Lucky

It's been a while, folks.

One month. A magical month. A happy, happy month.

In the past month Nora has become a whole new baby. When we got home from the hospital, when Nora was 3 weeks old, I had only seen her eyes open a handful of times. I had never breastfed her, handled the midnight feedings without nurses to guide me, or even watched her breathe without seeing her heart rate, respiratory rate, oxygen saturations and blood pressure on the screen right in front of me. Not a day went by that we didn't have a doctor to check her and tell us everything was ok, or wasn't. She was weighed daily and her meds were administered by someone else nearly every day.

Then, we went home. And that was stressful! I think that every parent everywhere thinks going home with baby number one is stressful. There is no doubt in my mind about that! My stressors felt all the same as every new mom. But then I also sometimes wondered if I was getting her meds right, if her respiratory rate was simply newborn breathing, or that her bilateral CPAMS were becoming symptomatic, or the hole in her heart was causing trouble. I wondered if the "blue spells" the doctors described were happening when I was sleeping, and I might be missing something? I was terrified that she really was guzzling all of her food right on past her paralyzed vocal cord and  into her lungs. There is no denying that I knew all of the things about my baby girl that I needed to know in order to properly parent her- and also, I knew way too much. Too much to feel comfortable with day to day life without my doctors and nurses.

But, just as we made it through pregnancy and through heart surgery and through our stay at the hospital, we made it through the "phase of great worry and adjustment." We're in a new phase. A phase of trusting. A phase in believing that our Nora Grace is one tough cookie. A phase in knowing that there are some things we just can't change, and that's totally ok with us!

Easter!

There was a time throughout pregnancy that I hated it all. I hated having a diagnosis for the baby I had never met. I was so frustrated that I knew only things that were "abnormal" about our girl. It just wasn't how I wanted it all to go. It wasn't how I imagined it. It wasn't fun. It was worrisome, and had a negative, stressful, ugggghhhhh feel to it. I constantly asked God, "Why did you choose us? Why does our baby girl have so many struggles? Why do WE have s many struggles?" It felt unfair. It felt like THE WORST. Even after accepting the news of having a baby girl with a chromosomal abnormality I wondered why on earth we didn't at least get to meet her first. After all, MOST girls with Turner's Syndrome aren't diagnosed until they pop off of the growth chart, or until after they don't go into puberty. How come we didn't get to meet our baby girl AND THEN go through all the dealing with it? How come we are dealing with is right away? How come we aren't allowed to just love our baby girl day in and out before we learn our lot?

But now I see. We are so incredibly lucky.

That might not be the right word. We are blessed beyond words. God had a hand in our luck! Nora has Turner's Syndrome. She has a long list of heart defects We started dealing with all of this well before she was born, and it has been super tough. But we know.  We already know all of the things. Nora goes to the doctor with an incredibly detailed file and we discuss ALL of the THINGS. We are there FOREVER. We don't know what her future will hold, we don't know what other health concerns might arise, or what psychological or academic struggles might present themselves. But we do know where to look. We know what is likely and common. We know what she already faces and how to deal with it as she grows. We know the game plan for each item, no matter how they present. We know what early interventions will be helpful, what paths we may need to wander before we find answers, and we know we have an unbelievably committed and friendly team of people who have loved Nora since before she was born. We are so lucky.

I would have Nora Grace no other way. She is happy. She is strong. She is defying odds and she has Kevin and I wrapped around her little fingers, which are getting chubbier by the day.

As we manage what may come we continue to pray. We pray that hole in her heart does indeed close. We pray that the lung masses have disappeared, and if they haven't, we pray for the strength to find our back into the hospital to have them removed. We pray for Nora to keep growing and eating and developing as wonderfully as she has thus far.

Just Chillin'

And also, we smile. What once felt daunting finally feels happy. What once was too scary to manage feels joyous. What once was unknown is known, and its absolutely imperfect in the most perfect way.

I'm thinking about rolling over soon...

Cheers to Nora Grace!