Two Beach Babes :)

Whoooooo weeeee, it's been too long since I last touched this thing!  I have not even laid my hands on a computer keyboard for almost a month.  Summertime has come and is taking us by storm with all the fun we've been having!  We've spent the majority of our summer so far at the beach, bronzing our skin and turning our hair even blonder.  Both girls have their first little suntans and it's oh so cute!  Lilly's hair is snow white and Emily's...well, it's still brown--borderline red.  Where that comes from, I'm not sure!  Maybe the mailman.

Reading with her Papa Joe at the beach.  She loves being read to!

Enjoying the ocean breeze!

Emily is progressing along just like she should.  She's hitting the milestones that we'd like her to achieve like holding her head up, spending some quality time on her tummy, reaching for toys with purpose, and becoming stronger and stronger at sitting up.  She still has very, very low muscle tone in her arms and back, but our physical therapist is fantastic and she is teaching us so many tricks and therapies to get her stronger!  I really hope that in a month or so, she'll be sitting up.  Fingers crossed!

I attended a class at Emory on raising children with Down syndrome and it was so informational!  There were lawyers, financial advisers, and pediatricians there to help answer questions and provide helpful information.  It's extremely important that we have someone in charge of our finances that has Emily's best interest in mind once we're gone.  We definitely learned that and all about Special Needs Trusts...basically the only account that we can have for Emily that won't affect her receiving financial assistance.  The pediatrician that was there harped on making sure we were on track with all the doctors that we need to see....so after that, I now have a whole new slew of doctors to visit.  It's time to get her eyes checked, 6 month shots, visit an ENT, and become established at the Down Syndrome Clinic.  Whew!  In additional, we have weekly PT which comes at 8am!  Talk about getting an early start to the day.  Our physical therapist, Mary Elizabeth, is so kind.  The whole family approves of her, even Luke.  You must get into his circle of trust to become a family member and Mary Elizabeth will be a very important part of our family for the next 3 years.  She's a graduate of UGA (which we definitely approve of!), she's young, and attentive to both my needs and questions as well as Emily's willingness to "participate" in PT.  Even at a young 6 months, my little sunflower has quiet the attitude and will let one know if she's not willing to work.

Emily has learned how to blow bubbles with her mouth and wiggle her way around the entire crib with her buns of steel.  She uses her lower body constantly.  She will have very muscular legs, that's for sure.  She loves to hold her hands to her mouth and give the biggest smiles...this is especially done when she's eating, much to my dismay.  Speaking of eating, she is a PIGlet when it comes to eating baby food.  I have not come across one food that the child didn't love.  We may be in trouble! She is literally inhaling the baby food.  Now that she gets the good stuff (well, I wouldn't say pureed carrots is good...), she doesn't think she needs bottles anymore.  I still have a little breast milk left, but that's going to come to an end soon too.  When I say she's a piglet, I mean it.  I guess she's making up for all the lost time and struggle of feeding before surgery.  Anyhow, she's doing GREAT and loving life.

Our other little angel is just that, an angel, that occasionally wears devil horns.  The things that she says these days baffle me.  Where do two year olds come up with some of their comments?!!  As I am typing, she is asking me what I'm doing and with no response from me, she yells, "TALK TO ME!"  and proceeds to tell me that I'm not very nice.  She talks 24/7, literally.  She doesn't rest her voice.  The beach was a whole new experience for her this year and after one whole week of being terrified of the ocean and waves, her uncles finally convinced her to go in the water and play.  From then on, it was perfect!  She loved building sandcastles, chasing the birdies, and swimming in the pool after her 3 or 4 hour(yes, you read right) nap.  I suppose all the fun in the sun just wore her out!
Lilly is in love with gymnastics and does somersaults all over the house on a daily basis. I think doing something like dance or gymnastics is just what she needs.  She can run and jump and hop and which is perfect for her petite little frame.  She is such a munchkin.  After being at the beach for two weeks, I became very frustrated at the fact that over 1/2 of her new bathing suits were too nig in the waist.  Once we got back from the beach, I headed to the attic to big through last summer's tub of clothing and drug out all her old suits as well as some shorts that STILL FIT!  She wore an 18 month outfit yesterday and is wearing 12-18 month shorts today.  She is nothing but skin and bones-and trust me...we don't go light on the fruit snacks and goldfish over here. 

