Recovery

Sweet Dreams Olivia -

It's been 36 hours since your went in for your heart surgery.  I FaceTime'd with Mom & Dad tonight & they filled me in on your progress.  I am so glad that you are safe & sound in your bed.  Keep resting so you continue to get stronger with every day!

Here's what happened during your surgery:  Anesthesia took you back to the OR at noon.  Mom & Dad spent time cuddling with you beforehand.  I'm sure you realized that it was a very tough morning for our parents.  They tried so hard to keep a brave face on for you & remain strong.  Mommy sang to you & Daddy read to you.

Mama singing Bob Marley's "Three Little Birds" - this is your favorite song (as of right now) & it instantly calmed you each time Mom sang it to you

They were allowed to walk with you all the way to the OR doors & then met with Dr. Spray to discuss the surgical plan.  The walk from your pod to the OR doors was more than Mommy could handle & she clenched Daddy's hand as she fought back tears.  Your anesthesiologist did her best to reassure Mom that you were going to do great.

Dr. Spray was really confident that it would be a straightforward procedure.  You were in the best hands - all the nurses said Dr. Spray was a magician in the operating room.  Mommy raved about your nurse yesterday & today - Michael kept Mama in the loop during your surgery.  You were out of the OR by 2PM, but Michael and his team needed to get you settled, comfortable & finished with post operative testing before Mommy & Daddy could see you.  

Dr. Spray came to see Mom & Dad while you were getting settled.  He was very pleased with the surgical outcome!  He did a thoracotomy, which means he gained access to your heart through your left side.  He cut out the coarctation from your aorta & attached the ends together.  He also re-implanted your subclavian artery.  He seems to think your left ventricle will be cooperative & start working efficiently enough to function.  They will only be able to tell this with time.  

At 4PM, Michael let Mom & Dad come back to see you.  It took longer than planned to get you settled, but you were stable, resting & seemed peaceful.

Mama & Dada could only sit with you for an hour, but then were asked to leave the pod for an hour or so because your neighbor was coming back from his heart surgery.  They left the hospital for a quick bite to eat & toast a successful surgery.  They didn't want to leave your side, but your breathing tube was out, you were sedated on pain meds & resting.  Your cry was breaking Mommy's heart!  You came out of surgery with a very low, quiet, raspy voice.  It could just be that your throat was scratched by the breathing tubes or it's possible that your vocal cords were bruised or nicked during surgery.  Hopefully your very loud & proud voice will return soon, but until then your voice makes Mommy's heart ache.  

Mom & Dad stayed at the hospital until after night rounds & once they were sure that you would do well overnight.  Your team reassured them that you were recovery well.  However, they had to increase your air support (CPAP) two times since your surgery.  This was going to help your respiratory rate.  Your X-Ray showed fluid in your lungs (almost as much as when you were first born) & this was causing your chest to have pretty severe retractions.  The team was going to monitor you overnight & create a game plan in the morning.  The nurse would call if anything changed overnight, but thankfully you just slept peacefully.  

In the morning, the attending physician decided to start you on Lasik to help clear the fluid from your lungs.  She explained that this was a big concern for them because they're unsure why you have so much fluid in your lungs.  Most people who go on bypass have fluid afterwards but you weren't on bypass.  You didn't meet any of the criteria to have fluid on the lungs & the only other hypothesis they could come up with was that your left ventricle was not preforming like they had anticipated.  They will recheck your X-Ray at 4AM & hopefully it will be much more clear.  If it's not, they will likely send you to the cath lab to look at your heart more closely.  I'm praying sweet baby sister that Lasik works tonight & that your left ventricle is adequate enough. 

Your lab work also showed that you have moderate bilirubin, which is why your turning yellow.  I had very low bilirubin too.  It should clear up by eating & pooping it out.  Unfortunately, you aren't able to eat until your CPAP is removed.  You're only getting electrolytes through your tubes.  Right now you don't need to go under the lights, but they'll recheck your levels at 4AM.  Hopefully they will be able to wean you off the CPAP at some point tomorrow & get you eating again.  As of right now, they won't put an NG tube in for for feedings because you were feeding like a champ before surgery.  The docs are giving you benefit of the doubt, so keep working on your sucking reflex with your paci.  

