Post Surgery: Days 14 - 17... No Expectations.

I started writing this post early last night and although EVERYTHING has changed in the last 18 hours, I am posting it all for records sake.  

April 29, 2012 @ 8pm...
In the last few days, we have really gotten a hang of this hospital gig.  We are now in room 408 on the peds floor, which is the 7th room that our family has taken over since the day this whole journey began.

Every day, Londyn is surprising us with how well she is handling this entire experience.  From what we are told, she has been a peach at Gma Milne's and Auntie Nell's.  She has even been able to come visit for long amounts of time, napping with Daddy here at the hospital and enjoying sweet moments with her sister.
{2 hour nap on our air mattress in Zoe's room}

Friday night was the first time I left the hospital since Monday.  Andrew stayed with Zoe, so I could have a night with Lulu at home.  I got lots of snuggles and sweet moments with Londyn, a bowl of top ramen (odd comfort food, I know), a hot bubble bath and 7 hours of sleep in my own bed.  Normally, Lulu waking up at 6am would be the pits... but a 6am wake up call isn't so bad when you aren't up every hour, tending to alarms... a crying babe... or just the fear that your infant isn't breathing.  It was such a nice break, and while I thought I would be nervous and missing the Mr. and littlest Miss, I took full advantage of the short break.

Zoe has been working hard to wean off of the oxygen canula, but just couldn't kick it completely.  Until last night, she had been flirting with 50-30 cc's of O2 and anytime we tried to knock it down to 20, her sats would drop.  When I fell asleep last night, she was set at 50 cc's.  When I got up with her at 3am, I checked her oxygen my jaw dropped when I saw that her oxygen was completely turned off.  On top of that, her O2 sats were in the low 80's!  I was amazed!  It was like she just all of a sudden decided to fly solo and did just that.
{Look!  No oxygen canula!}

Dr. King has been in various clinics since Monday, so we have only seen the other cardiologists in his group this week.  I was so relieved to finally see him during rounds this morning because with all of Zoe's progress, we are ready to bust out of this place!  He said her chest x-ray and echo looked great.  She no longer needs regular CPAP treatments, only as needed.  He said she no longer needs all the monitors and wanted us to stay today and get comfortable caring for her, without relying on the monitors to tell us how she is really doing.  It is so nice to have all of the wires, tubes and IV's off of her.  I was able to snuggle Zoe on the boppy with Londyn on the air mattress today.  It was such a sweet glimpse of my future with these two cutie girls.

{Singing "I'm a Child of God" with my girls}

The best part of Dr. King's visit was when he told us we would probably be able to go home tomorrow!  As long as she continues to do well with her feeds and breathing through the night, she can be discharged tomorrow.  One of the last items of business is the "Car Seat Challenge".  It sounds like a reality tv show for babies... but instead, she will be hooked up to the monitors and must sit in her car seat for 90 minutes - that's right, NINETY MINUTES without her HR or O2 Sats dropping.  They do this test to make sure she tolerates the car seat well, so as not to have any problems on the car ride home.  I'm super nervous because those 90 minutes will make or break Zoe's chances of getting out of here.  Ultimately, I only want to be discharged if she is 100% ready and stable enough to go.  Really though... as much as I have loved and appreciate this hospital, I will not be sad when we bid ado!

April 30, 2012 @ 5:30pm...
Remember when I said that I was going into this without any expectations?  Well, apparently I needed a  reminder!  About 18 hours ago, we had spent an entire day sans monitors and oxygen support.  Zoe had been fussy all day, but we didn't think much of it.  I just assumed she was getting her energy and acting like a normal baby.  Wrong.

We started the Car Seat Challenge at around 10:30pm and after just a few minutes, Zoe's vitals started to drop drastically in every area.  Her O2 sats were as low as 49 and her temperature reached a high of 102.  Along with the nurses, I spent the rest of the night trying to keep her as cool and comfortable as possible.

Dr. King came in @ 7am to check on her and he ordered another chest x-ray labs and culture of her incision that has been having a difficult time closing completely.

When I realized that something was seriously wrong this morning, I was crushed.  The sleep deprivation and overwhelming amount of worry was a bad combination and I was a mess.  Dr. King suggested that I go home and get some rest and our nurse Katie offered to call me if there was any changes.  