Poor bear.  If you look closely, he's wearing Luke's dog collar.  Lilly could play with her bear for days!

These two pictures capture her personality to a T!

Life is about to get just a weeeee  bit harder because my paychecks from work have officially....S.T.O.P.P.E.D!!  Yikes!!!!  This is definitely going to be very, very, very hard to a girl like me that finds an errand to run daily.  It's also hard on "slow" days to sit around the house and think of all the decorating that needs to be done on a negative budget!  We now live in this big house with only 75% of it furnished.  Maybe we will win the lottery or fall into some big fortune by a long, lost relative (that we don't know of). 

Mothering is calling me now.  Emily is winding down for the night and this is her fussy time---which is why I gave into the pact that Billy and I made that we would not have a beer until our anniversary (this Friday-5 years!)....the 6:00pm hour calls for beveraging.  Plain and simple.  I give in.  Oops!

Until later...!

Summertime is here!

Sweet, sweet summer is here and the fun has begun!  It stills feels weird to be spending our summer in Atlanta and not in Charleston.  This summer is an adjustment for all...Lilly is not in school and staying home all day, there are TWO kids, not one...and it's a loooonnngggg way to the beach :(  I got a little taste of Charleston fun last weekend when I went to clean out my classroom, thus closing that chapter in life for a while.  I know that at some point, I must return to the classroom, or at least something in the educational field.  Six years of teaching fit onto two shelves in our shed.  It was kinda sad looking at it all packed up.  My friends talked about the impact students said they made on their lives as they looked back on the school year and I miss that feeling, a lot.  My sub said kids were crying about not seeing me one final time.  I didn't really want to go back the day school ended and get them all fired up.  All teachers know what the last day of school is like and coming in would have created a disaster!  Anyhow, that chapter is closed-for now-and I am enjoying my new occupation as "mothering".  Those that say a stay-at-home mom has an easy job deserved to be slapped.  It's much more difficult than people think.  Sometimes I long for a day at work in a building other than my own home.  I'm jealous at times that Billy gets to go and talk to ADULTS!  With all this said though, I wouldn't trade this job for the world :)

A few weeks ago, I enrolled Lilly in gymnastics and she loves, loves, loves it.  It's such an outlet for her to go somewhere and run WILD.  She thrives on structure and the class provides just that.  As I was watching her yesterday, I was reminded of how much she needs school and really enjoys the routines and structures of teachers.  It's just her personality.  She has a blast here at home playing babies and kitchen, but August will be fun for her when she goes back to school part-time. (I am currently watching her "read" to her baby that's in Emily's carrier-so sweet).
I know that Lilly is really happy to be near all her aunts and uncles and grandparents, especially.  She begs to see all her Papas and never, ever, ever looks back when she has a sleep over at Grammys.  She's out the door before I even have a chance to say goodbye.  I remember staying over at my grandmothers as a young girl and it was so much fun!  We did things that mommy's and daddy's don't do.  Soon enough, Emmie will be flying out the door right along with Lilly.
Lilly also had a playdate this week with a new friend, Astrid, and she had so. much. fun.  It was awesome for her to get out and play with someone other than myself and her pretend dolls.  She conversates with them on a daily basis and it was nice to see her actually interact with someone else and see the joy the day brought to her.  She's currently napping after wearing herself O-U-T!

Emily is doing great as time progresses!  She's still working on strength and she's definitely stronger.  When I pick her up out of the crib, she's much sturdier and not as floppy.  You still can't carry her on your shoulder without her flopping backwards, so one hand is always a must.  In addition, she still can't be carried on the hip-which I long for!  Our therapist said not to do that anyways because it's not good for the hips (in kids with DS).  Boo on that.  She's doing really, really, really good with tummy time and is holding her head up for extended periods of time.  She don't love tummy time, but I haven't met a baby that did.

