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!