After I got home, I took a hot bath and got some good snuggles from Lulu.  I then took a 2 hour nap, spent some time with Londyn and Andrew and then he dropped her off at Gma's, so I could get another 2 hours of sleep.  I took a shower, curled my hair and grabbed a Diet Coke.  It wasn't nearly enough, but definitely made a difference!  I wasn't such a puddle and getting out of the hospital for a bit was SO necessary.

Katie called and left a message, letting me know that Zoe's white blood cell count came back elevated and with the combination of her fever and oozing wound, they are pretty certain that her incision is infected.  They started her on an IV of antibiotics and continue to medicate and re-dress her wound regularly.  The antibiotics helped almost instantly as her coloring is much more pink, her O2 sats are in the mid 80's and she isn't whimpering constantly, like she has been for the last 24 hours.

I am now back at the hospital and by her bedside.  She looks and sounds SO much better!  Dr. King and case manager Tami came by before they left for the day.  Dr. King said that it will be at least 1 to 2 days before we get the results from the incision culture and the blood culture.  If the infection is in the blood, we could be looking at months of serious antibiotics and a tougher bug to kill.  If it is a local infection in her wound, we are looking at 1 to 2 weeks of antibiotics.  Either way, we will be here for AT LEAST another week... if not longer.

Really and truly, we are so blessed and fortunate to have caught this before leaving the hospital.  With how weak Zoe is, this infection could have been fatal if not treated right away.  If we had been home, who know's if we would have down-played her symptoms or been able to recognize the severity of her discomfort.  We'll never know... but we will know that we were and are very lucky to be where we are, in the care of such great doctors, nurses and various therapists... all working so hard to give Zoe the best fighting chance.   


Post Surgery: Day 12 & 13 - Reality.

The last 48 hours have been the most hands on I have been with Zoe in the last 14 days of life thus far.  Even though Zoe isn't my first newborn to care for, she is my first newborn heart baby.  So much of the experience with Londyn goes completely out the window with Zoe.  Caring for her is an entirely new dance... really listening to your motherly instincts, fighting through sleep deprivation because you know your child is experiencing so much more fatigue than you are and learning the ropes in tending to your little fighter.

Until two days ago, our ICU nurses have done everything from feeding and medications to diapering and all night monitoring.  When I first got here I was overwhelmed with anxiety because my new role was unclear.  It didn't take long to get comfortable with all the wires, knowing what her stats should be... and most of all, acclimating to just how fragile and weak her little body truly is.  I don't know if the mom in me will ever get used to the fact that it is completely normal for my baby's lips to turn blue when she cries or that trying to bottle feed her when she is wide awake for just 5 minutes wears her out into a deep slumber.  The little things that are everyday events for other babies are huge accomplishments and strides for Zoe.  This is a reality for us, our family and Zoe that is much more than an adjustment.  It's a completely different way of thinking, reacting and parenting.  

With classes, homework and Andrew's TA job at school, he is still here as much as he can be... offering support, a reprieve so I can rest and most of all, that familiar face that I love.  I know that my hot mess of emotions and hormones after having a heart baby are probably not the easiest to be married to, but handles it all in stride.  Like most men, my husband is not one to show much emotion.  He is a Marine and has been through a lot.   But when it comes to his daughters, he is strong and loving all at the same time.  These girls of ours have him wrapped around their freshly manicured little fingers.  The poor man doesn't have a chance.

After only 2 1/2 hours of sleep yesterday... I was a weeping mess and all I wanted was my Lulu.  I think what set it all off was when our case manager Paula mentioned possibly being discharged in 5-7 days.  Just the day prior, Dr. King was thinking this weekend or early next week... and even today, our other case manager Tami, estimated between Saturday and Monday.  We have so many different people on our medical team and all of them have different gauges, preferences and estimations of what will happen next.  I SO appreciate all of their expertise, but it is so hard to be given the hope that you could be going home in just 2 days from one individual and then hear the extreme of maybe 7 days from another.  If you know me... you know I don't do "go with the flow" very easily and I am quickly learning that the world heart babies is all about GO WITH THE FLOW, ZOE TIME and NO EXPECTATIONS.  God is really taking this opportunity to teach me how to step out of MY box and get out of my comfort zone... because at this point, it's all Him and trusting in His plan.  Don't get me wrong, I don't want to bring Zoe home until they are confident and sure that she is stable and ready, but all of the back and forth is hard on an emotional mama!

