya permalink

    I’m soooo glad to learn Oliver is doing better!!! Love that picture of you with your “amazing little Ollie” Alex, you are amazing too. And not only you’re amazing, but just so beautiful…very pretty smile πŸ™‚

  4. SO happy to read this! Thank you for sharing such a beautiful story. Love his big brown eyes. He has been the cause of so much love πŸ™‚

  5. Mom of two permalink

    Way to go Ollie!! Keep on fighting!

  6. Susan Kwolek permalink

    So happy for all It looks like he is blowing you a kiss in the last picture!!!

  7. Kate permalink

    yay to a boring day.

  8. Vanessa permalink

    Yay Oliver! This post just made my day. Oliver, let’s get out of these woods already!!!

  9. Celia permalink

    Oh how alert he is today! Yay for weaning off the fentanyl! I’m so happy to read today’s update. And the story at the end is just perfect and so so true.

  10. Sarah permalink

    Ollie has the most beautiful eyes! Alex and Tim: you two are some of the strongest people in the world. We are forever keeping you in our thoughts and prayers.
    Thank you so much for sharing your journey with us. We’re with you everyday.
    lots of love your way
    Sarah, Matt and Sylvia

  11. Annie permalink

    Almost 8 months ago, I took my Mt Sinai NICU baby home. I was so excited, I RAN out of the hospital. His birth wasn’t my favourite day; it’s when he came home that it was! I pray that your little guy heals fast and that all his tubes are taken off one by one very soon. I remember thinking how each thing they removed was a relief. Take care!

  12. Asia permalink

    Adorable. I am so glad things were good today.

  13. Alex Mac permalink

    His eyes look so awake and alert and well rested! So much love and positive thoughts.

  14. Touched by your story permalink

    Wow. This stranger of a fan from out in FB-land is still in awe of your family, your Brave Little Soul and your message from G-d. Little Ollie was most certainly put on this earth for a bigger reason, and he is indeed fulfilling G-d’s wish already. What a guy. An angel from heaven bringing the love out of so many people’s hearts – and showing them how to set their priorities straight. Please G-d, continue to bless this Little Brave Soul and his family, and please keep him progressing towards a speedy and full recovery! Like I said the other day – I for one will never stop praying for him until he is discharged home!

  15. lyn permalink

    Thank you for sharing such an inspirational story. It was truely touching. Ollie looks so strong and well rested today!! Praise the Lord!

  16. Amazing. your post today brought a big smile to my face and calmed my distracted mind. I LOVE uneventful days at the hospital. Unveventful and boring, are beautiful , amazing, perfect days. Hugs to everyone. What a sweet little man that Ollie is! I blogged some love about you guys the other day πŸ™‚

  17. Great news !! Praying for the little guy

  18. Audrey permalink

    I’m rooting for your little man…keep fighting Oliver!!

  19. Tanya permalink

    oh my, seeing those big bright eyes just tickle my fancy!!! Atta boy Ollie!!

  20. Rinne permalink

    Also reading due to a Facebook friend. I am praying for your little Ollie and was very happy to see this post today!

  21. Wonderful news about your gorgeous Oliver! YAY. And those bedsheets are sweeeet πŸ™‚ (hugs)

  22. Anne permalink

    Love hearing this news, your blog has become a morning ritual, and then we pray for a good day for baby Oilver . Keep fighting! God bless

  23. Cheering for Ollie! permalink

    I love how he’s looking at you in the first picture! Such a wonderful post…keep fighting, little dude!

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