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!

T-1 day

Whoooo weeeee.  Holy moly.  Information overload today.  Our day started at 5:30am preparing for Emily's pre-op visit.  We were told that this day would be a long one and to prepare ourselves for an enormous amount of information.  Boy were they right.

Emily will have her surgery at Egleston.  The campus is beautiful and very updated...a huge change from MUSC in Charleston.  We met so many people today, I cannot even begin to name them all.  Most importantly, we met the surgeon, Dr. Kogan.  He was very friendly and explained the procedure and any possible complications.  The most difficult part of the surgery will be dividing Emily's one common heart valve into two functioning valves.  If she has a nice, fat, juicy valve, it will be easy to separate.  If it's a skinny, weak valve, he must work harder at dividing it and making it function properly as two.  The surgery itself only takes about 3 hours.  All the work before hand is what takes forever...running all the lines and IVs and getting her comfortable and stabilized.  She can eat until 3am, breast milk only and can have Pedialite until 5am.  I am so happy to hear this because one of my biggest concerns was her hunger.  My small 9 pounder certainly shows us who's boss when she's hungry.  Our report time to the hospital is 6am tomorrow.  Yikes!!!  I suppose I'll just get up at 2am, give Emily a feed, shower, and drink an enormous amount of coffee.  Not like I'll be sleeping anyway...

We also got to tour the CICU and Step-down unit where she will go immediately after surgery.  We were able to see a little boy (born 12-11-12!) that had the same surgery yesterday that Emily will have tomorrow.  They wanted us to be prepared for the amount of tubes, lines, blood, bandages, and the breathing tube that will all be hooked up to Emily following the surgery.  She will be on a breathing tube for a few days to make sure she's stable and then she will slowly ween off of it once she's met some milestones.  The little boy didn't look that bad.  He certainly had a million tubes and lines running out of him, but it was what I prepared myself for (Billy says the same thing).  I am happy I got to see him.  I stared-a lot.  My neck was about to break off from staring at all the babies in there.  They were all sooooo small.  If you know me, you know I have a staring problem, so I was most likely judged by all the nurses.  Oh well. 

Tomorrow will be a long day.  We can have family in the waiting room, but only two people are allowed in the ICU once she's done with surgery.  I am not inviting visitors into the ICU (other than immediate family) because of the fact that only two people can be in there and it's just cramped and I definitely don't want germs.  We can have all the people in the world come when we're in our own room (day 3-4).  We can take Emily out to the garden in the wagons or strollers and let her enjoy a little fresh air.  She loves the outdoors so I hope we can do that if the weathers allows us to.

Please keep us all in your deepest prayers and thoughts tomorrow.  We have been waiting for this day since I was 27 weeks pregnant.  We are so happy it's finally here and are ready for Emily to be a healthy baby!

One week to go...eeeek!

To start this blog, I want to say THANK YOU to everyone that has posted on Facebook with all the encouragement and kind words you have left on my wall as you've read my posts.  I never know who reads them, and it's so great to see that new and old friends are riding this wave with us-helping us stay focused and sending positive vibes our way.  It really does make all the hard, difficult days manageable when I see the posts telling me/us how strong we are.  Sometimes when you feel so down, it's encouraging to see uplifting words.  This past year has been such a journey for Billy and I.  It has made us work so hard together, communicating in ways we have never done before and relying on one another for encouragement, support, and unconditional love.  At times, I still take myself back to Mexico where Emily began and ask myself if the fruity drinks had anything to do with her struggles.  We have already begun to plan our next getaway and I know that this time, our only goal will be relaxation...no babies :)

This week has been fantastic!  Emily is so, so, so much happier now that we've changed some of her meds and increased her acid reflux medicine.  Last week was probably the most difficult week since her birth.  She cried through every feed resulting in constant frustration and tears on my behalf.  We are so thankful for family that came to the rescue to help feed her and make the evenings more manageable when Billy worked nights.  Without family, this whole journey would have been such a greater struggle.  This week, Emily has eaten all of her bottles...more like a "normal" child would.  She's also been reaching for objects in her jungle gym and toys surrounding her.  It's pretty typical for kids with Down syndrome to forget they have arms and to use their legs and feet to grab items.  It's a milestone in my book to see her grabbing.  In addition, she's also been cooing and interacting with us so much more.  These are goals we had in her IFSP (her plan of goals we set with her therapist) in Charleston.  Tomorrow, we meet with Babies Can't Wait for her evaluation to begin services here. 

This week has also been great for Lilly.  She's had so much fun playing at the park with friends and we took her to the Yellow River Game Ranch today to see some animals.  She had SO MUCH FUN!  Billy was off and was able to come too.  It was such a wonderful day topped off by a date night with April and Dan. 

Today marks one week until surgery day.  I'm getting nervous...time is nearing...I'm trying to stay calm.  Essentially, for a small period of time, Emily won't even be living on her own.  Bypass machines will work for her.  It's so, so, so scary to think of this.  I get nervous and scared thinking of the doctors running all her lines and poking her.  I know it will cause pain and I don't want that for my little girl.  There are so many people here supporting us that it will be much easier to get through the surgery and the difficult days afterwards.

