Impact.

The impact of all the past few months is great. Great as in large. This is big.

I feel like I am somewhere between the undeniable bliss of being a new mom and suffering from Post Traumatic Stress Disorder.

Everything is stressful. And everything is perfect and wonderful.

We have been impacted greatly as well as been celebrating during every minute of every day.

One minute I am hugging Nora, kissing her cheeks, dancing with her in the kitchen, thanking God for all the things.

The next minute I might be replaying that most traumatic scenes from pregnancy and from the hardest days in the hospital.

The impact of my pregnancy is fierce. The number of times I've watched, as though out of my own body, the hardest days is unbelievable. I've gone through the day I told Kevin I was pregnant, to the day we were told of the hygroma and I called my mom to tell her something was wrong. I've watched myself break into a million pieces when the doctors asked me if I'm going to terminate my pregnancy. I've shed tears over the party we threw her before we knew if we would ever meet her. I've been shown the masses on her lungs a billion times and told she is going to need heart surgery. And I have watched myself check in to Children's Hospital three weeks too early to deliver a baby that might not be breathing.

The impact of Nora's battle is intense and ongoing. I see these scenes as well. I've watched myself hand Nora over to the doctors to be taken into surgery at least a hundred times. I've heard over and over again her labored breathing when her injured lymphatic system was leaking fluid and putting pressure on her lungs. I've watched her scream and cry from the ENT team placing a tube down her throat. I've watched her sleep for unbelievable numbers of hours, rarely opening her eyes because healing was all her body could do. I've seen her body swell up like a balloon.The look on her face when her cry was too weak to hear is implanted in my brain. I have witnessed dozens of X-rays and ultrasounds on her little chest. I have seen her face when I pushed the NG tube into her nose and down into her stomach. I have begged Nora to eat both in the hospital and at home. I have logged and counted milliliter after milliliter of breastmilk and formula eaten. I've laid awake at night listening to her breathing and trying to determine if it's labored, shallow and quick. I've held her close after we clean the incision over and over again. I've spent hours trying to stretch out her limbs from the impact of being born early and having heart surgery so quickly. I've wondered if her cough during feeding is aspiration or simply a cough. I've given her syringe after syringe after syringe of medication to help her acid reflux and I've cuddled her to sleep when it's causing her pain.

And the impact of having a beautiful baby girl is undeniably the greatest impact of all. I've re-watched the moment she was born and I finally got to see her face and hear her cry. I've watched her lay with the NICU team breathing on her own and sucking a pacifier. I've seen her big blue eyes when I was able to hold her for the first time. I watch the scenes of me trekking down to the ICU at 4am just to hold her for the first time after surgery. I've re-entered her hospital room over and over on the morning that Nora was disconnected from so many cords and lay ready to transfer to the CPCU. I've watched them remove the oxygen and the chest tube and all of the stickers. I've heard her satisfied breaths after finishing her first full bottle! I've seen her way too small in her going home outfit and I've watched Kevin carry her inside our home for the very first time. I've watched her sleep in her own bed. I've smiled a thousand times at the very first smile she gave and at the first coo she made. I've watched her grow, and gain weight, and defeat so many odds. I've heard the doctors say, "She looks great," over and over again. I've seen her eyes open wide and watch me smile and sing to her. I've watched as she magically latched on to breastfeed for the first time at 8 weeks old. I've seen her strain for a big poop and laugh when we dance in circles and I kiss her neck over and over again. I've seen her grandparents hold her, our friends admire her and I've spent so many hours snapping picture after picture of every moment with this little girl. I am absolutely madly in love with this baby. This fighter of a girl who is braver than anyone I know and somehow captured the title of hero with her very first breath.

Nora is making huge progress. We are slowly saying goodbye to each complication from surgery and watching our little baby become a happy, smiley, poop-factory of a girl. She has passed her swallow study and is eating lying on her back. It's been a battle, and re-learning how to eat at 10 weeks old is hard when you've been doing it a different way for 9 weeks. Her heart is healing great, and a second surgery is much further from our minds. She is able to have breastmilk once again, and she can nurse up to twice a day now. She is stretching and moving and cooing and doing all the baby things.