In mid-meltdown, I called my dad at work in tears to request a Priesthood blessing and he said he would come over during his lunch break to give me one.  Shortly after that, my mom and sis arrived with Lulu and a Diet Coke.  In the afternoon, I played Hospital BINGO for Zoe and totally won twice!  I got a Barbie and Barbie activity book for Londyn from Zoe.  The day was looking up.

Last night Zoe had an amazing nurse, Laura who was so sweet and did all of her meds, feedings, vitals and breathing treatments at the same time - every 3-4 hours, so that people weren't coming in and out of our room every hour.  It made for nice longer breaks in between getting her all worked up and allowed us to get some quiet time and occasional rest.

Today has been a great day!  Earlier this week, we were told that the goals for discharge are oxygen support, excess fluid and feeding.  Zoe has been working hard to get home soon because she is checking off all of her goals like nobody's business!  She successfully weaned off of her high flow oxygen canula and has just 20 cc's of low flow oxygen left to wean off of before she no longer needs oxygen support at all!  Her plural catheters that have been draining fluid from her lungs will be pulled by Jason, Zoe's PA - tomorrow morning!  WAHOO!  As for feeding, she is fighting so hard to breathe and work with half a heart, that breastfeeding and bottle feeding are asking a lot of her.  We have been working with a speech therapist here to learn techniques that I can do to help Zoe learn to "achieve positive oral experiences" (yes, that is the verbiage that she really used).  Randomly she will take anywhere from 2 mils to 10 mils before we put the rest of her feeding in a syringe and through her NG tube.  It's exciting that she even takes that much without fuss!  We've decided to not push the oral feeding and continue with the NG when we go home.  All I have to do is use a stethoscope and syringe to make sure that the tube is correctly placed in her stomach and then run a large syringe of breast milk through the tube.  Our case manager Tami came in today and said that if she continues to remain stable and we are comfortable, we will probably be able to take her home some time this weekend or Monday.  Can you believe it?

And last but not least, one of the other highlights of the day was when Auntie Sarah took the day off of work, just to help out and bring Lulu up to the hospital for a few hours.  My Grandma has been very sick in the hospital for the past two weeks and my family has been jumping from one ICU to the next.  I am so grateful for Sarah because Londyn's daily visits are a huge part of what gets me through the day.  She arrived with her Hello Kitty Suitcase, sequined purse, hat and Barbie sunglasses.  One look at her, and you know it's going to be a good day.  While Sarah sat with Miss Zoe, Lulu and I went to the playroom on the Peds floor and even enjoyed a music class that was put on by some volunteers.  We then went down to the Heartbeat Cafe (my first time off the floor in two days) for sushi and ice cream.  After that, we took a walk in the Children's Garden.  FRESH AIR!  I got lots of hugs, kisses and love you's from my little diva.

Today was a good day.


Post Surgery: Day 11

Tuesday morning was MOVING DAY!  

We finally left the Intensive Care Unit and entered the wonderful world of the 4th floor. 

I couldn't believe it... this was a huge step towards going home.  I called Zoe's nurse Denise to find out when and what room she would be moving to and by 10:30am, there was still no word.  By 11am, I called again (I know... I'm the annoying mom that calls over and over again) and YAY- room 244 is our temporary home!

I cannot even begin to express the amount of gratitude I have for all of the nurses that took such great care of our Zoe when we could not.  They played such a huge part in giving her the most comfortable and stable start that she could get, considering the circumstances.  It is rare to be able to trust another individual with this new little life that has been growing inside of you for 9 months... but somehow, the nurses at Emmanuel accomplished that very difficult task.

{Last few minutes in the PICU}

{Movin' on down... to the Peds floor!}

{Our NEW Room on the Peds floor}

{All bundled in her first crib}

{Mom's first diaper change with Zoe at 11 days old}

*Auntie Nell & Uncle Todd brought BIG sister Lulu to visit*
{Uncle Todd is the Infant Whisperer}

{Lulu munching on my dinner and LOVING the wall length dry erase board}

{SO excited to hold her little sister for the very first time!}

{This moment... priceless.}

{I just love my babies}

Post Surgery: Day 9 & 10

Sunday and Monday were gorgeous days here in Oregon.  High 70's - 80 degree weather!  Andrew and I dropped Lulu off at church to go to her Nursery class with Gma Milne and then we headed to the hospital.  It was such a perfect day with Zoe.  We spent 5 hours holding and cuddling our sweet 11 day old baby girl.  She was alert, chatty and even took 10 mils of breast milk for me out of a bottle.  It was hard for me to leave her after such a great day, but we missed our Lulu and wanted to get home to her so we could soak up what was left of the sunshine.