As I get ready to go to bed tonight, I reflect upon all the great aspects in our life.  I am so grateful for each and every person keeping us in their thoughts and prayers!

A Slap in the Face...

Today was a reality check.  My mom and I spent this beautiful morning/afternoon at the park with Lilly and Emily and had a blast.  Lilly is getting more and more brave at playing on the "big kid" toys which is so fun!  She was absolutely fascinated by kites and tomorrow we will definitely be getting one for her.  She is going to be so much fun this spring and summer.  She's growing into such a big girl-talking and making me laugh (hard!) on a daily basis.

Mama kites!

With this fun time at the park brought me a slap in the face.  Hard.  We all have rose-colored glasses on while looking at Emily.  She's so strong we all think.  She came out kicking and screaming.  Like I've said in the past, she was not gray like we thought she'd be, but pink like a piglet!  Our therapists all have great things to say about Emily, but today, I can't help but be sad and face reality.

While Lilly was playing, I met another mom who had a three month old.  She held her head up without it bobbing or falling back as if it were going to fall off, stood on her mom's legs without crumbling, sat in her lap with a straight back, and really observed life around her.  I picked Emily up only to have her do the usual crumble into my arms, unable to support herself in any way, shape, or form.  It made me take off my glasses and realize that we have a long road ahead.  Not only is Emily's strength significantly delayed, but she's just been having a hard time lately.  Feeding is becoming such a task...as if it weren't already.  She's beginning to get clammy (which is a sign of heart failure), and she is not as vibrant and full of life as she was a few weeks ago.  I am so thankful surgery is in a week and a half.  I think someone is telling us that now is really the time.

I am usually a very positive person and I have always seen and treated Emily as if she has no challenges.  The reality, however, is that there will be lots and lots of challenges ahead.  Today made me realize that.  I'm going to make the best out of today though and spend this beautiful weather outside with my girls.  Despite feeling defeated, I have two little angels to take care of today. 

Doctor, doctor, doctor!

It's Thursday and we've had such a busy week already!  We ended last week with a cardiac appointment which was uneventful.  There were no changes in her condition and we don't have to go back until after surgery!  I am so thankful for that.

We began this week with an endocrine appointment at Egleston and met a great doctor, Dr. Patterson.  She was really, really thorough and looked through all our medical records to help better inform herself.  Emily had to have blood drawn and for the first time since birth, a competent individual took her blood from her arm without blowing the vein (which is really important considering surgery is in two weeks and we need every vein in  her little body to be in perfect shape).  Her thyroid was a little elevated so we changed up her meds once again and hopefully she will be in good shape for the next blood draw. 

We also met our new pediatrician, Dr. Fotion.  He was really nice and thorough as well.  He specializes in genetic disorders so he came highly recommended by some of our other speciality doctors.  His practice (Snellville Peds) is not recommended by fellow moms because of long wait times, so I hope this does not become a problem.  He gave me all the necessary paperwork for making audiology and vision appointments as well as helping me get in touch with the Down Syndrome Center in Atlanta.  It's important that Emily get in with the DSC because they help parents stay "on track" as far as developmental and cognitive milestones are concerned.  We also contacted Babies Can't Wait to begin our Early Intervention and therapies and are patiently waiting to hear back from them for our initial evaluation.  Emily has not received therapy services in three weeks so it's time to get back on it!

We received all our information for the surgery as well as an informational video from the Sibley Heart Center.  It's a lot to take in.  At this point, we really don't want anyone except immediate family at the hospital on surgery day.  The hospital discourages troops of people...especially considering only 2 people at a time are permitted into the ICU once surgery's done.  After a few days Emily will head to the Step-down unit and visitors (only PERFECTLY HEALTHY) ones are permitted in there.  It's kinda crazy that in two weeks our sweet girl will undergo such a dramatic procedure (in my mind).  I can't even imagine how uncomfortable she will be.  Hopefully she will be heavily medicated so that she won't feel a thing when they run IVs and other various lines.

We are still so happy to be home and have enjoyed every second of the visitors that have filled our house.  All of our parents have cooked for us and helped out in the evenings while Billy is at work and that has been so nice.  It really makes the day pass and makes it manageable.  Being home alone in the evening is not fun at all.  Lilly has transitioned perfectly.  I think she's so distracted by all the family around that she hasn't really noticed the fact that we're not in Charleston anymore.  She is still excited to go to her "new home" after running errands.  She was seen by Dr. Fotion as well because she got an ear infection and her little ear was just gross.  She had a fever and was down and out (for only a day).  She's on the mend now and back to her normal self.  Today we're going to organize her toys.  We need to do some serious organization because she has way too many things and parts of toys are scattered all over.  It's driving me crazy!

Have good weekend everyone! :)