Livin' the Dream...almost

I title this post because I feel like we're living the dream now that we're home and settled in Atlanta.  It's only been since Wednesday since this "dream" has been fulfilled, but we've had family over to our house every night since we moved in and it's been SO NICE!  Lilly is absolutely astounded that her grandparents are here so often.  She just doesn't know what to do!  We spent from sunrise to well after sundown on Wednesday unpacking and organizing until everyone was beat and could not move another inch.  We really could not have made this move without the help of every person in our lives.  It was supported by prayers, help, encouragement, and so much more.  Charleston will always remain a beautiful place in our hearts; our daughters were born there, we built our first home there, and we made everlasting friendships with the best people in the entire wide world.  However, with that said, I think Billy and I are both overwhelmed with how happy we are to be back home in Georgia.

Many of you have probably noticed that this blog is not just about Emily....there is so much more to say about life :)

Speaking of Emily though, we did have a cardiac appointment today and it was a great one!  She is up a few more ounces and weighs 8 pounds 11 ounces.  She still has not doubled her birth weight, but she's making progress.  I am happy to say that in the past few days she has actually seemed more and more hungry and is eating almost all of her bottle (she usually leaves an ounce or so).  The cardiologist was pleased with her progress and we actually won't see him again until surgery or shortly thereafter.  Our appointments after surgery will be frequent, but hopefully things will subside and Emily will make a speedy recovery and won't require extra visits due to complications.

Emily still continues to be the absolute best baby in town.  She is just such a joy.  She's so happy all the time.  She is content watching Lilly play (her favorite!), or playing under her jungle gym.  She is not a baby that loves being held.  She's super wiggly and enjoys kicking and squirming around.  I  want to say a huge thanks to those of you that were so kind and bought Emily some new outfits!  You must have felt sorry for the poor peanut after my last blog.  We now have several new outfits and I am more excited than you'll ever know to see her in something new!  Some other exciting news: Emily slept in her crib for the first time all night last night!  I have been so protective over her and kept her in our room for the past three months, but given the fact that she loves to squirm, her crib was probably much more comfortable.

We have all adjusted well to the move.  Lilly has been so happy riding the new "tractor", or riding lawnmower.  She loves her new room and having so much more room to play and run.  Life is getting better by the memory :)

A big day...

Well, as most of you read on Facebook, the surgery is scheduled.  Whooooo hoooooo!  We are so, so, so excited for this.  The surgery has been something that has lingered in our minds since we first found of out Emily's diagnosis 7 months ago.  April 17th, COME ON!

The day before surgery, Tuesday, April 16th, we will spend getting to know the surgical team and having loads of pre-op labs done.  Emily will have another Echo, chest X-ray, blood drawn, EKGs, and much more.  The nurse told us it would be an all day event.  We are really excited to meet the surgeon, Dr. Kanter.  He is young and in his "prime" as our cardiologist said.  We will also meet the anesthesiologist that day and tour the cardiac unit, ICU, and step-down unit where Emily will go after she's released from the ICU.   

The nurse said she is expected to be in the hospital for 5-7 days, which is less than we originally thought!  She will go from surgery to the ICU where she will stay for a few days.  Once she meets certain "benchmarks" she will be released to the step-down unit where we will have a private room and can stay with her overnight.  Initially, we will not be able to stay overnight, but we will definitely take advantage for a few days when we have a private room.  Emily will be in surgery anywhere from 4-6 hours.  A lot of that time is running lines, sedation, and per-surgical work-up.  She will have a large scar running from the top of her chest to her belly button (or close to it).  It will be a life-long scar, but since she's having surgery early in life, it should heal nicely.  We will have to take classes while she's in the hospital to learn how to care for her sutures and other various items before she's released.  I am sure it will all be very overwhelming.  I probably won't wear any makeup on the day of the surgery because it will all be washed away!

My biggest fear, and I know I speak for Billy too, is making sure Emily doesn't have any complications.  Of course with any surgery, infection can creep up and cause complications.  I think I also fear of how this will affect Lilly.  I want to make sure she has time with us during all this.  She definitely senses Emily needs much more and sometimes acts out.  What will this do to her-  especially given the fact that she won't be in school once we get to Georgia.  Friday is her last day and I am deeply saddened.  Lilly is a pistol...a fireball...full of energy.  She thrives on structure and I know for a while, she just won't have that.  We are so happy to be home close to family so that everyone can help and pitch in during this time of transition.  We have probably never relied on family as much as we do now and are forever grateful for everyone.

Today Emily weighed in at 8 pounds 4.5 oz.  She's still so small.  I did get her 4 newborn sleepers today because I just cannot look at the same ones again.  It's been 13 weeks of stripes and flowers.  We got owls, whales, and hot-colored polka dots today.  Thank goodness!  After surgery, it is expected that she will lose a little weight and it will be very important for her to maintain body temperature, so she will still be in sleepers for quiet some time.  Plus, they are easy to unsnap when we need to clean dressings or check scars.  I know all the grandmothers will be happy to buy new ones for her :)

Both our girls are sweet angels.  I sometimes think about what I did with my time before kids and I honestly don't remember.  What in the world did I do after work?  They are our life now.  It doesn't get any better than this!

