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

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15 thoughts on “A Four Letter Word

  1. Rachel, I will be in OKC tomorrow. I wanted to ask your permission to visit. I know you must have so many people coming and going and I don’t want to add to the crazyness. If you wouldn’t mind another visitor, please let me know. My #405.880.2126. Love and pray for you guys regularly. Shannon

  2. She graduated?!?!?!!? I literally just yelled of excitement and kinda woke Tanner up. Oh sweet Audrey you are getting so big and defying all odds that have been stacked against you. What a courageous fighter you are and what a blessing you are to everyone around you. Your strength (and your parents) has truly shown me that God IS Good! Love you guys with my whole heart and I hope Chris has the best Father’s Day to his new little girl and his mini-me.

  3. Rachel….I don’t know if you remember us. We are Susan and Buster Simon. We had a women’s clothing store, Buster Simon’s, in Stillwater for 20 years and your mom would bring you with her when she came in. You were such a sweet, beautiful little girl, with those amazing eyes! I love reading your posts and so grateful for your sharing. I follow them closely and just wanted to say, “thank you,” and sending prayers for baby Audrey and all of you. What a gift you have, to be able to make your story jump off the screen. Our prayers will continue. You have made all of your followers fall in love with your precious “Bunny-Girl.” Take good care…..keeping the faith. With love. Susan Simon

  4. Precious Girls,

    After reading and remembering your Word for 2014, a gentle nudge lead me to His faith chapter: Hebrews 11. It starts : Now faith is confidence in what we hope for and assurance about what we do not see. The remainder of the chapter reminds us of the faith paths of believers throughout the bible. Plateaus and valleys test this thing we call faith and allow the tactics of our enemy to penetrate the fruits of the Spirit with fear, doubt, and worry. Today for you, I pray your faith will be renewed ten fold, You are doing a great job loving baby Audrey and Cooper and Chris and your family and friends. Today I pray that hope will renew your strength.Today I pray that His peace will calm your spirit. Today I pray that you will feel a supernatural joy in the sounds of your baby girl. See you soon precious ones.

  5. Rachel, When I became chronically ill I found “how are you doing?” a difficult phrase to respond to, knowing that for most people it was a habit greeting.
    What I’ve been doing now for the last ten years is to say to everyone I meet is “it’s good to
    see you.” A heartfelt greeting I feel.
    Love, Aunt Kathryn

  6. Since “fine” never is really a full reply for me these days and usually doesn’t apply, I’ve found
    that to say “well enough” covered so many levels for me. One of my teachers gave this
    phrase to me, so I could still be honest in my reply to “how are you” and not let the illness
    consume my day. Just different words can really help out sometimes.
    Love to you,
    Aunt Kathryn

  7. Dear Rachael, I pray for family as if it were my own. I’ve been following your blog and wanted you to know what strength, courage and hope you deliver to those who know you. After reading your posts I feel impowered to serve, help and give more than ever before. Just know… I think your my new hero of seize the day.

  8. Rachel, I am so happy Audrey has her own room and praise God for that sweet little grin. I bet that just makes your heart flutter! We are praying that she will take her bottle well and will continue to take more and more milk. You are doing an amazing job my friend! Thank you for your vulnerability. It means so much to me to know how you and Audrey are doing. Love you!

  9. Rachel, I look forward to meeting you face to face someday. We don’t know you or your family at all (except for visiting with your Dad on several occasions), but my husband, Lord willing, is going to be joining your father’s practice in a few months. Your Dad shared with us your journey, and your blog. We are lifting you and your precious family up. Thank you for sharing your story that God is so specifically writing in your lives, and using in other’s lives.
    In His grace and mercy.

  10. Rachel, what a beautiful, beautiful girl! She is going to have all the Leslie and Ebert men completely wrapped around her little pinky! You have such an amazing faith and love for The Lord, let Him replenish you sweetheart. Love and prayers everyday!

  11. Rachel EVERY single one of your worries are more than warranted and each of us would feel exactly the same way. You give us this gift of feeling it with u thru your writings. So whatever and however you’re feeling is fine, as we’re all right there with you, praying every step of the way.

  12. Thanks for keeping us informed in such a beautiful ways. We care so deeply for you and your extended families: Leslie’s, Ebert’s, Jamieson’s and Webber’s and know that the love and prayers of all family and friends are with you daily. I hope that peace and the miracle of life will sustain you through the coming days.

  13. Your baby girl is just precious. I pray for her, the doctors, and you all. You are doing a wonderful job even if you don’t think that you are. Today’s medicine is miraculous and so much more advanced than it was 70 some years ago when my uncle was born. The story’s I hear about his birth was that my grandmother should have had a C-section, and because she didn’t he has brain damage. Now this is not the same thing that your sweet Audrey is going through, but I just wanted you to know that with today’s medicine and advances your sweet baby is in good hands but even better HANDS because of your strong faith. Even though they didn’t think my uncle would live past his twenties, he is still here with us, I think because my family also has strong faith. My uncle is a precious 75 year old man with a love for balls, all kinds of them. So to me he is a miracle …of sorts. He has outlived his brother (my father) and both his parents. You all are an inspiration and believe me it is just great to be “fine”, because you lean on the mighty healer, the One that can help you no matter what you ask of HIM. Keep smiling and loving on your sweet gift 🙂

  14. I have been out of the loop since our move to Chicago a year ago. I came upon your blog in a roundabout way and have been praying for your family every day since. To me you are fine: Faithful Inspirational Nurturing Eloquent. Instead of showing how exhausted and frustrated you must be, you very positively and eloquently portray the day to day challenges faced by your family. You are an inspiration and Audrey is so fortunate to be born into your family.

  15. Rachel, thank you for sharing Audrey’s progress and for being so real. We are praying for baby Audrey daily and the progress she has made is incredible! We spent last summer in the PICU with my youngest, and although her circumstances were a little different than audrey’s the emotional toll was very much the same. One very wise doctor reminded us often to “hurry up and wait” That became our moto for awhile. It seems like that is what Audrey needs now too. Time. Time to grow, time to get accustomed to this strange new world of bottles and breathing and temperature regulation. Time for all the test results and much anticipated medical information to be drawn, so you know what the next step is, and time for her to THRIVE so that you can all go home and be together under the same roof! It was so hard to wait, and I hated feeling like I was wishing away that precious newborn phase. Praying for God to give you patience as you ‘hurry up and wait’ on all these things. Your strength is inspiring and your faith is so evident. Love and prayers!
    Lauree

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