How Far We’ve Come

Felix 6 months

In the days and weeks after Felix’s diagnosis, I lost my desire to eat. Food just had no appeal. I remember thinking, Why bother eating. My life is over.

It’s been almost six months. We’ve come a long way.

To make note of our progress, Ben and I often remind each other of what horrors we’ve been through.

Remember when Felix used to projectile vomit after almost every feed? [Now he hasn’t thrown up a single time in months.]

Remember when he was hooked up to oxygen, an IV pump, and the monitor, so we could hardly hold him? How he used to lay in his hospital bed for hours and hours? [Now he’s just hooked up to a portable IV pump, which we can carry all over the room with us. He can roll around on the floor and sit in his Exersaucer . . . he can do all the things normal babies can do. Except leave the room.]

Remember when we tried tirelessly to feed him every three hours, day after day, and we could hardly get him to drink 1mL? And how we celebrated when he finally drank 20mL in one sitting? [Now he routinely drinks 100-120mL at every feed, and can go days without the feeding tube. He eagerly takes the bottle when he’s hungry.]


Remember when we were so worried because he wouldn’t look us in the eyes and still hadn’t smiled at almost four months? [Now he smiles almost every time we look at him. He’s a very smiley, interactive baby. He smiles the most at Lydia.]

Remember when we found out he had CMV and we thought he was going to die in the next couple of days? [Now his CMV levels are at 1% of what they were, and he is very much alive.]

We’ve come so very, very far. He’s growing and developing and bringing us so much joy.

We have a long way to go, but we do so much better when we glance backward at the awful place we’ve come from.

Turns out I still have lots to live for.

(Including this beauty:)

Lydia playing

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  1. Such good good news. Felix and your family remain in my thoughts and prayers. Thank you for the update.

  2. Beautiful. And hopeful and grateful. Thank you for sharing your journey with all of us.
    Laura @ Mothering Spirit recently posted..he is oneMy Profile

  3. Candace says:

    2 beautiful children! Your story puts things into perspective for me as well – most of us take too much for granted. Continued prayers.

  4. you are always in my prayers. So wonderful to know that you are blessed with his smiles. Makes it all worth while.
    Love to you and your family, especially Lydia. It is her journey too
    Great big hugs from the centre of Australia

  5. I am so heart-glad for your family! Many prayers coming from Florida for you guys! May God continue to bless and heal little Felix :-)
    Janie recently posted..Marmee DearestMy Profile

  6. Felix is just amazing.

  7. Ahh! I’m so, so happy to hear your news! I’m a frequent reader, but haven’t commented before. Just wanted to thank you for chronicling your journey on the blog. I always enjoyed reading your thoughtful posts about parenting and lifestyle before Felix was born, and it gave me lots to think about in my own family, but it’s been tremendously touching to read your recent posts. Thanks for having the courage to share, and just wanted to take a minute to comment and let you know how much your family’s unfolding story has meant. We’ve faced serious illness in our own family, although not in a precisely similar situation, and I remember how exhausting, overwhelming, and stripped down life becomes. I’m truly joyful to hear how well things are going at home :)

  8. Love this. Been following your journey. So thankful to see answered prayer for your family!

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