Even with all the positives, there's always some negative to my week in the realization that I have a special needs child.  Will I ever get over that and just accept it?  I always seem to look for other kids with DS and judge them (because I'm known for judging).  I just can't seem to help it.  I look at height, necks, arm length, eye structure...and I wonder deeply what Emily will look like.  At gymnastics class, there's another mom that has to bring her baby while her toddler plays and she's two weeks younger than Emily and at least twice her size.  While the toddlers were playing with balls, the other mother had her baby on the mats, SITTING UP all by herself.  Whattttt?  We work tirelessly in the Bumbo and the Boppy trying to get some back strength and nada. No sitting up.  No attempt.  Falling only.  Even though kids with DS meet their milestones much later, it's still hard to accept.  It seems like I will always be judging Emily based on other kids.  I know that I will stop, but it's only been 5 months of having her in my life.  Do all parents with special needs kids go through this?  I'm taking a class this Saturday on raising a child with DS and it helps parents understand milestones and what to look for (as well as coaching me on this damn Katie Beckett stuff).  Later in life, there are even more battles to fight when Emily gets older.  While this may be very aggressive, some parents actually have their kids tubes tied that have special needs.  What if Emily goes off to special needs camp and falls in love with another camper and they do the wild thing?  And she gets pregnant!  It's highly unlikely considering those with Down syndrome are usually infertile, but it could happen.  Some get a hysterectomy because they cannot manage their periods.  WWWWHHHHAAAATTTT?  I mean, this is crazy, right!!??  Despite how wrong I see these things as-they are realistic, and they are things we must think of because we really don't know what our path will look like 15 years down the road. We gotta think long term and short term.  I'm stuck in the short term, but I think that's what I need.  One. Step. At. A. Time.  

Anyhow, despite all this thinking I've been doing, life is grand and Billy and I are really happy to be in Atlanta closer to family.  We have our own first slumber party this weekend with friends and the kids are spending the night at Grammy and Papa Joe's house while mommy and daddy act like fools.  All this serious business we've been through calls for a little playdate of our own :)

Off to take 5 minutes to relax before one of my children needs me attention :)

One happy girl...

The past week and a half have been fantastic with both of our little rays of sunshine!  The weather has finally gotten nice out and both girls are enjoying playing outside.  Our sweet Emily is chugging along, growing like a massive weed!  She is actually beginning to look fat-can you believe it!?  Her legs are huge, and well, her head is in like the 90th percentile.  It's a big one.  Her belly looks like a buddah took over.  While these features are common of DS kids, I can easily ignore those factors and relish in the fact that she's in 3 month clothes and those are quickly becoming tight!  Yes!  I also cannot stop smiling at the fact that this Friday, she gets to go back on breast milk.  I know she doesn't know what it means, but I am so, so, so excited for this.  I worked incredibly hard to get as much milk stored as I possible could before surgery and I am eager to begin using it!  I declare it a major labor of love to pump every three hours for 4 straight months.  Pumping, my friends, is very different than actually nursing.  More cleaning, more time, more everything.  Lilly was a champ nurser, so I can easily tell the difference in the frustration and time consumption.  I have 4 cases left of the Enfaport, the formula she's on, and hopefully we can send that back next week.  We will have to get a chest Xray next week to check her lungs and surrounding areas to make sure fat did not build back up.  If all goes well, bye bye formula.  She's finally gotten used to it and is not throwing it back up with every feed.  The doctor did warn us of that...he said most babies find it so disgusting they vomit everytime, resulting in a feeding tube (which was our situation for quiet some time).  Things just keep looking up for sweet Emily.