All day it was basically waiting to see your progress.  You pretty much stayed no change all day, so we won't really know anything else until the morning rounds.  Mommy & Daddy held you as much as they could today.  Mom sang & read to you.  You did not like Dr. Seuss, so tomorrow Mommy is bringing in the Winnie the Pooh novel. You were very happy to just sleep in their arms.  While you sleep in your crib, you'll be able to smell Mama's scent.  She slept with your ducky blanket to make sure you can be comforted by the scent while they are away from your bed.

Aunt Emily stopped to see you right before dinner time today.  She took a detour on her way to her high school reunion at St. Andrews.  So glad you were able to meet her.  She lives up in Rochester, NY, so it may be some time before you meet again.  

At rounds this evening, the team decided to start weaning your CPAP & to increase your Lasik. Hopefully by morning you will be off CPAP and on a high flow air support. They're also considering putting you on an additional medicine similar to Lasik that will hopefully work in conjunction with Lasik to clear your lungs & help you breathe more easily.  Continue to rest Via!  

I have been thinking of you, practicing your name & sending you lots of love all day yesterday and today.  I've also been having a blast with Grammy & Pop.  Grammy took me to the toy store yesterday & we got bubbles, a new football & a new book.  We had such a blast in the afternoon blowing bubbles outside.

Today Pop was off from work, so we all went to the playground & spray park.  It was so much fun & I brought some new toys along to play.  For dinner, we went to Columns on the beach in Avon.  I enjoyed listening to the live music & snacking away on yummy summertime favorites.

It's time for us both to get some shut eye, Liv!  I will check in with you tomorrow morning.  Mom said we could FaceTime from your bedside, so I can blow you kisses & tell you that I love you.  In the afternoon, Grammy & Pop are taking me to Pt. Pleasant & we're going on rides!!!

Sleep well baby sister!

All my love,

Win

Today is your day! Your mountain is waiting - Dr. Seuss

Good morning Via (this is how I can pronounce your name so far, but I'm working on it),

I wanted to share a quote with you from a Dr. Seuss book "Oh, The Places You'll Go!" I thought this was a very appropriate quote for you to start your day of surgery.  Mommy & Daddy got to CHOP early this morning to cuddle with you as much as possible.  I FaceTimed with them late morning & they let me know that you were happily sleeping & ready for your surgery.

Yesterday was a pretty uneventful day in terms of your health.  I came up to the hospital with Uncle Jon early in the morning, so we could meet properly.  We exchanged gifts. Thank you for my digital camera, big brother photo album, personalized big brother book & big brother medal! I hope you enjoy your gift from me - a heart patient teddy & book featuring Olivia!  There are lots of machines & wires all around you.  It was a little scary for me, but I was so glad to see you sleeping happily.

Grandpa Howard & Grandma Mimi came to visit while I was there.  Everyone wanted to see you before your surgery today.  After visiting, we went down to Mom's hospital room & she was discharged to go home.  I got to spend a couple hours with Mom & Dad at home before Grammy picked me up for my weekend in New Jersey.  I've been having a great time in New Jersey so far Olivia.  We went out for dinner last night & I had a blast dancing to the guitarist.  I even met 2 older girls and we all danced together.  I'm quite the lady killer little sister & definitely flirted a bit with the older ladies.

Mommy & Daddy told me they spent the rest of the day with you at the hospital.  You did well all day & your surgery was set for noon today.  Mom is thrilled that you've been able to eat & nurse so much.  It will really help you stay healthy after surgery.  The doctors say that you will need to remember how to use your mouth after surgery, so I hope you were taking notes on how to nurse, suck your paci & take a bottle.  Mommy & Daddy even got out of the hospital for an early dinner nearby.  Mama had her first glass of wine to help settle her nerves for surgery.  They had a lovely dinner outside in the gorgeous weather.

I am with Grammy right now while you're back in surgery.  We are saying prayers & thinking positive thoughts little sister.  You are so incredibly strong & I know you're going to rock this surgery.  Mom & Dad are at the hospital waiting patiently.  They met with your surgeon, Dr. Spray (he's one of the best in the entire world Liv).  He is confident that your surgery will be pretty straight forward.  Your nurse, Michael, has been taking care of you all morning & is now taking care of Mom and Dad while they wait.

