I have an Aunt named Lisa. She is my mama’s sister. Once she starts laughing, she sometimes has trouble stopping. That, in turn, makes everyone else laugh and laugh…and laugh. She calls my mom “Nay” and has for as long as I can remember. She loves the idea of going on a boat ride but screams most of it because it is just too rocky. She has light brown hair and clear green eyes. Candy is her weakness. She sings…loud and proud…whether she is on key or not.
Lisa has mental and physical disabilities. She is not defined or labeled with a specific diagnosis or syndrome. I grew up watching my grandmother, Barbara, take care of Lisa in so many ways. I remember when I started to realize that although she was over 20 years my senior, I became more capable. I remember a day when my own son was playing with her so sweetly it melted my heart. They laughed and copied each other. Then, she got up to walk and he mimicked her. Her walk is unsteady and he watched and tried to walk in a similar fashion. I didn’t know if I should stop him or just let it happen. I did nothing. He wasn’t making fun or laughing, he was taking it all in, trying something different…learning.
Her needs are great but I have heard my grandma say how truly thankful she is for just how much Lisa is capable of. She can walk, feed herself, see, hear, speak and so much more. She communicates and contributes by working, she has her own personality.
I pray our little Audrey can make us laugh like Lisa does. I hope that someday when Cooper has children of his own, they will be as fond of Audrey as I am of Lisa. I am thankful for things Lisa taught me as a young person about respect and differences. Things I hope others will learn from Audrey.
We continue life at OU in the NICU. Audrey is over eight weeks old now. Things just move slow with little sis.
Patience is a virtue.
Slow and steady wins the race.
Love is patient and kind.
I know these sayings. I have probably overused them in my 30 years of life. But when you are smack-dab in the middle of it, patience can take serious effort.
Just today, a cardiologist consulted on Audrey and told me, “You’ll just need to be patient while we watch and see.”
Ey-yey-ey…he’s about the 27th person to say that in the last seven or so months. But okay, I’ll keep working on that.
He was referring to the function of Audrey’s pulmonary valve. We know, because of the Tetralogy of Fallot, that hers is small. But we have understood it to be on track with no immediate need to intervene. While she is not on as much oxygen support now, she is not breathing in an efficient manner. Her heart rate is high, as well her respiratory rate (how quickly she breathes). This also causes problems with her ability to take a bottle. While she was able to do so prior to surgery, now we are told that she is struggling to take a bottle due to her breathing pattern. Her body is telling her to breathe over taking a bottle. This is concerning to her team and they are taking several steps quickly to overcome the issue. Should their efforts not lead to a resolution, she may have to have a procedure done using a heart catheter to place a stent in the valve. I am prayerful this will not be deemed necessary.
So, for now, we continue to trust, wait and see. I get frustrated because she used to do it. She used to be able to eat from a bottle only occasionally lacking stamina to do so. Now her body just won’t allow her to breathe well while trying to eat. We hope to know more in 5-7 days.
It has been mentioned previously that Audrey’s two separate and unrelated heart conditions are almost never seen in the same heart. One or the other are fairly uncommon, but paired are very rare. They told us they will be publishing her case for others to learn from now and in the future. They apparently had their “blinders” on, as one cardiologist put it, because they already knew of her TOF condition. They weren’t looking for anything else while all along, another issue completely was getting worse and worse.
I regret that it was at her expense that others will gain this learning opportunity…but how amazing it really is.
This little girl will be a case that doctors and students alike will learn from. That other babies will benefit from. Her case is rare, yes, but also so important. She is making a difference, by living. By breathing…even if it isn’t very efficiently. I can’t say that I have ever taught anyone anything. But at eight weeks old, she is a teacher of many things.
The world continues to turn, life still happens, people move forward. Sometimes it feels like I watch it all happen around me while I stay put, not moving, not going anywhere. But, I would rather stay put than go backwards. I am thankful for any and all progress. Thankful for supportive family and friends. Thankful for the tireless work of nurses and doctors.
Cheers to the latter half of the week, everyone. When you make it to the weekend, pat yourself on the back, sit back and enjoy…
Love and hugs,