And Nora also has Turner's syndrome. I've said it before, and I'll say it again. Turner's Syndrome is no reason to freak out. And it's not. I have friends tell me, "I completely forget she has Turner's Syndrome. I just see an adorable baby girl." HOORAY! That's wonderful. But, the truth is, I can't forget. After getting a diagnosis for Nora 17 weeks before meeting her, that diagnosis became all I knew. I knew her heart wasn't quite right, her lungs had some struggles, her neck had a hygroma, her feet and hands were swollen, she likely didn't have ovaries or at least not functioning ones, her legs were abnormally short and her head was very small. All things that are totally ok. But can haunt you if left alone for too long. I only knew the things that were "abnormal" about Nora. I didn't see her beautiful smile or her red-tinted hair or those blue eyes. I couldn't see her. So now that I can see her, I see her for all of her beauty. And I love what I see. But it's not as though I don't see the thick skin of her neck and that her hips and legs are a little smaller. I realize her hairline is lower in the back. And it's totally OK- that's just our Nora girl. But I see it. I see Turner's Syndrome in her, and I know that's why we went through heart surgery. I know she is in the 3rd% because she has Turner's Syndrome and I know that there are so very many more things that we could potentially be up against in the years to come because of Turner's Syndrome. I don't hate Turner's Syndrome, it helped create my baby girl exactly as she is. But it has an impact all the same. Turner's Syndrome is a chromosomal abnormality which in its classification alone can cause for some big thoughts, deep thoughts, thoughts that are sometimes hard to think. And, I know that one day Nora is going to have to think these thoughts. She is going to have to wrap her mind around that missing chromosome. She is going to have to wonder why she has a heart defect, a giant scar. Why she can't have children of her own, and she is going to have to endure shot after shot of hormones. She is going to be just fine. She is going to grow big and strong and be a happy, healthy wonderful little fighter that we all can't live without. But she has Turner's Syndrome. And it isn't something she will ever forget, so it's not something I'm ever going to forget either.

Each night before tucking Nora into her crib at night I read her books. A favorite is one titled, "Bedtime Prayers." It's poetry. It begins each stanza the same way, "Thank you God in heaven..." So, today I shall thank God in heaven.

Thank you God in heaven for our Nora Grace
Thank you God in heaven for YOUR grace
Thank you God in heaven for your strength and guidance and for carrying us.
Thank you God in heaven for giving us faith.
Thank you God in heaven for the ability to endure.
Thank you God in heaven for all of the family and friends we've been blessed with.
Thank you God in heaven for this day and the next.
Thank you God in heaven for the joy and happiness we've had.
Thank you God in heaven for our sense of humor to give us smiles.
Thank you God in heaven for watching over Nora.
Thank you God in heaven for all of the things.
Thank you, Thank you, Thank you.

Two Months!

Something I loathe: The grocery store. Before I had Nora I would do anything to not have to grocery shop, including shamelessly tricking Kevin into having to do it. I have been to the grocery store now twice since December. I would absolutely LOVE to grocery shop again.

Because of Nora's heart and lungs we've been on house arrest hiding from RSV. On Saturday our nurse came and gave her the shot to protect her from RSV and right about the time I was about to yell, "WE'RE FREEEEEEE!" the nurse reminded us, "No recycled air for this baby."

Buuuuuummmmmmmmmmmmmeeerrrrr. On house arrest we remain until April-May(ish). RSV can go into May and Nora will receive a shot monthly until the beginning of May to ensure she is safe. Though the shot helps, it doesn't prevent her from getting sick, and if Nora gets RSV the likelihood of her finding a bed at Children's again is high. So, we visit her grandparents, we see the occasional friend at their house, and we go outside when the weather permits- PLEASE STOP SNOWING COLORADO! I actually look sooo forward to doctor appointments so we can get out of the house. Some weeks I step out the front door once or twice. This mama is stir crazy!

I know what you're thinking. "Deidre, just call me! I'll come watch Nora and you can get out." Yes, thank you. I am doing that. I get out from time to time. But that's not really what I'm craving nearly as much as I want to take little Nora with me to see the world! I don't struggle leaving her, our hospital stay taught me how to be separate from her quickly- but I just want to take her around with me and do fun stuff. Isn't that half the fun of having a little baby? To show her the world, to teach her new stuff, to enjoy life WITH her?