Emily's disposition is one of pure joy.  I swear the kid is just happy to be alive.  She's endured so much in her little life already that every smile someone gives to her, she returns one immediately.  She's happy and sweet spirited.  When she smiles, it's big, real big!  She loves to suck her thumb, which I suppose is better than Lilly's addition to the pacifier.  She is also beginning to hold her head up much better.  If I put her in the sitting up position, she will sit against me and actually keep her head up without bobbing it.  One step forward!  She is finally getting her PT evaluation this Friday and I am happy to finally begin these services again.  Her features of looking like a child with Down syndrome are becoming more predominant, and I have had two people ask me recently if she has Downs.  Like I've said before, I'd rather people ask me than stare! It has been people that have siblings with DS, so I assume they know what to look for.

Speaking of my big ball of energy, Lilly---we are beyond proud of her for using the big girl potty!  She is so proud each time she goes to the potty.  The one drawback of potty training is that she thinks that everytime she pees, she must shed every article of clothing she's wearing-and doesn't want to put it back on.  I've started to put her in only dresses so that it's only one item to put back on after she goes.  She is scared to go in public places and held it for at least 3 hours while we shopped at Lakewood 400 and traveled back home.  She gets that from me.  Apparently when I was little, I was scared to go in unsanitary places.  I still am.

We're headed to the beach for two weeks in June and I think we are all excited to escape the house for a little sliver of paradise.  Billy's parent's new house in Anna Maria is absolutely breath taking and makes you feel like you're in a bubble land.  I can't wait to get Emily's toes into the sand for the first time.  If she's like her big sister, she'll be eating the sand, running wild, and screaming for joy when she sees the ocean :)  So much to look forward to!

On the Mend!

Great news this week as many of you have already read about Emily!  I think I am more excited than she is to have the feeding tube taken out and to know that in only two weeks she can go back to breast milk.  I cannot imagine having to drink the nasty formula she's been on.  It smells so bad--10x worse when it comes up.  She seems to finally be used to it and no longer gags when she feeds.  When we left the hospital, the surgeon assured us that we would be on a feeding tube for quiet some time because many babies reject the formula due to taste and it just has to be pumped into them.  Thank goodness Emily was a trooper!  The cardiologist is still a little concerned about her weight gain.  She's still not at 10 pounds and will be 5 months old tomorrow.  She weighed in a 9 pounds 12 oz.  I MUST wake up in the night (now that the tube is gone and not giving a constant drip all night) to feed her- at least once.  Last night I woke up at midnight and she ate an entire bottle, but at 4am, she wanted nothing to do with eating.  We have to continue feeding in the night to make sure she consumes enough calories throughout the day for both body and brain growth.  I'm pretty tired today, so I think I'll be drinking more coffee throughout the day! 

We also signed all the paperwork to begin services through Babies Can't Wait.  It seems to move MUCH slower in Georgia than it did in SC.  We received physical therapy within a week of filling out the paperwork in South Carolina.  I have been to two evaluation meetings here and it will still be another few weeks for the physical therapist to come evaluate Emily to see if she qualifies.  I got somewhat snippy with the lady that said this because I could not fathom how a child born with DS would not qualify for therapy.  She's like a limp dishrag!  How would it do her any good in the long run to not receive services for strength and muscle tone?  When people said it's a constant battle when you have kids with disabilities, I now see what they mean.  Advocate is a major word in my vocabulary and I foresee it being that way forever.

It's still pretty difficult to see friends of Facebook that post pictures of their two month olds that are sturdy and holding their head up...Emily is no where near that.  She is still like a newborn.  No strength.  Her legs do have some tone though and she loves lifting them high in the air.  It's so funny to watch her at night play in her crib while trying to go to sleep.  Her arms though will fall to the ground when you lift them.  Her head still bobbles around.  It's difficult.  The lady that had me sign paperwork for BCW said she most likely won't walk until she's 2 (which I knew, but when you hear it out loud, it's different).  I also had someone ask me yesterday if Emily had Down syndrome. It's the first time I've ever been asked.  I would MUCH rather someone ask me if she has it than to stare.  If you know me well, you know I don't mind answering questions, so I was actually happy she asked me (it happened to be a lady in the cardiologist's office...which I am sure she put two and two together that Emily had surgery and looked a little different-as most kids with DS have heart surgeries and frequent the cardiologist). 

