Seeing Beyond the Doubt

Sometimes I am afraid to type the words. Each keystroke feels like a gamble…like a toss of the dice. I’m not particularly superstitious, but something about not only allowing myself to believe it is true, but then sharing the news with others makes me wonder if I might jinx it…

She’s breathing.

On.

Her.

Own.

In this moment, at this very second, she has no help…she’s doing it all by herself. For the first time since her birth day nine weeks ago today…every breath she takes is unsupported.

Sure, an ambu bag stands waiting in the wings, offering constant warning with it’s white noise effect of a steady rush of oxygen…but that’s just in case. She had a trial on Sunday with no support and it proved to be a bit too much for her. However, as of 3am today, Tuesday, she has been taking breaths with no nasal cannula.

We’re cautiously optimistic.

Clinically, Audrey Claire is doing well. Yes, her heart still requires a serious repair. We’ll get there, but she must grow. She’s about 6 1/2 pounds right now. Small..too small. But, she won’t take a bottle. We’ve heard several theories and opinions of why she may not be taking one, including:

1. She has oral aversion. Too much time being intubated with the addition of overall negative oral experiences (i.e. having her mouth cleaned, or her throat suctioned)

2. She is too weak. Her body has a high metabolic rate causing her to burn calories very quickly.

3. She is protecting her airway. Her body is telling her to breathe instead of swallow.

4. She is out of practice. She hasn’t had the opportunity or the desire to suck, swallow, breathe in a very long time.

5. She has been experiencing severe acid reflux which is painful and hard to recover from.

Take your pick because it could be any of the aforementioned reasons, or perhaps a combination of them all.

Eating…such a simple thing it seems. We’re born with the knowledge and desire to do so. Well, most of us. For Audrey, eating has been less important because her body is trying to survive other issues. Speech therapy has been working with and evaluating her for a week now. The team will give Audrey one more week. One week to show an interest…or rather, an ability to take a bottle. Should she make no progress, they may be forced to place a gastrostomy tube, otherwise known as a “g-tube”.

I have dreaded this possibility for what seems like Audrey’s entire life. I don’t want that for her…but really, I don’t want any of this for her. I know better though. I know a g-tube would allow her to get the calories she needs to grow, to get stronger to allow her heart to be repaired. They want to get her home…they believe babies thrive more in their home environment. They do not want her to continue to be hospitalized…that is, until the time comes for her next surgery.

We’re not there yet. She has a week, right? Chris says she needs a “pep talk”. Can you help? Write her your own pep talk, a prayer, a chant…whatever floats your boat. It has worked before, I believe it can work again.

Here’s mine:

Sweet daughter of mine,
Eat, little sis, please eat. Remember when you could? Remember when you did? Please remember. Prove the doctors wrong. Show them you can do this…because you can. You are breathing on your own, that is a victory. A mountain you have climbed, an odd you have beat. I have watched you take a bottle, I have helped you with my own two hands. Do it so you don’t require  another procedure, another risk of infection. Do it so you can further strengthen your title of “Fighter”. Do it so you can come home. We’re still waiting for you. Is there something you are trying to tell us by not taking a bottle? If so, be clear once again, my darling. Tell us what you need. I spend my days watching the monitors which tell us the things you cannot. You’ve been clear thus far, keep it up. Help us help you. Remind me to be optimistic rather than to live in doubt. I remember on night one…I wondered if I would have the chance to have you close enough to capture my heart. Well, you did. Even though they cut the cord, nothing was able to break our bond. Now it seems I need you like I need water. Like I need air. I can’t imagine my life without you…62 nights you survived with the help of oxygen, now, on night 63, you do it all by yourself. I know it is hard, baby, but accept this newest challenge head on. And win. I believe you can. I choose to believe you will.

I pray for patience, especially over the next week. What I want for her and what she needs may not be the same. This I recognize and must continue to for the rest of her life. What I want no longer matters…it is about what she needs. Perhaps that’s the simplest way of defining parenthood. Whether a child is healthy or sick, a person understands true selflessness the moment their child is born. I thought I understood this well when Cooper was born, but somehow I am learning more and more as time goes on. I only wish I understood this more at a younger age, when I should have appreciated my own parents more. Their sacrifices were taken for granted. The life they provided…too expected.

