You may wonder why there aren't a lot of pictures of a smiling Cora on these pages. I wish there were more. She is actually quite the smiley little charmer. And lately her smiles have been getting more brilliant, adorable and hilarious. She has been accompanying them with coos and goos of delightful cuteness, with little squinky eyes and her sweet baby love. But of course, the second I point the camera at her, she looks at the camera. And that darn camera doesn't make her smile. Yet. So for now most of her ridiculously addictive smiles are for me and Nick. I guess I can't complain about that.
Today those smiles have meant a lot. Because I haven't felt much like smiling. But Cora has persisted, in true Cora fashion, grinning at me through my tears. Today my Grandma passed away. It wasn't expected. All year we have been looking forward to early July for Grandma's 80th Birthday, and getting excited for Cora to meet her great-grandmother, along with the rest of my mother's side of our crazy, wacky, and amazing family.
My Grandma was quite the woman. Always so full of fun, humor and love, and willing to not only put up with, but enjoy, and even out-party the rest of us. There is so much to say about her. And about how very loved she has been by so many people. How much I admire and respect her. How much I wanted her to be able to hold my little baby. But all the words don't quite seem sufficient. She has been so wonderful since Cora arrived, calling every few weeks to see how Cora, Nick and I have been doing. Even going to the library to check out books on Down syndrome to learn about what to expect with her new grand-baby. It's so hard to believe she won't be around any longer.
So I send my love to my sweet Grandma. I know that you are with God now. I wish you peace. I hope for peace for the rest of us, because life will be less bright without you.
We are very excited to report that Cora went for her post-surgical follow up at the cardiologist's today and is doing great! Her oxygen saturation is 100%,which is perfect for a normal healthy heart, and wonderful for a repaired heart. Her doctor originally wanted her at 92% or above. He said that her incision is healing well, and that the small scab remaining should heal just fine.
She had an EKG and an echocardiogram, and then he told us that her repair was perfect. There is no valve leakage, which is incredible, since valve leakage with this type of surgery is fairly common and will often require future monitoring, and even another surgery, in some cases. But he said that everything looks great and she should most likely not need any other procedures for her heart, ever. What incredible news. The only thing we have to do is give her antibiotics before any procedures done in the next 5 months, and then nothing beyond that. She will follow up in 6 months, and then probably only every couple of years after that.
It's hard to believe that my "heart baby" is going to have a healthy heart from here on out. When she was born, the prospect of surgery seemed so removed, and the process of waiting and then going through it seemed so scary. When we were told that she would go into heart failure and we would need to watch for those signs it sounded so big and so looming. And in the NICU when they put her on diuretics the first time it was still such a shock for me, that her heart problems were starting so soon. So hard to believe that they are already behind us. We even get to stop her heart medication today. Imagine a baby that will be off medication for the first time. So thrilling.
During our conversation, the cardiologist again referred to the fact that she was insuch significant heart failurebefore surgery. This doesn't mean that the heart has stopped working. It means that the heart can't pump enough blood to meet the body's needs. Lack of oxygen, pulmonary edema, and the pulmonary hypertension that result are the life-threatening results. I know of another mother whose precious daughter's life was cut short at 4 months old as a result of the hypertension, most likely from waiting too long for surgery.
Thinking of this, I feel a sharp pang in my own heart, remembering how the skin at Cora's ribs sucked in with each breath, how fast and labored her breathing was, how pale her skin, how much she fought to eat barely half of what she needed to grow, how she gagged and wretched, fighting to keep her food down. And I know that in another time my girl would not even be alive right now. That even if she hadn't already starved from her inability to eat, her body would have given out and she wouldn't even be with us. And I am so, so grateful for the medical care, for the surgeon, the doctors, the nurses, the medication, and the equipment that have saved my baby's life. Because now we get to "treat her like any other baby," and watch her grow and thrive and live.
