Our Life Right Now


I’ve given a number of updates on Felix over the last few weeks, but I haven’t really offered an update on us and what we’re going through. I figured I’d paint a picture of our lives right now. Though of course the two are totally tangled together.

As I’ve explained, we’ve mostly been sitting through the waiting stage of Felix’s treatment so far.

Our first hope was that Lydia would be a match and Felix would be able to get a bone marrow transplant from her. So we had to wait for typing. When that didn’t work out, we had to wait for paperwork to go through for enzyme replacement therapy, as a short-term solution until we can pursue the next stage of treatment – either gene therapy or an unrelated donor bone marrow transplant. We’re still waiting for that to start. Then we have to wait and see how he responds to the enzyme replacement.

Meanwhile, since his diagnosis last month, the doctors have been closely monitoring him for any infection. Every time he shows the slightest sign of possible illness, he gets a flurry of tests and examinations, followed by various interventions (antibiotics, oxygen, feeding tube, etc). In the meantime, we are often waiting for results, doctor visits, further testing, examinations, etc.

We spend a lot of time in Felix’s room, both to be with him and to await news from doctors. We’ve also taken care of his feeding, both when it was by bottle and now that it’s through NG tube. We try to have at least one of us in his room at all times during the day. Often, we’re both in there. Waiting.

Our main activity, if you will, is coping. Felix still sleeps a lot, and doesn’t need much besides feeding, diaper changes, cuddles, and company. (He’s seven weeks old now.) So we don’t have a lot to do, though we feel exhausted most days. It’s tiring, waiting on tests and discussing life-or-death options for our child. It’s draining, spending time in a sterile room with a baby who’s tangled up in tubes and wires and attached to machines that beep and blink all day and night. It’s even tiring having to spend our days wearing masks and gloves and gowns.

We want to stay near him and nurture him. But we get tired of sitting around in his room, and we know we need to take care of ourselves, too. Trying to balance caring for our baby, ourselves, and each other is tricky. (At least we’ve totally given care of Lydia over to family. It’s one less thing to worry about.)

So when we can, we go out for nice meals. Often a nurse will agree to take one of his feeds and stay close to him while we’re out (most of them are absolutely lovely.) We watch a lot of TV while in his room. I like watching stand-up on the Comedy Network, and we’re re-watching The Office on a laptop on DVD. (A significant detail: we don’t have wi-fi in his room. So no blogging, Netflix, or social media when we’re with him. Which is almost all the time.) We try to keep in touch with friends and family online and keep them updated using computers in the Ronald McDonald Family Room. We try to get our minds off of our difficult situation . . . but feel guilty about leaving our baby alone in a hospital room. It’s a tricky balance.

Two weeks ago Ben and I started spending the nights in the McDonald House, together. Before that, we took turns or shifts sleeping on the couch in his room. (We still have to wear the gowns, gloves, and masks if we do that.) A couple of nurses had to talk us into letting them take care of him for the night. He doesn’t cry much, and they promised to keep a close eye on him. We give him his last feed at nine, put him to bed, and go across the street for night. I hurry back to him first thing in the morning. Ever since we started doing that I am much more emotionally stable.
Lydia visits on the weekends when either one of our parents bring her. Twice, she has stayed the night with us. It is both glorious and heartbreaking when she visits. I remember how very much I miss her.

Otherwise, we video chat with her about every other day. But it always ends with both me and Lydia crying, so it’s kind of hard to want to get started.

I haven’t seen my home or cooked a meal in over a month.

Our emotions go up and down depending on how Felix is doing. When he’s stable, I’m generally pretty content and life here almost feels normal. We joke around and get lunch and do laundry. When tests come back with scary news I spend the next 24 hours weeping, until I adjust to our new reality.

I still cry almost every day about not being able to breastfeed. Until this afternoon, I was still pumping every four hours throughout the day, just in case. But I just got confirmation that I will definitely never be able to breastfeed Felix. It’s just too much of a threat to his immune system. I’m still working through the emotions.

We have to take it day by day. If I try to think too far ahead I get anxious. We have no idea what’s in store for us.

Today was a hard day. Yesterday was okay, though. We’ll see about tomorrow when we get there.

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  1. Oh sweetie I’m so sorry about the BF news =( Prayers that maybe there’s another baby in the hospital who could use the donations. Thinking of all of your daily.

  2. Love you guys. Praying always.

  3. You’re in my thoughts and prayers constantly! I ache for you!

  4. My heart aches for you. I am praying for comfort from God and His presence to be very near in this time. He is a precious child from God may His presence hold you all close.

