We’re Going Home!

LHSC(Our home for the last five months)

Yesterday we sat down with our team — infectious disease doctor, nurse practitioner, occupational therapist, nutritionist, and at-home care coordinator — to talk about going home.

We’ve been in the hospital for almost five months with Felix (since December 4th). We’ve been through torment, we’ve been through tedium, we’ve been through renewed hope and joy. And for the last month or so, Felix has been doing really well. We’ve become more and more hopeful for his future.

We talked about visiting nurses. We talked about his injections and IV meds. We talked about feeding and infection control and emergency protocols. We talked about the long-term plan.

We have a discharge date and time: this Monday, April 27th, at noon. We will be walking out of the hospital room that has been Felix’s home for the last four months. We will leave behind the gowns and the masks and the gloves. We will touch him with our bare (though frequently-washed) hands for the first time since he was a skinny little newborn.

We will still be living in isolation when we get home. No visitors except for the nurses and grandmas. No Lydia. But we will be close to our friends and family. Only eight minutes away from our little girl rather than two hours away.


I can hardly imagine life with Felix outside this hospital room. What does he even look like outside these four white walls? I can hardly imagine life without nurses coming in and out to check on him every couple of hours. We’re going to be in charge of his bottles and medication. We’re going to be his full-time caregivers. That’s a scary prospect with a normal baby; it’s a terrifying prospect with an immune-deficient baby.

We don’t really know how we’ll do things with Lydia. We kind of don’t even want her to know we’re going to be living at home, because how crappy would that feel, knowing your whole family was living at home without you? But how can we get around it? We hope to spend time with her outside the home — at the grandparents’ houses, at the park, at the library.

I’ve seen my house once in the last five months. I don’t even remember how my bed feels.

I’m so excited to be the master of my own kitchen again. That might be the thing I’m most excited about: cooking. Being in charge of what we eat. I can’t wait to not eat cafeteria food again. And although the food and generosity of the Ronald McDonald House will leave me eternally grateful, I’m happy if I never eat mass-produced pasta and caesar salad again in my life.

I wanted to let you know ahead of time, because I imagine we’ll be really busy for the first little while, getting settled back home. This is not a life we ever expected when we got pregnant with our second child.

We’re so grateful to be taking our precious baby home. Thanks so much for your ongoing prayers and support.

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  1. We are so excited for you! We’ll be praying!

  2. Taking a newborn out of the hospital is so weird. I’m sure this will be even more strange after so long. So happy for you guys.

  3. Yay yay yay yay yay!!! Such wonderful news. I’ll be thinking about you all during the transition. Best wishes with the decisions about easing the transition with Lydia.

  4. So happy for you!! It’s going to be an adjustment, but hopefully a good one. Sooo glad Felix is doing well.

  5. <3 And HUZZAH!

    Praying, always.

  6. Best wishes for your transition to home life, what brilliant news :)

  7. Awesome! I’ll keep praying!

  8. I know I don’t even know you, but I have been following your blog and praying for you and Felix and your family. Reading this brought tears to my eyes-feeling only just a fraction of your joy and fear. Much grace and peace and protection be on you all as you go Home!

  9. SO delighted to hear this news. Prayers all the way.
    Laura @ Mothering Spirit recently posted..what we hold tight & what we let goMy Profile

  10. How wonderful! Prayers for this next phase of your journey!

  11. Continuing to pray for your family! Praise God for this news!!

  12. Such great news! I am rejoicing with you, and I will be praying for wisdom for you with Lydia.

    juanita recently posted..My Grandson!My Profile

  13. What wonderful news! Continued prayers for an easy transition and for the comfort of home to envelope all of you and aid in Felix’s healing. Thanks and glory to God!

  14. Coriander says:

    What joy and excitement! What trepidation! You’ll work it all out! How wonderful to go home with your little fellow and to be so close to your Lydia! I hope and pray for a quick settling in for you all! And ahh! Your own bed! Your own food! Your own front door! I thank God for His help for you!

  15. Coriander says:

    And finally being able to hold him with your uncovered hands, with no gowns and masks! Woohoo! I can’t imagine how thrilling that will be! His soft little baby hands in yours! How wonderful!

  16. I’m so excited for you all. And I’m praying. You and I have never met but I read your updates the second they hit my inbox. After reading your last post, I prayed as hard as I know how that you could feel Jesus sitting beside you that very minute. I hope it worked. :) I know you are scared. Who wouldn’t be? But you are so strong. I know Lydia will be excited to be able to see more of you. It may be hard for her but time will take care of it all. Praying Felix blossoms in his home!!

  17. This is so wonderful! Prayers for you all as you work through the details!
    Marissa@BecomingKindred recently posted..Penny at a year oldMy Profile

  18. So happy for your family! Will be praying for the next bit of your journey together.

  19. Wonderful news, indeed! So happy for Felix and all of you!

  20. An anonymous friend says:

    So happy!!!! And still praying for you all!!!!

  21. this brought tears to my eyes. so happy for you all kathleen. continued prayers, as you mention, since there will only be new challenges. but this is a major step in the right direction!
    alison recently posted..A completely frivolous post about hairMy Profile

  22. Yay!!!!!! Praying for a smooth transition.

  23. So thrilled to read this latest update. I will continue to pray for your family and this new transition. <3
    Michele recently posted..Night Weaning – The Key to Fertility?My Profile

  24. PRAISE GOD!!!! SO happy I saw this right before your anticipated discharge so I can pray for you guys. Congratulations!!

  25. Fantastic news! Wishing you all the best and will continuously pray for you and Felix’s health.

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