After picking up Londyn from Gma & Gpa Milne's, we went home and took her to the park near our house.  She is constantly begging to go to the park, but I am always telling her "It's raining and the park is yucky... we can go to the park when it is dry and sunny!"  After riding her pink trike to the park, we got to play with the cutest toddler on this earth!  She is so full of life and love... how can you not be happy when she is around?  

It was so surreal to play with her at the park, like we have done so many times before.  This time we have a tiny newborn with a broken heart in the hospital... fighting to work with what she's got.  Here we were, pushing Lulu on the swing... tickling, laughing... going down the slide together and helping her along the monkey bars.  In the back of my head, I couldn't help but feel guilty for enjoying such a family moment when our little heart baby was not with us.  That same feeling is a constant battle that I face every moment of every day, because when I am with Zoe... I miss Lulu and when I'm with Londyn, I'm terrified and worried sick about Zoe.  

I am going to remember these feelings when we are finally home together as a family again and I haven't had more than a few hours of sleep, my house looks like it's been ransacked and robbed... there's nothing but mac n' cheese or cereal to eat and splashing water on my face is the closest to a shower that I've had in who know's how long.  I will force myself to vividly remember that it could be so much more difficult and that not that long ago, we were divided between home, hospital, in and out of 4 different hospital rooms on various floors and back and forth, between kids.  


Post Surgery: Day 7 & 8

The last few days have been a rollercoaster.  I couldn't talk about Zoe without bursting into tears at any given moment... hence the brief blogging hiatus. 

Day 7 after surgery was a BIG day!  Zoe was extubated and breathing all on her own, for the first time after surgery.  She still needed support with low flow oxygen and also CPAP breathing treatments through a mask every 4 hours.  Zoe was much more alert from all the excitement!  

"Just a week ago today was the most unknown and prayerful day of my life. Finally getting the news after 8 hours of waiting, we learned that Zoe's open heart surgery was a success. She has come so far in just 7 days. I love my little miracle heart baby!" - Facebook Status 4/20/12 

Day 8
We took Lulu to the hospital with us for about 1.5 hours.  The first half of her visit, she did her Color Wonder finger painting, watched Finding Nemo and ate snacks.  Just as we acknowledged how good she was being, a meltdown started to brew because she wanted her "pappy" (pacifier) and since we only give it to her for nap or bedtime... she knew what the end result would be.  That decision was not received well... as you can imagine.  Luckily, Gma & Gpa Milne came up to see baby Zoe and to take Londyn back home with them.  

Andrew vigilantly worked on Physics homework... although, we had a super friendly but chatty nurse, so not much got done.

Miss Zoe had a sleeping day and a rough oxygen day.  She had about 4 lines/tubes taken out and was left extremely worn out.  Her oxygen saturation levels were unstable and unpredictable.  
On the bright side, she loved the CPAP breathing treatments, which the nurse said most babies do not like at all.

Eskimo Kisses

I was able to hold Zoe for a few minutes, but couldn't continue because her Oxygen saturations were just too low.  She was so fragile and unstable that I could barely enjoy those few moments together, because I was so worried.  Eventually, her Oxygen went down to 52 and it should be in the 60's-70's.  Mandy (our nurse) decided that we needed to put her back in the bed and figure out what was going on.  It took a good few hours for her to recover from moving out of her bed and into my arms for the first time in 8 days.  I went home in tears, fearing that I could never hold her again without worrying about whether she was going to just stop breathing at any moment in time.


Post Surgery: Day 6

Dr. John took out Zoe's catheter today.  She is no longer on the peritoneal dialysis and is filling diapers almost every hour.  Yay for diaper changing now!  

Zoe is still very sleepy, so she has been taken off the fentanyl drip, but still getting morphine and tylenol for the pain.  Hopefully not having the constant fentanyl will help her to wake up some more.  

They started weening Zoe off of the ventilator today and so she is practicing breathing on her own and when she gets tired, the ventilator kicks in.  The plan is to take her completely off of it early tomorrow morning.  I can't wait to see her whole beautiful face again without that big tube and white tape!  

We are getting closer and closer to moving down to the Pediatric Ward and then eventually bringing our sweet baby home!  

