Yesterday was long. It felt like we said goodbye to Bean and then waited an eternity to see her again. They took her back to the OR around 7:15am, and we didn't get to see her again until close to 5:00pm. She was in surgery for about seven hours. (Seven hours with your child in surgery really and truly seems like a million years.)
The surgeon was able to repair everything he had hoped. He patched her VSD (big hole in the bottom of her heart) and removed her PDA (extra duct coming off of her aorta). The opening to her left pulmonary artery was very small, so he used a patch to widen that. (The patch is actually a piece of the sac that surrounds her heart. How amazing is that?) He also opened up her pulmonary valve and placed an artificial flap. Her valve was very, very tiny - like the diameter of half of the top of your pinky.
So, while it's great news that the technical part of Bean's repair went so well, the anatomy of her heart before her repair means that the blood flow to her lungs has been minimal for the first two years of her life. Picture her little heart working to pump blood through an opening the size of half the top of your pinky while the part of her heart doing the pumping has a hole in it about the size of a nickel: not good. Now that her heart is repaired and working the way that it should, her lungs are overwhelmed by the new blood flow.
After surgery, Bean's body was really struggling. When we finally got to see her in the CVICU (Cardiovascular Intensive Care Unit), the first thing the doctor said to us was, "She is very sick". Her lungs were filled with a lot of blood and fluid, and her oxygen saturation levels were low. The doctors had sedated and paralyzed her with medication, and a ventilator was breathing for her.
I don't even have words to explain how hard it is to kiss your child goodbye in the morning when she looks like this...
...and see her next looking like this.
I felt numb and scared and sad and not sure what to do with myself. Because, of course, I just wanted to help my baby. But I couldn't. (I mean, yes, it matters that I touch her and hold her hand and tell her I love her, but I wanted to fix her.) More than anything I wanted her to suddenly open her eyes and be herself again - to giggle and hug me and wrinkle her little nose like she had just hours before.
Thankfully, as the evening went on, Bean stabilized. Her oxygen levels went up, and her pressures improved. The two nurses she had last night were incredibly sweet and took very good care of her. Jeremy and I received lots and lots of messages of encouragement from people praying for our girl and thinking about our family. (Thanks to a special heart mama friend, Bean even got a super cute panda delivered from the gift shop.)
Bean had a good night and she is stable this morning, but she still has a rough road ahead of her. Several people have told us that the next few days could be a bit of a roller coaster. This morning, they are weaning her off of one med that has been helping her oxygen saturation and another that is keeping her paralyzed. As they take her off more and more of the meds, things could get rocky.
Please keep praying for Bean. Pray especially that her oxygen saturation would stay up and her blood pressure would continue to stabilize. Pray also for her little heart and mind as she starts to wake up and realizes what is happening.
We believe that a big and strong and faithful God is with us and with our Bean, no matter what comes next. It means so much to know that we are surrounded by people who are supporting our family with prayers and words of encouragement. Thank you for your love for us and our baby.
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