TinyBreaths

How tiny breaths teach us big things

Firsts and Lasts: Part 2

I think we’ve finally hit our stride at SFMC, though it took a bit of time for all of us to adjust. It is wonderful to be home, but it’s a bit like I’ve been away in another world. A friend asked me the obligatory “How’s it feel to be home?”, and I’m sure was somewhat surprised by my answer. The truth is, it’s crummy right now. While living in Denver, my priority was only to care and watch over Struthers (and occasionally feed myself too). Now at home, I still have the opportunity to be right at my son’s bedside all day long, but there are other priorities I know in my head I should take care of while Struthers is in fantastic care. So now there is a daily choice…and it’s a difficult one. Because while I know in my head that NOTHING ELSE matters, not the nursery, not the mail pile, not the dishes, it’s impractical and perhaps avoidance for me to sit by Struthers’ bedside while he sleeps all day long. Perhaps God knew I was going to need this transition point. After all, I will transition back to work in just a matter of days (date TBD). For now, I have the opportunity to be home and get a few things done, but still also spend a good chunk of everyday with Struthers. All in all, we are adjusting well to the move…though sometimes it seems weird to just do normal things like prepare and eat dinner at our kitchen table, or watch TV together at night, or go to church together.

Update on Struthers:

–10 weeks old today and 5 pounds, 2 ounces! But he’s still 3 weeks away from his due date…

–The move to altitude has really wiped him out, but I’m glad we did it now while he still requires hospitalization. He still has alert times every now and then, but they’re not quite as often as they were in Denver. So he sleeps hard most of the day, not unusual for any newborn, really.

–After an attempted wean last week, Struthers is back up and remains on 3.0 LPM of high-flow oxygen. To put this into context, he was on 1.5 in Denver. But again, altitude is tough for anyone to adjust to, and a preemie with underdeveloped lungs is no exception. The medical team is happy with where he is right now, and says it will just take a little time. I’m glad they aren’t pushing to wean too hard because I’ve seen him slide backwards a few times when he just wasn’t ready.

–The high-flow oxygen makes it difficult to swallow, so we haven’t pushed the oral feeding too much. One of his therapists gave this illustration: Try to hang your head out of a car while going 60mph. Open your mouth against the wind and try to swallow. That’s what swallowing (already an unfamiliar and new concept) while on high-flow oxygen is like. So essentially, when Struthers is cueing to eat, he has to coordinate not only suck, swallow, breathe (difficult for all newborns), but also block off his airway to do so without inhaling the sustainance.

–That being said, our little superstar insists on occasionally trying (he has a stubborn independent streak), and sometimes does well (he took 30 mL by bottle a few days ago!). The times he does not do well are scary and devastating to mom, who generally is holding him and trying to feed one way or another.

Firsts and lasts:

–First time Eli and I both walked into church was last Sunday! It felt weird to walk in without our son, but at the same time, so refreshing. My facebook post said it all: “So blessed and grateful for this church family that make it feel like it’s not the first time walking through the doors since October. They have been so present when we were not. Now trying to be present with God and His.” We look forward to worshiping with this family in the weeks between now and Struthers’ discharge, and to a lifetime of worshiping with our son thereafter.

–While at church, we ran into a friend (I had only met her once really) who had a daughter born November 18, four days following Struthers. This is the first time I’ve seen a non-preemie since Struthers was born. And I don’t guess she’s particularly big, she was 6lbs something at birth. But she looked and felt HUGE when all I was used to was micro-preemies. And my mind trailed off to realizing that Struthers will be in the same grade, in the same Sunday School and Awana class with her. It’s frightening yet also comforting. The parents of all his little friends have been praying for him since before he was born!

–In October, we purchased a new stove for the house, and I was so excited about using my new double-oven…many jokes ensued about the Bun in the Oven, but the truth is I didn’t even get to use it before I was admitted to the hospital! And while I was in, we also had to purchase a new dishwasher. So…now that I’m home, both of these are a lifesaver. For the last three months, it has been insult-added-to-injury to handwash my pump parts. So now the dishwasher is getting broken in and I’m letting the skin on my hands and my morale recover a bit!

–Struthers has grown out of his first cute little preemie clothes! So if you get tired of seeing photos with him in the same outfits, it’s because I’m already sad for him to outgrow some of them and I just need to see him in them one more time! I’m trying to think of something cute and creative to do with some of the favorites. Others will be donated to the NICU’s, passed along to friends with tiny ones (so thankful for those that parted with theirs and sent them to us), and perhaps an outfit or two provided to the nieces’ Bitty Babies.

–One of the physicians used a term I had heard frequently in front of Eli this week: “Chronic lung disease”. It sounds scary, and it certainly can be. Struthers indeed has chronic lung disease, but he should outgrow its severity over the next few years. Until then, we just have to trust that God is working his miracles at His own pace in our son. Oh, the irony…

Your continued prayers are greatly appreciated!IMG_1611

1 Comment

  1. Cami Bremer

    May 5, 2016 at 8:50 pm

    Comments imported from CaringBridge (12 comments):

    I always love reading your updates and your feeling about all that you are going through! God Bless Strut and your little family! I am praying for you all every day!
    —Susie Short, January 26, 2015

    Cami love the updates thank you so much. I share them with Gran and Pops so keep them coming. Much love and Shalom
    —tina thomas, January 24, 2015
    Thank you for sharing your journey with all of us who are praying for your family. You are teaching us that everyone’s walk through life is different. Yours is a blessing.
    —Ina Hopkins, January 24, 2015

    Wow! What a life you are leading! And hand in hand with Jesus… We will be watching and reading and praying!
    —Don and Brenda Adams, January 23, 2015

    Dear,Dear Cami, Eli and Struthers! I haven’t commented much lately because of the memories that come flooding back as I read your odyssey. The gains and losses, the tension and the joy, and the love and thankfulness. Prayers, strength, and continued blessings for you all.
    —Judith Jergensen, January 23, 2015

    Continuing to pray for you guys.
    —Michele Bremer, January 23, 2015

    Oh, Cami, I continue to pray for Struthers, you, and Eli. How special you are to me! Indeed, God has a special plan for all of you. He is in the middle of this for sure. Sending you a hug…..(((0))) Love you!!
    —Joan Burns, January 23, 2015

    Still praying and thinking of you
    —Ann Alvis, January 23, 2015

    As always, well written. Struthers is definitely a miracle. We can all use him as an example when teaching Sunday school and other church functions. So happy for you and Eli. Love you.
    —Joy Breeden, January 23, 2015

    Thank you for sharing so many details, Cami. We have all learned so much from them. Struthers outgrowing clothes…the most exciting news. Awww…still lots of prayers to help you all overcome the challenges. Take it easy going back to work. Hugs.
    —Catherine Rice, January 23, 2015

    Cami I really enjoy reading your updates. Y’all are still in our thoughts and prayers. Love you.
    —David Summerall, January 23, 2015

    Keeping up with you and sending prayers. Jean Satterfield
    —Jean Satterfield, January 23, 2015

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