One of the greatest resources we have as a family with a heart baby is our case managers.  Their names are Tami and Paula.  The first time we met Paula was when she took us on a tour of of the Children's Hospital several weeks ago.  We didn't meet Tami until right before Zoe's surgery, but soon found out that she is LDS and we have a lot in common!  She has four kids of her own and has been a foster mom of two children and helped make their adoptions possible.  Both Paula and Tami check in regularly just to see how we're doing and fill us in with information we need to know.  They are a great support.  Today, Tami told me that they think Zoe will be in the Pediatric Ward this weekend and going home around the end of next week.  HOLY JUMPIN' UP & DOWN... that is so soon!  Andrew and I anticipated 4-6 weeks after birth, so the idea of Zoe being all ours next week is just bananas!  But, I'll take it!

As I was reading the Randall Children's Hospital fan page on Facebook yesterday, I came across a support group called Mended Little Hearts of Portland.  They also have other chapters all over the country.  This organization holds monthly group meetings at Randall Children's Hospital, parties, picnics and continuous support for families impacted by congenital heart defects.  I haven't really been ready to reach out to other parents of heart babies yet, but decided to share a little bit about Zoe's story with this particular Facebook group.  

And this is how it went...

I am so grateful to have found this group through the Randall Children's Hospital fan page. I just gave birth to my beautiful daughter Zoe Grace, 1 week ago today. At my 20 week ultrasound, we were given the devastating news that Zoe has Hypoplastic Left Heart Syndrome with an Atrial Septal Defect. She had her first open heart surgery last Friday and is currently recovering in the PICU at Randall Children's.
I hope to attend your support group in the future. In the meantime, do any of you survivors or parents of s heart baby have any advice?

Thank you!
 ·  · Yesterday at 12:25pm near Sherwood

    • Mended Little Hearts of Greater Portland We are so glad that you found us! My name is Pam and I am one of the coordinators for the group and I know I speak for many of us heart parents when I say that some of the best advice is to know that you are not alone and reaching out to other families when you are ready (which you just did!) can be so helpful.
      I would love to drop off a care bag tomorrow to the hospital for you if that would be ok. We have bags for families that have a child that is in the hospital for open heart surgery.

    • Mended Little Hearts of Greater Portland Hi Kacie, My name is Jim Ferretti. My daughter Lilli has HLHS as well. She is 3 1/2 years old and scheduled for her 3rd surgery next summer. I am happy to talk to you or your family at any time about our experience and what you may expect. Remember all children are different and what we dealt with may not be what you will go through but we are all in this together. You are now part of a family that not a single one of us want to be part of but we are all thankful we have each other to lean on.

    • Mended Little Hearts of Greater Portland Hi Kacie, Jim and I (Pam) left a care bag at the nurses station for you this morning :) Hope all is well with your little ones recovery
      5 hours ago · 

    • Kacie Armitage Wow, thank you so much Jim and Pam for the generous care bag. What a blessing! I am already a fan of MLH! I am at the hospital now and our little Zoe is a miracle. All of these heart babies are. If you care to know more about our journey, I update my blog regularly. www.ArmitageHome.blogspot.com

      Thank you again!

How amazing are they?  In less than 24 hours, this very generous bag of goodies was delivered to Zoe's room by LMH coordinators, Jim and Pam (I couldn't help but think of The Office when I read their names)!  I couldn't believe how quickly they were there to support our family.  I can't wait to get more involved with this fabulous group!

The Zoe Show

Nap Time

Wakey Wakey, Eggs & Bac-ey!

For a little while, Zoe was having a tough time breathing and the nurse could hear some congestion through the stethoscope.  They cleared out her breathing tube several times and finally got a huge glob of gunk that was stuck in her airway.  After that, her breathing improves instantly!

Have I mentioned how much I adore the nurses, doctors and staff at Randall?
They will forever be our angels.


Post Surgery: Day 5

It is hard to believe it has been an entire week since Zoe was born.  The last 7 days are all a blur... meshing together into one really long day.  So much has happened in such a short time and yet it feels like we are moving in slow motion.

This morning was pretty routine.  I woke up early with the toddler, took my pain meds, pumped and called Zoe's nurse.  I do the same routine before going to bed at night too!  Zoe's day nurse for the past two days has been Linda.  We usually get the same nurse for 2 days and then it switches.  We have had so many wonderful nurses and it's always a bummer when they switch because I connect with one and then move on to another.  When I called, Linda told me that the night nurse said Zoe's belly twitched a couple times and that she had a really good night.  She said today is a pretty low key day of waking up.  They plan to reduce her pain meds to the lowest dosage, which will help her to eventually wake up.  