You'll be out soon & we'll see how your heart works on it's own.  I am so incredibly proud to be your big brother.  We are all routing for you Livi & confident that this will be a very small stamp on your long life timeline.  I love you so much & cannot wait until your home with us.

I'll write to you again once I have an update from Mom.  Keep fighting sweet baby sister!!!

So much love coming your way,
Winston
XOXO

Happy Birthday Sweetheart

My Dear Sweet Olivia -

Happy Birthday my darling!! I have hijacked your big brother's blog to announce your birth to the world.  In the week since Winston's last post, I have been working really hard to get you moving into labor, so that we didn't need to be induced on June 3rd.  Despite my best efforts with rounds of acupuncture, chiropractic adjustments, acupressure & every labor inducing homeopathic concoction I could find, you just wanted to work on your own timeline.  While waiting for you to decide you were ready to take your first breath, Win, Daddy & I made it a top priority to enjoy the gorgeous weather and savor the last few days as a family of three.  Winston is so excited to be a big brother, but I know it's going to be tough on him at first.  I know he really appreciated those few extra days with lots of hugs, kisses & as much fun as we could possibly squeeze out.  

Our big last outing as a family of three was on Saturday.  We decided to head to Princeton University for the annual Reunions Weekend P-Rade.  It wasn't a big reunion year for Daddy (wait till next year Liv - it will be his 15th & you're going to have a blast!!), so we just headed out in the morning to catch the P-Rade.  Princeton is about 45 minutes from CHOP, so our plan was if labor started we would immediately head to the hospital.  Uncle Jon would have met us there to take Winston home, since we knew there wouldn't be time to stop.  However, you decided to stay warm & cozy inside Mama's womb, while you enjoyed the sounds of the P-Rade.  I was certain all the walking, standing at the P-Rade & being out in the heat would bring on labor.  Clearly you had other plans.  Oh Liv, I cannot wait for you to enjoy Reunions next year! Check out how much fun Win had this year.  He's definitely got some Tiger Inn blood in him - he cheered from the sidelines, high-fived the younger reunion classes as we marched in the parade & even danced on a table at TI (Dad's eating club).  

On Sunday, June 1st I began to get nervous that you were going to continue to take your time & we would need to come in for an induction on June 3rd.  I really did not want to be induced with Pitocin.  I desperately wanted to save you from one more additional med that you would get running through your body.  We had a lovely day - enjoyed a nice breakfast as a family & took a nice long stroll in the Morris Arboretum before dinner.  Dad & I chatted after your brother went to bed - he was going to work from home on Monday, while you & I gave it one last go with acupuncture, chiropractic adjustments, a pedicure (the foot massage was supposed to help) & a prenatal massage to help induce labor.  Apparently, all it took was this discussion of starting a disgusting milkshake with castor oil late on Monday to get your tush in gear.  Thank you darling - I was not looking forward to the effects of castor oil!!

Dad & I were watching a TV show called Turn,  a series about spies during the American Revolution, when I felt a contraction.  I had been having contractions on & off for three days prior, but each time I began tracking you decided to say "just kidding Mama...still not ready!"  I tracked the first contraction at 10:15PM just to see what would happen.  The time between the first 2 contractions was nine minutes.  The next one jumped down to 8 minutes apart & then 7 minutes.  It was at that point I told Dad we needed to get ready for the hospital & have Uncle Jon head over to watch your brother.  He lives 25 minutes away, so we figured we had enough time.  I planned to take a nice warm shower while we waited & get in the last baby bump shot.  You my dear had other plans in mind!  You were ready & decide it would be fast & furious!!  After Dad talked to Uncle Jon, the contractions got closer & closer - 6 minutes, 5 minutes & then they were very intense. I told Dad we needed to get to the hospital ASAP!! We called our neighbor, Doug, to see if he could come over to be with Win because Uncle Jon was still 15 minutes away.  No answer! The midwife called to check in on us & told us to wake Win up and get to the hospital.

Dad quickly got Win into the car & off we went to the hospital like we were on  Mr. Toad's Wild Adventure.  Winston thought the ride there was so much fun - he happily chatted in the back seat of the car, while you continued to let me know you were just about ready to arrive.  I insisted that Daddy drive fast with the flashers on (I wanted people to know something was going on & to kindly move out of the way so we could get you to the hospital).  Once we got to the South St. exit, I yelled to Dad that he needed to go through red lights & insisted he slow down, honk & GO!  I really thought we were going to have you on the side of the road, so I was literally squeezing you in with every contraction.  We arrived safely to the hospital, were escorted up to the Special Delivery Unit & the team lead me to our birth room.  Daddy had Winston & had to leave us to labor by ourselves, while he went to find Uncle Jon (we had him re-route to the hospital), bring up the bags & park the car.  

