The (Not So) Simple Truth

Maybe winter is just around the corner, but in my world, the days are getting longer. It’s been 52 days now since she was born—we realized last night that we’re now the whiteboard that the new parents notice when they look around. Oh, honey, she whispers, look at Nyana over there. She’s been here since the middle of September. They give each other sad looks and he rubs her back and tells her, Don’t worry, love. Our baby’s a fighter. We’ll be in and out of here in no time. We used to be that new couple.

Nothing much has changed in Nyanaland in the past few days—since getting her crib and her new breathing tube, she’s been mostly stable with just enough hiccups in her breathing to be sure we’re paying attention. I sit by her bedside all day and whisper sweet nothings to her and remind her that she’s allowed to be bad at just about anything in life—sewing, swimming, spelling—she just can’t be bad at breathing. And she just lies there, sometimes staring back at me, but mostly just sleeping, and often desatting.

We had a much needed conversation with an RT last night about her lungs and long-term prognosis for Nyana. It wasn’t pretty. We’re in a race against the clock, in a sense: we need her to grow and get strong enough for the lungs to heal, but she can’t grow too big that the increased respiratory demands become too much for her weak lungs. We’re looking at a tiny child who could come home from the hospital entirely unscathed, or who could lose this battle completely when she gets to a point where her lungs just can’t function any more. And between both of these extremes is a deep, scary grey area of a multitude of disabilities. While it’s nice to believe and tell ourselves that our babygirl is going to be perfectly fine, we need to accept the reality that there are many possible outcomes besides “perfectly fine”.

The respiratory therapist we spoke to last night said that he hadn’t seen BPD as bad as Nyana’s since the days when there used to be nothing that could be done for babies with chronic lung disease. Twenty or thirty years ago, a baby like Nyana had no chance of survival, and the best the NICU nurses could do for their tiny charges was make their lives as comfortable as possible as they waited for their lungs to fail them. Today, there are better therapies available, but every case of BPD is unique and there is no one course of treatment guaranteed to work. It’s obvious that our medical team is doing all they can for her, that I don’t doubt. I worry though if all they can do is going to be enough.

I won’t lie, I’m scared. I’m scared and I’m tired and quite frankly, a bit pissed off. This isn’t what we planned on when we set out to start a family. Don and I don’t deserve this. More so, Nyana doesn’t deserve this. And yet, here we are, and there she is. So we move forward, one foot in front of the other, every day one day closer to home. I tell myself that somehow the three of us will make it through this, and all that matters is coming out on the other side together. I’ve accepted that she won’t be home for Christmas—not even close—and am focused now on just getting her home where she belongs.

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About Mrs. B

Wife, mother, marketer--not always in that order. Lover of fine food, good company, and exceptional grammar. Mother of one former micro-preemie and one full-term monster baby. Building childhood memories in Vancouver's suburbs.
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4 Responses to The (Not So) Simple Truth

  1. Juju says:

    ((((Donners and Karen and Nyana)))

    Now, slap yourselves (well, the parents) and get out of that funk and go over there and get some positive energy going in the whole NICU, including the newbies who you know very well are scared shipless. Get them rooting for YOUR baby, and you send good vibes to theirs.

    I know it is tempting to treat them like you first were treated, but don’t you do it. You are the pros. Get the easy ones cycled out of there and thankful as can be. And make sure everybody who is around your very precious baby is sending good vibes to you and her.

    You got a whole lot of people out here who are doing the same.

    Peace out, and Smoochies.

    Juju

  2. Benton says:

    Karen & Don,
    I have to agree with what Juju says above. One of my favorite “life lessons” that have helped me many times over the years is this: “When the going gets tough, the tough gets going.” … I know what strong people you both are and Nyana is showing us each day what a fighter she is, so now is when we all have to band together and push those strong messages to Nyana. Positive thoughts and prayers are what we can give and they can make a difference. That’s how positive outcomes happen. It is understandable that you feel the way you do. It’s a tough road that you’re traveling … but Nyana’s worth it, right? Everytime I see her picture, she tugs at my heart strings.

    We all forget that, sometimes, when we need to stay positive the most …. that’s when it is the most difficult thing to do. I know for me, at least, that’s when I can always use a reminder.

    I have great faith in you, Don and Nyana. Maybe she won’t be home in time for this Christmas but that will make next Christmas all that much more special. Stay strong, as I know you both will, lean on us and all of your friends and family and remember that if you need the sound of a friendly voice, Sandra and I are as close as your phone … 24/7 … (just let the phone ring longer in the middle of the night …. gives me time to wake up and figure out who I am … lol) …. Love, Benton

  3. Biscottiii says:

    I ditto Juju and Benton. Your little girl is a FIGHTER and she’s choosing her own timing to jump out of the ring!

    Sending nightly positive vibes for Nyana & Karen & Donners.

  4. Lynn Duncan says:

    Oh she sure IS worth it all! And she has a huge fan club too.

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