Lilly started gymnastics this week and LOVED it!  We will have to get her a little leotard.  All the other girls wore one and I know she will look as cute as a button in one :)  I'm taking both the girls next week to get some pictures done because we're about 4 months behind on them!  I can't wait to get some updated pictures of them around the house.

All is well here-we're taking it one day at a time!

A new beginning...

Life is moving right along for us all.  It is truly amazing how different Emily already is with her "new" heart.  She has come alive.  She coos, wiggles 24/7, tracks objects consistently, has grown and actually seems like she enjoys life!  I didn't think we would see a difference in the way she would react to the surgery so quickly.  She no longer sleeps the day away and loves being in the middle of everything we're doing.  She is FASCINATED by Lilly.  Every single move Lilly makes is tracked by Emily.  She loves when Lilly plays with her feet, "feeds" her, and gives her kisses like I do.  Lilly I suppose feels like she's her mama.  She helps pick out outfits, bathe her, change her, and even knows how to check the placement of Emily's feeding tube before administering meds or milk.  I caught her playing doctor to Emily the other day while she didn't know I was looking.  It was hilarious and touching all at the same time.  Lilly cares for her sister more than I ever knew a 2 year old could.  She's so cautious and reminds everyone of her booboo and that we must be careful.  She never gets frustrated when Emily needs extra attention or if she can't sit on my lap because Emily needs me.  Lilly is such a kind, gentle soul.  I'm not exactly sure where she got that from because both Billy and I are impulsive and I, frankly, am very impatient.  This journey has taught me extreme patience, but sometimes it definitely hard to control!

Doctor Lilly Mehlinger

Sisterly Snuggles

We had great company last week with the visit of Lilly and Emily's aunts, Creeden and Gail.  They came to see our girls and Lilly of course was smitten to have them here.  They were bossed around the entire time they were here, but Lilly was in heaven.  We miss our friends in Charleston everyday.  It doesn't get any easier.  It never got easier when we lived in CHS and had all our Atlanta friends here.  We cherished all the trips home and quick visits and I suppose that's what we will do with our forever friends there!  I am prepping for a trip to Charleston at the end of the month because I still have my entire classroom to pack and move.  I'm not looking forward to that.  There has been a long-term sub filling my position for the year, but it's time to wrap up that chapter and put things into storage.  I'm taking another year off from teaching to get my feet back on the ground and figure out what life is like with a special needs child-or what normal life is like with two!  So far, it's extremely hectic and I'm not sure how people ever find time to work with more than one child.  I'm currently doing laundry load #5 of the day and it's only 11:28am.  There's no time for the paid kind of work! 

Aunt Creeden and Gail with the girls watching The Wiggles.

We have signed Lilly up for gymnastics classes at The Little Gym so that she can get some of her endless energy out.  She gets that from her Uncle Matt.  It must run in the blood line because she never tires.  Her constant talking comes from her Grammy and her sense of caring and patience must be a combination of her Mimi and Nana.  Emily is finally going to begin therapy this Wednesday.  The Early Interventionist will be over to write up her IFSP, or goals and developmental milestones that she should meet for her age.  We're not cleared to do heavy duty work with her until 6 weeks.  I fear that she definitely has lost more muscle tone in her neck because we have not done tummy time in weeks.  She is sitting in her Bumbo again so that will hopefully help a little.  She was denied SSI and Medicaid which is very frustrating because we are literally drowning in medical bills.  Her surgery was $128,000.  On top of that, there are various other medical expense bills that keep rolling in.  Just because we make money doesn't mean that we can pay all the expenses.  Her disability was not something I chose and I just don't understand the justification as to why we cannot receive assistance.  We will most likely reapply after my paychecks stop from the school district...which is not until August-so until then, I should probably just send CHOA my checking account number for autodraft.  Ha!