Today I decided to stay home and have a lazy day with Lulu.  Aside from Londyn waking up at 1am screaming "Mommy, Daddy... Mommy, Daddy!!!" pounding on the door and then waking up at 6am... it has been a good day.  We have been watching way more TV that we should, playing blocks, drawing on her Aquadoodle and snuggling.  It's been really good for Londyn to have a normal day with Mom at home.  Even though she is struggling a lot, throwing fits and getting emotional about the strangest things (just imagine a toddler PMSing), she isn't being naughty or intentionally difficult.  She is just responding to all that is going on.  Quite frankly, I think she is doing a pretty darn good job!

We also got a surprise visit from my friend Steph.  She brought a couple balloons for Lulu, homemade muffins and a DC for me!  She had kiddos in the car and even thought she fought me on it, she let them come in and play with Lulu for a while.  Londyn had a blast and was laughing so hard!  I have already planned an arranged marriage with Steph's 3 year old Zack, so it's only fitting that they spend lots of time together.

After our visit with friends, it was nap time.  After getting a few things done sans toddler, I got a good solid hour of deep sleep.  Londyn took about a 3 hour nap and needed every minute of it.

Andrew has Wednesdays off, but is a teachers' assistant for one of his teachers and needs to put in 8 hours per week, so he went in today for a few hours and then came home to do homework.  I don't know how he is juggling everything going on, full time school and still manages to be a supportive husband and dad.  Londyn is so attached to her dad and has brought her a lot of comfort through her many meltdowns.

I called in for another update this afternoon and Linda said that when she does anything hands on, Zoe wiggles her toes.  This was BIG news!  But not as big as the surprise we got when we went to the hospital this evening.  We arrived at about 6ish and right when we got there, Linda said that she had a surprise for us.  We walked into Zoe's room and saw her looking back at us with two very sleepy but oh so precious brown eyes.  Linda said she had just opened them right before we got there.  Andrew and I just stood by her bedside, gushing over her.  It was one of those moments that we will cherish forever.

Our nurse was able to capture the moment that we first saw her beautiful eyes

Peek-a-boo, Zoe see's YOU!

Before surgery, Andrew discovered that Zoe did not like having her feet touched... so of course, we did it today to get her to open her eyes.  Hey... you do whatcha gotta do!

Daddy loves her newest daughter

Trying so hard to keep those sleepy eyes open

All About the Ta-Ta's

When I had Londyn, I was terrified of breastfeeding.  I wanted so badly to try nursing but was overwhelmed with the recovery of a difficult labor, having a newborn and not knowing what the heck I was doing, sleep deprivation and baby blues.  Throw Mastitis into the mix and say goodbye to breastfeeding... HELLO Similac!  Since I can't do much physically for Zoe right now, I am determined to pump milk and hopefully nurse her once her NG tube is taken out.  Pumping is a full time, round the clock job.  I am pumping every three hours, making sure I am eating and getting lots of fluids so  my body to produce nutrition for my baby.  So far, this time around has gone wonderfully!  Since I have the time to focus on it and stick to a schedule, I am right on track.  Although, it will be a whole different dance when Zoe can actually nurse. 

 Londyn cracked me up today when I was getting ready to pump and she said "you take your boobies off AGAIN?!"  I love that kid.

All of my hard work is paying off because Zoe started getting my milk through her NG tube today!
She is getting about 1 ounce every hour and I am ecstatic about it!


Londyn Lately

Londyn has been such a trooper through this crazy time.  My mom said that she was wonderful for them while we were in the hospital.  Since we got home, she has had a really hard time.  I think she has reached her maximum limit of going with the flow.  Lulu is a routine, schedule and structure kind of girl... which is the exact opposite of how things are right now.  Luckily, the people she is with every day are people she knows and loves.  I so appreciate my family for being able and willing to take Londyn pretty much anytime, but it is hard when I am around and she would rather be with her cousins than me.  With one baby in the hospital, I look for comfort from my first born.  Since I am still taking it easy at home, we are getting lots of snuggle time on the couch and watching TV.  She loves the TV and I love the snuggles.  It's a win/win.