Pre-op paperwork is submitted!

Well, some exciting news...Emily's pre-op paperwork has been submitted to Egleston's cardiac group and we will know later this week when her surgery will be.  Since it's elective, we do have a small window of time to choose from, so I am hoping it falls when all of our family is home because we will certainly need to help from all parties! She is expected to stay in the hospital for 7-10 days depending on how well she's recovering.  Billy and I will probably stay in the hospital the first few days with her.  The day of surgery we will not be able to room in with her because she will be in the Cardiac Intensive Care Unit and they do not have private rooms.  Once she's in the regular ICU, we will have a private room and a lovely couch to sleep on. I'll get a taste of what Billy has had to sleep on during our girl's deliveries!  Please pray and keep all fingers crossed that all goes well and no infections or complications arise.

We go tomorrow for her last Synagis shot (an RSV prevention shot) and will have a new weight then.  I'll be sure to post what it is since it's definitely a topic of conversation among all.  I really, really hope it's in the 8.5-9 pound range.  She still eats a lot less than the normal baby...only taking in 15-18 ounces of milk/day.  Most babies require between 25-30.  Her little stomach just cannot handle it.  I am constantly giving her snacks which will probably backfire one day when I try to get her on a more strict schedule.  It's the best for her right now, so who cares about scheduling!?

I am becoming more and more keen on the idea of giving up pumping which most of you know I have done exclusively since birth.  I have 300 of my supply pills left which are really helping me pump like a mad man.  I have about a 4 month supply stored right now and I want to get to 5 months frozen.  Once I finish the rest of my pills, I'm done!  I need a celebration of that day. For many of you breastfeeding moms, it's so simple to just feed from the breast.  I did successfully with Lilly.  Pumping takes so much time and then I must bottle feed, which is a slow, painful process given Emily's issues with sucking and swallowing appropriately.  I'm not as sad this time about quitting as I was with Lilly because I never got the actual breastfeeding experience.  I'm just ready to burn the pump. 

Speaking of feeding, I'm off to give Emily a little snack.  Thank you all for your continued thoughts and prayers!  We absolutely COULD NOT make it through this with the encouragement.

Surgery is getting closer...

It's been a while since my last update, and there's lots to tell!

First, we made the transition to the Sibley Heart Center in Atlanta and have met a wonderful cardiologist there, Dr. Kanaan.  He's young, caring, and very knowledgeable about Emily even after meeting her just once.  We spent two hours with him for our first initial visit.  He changed her medicines around a little, adding some medications and upping some other doses.  We feel like we have a mobile pharmacy in our cabinets.  Emily's on 5 different medications right now and it's definitely hard to keep track of dosages and when to give it all. All of this is to be expected as the surgery date comes closer.  We will see the cardiologist again on March 29th and we will schedule surgery then.  It is still expected to be in the middle of April, regardless of weight....which speaking of...is still at 8 pounds.  I am actually hoping it's a little higher at this point because we are now adding even more high-calorie formula to my breast milk in addition to some rice cereal to help pack on the pounds!  Fingers crossed it's all working.  We see the pediatrician next week and will have a weigh in then, so I'll have a better idea if everything is working.

Many people have commented that Emily has grown, but it's definitely harder for us to see since we're looking at her daily.  I'm growing tired of seeing her in the same newborn onsies or jammies on a weekly basis, so a small shopping trip will have to happen very soon.  It is expected that she will lose a little weight after surgery, so she'll probably be in newborn until at least 5 months of age.  I gotta get some new things...if I have to look at the same bunny outfit again, I'm going to burn it!

Emily is definitely developing a little personality and as expected, it's mild and sweet.  She LOVES for people to talk to her, look directly in her eyes, and tickle her feet.  She smiles so much.  She has started to coo a little bit and Lilly almost had her laughing the other day.  Her cries definitely worry Lilly, but being the best big sister, she always tries to soothe her while I'm making a bottle or attempting to get to her myself.  She tells her that mommy is coming and gives her baby kisses.  Melts. my. heart.

Our whole family is moving to Atlanta on March 26th and we are so, so, so excited about it.  We have slowly moved into our new house already and while "home" this past week, we unpacked the entire kitchen, had new furniture and a fridge delivered, and worked hard on hanging pictures, shelves, and random decor.  It's really beginning to look like a home.  Our home in Charleston is very sad looking and we're eating off paper plates.  I'm beginning to stress about it all and on top of everything, our house appraised for less than what it went under contract for.  We are taking a MAJOR hit to the bank account to sell this place, but in the long run, it's better for our family to be in Atlanta with everyone.  It hasn't hit me yet that we're leaving all our "family" and friends here, but it will soon.  I suppose that's because I know we'll be back for visits and our friendships here are forever.

The move may be the hardest on Lilly who will be leaving daycare, her bestie, Elloree, and all her aunties.  She definitely will miss her friends, but I hope to get her in some play groups in Atlanta to make new friends.  I think I'm more sad about her leaving her friends than anything!

Next week we will be very busy trying to pack last minute items and wrap up doctor visits.  Hopefully in the next two weeks, we will have some really good information regarding surgery, expectations, and short term and long term affects and outcomes.  Until then, we are off to enjoy this beautiful weather!