I have received some sterling advice over my weeks in the NICU.
And I have proceeded to ignore it. To my detriment.
Because I thought Becky was going home today. I was so sure that Mom and I packed our things. Last night we made a trip back to the house to begin organizing the mountain of supplies for Becky and to unpack the accumulating items from almost a month in the hospital.
But Becky is not going home today. And maybe not for several more days.
My sister, who cared for her niece through her lung transplant, cautioned me not to prepare for discharge until the papers are in hand. She learned, after much disappointment, that sometimes the last few details can take the longest. So she and Martha didn’t make active preparations until discharge was finalized.
The other piece of advice came from my parents’ good friends who have cared for their special needs son for decades now. I received a poignant email from them after we learned Becky needed surgery. During those difficult days, I reread this email, trying to let their wisdom soak into my neophyte mind. A couple tidbits:
The road to healthy is almost never a continuous progression of incrementally good news.
Over time, we improved at moderating our responses to any news, good or bad. We learned that things would likely not always go for us or against us – it would be a mix.
We focused on longer trends. We still struggle from time to time, but we rarely crash and burn like we used to.
As I write this morning, I am beginning to understand the advice. Composed. Full of wisdom. Straightforward. And I need their advice because I’ve never won an award for Emotional Moderation.
So, we move on from the wisdom soaking into my neural pathways to the situation on the ground here in the NICU.
I have a wonderful nurse today. Really sharp and on the ball. I hate her.
I called early this morning to request that I hang the 8am feeding. Nurse Wonderful (and she really is despite the below ranting; unfortunately, she showed up on a bad day) forewarned me that Becky was most likely not going home today. She has continued to lose weight despite receiving fortified feedings. She is struggling to maintain her temperature (not terribly surprising for a cardiac baby). And there are now some concerns about her thyroid function.
I was devastated. Full of tears as I left my Mom. And I immediately turned to music. Because sometimes a piece of music captures my feelings better than my words. If you want to tap into my emotional state this morning, listen to Beethoven’s Symphony No. 7 in A Major, Op. 92:II.Allegretto. In a dark, cold room. Alone. And crank the volume. You will feel my disappointment and frustration.
This piece was used in the climactic scene of The King’s Speech. It is a profoundly moving scene set to Beethoven’s dramatic score. I hope you don’t find me cavalier for even remotely suggesting that my situation can be compared to the entry of Great Britain into World War II. But we are in the middle of our own battle here.
But back to Nurse Wisdom who was trying to comfort me. And she told me that Becky is a blessing. And that our family will love her like no other child. That she will be so happy and we will never be able to imagine life without her. And I desperately wanted to say, in the softest, kindest voice possible,
“Will you kindly shut-up?”
I really don’t want to hear about my blessing today. And I don’t need anyone to make me feel better about my special needs child. My blessing is stuck in the NICU struggling to gain weight and maintain her temperature. Her little heart fighting for every breath, every ounce. I just want a box of Kleenex and my computer so I can blog my thoughts instead of having a mental health incident at NICU Bed 16.
And, if I have learned anything, it’s the value of a silent presence. Like my Mom at the Ronald McDonald House. Sometimes we eat quietly without much conversation. But she is there. Just like so many of you who text and email and call. And I can’t thank you enough for your presence. A friend told me that she often doesn’t know what to say and is afraid to say the wrong thing. And I told her. Say nothing. Just be there. It is enough.
It’s not that I don’t appreciate people’s kind sentiments. It’s just not the day today. Not on the day when I foolishly planned to go home. Not on the day when Becky failed to put on weight despite extra nutritional support. Not on the day we were supposed to finish the NICU race only to find someone moved the finish line.
I’ve received about a thousand pieces of paper in the hospital. Pamphlets. Brochures. Booklets. One of my favorite includes a list of all the well-intentioned things people will tell you about your special needs child. And I have heard all of them. Because people are kind. People feel for my family. And they want to say or do something. I am so grateful for all of it.
But today, with this nurse, I just didn’t want to hear about my blessing and wonderful future.
And then I really lost it when she suggested that I consider rooming in with Becky over the weekend. “We strongly recommend that parents stay with their child in the NICU overnight. So you can practice with the feeding. And get used to changing her diaper and caring for her. And get some work with the Kangaroo Pump. After all, you will have to do it when you go home.”
A Mount Vesuvius of emotion welled-up within me, ready to cover this well-intentioned nurse, petrifying her right there in her tidy blue scrubs and nifty Crocs.
Tears of anger. Tears of fire.
And I wanted to SHOUT:
“I am painfully aware of what it takes to care for a newborn. And I have a pretty good idea what awaits me at home with Becky. Feedings that take 45 minutes every 3 hours. Pumping that takes me 20+ minutes, also every 3 hours. Administration of diuretics and vitamins. Mixing extra formula to help my struggling child. I’m rather accomplished with the Kangaroo Pump now and I get feed rates and VTBD. I’ve even figured out how to by-pass the system to more quickly flush the line. And impressed the nurse trainer who never knew this handy trick.
Oh, by the way, I may have changed a couple of diapers in my time. Unless it has changed in the last 6 years. I suppose it’s possible.
Now. Let’s have a little conversation about my life. Do you know what awaits me at home? Tell you what, sweet little thing, hang up that stethoscope and hop in my car. Field trip! You can have a front row seat to the Greatest Show on Earth. Except you won’t be sitting. Because you will need to vacuum. Or fold a load of laundry. Or run get some milk at Aldi. Oh, and could you go find the dog, he seems to have run away. Check next door. He likes to relieve himself over there sometimes to the ire of my neighbor.
And then you can run back in terror to the NICU with your new perspective and maybe not suggest to a mother of 8, who has been caring for her newborn in the NICU for approximately 12 hours every day, for the last 24 days, that she needs to stay overnight in order to gain some perspective into what awaits her at home. In fact the new endocrinologist who just came into my room said, ‘I’ve heard that you are a nurse.’ Um, no. But I could play one on TV.”
I grabbed my phone and fired off a text to my sister. And then to a group chat with my siblings. And my brother John responded with a fabulous video of his dog barking at pigeons. I think he just called me a dog and Nurse Wisdom a bird. I can work with that.
John also started shopping for a t-shirt that I could wear under my hospital gown, which would subtly express my raw feelings. After all, I want to be polite but I do feel snarky. I won’t share any of his findings. Because I know my folks read this blog.
And then God provided me the perfect image for my day. It flashed into my mind as I tried to work through this disappointment. Several years ago, a group from my YMCA class decided to run a 5K together. The finish line was on the track at a local community college. Running into the stadium, my friend saw a balloon arch and thought she was at the end. So she kicked it into high gear to finish in style.
But as she ran under the arch, she saw the runners continue to move ahead. Momentarily confused, it turned out the balloon arch was the beginning of the end. She still had to run another 400 meters to the finish line. We laughed about her mistake for a long time.
Well, I’ve made the same mistake in my own race. I am at the balloon arch. And the finish is close. But I’ve got to keep running. I just kicked it into high gear a bit too soon. Just like my sister and my parents’ friends cautioned me. Lesson learned.
Time to regroup. Dig a little deeper. Find another gear.
You know what? I don’t need a snarky t-shirt.
Photo by Natalie on Pexels.com
I’m going to buy myself a balloon.