Lulu also loves talking about her sister.  We gave her a bath the other day and she said, "Zoe not my sister, she my friend sister."  Today I showed her pictures of Zoe and she said, "Oh she's so cute, mom!  She's so cute!"  Even with all of the tubes and her scar, Londyn only saw her cute baby sister.  She makes my day!

Post Surgery: Day 4

At 10:30am this morning, Dr. John and his surgical staff were able to successfully close Zoe's chest.  This is a big step to getting Zoe home, so of course when I first saw her I was overwhelmed with emotion.  I am feeling joy and relief for her healing and progress... but also a deep sadness for her suffering.  

After spending some time by her side, I took a walk to think and pull myself together.  I went to the bathroom in the family lounge and just sat there sobbing.  I need some time to grieve.  Clearly, Zoe is one of God's many miracles.  She has a fight in her that is inspiring!  But seeing your tiny baby in such a fragile state is something I never imagined experiencing.  It is beyond painful.  The tubes, wires, blood and even her open chest really didn't bother me.  It is seeing her sewn up that breaks my heart.  Don't get me wrong, I am overjoyed that she is moving forward in the recovery process but it is really tough to see my perfect newborn with such a large scar that she will carry with her, her whole life.  I feel guilty that it even bothers me, because in the big scheme of things- it is just a scar and she is a survivor.  I just know that as a girl and a woman, that scar won't always be easy for her to see.  That scar will be a constant reminder that life isn't going to be easy for her and I can't do much about it be love her and do my best to get her through it.  I hope I can help her to embrace her battle wound and heart condition.  I hope I can help her to know that she is a very special daughter of God and that she is beautiful and nothing less than perfect to Him, myself and Andrew.  

Tomorrow will be a day of slowly waking her up by reducing pain medication and eliminating the paralytic.  She will also have the large chest tube on her right side taken out.

I also had a good cry session at her bedside, while holding her hand.  I have spent the last 5 days holding her right hand (because the left is where one of her IV's is placed), gently rubbing her soft head and tiny feet.  Although I am extremely grateful to even be able to touch her, I want so badly to hold her, hear those coos and whimpers that I so quickly fell in love with in the 48 hours we shared together and finally, to see her eyes looking back at me.  She was so swollen before her surgery that she couldn't open her eyes, so I still haven't seen them yet.  We have so much to learn about each other and I am getting impatient.  I am so blessed to have her here each day and need to focus on that instead of getting down on what I don't have.  

Dr. King (cardiologist) thinks that she will be extubated in the next few days.  Once that breathing tube and several other tiny lines are out, we will finally be able to hold her.  I am crossing my fingers that she will be in my arms by the end of this week!  After the breathing tube is taken out, they will continue to slowly remove more and more tubes and IV's.  

Towards the end of my 5 hour visit for the day, Dr. King came in to do an ultrasound.  He said that her heart was looking great and nothing was of concern to him.  He did say that her Common Valve is leaking a little bit, but that is fairly normal after surgery.  The Common Valve is the Atrial Septal Defect that was found a couple months after the Hypoplastic Left Heart Syndrome was discovered.  Prior to surgery, Dr. King and Dr. John let us know that if when in surgery, they saw the Common Valve leaking a great deal- there would be no form of repair, which would be fatal.  Of course, we were terrified for this possibility, but they assured us after surgery that it was not an issue.  Phew!

Along with family, friends have been a support system that we could not survive without.  Not only did we get lots of visitors, flowers, phone calls and Facebook messages of love and support, we have had so many acts of  kindness come our way.  
Just a few recent examples... our friends the Salisbury's came up to the hospital on Saturday night and snagged Andrew to go pick up dinner and bring it back for a little in-patient date night.  It was so nice of them to buy us dinner and best of all, make us laugh all night. 
My dear friend Erin brought me california rolls, diet coke and celebrity gossip magazines.  She also brought Andrew energy drinks, which he couldn't have survived without!
When I got home from the hospital tonight, I found this cute arrangement of daffodils and case of DC on my doorstep from my friend Christy.  Today is Christy's birthday, and because she is just that fabulous... she brought me a gift on her special day!  Now that's a saint!

I also checked my e-mail today and was surprised to find a video from one of my favorite people, Andre Rouge.  Andre and I have been besties since the day we met in a BYU student ward about 5 years ago.  We have been through a lot together and even from Guatemala, he is still here for me.  Love you Andre!