My High-Flow Adventure

From the desk of NYANA B.
Transcribed but not read

Hey! Did you guys hear!? I spent a whole ten days on high-flow! They took the CPAP hat off of me and I lost the scuba gear on my face and I had perfect peripheral vision again! It was awesome. Oh, and speaking of vision, did Mum tell you that after failing my last two eye exams and showing stage II ROP in one zone of one eye, I passed my most recent exam last week! ROP spontaneously corrected itself (as was hoped) and I don’t have to have another eye exam for four whole months! Yay me!

Mum and Dad loved the week I was on high-flow. It was so easy for them to see my whole face, and my personality really shone through without all that stuff attached to me. I was working extra hard to keep up though, without the pressures from the CPAP machine. Oxygen-only was awesome, but I needed about 10% more than usual (35% instead of 25%) for most of my high-flow trial, and by the end of Day 10 I’d collapsed some alveoli. So as much as I wanted to just curl up with my cozy blankets and get much-needed sleep, Mum and Dad, thrilled at how awesome I looked, were insistent on capturing megabytes of megapixels, whatever that means.

They took tons of pictures when I was as close to tackle-free as I’ve ever been. Nurse Awesome even moved my feeding tube to my nose, so for more than a week I didn’t even have anything taped to my chin! Here are some of Mum and Dad’s favourites. Oh, and Mum is apologizing to anyone on her FaceSpace if they’ve seen these pictures before. Apparently she jumped the gun and put these up there before my army had a chance to see them.

Goodbye CPAP

They just told me I'm being switched to high-flow! Yay! This CPAP hat is giving me a perpetual headache!!

Dad snugs

Daddy and I get some snuggle time in.

Daddy's girl

Now that the stuff is off my face, Mum says I totally look like Dad. I don't see it.

Pretty in pink

Mum has this funny thing about putting me in clothes that are way too big. It's like she's too impatient to let me grow into them. Strange.

EKG

I had an EKG done on me this week to check how my heart was doing. The doctors told me that sometimes the lungs work so hard it causes the heart to work harder, too, causing pulmonary hypertension. I'm going to have an Echo done soon to be sure, but the EKG says my heart looks just fine.

Daddy time

I love my two hours a day with Daddy. He's such a funny guy and makes me smile all the time. Dad's so awesome.

Tummy time

I really don't understand why Mum insists on this "tummy time" business. My neck muscles are just fine, thank you very much.

Naked tummy time

Even worse than making me endure tummy time is photographing me enduring naked tummy time. I swear, if these end up being shown on my wedding day...

Princess

I'm such a girl, I'll admit it. I just had a bath and was exfoliated and Mum rubbed lotion all over me. Then she put me in this stylin' outfit. My favourite part is the onesie. It says "I heart mommy".

As I’m sure you know by now, my high-flow adventure didn’t continue, and after ten days I was put back on CPAP. Just catching my breath and we’ll try again in a week or so. In the meantime I’ll keep working on lowering my oxygen needs (24-27% is good, but there’s a few more percent to get me to room air) and I’ll keep working on this feeding business—we’ve been able to cut my feeds to 45 minutes instead of 90, but we can’t quite get me down to half an hour without me puking. Not yet…

Thanks for sticking out this journey with me and my parents. I don’t want to be obnoxious and make my parents crazy but I know I can’t leave the NICU until I’m good and ready and that’s still going to be a while. All I can do is be as cute as can be for them, so hopefully my time here isn’t so terrible for them.

Oh, one more thing. Mum said you were all praying for my friend Neema. Can you please think extra good thoughts for her in the next few days? She’s fighting really, really hard but her parents have had some very serious conversations with the doctors and things aren’t looking so good right now. I’d even be willing to spend a whole ‘nother month on CPAP if it meant she’d get better. Just a healing thought from each of you would be awesome. Thanks, guys. I’m proud to call you all Nyana’s Army.

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11 Responses to My High-Flow Adventure

  1. Olivia ♡ says:

    That last bit made me tear up a little. Sending healing thoughts to Neema and her family!

    I love the pictures, btw….especially the one with her and Don and the expression on her face, LOL.

    🙂 ❤

  2. Jackie (jmm) says:

    I love it so much when Nyana “talks” to us and the pictures are so beautiful. You are all in my prayers with special angel requests for Nyana, Neema, and all the sweeties in NICU.

  3. tara says:

    You are just amazing Nyana. Growing so big and strong. Neema is in our prayers as well. Keep up the good work. 🙂

  4. Cyn Tyler says:

    How wonderful to hear Nyana’s take on her adventures so far. She is beautiful and amazing. Continued prayers for your family.

    My prayers go out to precious Neema and her family, as well.

  5. Tasha says:

    Beautiful pictures!

    Thinking positive thoughts for Baby Neema.

  6. LeeAnne says:

    Wow, she has grown so much! I love checking out her fashion! Prayer’s and positive thoughts for Neema and her family!

  7. Lynn Duncan says:

    Aww, Nyana, you must make your Dad so happy with those cute faces!

    And that is definitely a very cute hoodie outfit and you just rock it as if you were on the preemie runway!

    I know you will get rid of that CPAP again.

    I will join you and others hoping and praying for Neema, too.

  8. Duncan & Dorothy Gillies says:

    Hello Nyana, Don & Karen
    This is the first time you have heard from us. We are good friends with Grandma Anne in Ontario – but right now we are keeping track of your progress from sunny Florida..
    Duncan knows all about your CPAP and how it musses your hair and gives you a headache – he has one too, but it sure helps him sleep and muffles the snoring.
    What a miracle you have been and we keep praying that your progress will continue, so you can soon be at ‘home’ with Mom and Dad.
    Love from Uncle Duncan & Aunt Dorothy

    • Mrs. B says:

      Thanks so much for stopping by and saying hi to Nyana! I’m certain her CPAP hat gives her a terrible headache, I can’t see how it doesn’t! Hopefully you’ll get to meet her sometime fairly soon… we plan to come back for a visit before we have to buy a separate seat on the plane for her. 🙂

  9. Yay – I love it when Ny writes to us!!

    I also love her “I love Mommy” onesie.. so cute. I can’t believe how big she’s getting and how much she’s changing.

    Keep on, keepin’ on, Nyana!

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