I was not thrilled to be all alone during intake & contractions - especially since I literally felt like pushing you out with every contraction.  I continued to stay tense & squeeze you in until I felt all consents were signed & I had someone there with me (aside from the wonderful SDU team).  Thankfully, our doula, Jenna arrived just before midnight.  She helped calm me down & get me into a mindset to push you out.  When the midwife first checked I was 8cm dilated, but within 15 minutes was at 10cm and ready to push.  Daddy got back to the room just before midnight & I told him June 2nd would be your birthday!  Shortly after that statement I felt like I was ready to start pushing, so we could finally meet you.  

Desperately trying to stay centered during contractions - very difficult after the intense journey to the hospital!

Our wonderful birth photographer, Kristy, arrived just in time for the first push.  Unfortunately, at that moment the OB said you were in distress.  Your heart rate was dropping & I had to change positions  and receive oxygen.  Getting the oxygen mask thrown on my face was definitely not how I envisioned birthing you & to be quite honest was making me tense up.  When you stabilized a bit, they removed the oxygen & we got to work my love.  Three pushes & you were out!  

A beautiful shade of pink (I must be honest I thought as a heart baby you would come out blue) & a lovely set of lungs.  12:26AM on June 2nd - looks like you didn't want Mommy to be induced after all.  After you arrived and very unexpectedly, you were immediately placed on my chest.  The midwife, OB & the stabilization team waiting for you in the next room all felt confident that you were doing well enough to be held before getting stabilized.  This was beyond thrilling, since I've had been preparing for weeks to cope with the fact that you would instantly be whisked away & brought back after all your medical lines were put in.  We basked in the ten minutes that we were able to hold you - skin to skin.  

 So full of wonderful emotions & love

Daddy cutting your umbilical cord

A little Mama, Dada & Livi bonding time

You were finally whisked away to the stabilization room, where they check all your vitals, put in your umbilical lines & started you on Prostoglandins to keep you prenatal heart duct open (this is what is allowing you to remain stable and give your heart time).  You weighed in at 8 pounds, 0.5 ounces & 19.8 inches.  When you came back to see us briefly before heading over to the Cardiac Intensive Care Unit, you got to meet your big brother!  He waited so patiently in the family waiting room, while you & I worked hard in the birth room.  He happily read books & played with toys - despite the fact that it was the middle of the night.  Such a special treat for us all and I can't wait for you two to bond even more.

Winston went home, you headed to the CICU, I headed for a shower & we were all beginning to prepare for your first 48 hours.  After my shower, I began pumping milk for you, so that you would have plenty of milk once they said it was alright for you to eat.  You had your first ECHO and X-Ray at 4AM, after Mommy went to bed.  

We woke up early to make sure we made it rounds in the CICU.  I was feeling really great despite the fact that I had just given birth to you only a few hours prior.  At rounds, we found out that you had a significant amount of fluid in your lungs, which was causing you to have respiratory problems.  They put you on oxygen & then down graded you to room air through various nasal tubes.  We quickly found out that all surgical plans were put on hold while they monitored your lungs & hoped they would clear.  You were put on a medicine called Lasix to help flush your system.  Your ECHO showed your left ventricle to be small & they were unsure whether it would be sufficient enough to do it's job well.  The coarctation of your aortic arch still presented as a significant problem, but they said they would just need to monitor you over a few days and continue to get more data before coming up with a plan.  In the meantime, you were happy and slept for much of your first 24 hours.  

During rounds, I was able to use the NuRoo pocket and kangaroo hold you skin to skin.  We haven't been able to do it since, but I'll push for it tomorrow.  Dad & I were so surprised that we were able to hold you so soon.  Thank you sweet Olivia for being so strong & feisty!  Your strength is allowing us to bond much sooner than we all anticipated.  You are my little fighter!  