  5. We pray for you all everyday. When my sons spent some time in the hospital the hardest thing was to leave every night, but looking back it was probably the thing that helped the most, because I was better rested.
    Still continuing to pray!
    Ruth Anne recently posted..Last five favorite Christmas BooksMy Profile

  6. I can definitely relate to your hospital lifestyle and not being able to take your baby home, it is truly the hardest thing ever. Cole was 2 months early., and so we lived at the hospital for a while! It’s definitely hard to relate to the lucky ones who just get to take their babies home and I remember each time a baby got to go home I was filled with such jealousy!!
    I realize your situation is harder on a whole new level but I feel for you and in some ways can fully relate!!
    Will definitely be keeping you guys in our prayers!

  7. Thinking of your family and keeping you in our prayers.

  8. I’ve been rather out of touch with the blog world as of late and just saw this, plus scrolled through some previous posts. I wanted to let you know I’m praying for you and your family. Also, I can 100% appreciate the pain you feel at not being able to breastfeed. I would be devastated!
    Jennifer @ Little Silly Goose recently posted..Holidays at the new house part 1: Halloween 2014My Profile

  9. I don’t always comment because I don’t know what to say and don’t want to say anything to make it worse, but I’m reading all your updates, and praying for you, and crying for you. Hugs and prayers, Kathleen. <3

  10. Kathleen,
    I’m so sorry about breastfeeding. I can’t even understand it. Perhaps there is another baby who needs it like Molly says? Is there a way to volunteer for bone marrow matching as an unrelated person? I know I’m on the bone marrow donor registry in the US and I’ve been matched for a patient before, but nothing came of it. I’m sure there are so many of us who would go volunteer some cheek cells to help you if we knew how. Hugs and prayers.

  11. Jennifer Erickson says:

    Big big big big big big hugs. Every time I see him all I can think is that he is the sweetest cutest baby I think I have EVER SEEN, and I am totally not a person who’s generically into babies, heehee! Whatever the treasures for the world that are going to come out of this very trying time must be big and beautiful as anything to be worth this, but I have faith that amazing things are in store. Much love to you all, and blessings to all the sweet babies awaiting ERT.

  12. Sending heartfelt prayers.
    May the lord bless you all on this journey
    Thanks for sharing”…….sending love and faith.
    And may you recieve both a miracle and and the gift of wisdom for the many decisions along your path.

  13. My heart hurts for you. I don’t have any wonderful words of comfort. But if I were there I’d give you such a huge hug. xoxoxo.

    Are you allowed to have wifi in the room if you bring your own? Did you know that you can get a Wifi USB stick? Like this one: https://www.rogers.com/web/content/mobile-internet Could you use something like that??

    Also, do you have a mailing address either at the hospital or the RM house?
    Beth Ricci recently posted..Start the Year With an Herbal DetoxMy Profile

  14. We are praying for you every night! Thank you for keeping us all updated.

  15. You’re in my thoughts every day. I am so sorry for all of this and the sadness and uncertainty of everything. We are praying for your beautiful family. Kathleen, I can’t pretend to know what you are going through. I feel such heaviness about your situation and wish there was something more I could do.

  16. I am continuing to keep baby Felix and your family in prayers. I’m so sorry to hear of all the difficult news you’ve heard lately, including not being able to breastfeed and not having a donor match in your family. I’m glad (if I read older posts correctly) that you were able to breastfeed him in the very early days. That picture of him looking up at his daddy is the sweetest! A strong, hopeful image, so full of love and life.

  17. Hi Ben and Kathleen, Lydia and Felix,
    We are thinking of you and praying for you often. “The Lord is my strength and song.”
    Jake and Tina Fehr and family

  18. Hello Kathleen, just a note to tell you I am praying for you and Félix and family God bless you and strengthen you and carry you and keep you. With love from England x

  19. I wish hugs could travel. I am feeling your pain. Stay strong.
    Love and Prayers all the way from Dubai..

  20. Oh Kathleen! I just got caught up. I’m so sorry to hear everything you are all going through. My heart aches for you. I’ve been choked up since reading your first post with the news. I simply cannot imagine how hard this must all be on so many levels. We will be praying for your family and sweet little Felix now. I don’t know if there is anything I can do, but please let me know if there is something.
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  21. Felix is beautiful. Praying for all of you in the very trying situation. Cast your cares upon the Lord. You can trust Him.

  22. I am sitting every day in hospital with my 93 year old mother and think of you with baby Felix. I know God is with us all. My mother says that we are all part of his tapestry, with a thread that connects us all.
    Sending prayers as I sit with my mother in Adelaide, Australia

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