…If only I knew then…

All I can do now is pay it forward. Be half as good to Cooper and Audrey as my parents have been in my life. Some lessons were harder than others, but all of them resulted in growth one way or another.

Mom and Dad, thank you. Thank you for the lessons. Thank you for my brothers. Thank you for giving us life.  

Until we know more, picture Audrey bunny gleefully taking bottle after bottle…after bottle.

Love and hugs,
R

Bunnies

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11 thoughts on “Seeing Beyond the Doubt

  1. Love this sweet girl. How blessed she is to have such amazing parents! Rachel I am in awe of how strong you are!
    Audrey sweet little angel, we pray this week you will take a bottle again! Can’t wait for you to be home with mommy and daddy and cooper! You are loved in so many ways by so many people. You have touched our hearts and renewed our faith. Love and thoughts and prayers for you this week and every week.

  2. Every case of children born with serious birth defects is different; however, I would like to share one that is near and dear to our hearts. My sister’s daughter and her husband gave birth to triplets two years ago. One was stillborn, one was perfect and one struggles with every thing imaginable including: A heart with a shortage of one valve (unable to do corrective surgery yet), organs that are all on the opposite side of where they should be; curvature of the spine (a rod has been inserted), an inability to take a bottle or chew and swallow food, he has had a feeding tube; an inability to digest milk, etc., throwing up what he can get down, etc, etc. FINALLY, he is making wholesale improvements, is being taught to chew and swallow and can actually keep his food down, and gained the strength to learn to walk and even run. He has suffered beyond belief, having had three surgeries and will need at least one more..
    I know 9 weeks seems like an eternity to you, I also feel that you are giving your little Audrey God’s greatest gift of all -a chance at life. Eddie and I pray for Audrey’s day to day survival first, and, secondly, the improvements she must make to go home. You and your family are at the center of attention of one of the best families we have known. With that in mind, life won’t always be perfect; however, with their love support and your faith and TLC, anything is possible Bless you and big hugs around – Ann

  3. Thank you so much for posting this update. You all remain in my thoughts and prayers and I check often for news of Audrey. Yesterday I checked several times, but I know God is with you and carrying precious Audrey through every moment of her ordeal. She is teaching all of us lessons that we thought we’d already learned. May the God of peace continue to carry you all through this time. Audrey, we need you to keep on. You’re a brave little soul, much loved and cherished by thousands of people. You can do it, sweet angel!!

  4. What amazing news that she is breathing on her own! Praise God!!
    Audrey, we love you so much and want you to be able to eat on your own! We pray that you will take a bottle in LESS then a week. I picture Audrey’s guardian angels around her right now, soothing her and helping her little body regain the ability to suck and drink through the power of Jesus. We love you Leslie Fam.

  5. I got chills as I read Annie’s post. The picture she painted with her words was the same picture I had of angels speaking to Audrey in a way only they could do to a baby, a language only they could share, giving her instructions and encouragement to drink. Thank you Lord for you love and your angels. Drink up baby girl.

    Thank you Rachel for blessing us with your post. You honor us, you honor God.

  6. Our Sunday School Class in Bartlesville continues to keep your family in our prayers. Little Audrey is so precious and we thank God for her. We pray that God will wrap His arms of love around you and bless your family with His strength. May little Audrey continue to breathe on her on and remember how to drink from her bottle so that she can receive the nourishment that she needs without the help of tubes. We thank God for the progress that we have already seen and pray for her healing.

  7. Sweet Audrey, what a fighter you have proven to be! Continue the fight, continue to breathe on your own, and work hard on taking that bottle. Your mama and daddy want nothing more than to hold you in their arms, gently cradling you in your own special room they have designed just for you. What a joy that will be! We pray that you will regain your desire and strength to take your nourishment on your own and that you will be grow and size and strength so that you can have that much needed heart surgery. Keep up the good fight Audrey, you can do it sweet girl!!! Ralph and Jayne Willcox

  8. Dear little Audrey,
    You are such a sweet little Girl and
    Such an Inspiration,as are your parents
    And big brother Cooper.
    You have come so far already and
    Are so strong and brave.
    And we know you will conquer
    Drinking your bottle . We will say a prayer
    Every day to help you take this next step. We know you will! Much love,Jacquie &Antoinette

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