I've written this post several times, trying to express what I want to express--but it's been difficult. This week has been bitter sweet. The sweet news is that Brynn finally moved off the ventilator. The bitter news is that I had no idea what a long, awful ordeal it would be and how difficult it would be for me to watch my daughter go through it. However, I guess the other good news is, I’m learning a lot of life’s important parenting lessons.
To make a long, frustrating story a little shorter, Brynn has gone from the vent, to the CPAP, to the BiPAP, to the high-flow nasal cannula, back to the BiPAP, and again back to the CPAP. Each of these different breathing machines offers a different kind of support and all the switching back and forth was the doctors’ best effort at keeping her off the vent.
Because the mask for the CPAP an BiPAP (same machine, different settings) has to be really tight in order to keep a good seal for the air, the staff regularly changes out the actual point of entry for the air from the mask to the prongs. This way, her sensitive skin gets a break from having the same pressure points that would otherwise become very raw. This first photo shows the nasal prongs (and her tiny binky):
And this photo shows the mask:
Here, you can see that Brynn is not too sure about this new thing on her nose:
Here's Brynn holding Daddy's finger for comfort on her first traumatic day with the CPAP/BiPAP:
This photo shows the high-flow nasal cannula and the IV in her head for antibiotics. Don't worry, the IV's not as painful as it looks and she was actually VERY happy on the cannula:
Gratefully, as of the time of writing this blog entry, she’s at least remained on the CPAP (even though she cooperated better with the cannula, it didn't give her quite enough support). Even with the extra support of the CPAP, though, she’s still really on the fence. Her lungs continue to fill with fluid and the doctors are confused as to why. So far, we can only guess that it has to do with one or more of the following factors: one, she has contracted a new case of pneumonia, which is creating a lot of mucus in her lungs; two, she still has the PDA, and although it’s small, PDAs are notorious for distrupting the flow of blood and filling the lungs with fluid; and three, she’s been on the vent for over 6 weeks and she simply has bad lung disease.
Unfortunately, in order to treat her, the doctors need to know which factors, or combination of factors, are causing the problem. But the only way they can know for sure is through the process of elimination. And since each treatment comes with rather large negative side effects, they’re nervous to just guess and cause further trauma for no reason at all. The PDA will require surgery, which can (obviously) increase the risk for new infections, cause major setbacks, and require her to be on the vent even longer. But the lung disease will require steroids, which may cause long-term brain damage, and will certainly suppress her immune system and make her pneumonia more dangerous.
Since the side effects of the surgery are more extensive and worrisome than the side effects of the steroids, they decided to rule out the lung disease as the first contributing factor. After starting the steroids on Saturday morning, her lung X-ray looked better so we’re encouraged that we might be on the right track.
That sign of hope, plus the fact that today marks 4 days since she’s been off the vent (3.75 days longer than I thought she’d last) makes us feel like among all this confusion, we’re still getting good news.
However, aside from all the ups and downs, this week has mostly been hard on me as I learn to be a parent. Let’s just say Brynn's first day off the vent was not pleasant. I will not attempt to describe how much she hated the CPAP and BiPAP—not only because I really don’t care to remember it (as if I had a choice), but also because there’s no point in creating such an awful visual for the rest of you. It will suffice to say that she was the most miserable, angry, uncomfortable, and inconsolable I have ever seen her. Breathing was even harder for her than during her very first week of life.
Because nothing the nurse could do was helping Brynn to settle down, she thought perhaps a Kangaroo hold would ease my little one into sleep. I eagerly obliged, but again, was totally unprepared for the emotions that would come.
When Brynn cried on my chest for the first time in her sad, hoarse little voice (I haven’t heard her voice for six weeks since the vent tube obstructed & damaged her vocal chords), I was flooded with the feeling that she was actually a real baby and I was actually a real mother—complete with the overwhelming realization of what that responsibility entailed.
Not only that, but I also felt flooded with the instinct of a mama bear. I think if I’d had any less self-control, I would have tucked her in one arm, barreled out of the NICU on the other three limbs, and foamed at the mouth toward anyone who tried to stop us. I wanted so badly to rescue her from her frustration and became equally frustrated, myself, that I couldn’t.
I suppose that’s when the lesson came, though. Well, not in that very moment since it took me a while to process all my emotions; but it definitely came after I had some time to reflect.
I know God is our Father. I know we are His children. I know He lets us suffer so we can fulfill our greatest potential.
But I never, never, never realized how hard it must be for Him to watch us struggle. Whereas I didn’t have any power at all to rescue Brynn, God does have the power to rescue us anytime He wants. And you can bet that if I’d shared His capabilities, I would have done anything in the world to take Brynn’s pain away, even though I know her struggles are a necessary step in her graduation from the NICU. It baffles me that God has the strength to refrain from using His power to save us—or to refrain from forcing us to do something He knows is good for us. He really must love the greater good even more than He loves us.
I’m grateful He does let me struggle so I can become stronger; but I only hope I have the strength to be an effective parent for Brynn like He is for me--especially when I do have the power to help her but shouldn't.
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