I was trying to think about how I would describe this post and "Creeping toward comfort" was the best I could come up with.
As you know, my dear Ella was born with Pulmonary Stenosis (and a hole in her heart, which until today I forgot, or I'm not sure I even knew, existed). When she was born she came out fast, angry, red-headed and purple. As happy as we all were to see her, the general concensus was that she looked "a little purple". We asked several times if everything was okay, and were reassured that it was. "She just came so quickly she got all banged up." "All newborns look a little rough right after birth." "Her APGAR score is great, she's great." So we smiled and snuggled and tried to convince ourselves that she was just fine.
Ella was born at 2:46 pm. My world changed in that moment. I became a mother to two. I became a mother to a redhead. I was filled with joy!
My world changed forever at a little after 7:00. I wish I could remember her name. I can remember how friendly her "hello" was when she walked in the door. I can remember that she was our new nurse, the 7:00 shift change. I can remember how she looked. I can remember every line on her forehead. I can remember the way she leaned over Ella, listening to her heart. I can remember that tiny flexing of her muscles, the most unnoticable shadow that crossed her face. So subtle, yet it fell on me like a mountain. I knew instantly something was wrong. "I hear the tiniest murmur." she said. "I'm sure it's nothing, but let's go ahead and call the doctor." I wish I could remember her name, my angel sent to stop and listen.
I don't remember the rest. Just bits and pieces. Doctors, NICUs, warming lamps, big words, my husband. My mom. Panic. Late night visit with the pediatric cardiologist. A restless nights sleep. (Not Ella, she slept a lot back then!) The official diagnosis came the next day, Severe Pulmonary Stenosis.
Thanks to God-inspired intervention, we were able to go to Iowa City to have the world-renowned surgeon who had help develop the surgical procedure work on Ella. The surgery was a huge success, but there were warnings. We were told that, because she was so little, we could expect more surgeries, possibly as soon as 2 years. We didn't know how the heart would respond to a non-functioning valve. Would there be huge backflow issues, would it swell back up again(those are my medical terms!)? With all these questions and uncertainties, we took our baby back home and tried to go on with our lives, enjoying every minute of it.
Fast-forward through the next 6 years: I'm scared every day for Ella. I smile, I function, I enjoy life. I don't talk about it much. Don't share pictures about it. I never miss a cry from Ella, a short breath, a pale face. Years go by, check ups come and go and every time we hear the same thing, "I can't believe how great she's doing!" "I can't believe how great the heart is performing!" She's growing, she's thriving, I'm still watching like a hawk.
Now today. 6 years later. Ella is showing a few uncomfortable symptoms. Things we've been trained to watch for. While I fear the worse, I am strangely calm. Is that me? No! It's faith, it's God's grace holding me up. It's the realization, finally, that no matter what, we are all going to be okay. Does my faith mean that her heart will be healed and we'll never have to worry again? No. But my faith means that I can send her to school, I can go to work, and I can go to her appointment confident that we will walk out of there together and okay, regardless of the outcome.
She is a miracle! I can't say that enough. Her heart is strong, and good, and healthy as it can be. It's not perfect, but it's working perfectly for her. Finally, today, I think I'm creeping toward comfort. I'm finally ready to say, she had this, but we're moving on. It will not define me or her or us anymore. Is it all over? Not quite. But we don't have to go back for 3 years. 3 years! That's a long time for this little girl!
When Ella was having surgery, I refused to take pictures before she went in. When she came out okay, my mom snapped a few, knowing that someday I'd want to see them. I've looked at them only a few times over the years. But now, I'm ready to share them. I don't see them as scary anymore, I see them as what it was. A little girl in a great hospital, getting great care.
To all of you who have walked with us, beside us and carried us sometimes, thank you! Your strength and love has allowed us to walk through this and hopefully return the favor as you walk through your tough times.
God bless ~
After surgery, getting ready to head back home
Look at her now!