Ok, wait. Maybe that is ALL of the fun of having a new baby? Well, I'm probably exaggerating. We are having fun exploring our living room and stuff, but here is the truth ladies and gentlemen: having a newborn is HARD WORK. I know millions of people do this every day. And I know that it's just not that big of a deal in the end. And some people are like "Oh yea, everything is perfect all the time." Well, they either have a maid and a nanny or are LYING. For real, guys, having a new born is tough. You wake up a 2am EVERY NIGHT to feed, then there is the pumping, the baby puke on the couch, the dirty dishes that don't get done, the clothes that you STILL don't fit into, but also your maternity clothes look weird. There is the wearing three bras to go on a run and the "WHY IS MY BABY BREATHING LIKE THIS?!? IS THIS NORMAL?" There is the, "my baby's poop is strange, do you think this looks strange?", the "WHY ARE YOU CRYING?" and the please, please, please pray at the doctor they say everything is fine. We spend a ton of time confused and worried and figuring out how to be a family, not just a married couple. We are tired, tired, tired, and also, I'm starving. WHY DOES NURSING TAKE SO MANY CALORIES? Having a baby is hard. And I'm totally loving it, but let's not pretend it's a piece of cake folks. It's for sure like crab legs dipped in butter- really tough to eat! but SOOOOO delicious. Heart surgery or lymphatic system problems, or paralyzed vocal cord aside, babies are stinkin' cute, and stinkin' tough. And no matter how severe or minor your baby's struggle may be, it feels like the end of the world to you. It just feels like a lot. No matter who you are or where you are. And as for us.....we're still in the living room. Or sometimes in the bedroom. I CANNOT WAIT TO BE OUTSIDE or IN A STORE or SHOPPING! (I don't even like to shop. But I really want to shop).

In the mean time, Nora celebrated her two month birthday yesterday! She also reached a milestone: 8 weeks since heart surgery. This means we can hold her under the arms, we can let the incision get wet in the bathtub, we can quit cleaning the incision constantly. By golly, perhaps I can even forget about that incision for a bit! Not only that, but Nora Grace FINALLY made it to 8lbs! It was just barely 8 lbs, but she made it! I have no idea why, but this was a big milestone to me. The next goal is for her to eat 3 oz at each feed. She is very close! Then, I'm hoping we can bust out the 0-3 months attire soon! In the last two weeks she has also moved from the low-fat formula to breastmilk! YAY! Our freezer supply is finally starting to be put to use! We have started to nurse as well- Nora didn't take much convincing to latch on, she just did it! We still have to practice to make perfect, but she is getting milk. We can't nurse often yet as she is on fortified breastmilk, meaning it is mixed with formula in order to have a higher calorie count and fatten her up a bit. :) More calories= more growth, more healing. And finally, we've visited an opthamologist regarding the droopy left eyelid. Nothing to be concerned about- it's not impacting development and in time it will get stronger and stronger and open wider and wider. At time right now you can't even tell it is droopy, and other times it's very obvious. But, it's getting better!

Nora Grace is getting stronger, more awake, more interactive every day. She is smiley, and whiney, and that paralyzed vocal cord doesn't seem to be inhibiting her ability to let us know she is angry! She has many expressions to show off lately and I just love sitting around and staring at her.

Loving bath time!

Hippie for a day!

Impatiently waiting for the bottle to warm.

burps.

Party at 3am!

Puppy love!

Pumped on the stuffed elephant hanging there.

Luna loves her!

Celebrating making it to 8 lbs!

I don't know how to rotate this- but here she is sleeping in her crib like a big girl! 

Soooo funny.

My favorite face!

Mom LOVES dressing her up!

We don't get much time to just sit around though. There is still much work to be done- physical therapy must happen every chance we get. This isn't as often as our therapist would prefer but with her constant acid reflux sending her food up, we can't lay flat and practice very often. But we do when we can, see:

tummy time with back and hip support.

loosening those hip flexors!

arm rotations!

post therapy play time!

There are still many hurdles to leap, but Nora continues to leap them in her own time. Next week is a huge week! We spend one full day at Children's to visit cardiology and then have a repeat swallow study. During her cardiology visit we hope to learn more about the VSD in her heart and if it's closing- meaning we could avoid the second heart surgery. A good outcome for the repeat swallow study sure would help with eating. Right now we eat in a side-lying position that makes feeding a bit of a struggle. If she were to pass this swallow study she can eat on her back again like most babies eat! In order to pass she has to eat a solid amount while lying on her back with no aspiration. If she doesn't pass we are looking at a side lying position for what sounds like another six months or more while taking in fluids.

We continue to struggle with acid reflux. Right when it feels like we get it under control and more of the food is staying in than coming out, something changes. It's a little frustrating. But Nora is still gaining weight, which is the important thing. As long as that continues we just have to practice patience and wait for it to improve with age and strength.

We continue to pray that the lung masses are disappearing, the hole in her heart is closing, and the vocal cord isn't impacting eating any longer! We also are praying for sunshiny warm days and that mommy and daddy make two months more before we can take Miss Nora to play with us!