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…
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.
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,