 Kangaroo carry in the NuRoo

 Look at how peaceful you are snuggling with Mommy

Dad didn't do skin-to-skin, but still cuddled with you every chance he got

You were such a trooper & underwent 3 X-Rays & 2 ECHOs in your first 36 hours of life (Mommy hasn't even had 1 X-Ray yet!).  The fluid in your lungs during the first 36 hours really began to clear up thanks to the Lasix.  You'll have another X-Ray in the morning, but they feel good that your respiratory system is improving. They've started downgrading the amount of air you're receiving and continuing to all you to oxygenate yourself. 

After morning rounds on June 3rd, the team decided that you could finally eat!  I think you were one very happy little girl!  We let you attempt nursing & you latched like a champ! You only could handle 2-3 minutes of nursing & then fell fast asleep in my arms.  The nurse explained that nursing is often difficult for babies with heart problems.  The simple task of eating is like running 5 miles, so your body needed a break.  We were able to nurse 4 more times!  You were ravenous & with each nursing session got more efficient getting milk.  The nurses were also able to supplement with Mommy Milk, while I was napping or off eating (gotta keep up the calories Liv so I can keep producing the goods for you!).  

Daddy & I even started decorating your space in the pod.  We used everything we brought for the birth room that unfortunately was never taken out of the bag because you arrived so quickly.  We even set up the Mayan idol that will protect you from negative energy.  Lots of wonderfully spiritual reminders to remain positive and strong during our journey.

In the afternoon you had your 2nd ECHO.  You slept through the entire thing so peacefully.  I was amazed.  Having gone through many ECHOs during the past few months I know they can sometimes push really hard to get a good image of your heart, but you were a champ!

Dr. Rychik, your pediatric cardiologist, consulted with me late in the afternoon about the ECHO results.  He told us that he's pretty sure that your left ventricle will rise to the occasion & do it's job given time, so when you go in for surgery they will leave it alone.  Hopefully after surgery we'll continue to watch it mature otherwise it may need to be trained into doing it's job.  This is very exciting news Liv - it means they're pretty sure that we're not dealing with Hypoplastic Left Heart Syndrome.  Your aortic arch definitely has a coarctation & will need repair.  I was shocked when he told me surgery would be in the next couple of days and even more shocked when he told me that they won't be going through the front.  They will go in through the side, so instead of having a giant scar down your chest you will have an angel wing on your back.  This is HUGE and will hopefully make recovery time much easier for you.  We went from thinking they were going to monitor you for the next few days to "alright we have a plan and we're ready to execute it."  Wow, things really can change on an hour to hour basis here.  

Grammy, Pop & Aunt Shana came by to meet you in the evening & got to stick around for evening rounds.  During rounds we found out that your heart surgery is tentatively scheduled for Thursday, but we should know more when I wake up Wednesday morning.  

I'm off to bed my sweet love. Tomorrow I will be discharged from the SDU, which means I no longer have a permanent bed in the hospital.  Daddy and I will be here every second that you need us, but we're going to try and sleep at home.  Get ready for some visitors in the morning!  Grandma Mimi, Grandpa Howard, Uncle Jon & your big brother Win will all be here to spend some time with you.  After noon, Dad & I have decided no more visitors until after your surgery.  We don't want to take the chance of any unnecessary germs headed your way.  It will also give you plenty of time to rest up for your big procedure.  

I can't wait for you to bond with Win tomorrow.  I think he has a special gift for you & he'll be so excited to receive the present you have for him.  Goodnight my love! I am so incredibly proud to be your Mama!  You are proving to us all just how strong and brave you are.  Tackling each hurdle with equal parts grace & spirit.  We are all so fortunate to be surrounded by your strength and to be in such an incredible hospital, with such caring and wonderful nurses and doctors!  

I love you with every fiber in my body, heart & soul Olivia!

Love,

Mommy

**Special note to all of Olivia's adoring fans:  Thank you so much for all the calls, text messages, Facebook messages!  We greatly appreciate everyone who is reaching out to offer support, send prayers and check-in.  It is almost too overwhelming to go through the day in the CICU and respond to all the messages.  If we are unable to respond to questions, messages, etc..., please know that we are checking messages, but are reserving our time and energy to support Olivia right now.  We'll continue to update the blog as often as possible.  If you'd like an update, you could try and contact the Olivia's grandmothers, Merrydth and Mimi.  Please keep the prayers & well wishes coming - it helps give us the strength we need to get through each hour.