And we get to watch her smile, laugh (Yes, she started laughing yesterday), talk, coo, and practice holding her head up while sitting, stare for hours at her feet, learn to use those sweet little hands, and continue to captivate and charm us on a daily basis. Every day really is so precious with her. I know that soon enough, the days of fear and of watching her struggle just to breathe will be in the distant past. We will get to have a lifetime to get to know her and to enjoy her and to help her overcome the other hurdles that will present themselves as she grows.
We are thankful that Cora sleeps through the night. She still has a mid-way feed, for which she rarely opens her eyes. And she sleeps until 7:30 or 8:00 every day, which is pretty good.
But the naps are tricky. She just doesn't seem to want to miss anything so she fights hard to stay away awake. She falls asleep at the breast every time, but wakes up so soon that I can't call it a nap. I imagine if I could sit and hold her through the whole thing it might work, but my need to get things done tends to discourage me from doing that. Occasionally she'll sleep in the Moby wrap, but even that's tricky.
Yesterday, Mother's Day, was another nap fighting day for her. And consequently, a grumpy day for her. Our attempts to capture me and Cora on camera weren't very successful either, partly due to Cora's grumpy face, and partly due to the fact that I hate pictures of me. I blame it on Nick's pictures, but the blame should probably go to my face, or my Mommy hairstyle that hasn't been touched in 6 months. Another raincheck for pictures of the two of us.
We spent Mother's Day largely holed up at home, doing a minimum of chores, and enjoying a lazy day together.
Cora, finally crashed out after her shenanigans.
Today Little Miss has been fighting sleep yet again. I tried a little bit of a "whine-it-out" session in the swing until her quivering lower lip threatened a real meltdown.
Then I rocked her to sleep and tried to transfer her to her bed, when BING! her eyes popped open again. I put her down anyway and left, turning on the monitor, ready to go pick her up when her complaining got too loud, but she is actually sleeping! Feels like such a victory!!
So funny how significant a nap can seem. And not even my own nap. But it feels like a grand break, indeed. And hopefully when Little Girlie awakens, her case of the grumps will have resolved.
Ah, she's up. Well, at least that was 20 minutes of sleep. The grumps may reign again yet.
We had a nice time in Auburn with my parents over the weekend. Except that Nick was stuck upstairs doing homework the whole time. But Cora and I had fun.
We went over to Brett and Annette's on Saturday evening for a backyard fire and some yummy jambalaya. Cora had a great time with all the attention. Miss Tia couldn't get enough of her and even gave her a bag full of books and toys. So sweet and generous. But she was a little worried that Cora was going to throw up on her. This may be because the last time Tia met Cora she was suffering from pretty bad reflux. Tia told me that it was because Cora sticks her tongue out a lot. I told Tia that Cora shouldn't throw up on her and I asked her to make sure she didn't throw up on Cora either. That seemed to relieve her nerves about it. Somehow I don't have pictures of Tia with Cora. Probably because I was helping her hold Cora upright the whole time.
Cora LOVED gazing at the fire, which came as no surprise to any of us, since we are a fire loving family and always have been. I'm sure it will be the first of many fires that will captivate her.
The next day she went in the hot tub with me and her Grammie. But we need Grammie to send us those pictures.
We're getting back into the swing of being at home. Yesterday Cora helped me transplant tomato seedlings and get the garden ready for planting. She helped while sleeping and babbling in the Baby Bjorn and in the Boppy seat.
Now we're getting ready for a visit from Rachel, one of my best friends and Cora's honorary aunt. We've had to re-schedule a couple of planned visits already so we're really excited to see her this time.
Little Bean is actually taking a nap right now and has been sleeping for about 45 minutes. Naps longer than 10 minutes are something to be celebrated around here. Which means I really should be emptying the dishwasher, making Rachel's bed and cleaning up the rest of the house. Or getting into the garden during the brief breaks in the clouds. So I guess it's off to be productive.
Cora and Mumma in the tub. You can see where she gets her white white skin!
