A Four Letter Word

How often are you asked, “How are you?”

How often do you ask that question?

I would imagine one of the most commonly used descriptions of how one is doing is fine.

Agree?

It isn’t necessarily good or bad, it just…is. Or so I used to think.

Chris and I had a date with our daughter at the hospital this evening while Cooper went to a baseball game with friends. As we were wrapping up our precious time with little Bunny-roo, Trisha walked in. The timing was perfect. She stopped by our room to say hello and to check on things with the Leslie quad.

She asked me that question…those four little words, “How are you doing?”

Can you guess what I responded with? Yep, that four-letter-I-don’t-really-know-how-I-feel word: Fine.

I figured she would smile and move on. But already she knows me better than that.

“Hmm,” she said with a half smile, “Could you be Frustrated, Insecure, Neurotic and Emotional?”

Um, yes. I’d say that about sums it up a lot of the time.

Frustrated? Absolutely. I am frustrated with how little we still know about our precious baby girl and her health. I’m frustrated that she is having trouble taking a bottle. I could go on, but I want to avoid an unnecessary laundry list entitled “Woe is Me.”

Insecure? Sure. I’m no good at this. I already feel like I have failed 100 times in the past two weeks. If I thought parenting was tough before, it’s a whole new ball game now.

Neurotic? If I’m being completely open, honest and raw, the answer here is yes. Have you ever looked up the definition of neurosis? Overly sensitive, tense and anxious. Ask my shoulders if I am tense. And anxious? Let us all recall the time Cooper had to remind me to take a deep breath.

And finally…emotional. Uh-huh. Darn those hormones, they won’t leave me alone. Coupled with a teensy bit of stress and a sprinkle of exhaustion and I’d say emotional fits.

So, my answer to Trisha seems about right on par.

As I drove home, leaving our baby girl behind, I thought about being fine. For today, it’s okay to be fine. It’s true. It’s honest.

But in the midst of being fine, I have a heart that is, said a wise woman to me, “so full it is heavy.”

A heavy heart, I’m learning, doesn’t always imply hard or sad. A heart can be full of many, many emotions. Including happiness, gratitude and humility.

So I pivot my position. With intention.

This week, Audrey bunny has had a graduation of sorts. She has moved to
a different wing within the NICU. An area for babies who are on the path to becoming stable and closer to going home. We are still not sure how long she’ll be in the hospital, but this move is very positive. They are single rooms, so we have a private suite, or so we call it, in the NICU. For a moment, this made me feel a bit, well…fine. I wondered if she gets enough attention when we aren’t there since she requires less hands-on care. I wondered if she gets lonely or if she is heard when her weak cry lets out.

Stop. Pivot. She needs LESS hands on care. This is incredible! She is still on the nasal cannula needing some breathing support, but much, much less. She is digesting her food very well at each feeding and has made it to the goal maximum. She is inching closer and closer each day to being in a crib.

So many praises for where she is today. Here I take pause to be thankful. Your prayers are absolutely working.

The ophthalmologist came yesterday to do a very quick, 10-second analysis on Audrey’s eyes. He said they have the proper structure needed to see but he cannot tell us if neurologically her brain receives the message and she actually can see. We’ll see him at 3 months of age.

While she is digesting her food well, she needs to learn how to bottle feed. She remains in a very lethargic state, groggy, rarely opens her little eyes. She seems uninterested in the bottle. Tomorrow we hope to see the occupational therapist to evaluate what may be the culprit. Most babies come into the world knowing how to do this. Audrey is just having a little bit of trouble and is taking her sweet time. She’ll get there…she will.

A few have asked about her heart surgery. We have not yet met with the cardiologist. This will likely take place after she is discharged. We’re unsure any details regarding when it will take place and what recovery looks like. Count on us to keep you posted just as soon as we know more.

Regarding her brain, we still are waiting for her to be more stable before the MRI can take place. We know it will happen prior to leaving the hospital, we will then meet with a neurologist regularly.

We have not received the results from the microarray genetic test. These typically take a few weeks so perhaps next week we may know something.

I can tell you one thing for sure…she grins. She smiles. Big, gummy, beautiful smiles. She’s deep asleep but when we tickle her little chin or under her sweet lower lip, the most precious grin sweeps across her face and plants itself right in my heart. Her big brother did this all the time as a newborn. We have many photos capturing these moments. Such a gift.

Pray for her to take a bottle. To wake up, be alert and do well with a bottle. Pray that her temperature would regulate and stay above 98 degrees. We need her to breath better on her own. This comes, like most things with Audrey girl, with a lot of patience and a bit of time. These are some things that need to happen for her to be ready to come home. I know we don’t have to ask you twice, your thoughts and prayers are heard and God blesses this baby girl each and every day.

As I lay my head to fall into a sweet sleep, I yearn for my baby. A lump in my throat grows uncomfortably big as I fight to the death to keep tears from falling or a sob to escape. Night time doesn’t get easier. I dread pumping in the middle-of-the-night when the house is silent, the hour is late (or very early) and I wonder what Audrey is doing at that very moment. A moment I should be cradling her. A moment we should be sharing together, instead it feels like we are a world apart. I look forward to the day when our little family is whole. When we sleep under the same roof.

We’ll get there. This is a moment in time. This particular part of our story is temporary, but our love for our incredible children is not. It is forever. It is a lifetime and beyond.

I wish I could know what each of you needs right now. As you pray and think of our little one, how can I do so in return for you and the happenings in your life?

If nothing else, I pray that each of you, family and friends, would be blessed for your selflessness in reading this and supporting Audrey through prayer. That you would know how your love is impacting our family every day. That in some small way, Audrey’s story would play a role in yours.

I wish you could smell her sweet breath, or know the sound of her tiny sneeze, or experience the joy of watching her smile. Instead, see things like these in your babies, kids and loved ones and take a moment to cherish them.

Rest well and know you are appreciated.

Love and hugs,
R