As for Emily's recovery, it's going perfectly.  Her scar looks like a little zipper.  I meant to take a picture and post it on here but she's sleeping and I don't want to wake her.  I'll have to post one next time.  It's not scary or gross looking at all.  It's healed almost all the way.  She's still feeding at night by tube, which, for the second time last night, she decided to pull out!  I am pretty sure she's making her point that it sucks to have it in.  I am going to beg the cardiologist to let us take it out next week.  I'll commit to waking up at night and giving her an extra feed.  It's making bug  red marks on her face and I can only imagine how uncomfortable it is.  If she has shown significant weight gain, he may be on board with my compromise :)

Off to shower for my brother's graduation!  He graduates from GA Tech today with a degree in Physics and a minor in Japanese.  Who does that!!??  He's off to Columbia in NYC in the fall.  I'm so proud of him!  Plus, to be selfish...this allows for a date night for Billy and I while we celebrate with the family :)  Whooo hoo!

Smiles for all!

Well, the surgery came and went and life is 100x better now that we're all home and settled.  Living as a fragmented family for a week was really difficult.  Billy and I missed each other; we missed Lilly, and I must say, at times, I actually missed Luke (it hurts to type this).  Our house was a disaster area for a week straight, but thanks to amazing family, it's back in order as of 20 minutes ago.  The "twins" as we call them, Grandma and her sister, Pearl, came over this morning while I was at the doctor with Emily and did 4 loads of laundry and whipped this place back into shape!  We have eaten like royalty and despite all the cakes and casseroles, I am pleased to say that I have not gained a pound over the course of this event!  I thought sitting in the hospital all day eating chocolate and drinking enormous amounts of caffeine would really pack on the pounds, but I guess my brain has been on overload and burned calories for me.

When Emily came home, it was absolutely bittersweet.  Lilly was SO EXCITED to see her!  She demanded that I put her down to see her.  She was a little scared by the feeding tube, but she was fascinated by her big "boo boo".  Being the dramatic girl she is, Lilly created her own "boo boo" and now wears a bandage to show she's brave too.  Lilly has been amazing with Emily since we've been home.  She understands that Emily needs a little extra TLC and requires more work than before.  She helps administer medicine, grabs burp cloths, and of course, is always in on the action when it's time to change diapers.

First home snuggles

Just because Emily is home doesn't mean it's all roses and sunshine.  She has reverted to being a newborn again.  We took two steps forward but two steps back as well.  Her heart is doing phenomenal.  We saw the cardiologist this morning and he was so pleased with how everything looks.  Her valves will always be somewhat "leaky"...that's just the nature of her defect.  The fat build up around her lungs has completely gone away with the new formula.  Speaking of formula...this stuff is no joke.  It's DISGUSTING and I'm wearing it everyday by 9am.  It's not like normal baby formula.  It's thick and rich and obviously is difficult to digest because Emily never keeps it down.  She now only takes 2oz of milk every three hours.  She gets a drip through the feeding tube at night for 8 hours-an ounce an hour.  They are trying to get her to "catch up" (on weight) from before surgery.  She still sucks really well from the bottle even with the tube down her throat.  The doctor said another month on the tube and formula and then hopefully she can go back to breast milk.  Hopefully can happen because if not, I've got 5 months worth of frozen milk to donate!

Nighttime is difficult for Emmie.  She wakes up several times, cries out, and it's very difficult to sooth her.  Being held too much or moved around is, for obvious reasons, uncomfortable.  I don't know what her cries mean anymore.  Before surgery, she cried only when she was hungry.  Now she's much fussier.  I know it's probably discomfort, but it's hard to decide sometimes.  Reverting back to infancy, we are constantly questioning ourselves if it's hunger, over stimulation, exhaustion, pain, or just attention seeking.  Just when we thought we had it all figured out....

Life is getting back to normal and hopefully the next 6 weeks of her recovery will go by quickly and we can enjoy our summer.  We have some great trips planned with the family to the beach and I think we are all definitely over due for some R&R.  As I've said a million times, this journey would not have been possible without our family who helped in more ways than I can possibly list and the masses of friends who pitched in or just offered prayers, kind words, and constant thoughts.  Every person in our life made this possible and we are so glad you are on the journey with us!

