Yesterday, Brynn had her best day ever on her eating! She ate some of her three highest volume feeds right in a row! But I tried really hard not to get my hopes up because each time she goes forward, it seems a backslide is inevitable.
Good thing I didn’t get too excited.
Today, she’s very sick. She spiked a fever, went really lethargic and didn’t have the energy to breathe. She’s back on the BiPAP and its possible, if not likely, she’ll need to re-intubated for the vent. She’s also moved out of her crib and into a radiant warmer bed, where her temp is controlled by probes again and she’s not allowed to wear clothes. They stopped all feeds and put her back on IV fluids.
Matt and I watched as she went from being our happy, pink little Brynn to crashing as low as I’ve ever seen her go on her vitals—all in a matter of hours. I’d really prefer not to go into details.
I will say that we don’t know why she’s sick. All x-rays, blood counts, cultures, urine samples, and other tests came back pretty normal. She might have a virus, like the flu or RSV. Or she might have meningitis. We really don’t know.
The odd thing is, I just wrote the following thoughts yesterday—before she did so well eating, and certainly before the crash today. I am relying on these thoughts now.
Here is what I wrote:
. . . . . . . . . . . . . . . . . . . . . . . . .
Lately, I have had one particular question preoccupying my thoughts, and that is: just how “positive” should I be thinking? Do I want to think, “Today is the day Brynn will start sucking!” or do I want to think, “Brynn may very well never learn to suck. I should make preparations just in case”? On the other hand, maybe I want to think, “Brynn will learn to suck, but I have no idea when so today is just another day.” Now, I don’t presume that this post has any kind of conclusive answer that will work in all situations, but I just want to write down at least the things I’ve been mulling around.
We’ve all heard that positive thinking is good, necessary, and able to produce remarkable results if we can just stay focused long enough. Book after book has been written on the subject.
Then we’ve heard the people who say that realistic thinking is much better than positive thinking because then you don’t set yourself up for disappointment. If the future is uncertain, accept and expect the worst and then all good news will be a pleasant surprise.
Obviously no one advocates pessimistic thinking.
So which opinion is the best to apply in Brynn’s situation?
On the PRO side, thinking positive—no matter what—has the power to bring a lot of hope for tomorrow. It encourages me to look for other solutions when what I’ve already tried isn’t working. In short, it keeps me hopeful and thereby creates progress.
On the CON side, thinking positive can often lead to disappointment, discouragement, and despair. If, for example, I repeat in my mind that Brynn is going to start going uphill in her eating sometime this week, and then she doesn’t eat more than a few CCs, I feel really discouraged and almost tempted to be angry.
Positive thinking—no matter what—can also be down right ridiculous. If you haven’t trained for a marathon, you can’t make it to the finish line by positive thinking alone. Sometimes it can discourage you from taking action because you expect things to all work out with no effort.
On the PRO side of thinking realistically—for example, “I have no idea when Brynn will learn to eat or even if she will learn to eat,”—I am much less prone to disappointment. I am also realizing that my idea, “she will resume ‘normalcy’ as soon as she comes home from the hospital, if we can just get through these few months,” is bogus. She’s going home on an oxygen tank, where moving from room to room is going to be a several-step ordeal; and she’ll likely come home on an NG tube, which added to the pumping and calorie supplementation will also involve several additional steps. I’ve also come to realize that if she’s delayed with her oral motor development, she may have many, many more delays in our near future. Only time will tell. Even in the best of circumstances, where she really does reach total normalcy, that milestone may take 5 or more years of intensive, consistent therapy. That is the reality. I might as well recognize it and deal with it rather than sticking my head in the sand.
On the CON side, however, I feel as though I am lacking faith in the reassurance I have felt from God that she will learn and will eventually lead a normal, healthy life. I also am too quick to think Brynn isn’t really going to do any sucking and I put her back in her crib after only a few minutes of attempting. Sometimes, the ho-hum attitude really just limits her, instead of pushing her to work.
Is there a balance between positive and realistic thinking? Can I preserve the creativity and persistence induced by positive thinking while still maintaining an attitude of acceptance by being realistic?
I guess, for me, the answer has been found (tentatively) in the answer to another question. That question is: what is faith, really?
I keep thinking over and over again of a speech given by Dennis Simmons titled “But if Not . . .” He relayed a story about when he was a little boy, competing in a basketball game. After losing, he told his mother, “I don’t know why we lost—I had faith we would win!” He equated real faith with positive thinking alone.
He then goes on to tell the story of Shadrach, Meshach, and Abed-nego in Daniel 3:14-29. After King Nebuchednezzar threatened to throw them in a fiery furnace for not worshipping his idols, they exhibited positive thinking when they told the King, “Our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand.” (emphasis added). But they exhibited true faith, a perfect blend of positive thinking and realism, when they continued, “But if not, . . . we will not serve thy gods.”
The fact is, I don’t know the future. So I need to have full faith that Brynn will learn to eat and that she will eventually lead a normal life (just as Matt’s blessings said she would); but I also need to hold on to the “But if Not . . .” part of faith. God never said when she’d learn to eat and develop into a normal and healthy person. For all I know, it could happen in the next life, when she is resurrected just like Christ was. So, until it actually happens, I have to fill in the blank: “But if Not . . . then I will still worship my God, stay cheerful, and continue to believe this will somehow be for the greater good.”
I know He loves me. I know He has not forgotten me (or Brynn). And I also know he will bless us, if not now, then eventually. We will get there.
. . . . . . . . . . . . . . . . . . . . . . . . .
I figured it would be fitting to post those thoughts today. Even though my concerns have changed, the principles are the same.
One thing is for sure, though. It is going to take YEARS for me to feel like she’s out of the woods. You think other new parents are paranoid about their new baby’s well being? Try that times 10 . . . or maybe 10 million. I guess I’ll cross that bridge one little runny nose at a time, but not today. I’m already maxed today.
Another thing is for sure, too. I’ve heard some people were asking if I really liked having trials. The answer is, YES. This may very well be one of the hardest things I’ve ever passed through, but I can guarantee that I will be happier and more grateful for every day we get with our precious little girl than I otherwise could have ever felt. My future joy will be the direct result of my present pain, and I wouldn’t trade it all for a family full of healthy babies.
We will get there. I might even venture to say that we will get there someday soon. But if not . . . I love you all, I love my God, and I love my life.
PS New update: she's back on the vent and her bowels have stopped working. Please keep her in your prayers.
Noah's 5th Birthday
2 months ago