Just when we thought we were in the clear...

This week has been the most trying week of our lives.  Emily's surgery went well and she was doing great post operatively until today.  The surgeon was able to repair both holes and was able to separate Emily's heart valves into four separate ones, making the heart complete.

However, with any surgery, complications can definitely arise.  We were released from the CICU yesterday around 5pm and she was placed in the Cardiac Step Down Unit.  We were thrilled to get our own room.  Emily was in a tremendous amount of pain last night, and unfortunately, was not given enough pain medicine.  I told the nurse that no matter what, she is to be on pain medicine every 4 hours...whether she's crying for it or not.  Around 2am last night, she was in excruicating pain. Screaming into the night, frothing at the mouth, and flailing all over.  I paged the nurse and within 30 minutes she'd received some Loratab and was out like a light, sleeping like a baby :)  From that point on, she's received pain meds and has been much more comfortable.  I didn't get any sleep.  The nurses were in and out of the room every few hours and with Emily crying, it was just really stressful and I was unable to sleep.  At 4am, her day (and mine!) began with labs and Xrays.  I was almost thankful to see the clock tick to 6:30am because at that time I actually allowed myself to begin gulping coffee.  I almost asked the nurse to just hook me up to an IV of it so I could feel the affects immediately.  I have drank an enormous amount of caffeine over the past few days.  I feel like I literally smell like coffee.  I am sweating it out of my pours.  At this point, it seems to be ineffective!  I don't even remember feeling this tired when she was born.  We always had her night feeds when she was an infant, but this is a whole different ball game.  The stress, unknown, and her suffering causes a whole new level of exhaustion.  Tonight, Billy is at the hospital staying with her while I am home with Lilly.  I'll be back tomorrow afternoon and will stay the night again tomorrow.  At times today, I've felt dizzy from just standing from the lack of sleep.  We had lots of visitors today which helped make the day pass and Emily seemed to really enjoy seeing all her family. 

Initially, we were told she may go home tomorrow (Sunday), but she's developed Chylothorax.  This is a condition in which fluid surrounds the lung cavity causing the body to output fat.  So instead of draining blood and other fluids from her chest tube, she's draining pure fat.  The drainage tube looks like she's had liposuction.  This is definitely a serious condition which could result in her having an extended stay in the hospital or possibly another operation. Because her body is excreting so much fat, she is now on a fat free formula.  No more breast milk for 6-8 weeks...which is devastating to me because I know my breast milk is providing so many more antibodies than the formula.  She has not responded well to the formula, throwing up twice.  If she continues down this path, she will have to be fed through a feeding tube.  The doctors said that many babies must be fed this way because the formula tastes awful.  In addition to the fluid building around the lungs, both of her new heart valves are leaking.  This is common after surgery, but if it continues, it will result in her receiving another operation to tweak the leaks.  I cannot imagine her going through surgery once again.  One time was painful enough for us all, especially her.

The days are long and if I must be honest, boring.  Poor Emily is very difficult to hold due to the wires and chest tube and she doesn't particularly care to be moved around.  She is alert and wants to play, but it's painful for her.  Today, she was pretty happy and I hope that despite these new complications, she stays alert and at peace..

Lilly has continuously asked for her and I have talked a lot about the big boo boo that Emily has the the big band-aid that's on her chest.  We Skyped last night and she was able to see her which I think really helped.  Lilly has also been through the ringer.  She's been kept by lots of different people and her world has been turned upside down.  She's enjoyed all the visitors, but it's definitely obvious that she wants her mommy, daddy, and sister Emmie home together.

We are so thankful for all the meals that have been brought to us and the constant out pour of well wishes and prayers.  Tomorrow is Sunday...say and extra prayer at church for Emily and her recovery process.  Your words of encouragement go a long way for Billy and I and we are forever grateful!