1 Month Old Discharged - Home & Thriving

Hello Olivia  -

Can you believe you just turned 1 month old on July 2nd & had your 1 month heart-versary on July 5th? Today is 1 month since you were released from CHOP & able to see the sunshine and breathe the fresh air.  Last week we had your 1 month pediatric appointment & I'm thrilled to say you're consistently gaining & doing well.  You weighed in at 9 lb 0.1 oz (33%ile) & measured 21.33" (49%ile).  Mommy took some pretty cute photos to mark the occasion (of course I had to get in on it as a photographer)

 So much has happened in the month since your heart surgery.  Let's recap your time in the CICU, CCU & transition back home.  My last letter to you was the day after your surgery.  You spent 5 days in the CICU & had the nurses cooing over you.  Once your umbilical lines were taken out Mommy went to town dressing you in cute outfits.  The doctors were able to wean you down from a CPAP of 8 to 0.5L when you went to the CCU.  At rounds the doctors ordered blood work & X-Rays daily.  Your blood had high levels of biliruben and you X-Rays showed fluid on your lungs.  Each day the doctors charted your fluid decreasing & bili levels evening out.

In the CICU you were put on 2 diuretics to try & get the fluid off of your lungs.  By the time we got you home, you were able to get weaned down to Lasik once a day.  By the time you were moved to the CCU your heart was doing well.  There was a little mitral regurgetation on your last ECHO and they were continuing to watch the flow from the left ventricle.  When the CICU nurses told Mom and Dad that you could move to the step down unit they were so full of joy.  One step closer to home Liv!

The nurses, fellows & doctors in the CICU were superb & really helped keep our family together.  Long, long days at the hospital left our parents beyond exhausted.  Since I was at Grammy and Pop Pop's while you were in the CICU, Mom and Dad were able to sneak out to Sansom Row for a few date nights for a quick dinner.  Mommy even got a special care package from Maria who runs Precious Kisses - one of her Inspired Family partners.  During their long days, Mommy did some skin-to-skin the NuRoo pocket, so you could both get some bonding daily despite being hooked up to machines.

 

While you were in the CICU, Grandma Mimi & Grandpa Howard went down to Georgia for cousin Mary Catherine's wedding.  They said it was a beautiful wedding & shared some pictures with the family.

 

I spent two long weekends at Grammy & Pop Pop's house.  The first weekend we went to Pt. Pleasant & I got to go on lots of rides.  So much fun!  We're going to go again this weekend - you'll get to check it out with us!

Grammy & Pop Pop brought me back to CHOP at the end of our first weekend together.  I found all the toys & we got to spend as much quality time together as the CICU allows.  You got to finally put on some clothes.  Check out the cute Tinker Bell hospital gown another heart mama made for you.

While Mom and Dad spent all day with your during the week, Uncle Jon helped take care of me & Toshio.  His doggies Watson & Lily came to keep us company and play in our yard.  Watson is their giant Great Dane & guess what - he ate the new Japanese Maple Tree Dad planted.  Oops!  Uncle Jon and I had so much fun together.  We even went to visit the animals at the zoo.

On June 10th you got moved to the CCU.  Mom was so excited when the doctors cleared you to move to step down.  It was such great news to receive & meant you were doing really well.  They reduced your CPAP down to a nasal canulla on 0.5L.  You had an NG feeding tube placed before you left the CICU & were taking half of your feeds through the tube.  You needed a little help getting all your nutrients, remembering how to nurse & having the endurance to feed for long durations.  Each feed resulted in a bit of a struggle with breathing.   Good thing Mom had been pumping 8 sessions daily - tons of milk for you to bring up your weight.  

The CCU meant less supervision, more care by Mom and Dad & more private space.  You shared the room with a little 4 month old.  Poor little girl was in a lot pain and the nurses held and rocked her most of the day.  Mommy was thrilled to be able to do more babywearing, bonding and work on getting you to successfully nurse.  We decorated your new space to make it peaceful.

Lots of hospital staff visits while you were in the CCU.  Physical therapy and audiology have both come by and checked you out - you passed inspection.  Mommy and Daddy had to take some classes to prepare for discharge: CPR, administering medication & placing the NG tube.  Mom had to practice placing the tube into your stomach.  She thought she wouldn't be able to do it & that you'd freak out, but it was much easier than she thought it would be.

You were released on June 14th - just in time for Father's Day!!  The doctors pulled your NG tube on June 13th, even though you were still taking about 60% of your feeds through your tube & decided to see if you could handle feeding on your own.  You were in a vicious cycle of having a full belly from so much milk being dumped in a once that you weren't hungry for your next nursing session.  Guess what - you rocked it!  As soon as your belly was hungry, you let Mama know you were hungry, she nursed you & you started to quickly take more orally.  You were not meeting your goal feeds, but the doctors felt confident that you'd continue to trend upwards & could do so at home.  You had to pass the "carseat test" before you could come home & you rocked that too! Go Livi!  Free to see the sunshine & smell the fresh air - finally outside of the hospital walls.

I spent my last weekend with Grammy & Pop Pop, then came home on Father's Day so we could finally be a family of 4!  I did have a really great time with Uncle Jon and Ann Marie, Grandma Mimi & Grammy and Pop Pop, but was so excited to come home & spend time with you.  The adventures of Win & Liv could finally begin!  Here are some fun photos from what I was up to before you came home.  I even got to go to cousin Ava's 8th grade graduation!

Father's Day was so wonderful!  I even got to help Daddy turn my crib into a big boy bed.  

Dad had to go back to work for the next day, so Mom, you and I quickly discovered what life at home was like.  I learned that I love you so much and wanted to take care of you, but quickly discovered that I was not a huge fan of you stealing lots of Moms attention.  Every morning we have to weigh you, take your heart rate, get your oxygen saturation and give you your first round of meds.  For the first couple of weeks you were home, we also had to take your pre & post meal time weights to make sure you were gaining enough.  Your first week home we visited the pediatrician a few times to make sure you were gaining enough weight.  Thank goodness you reached your birth weight at a month old, so we could skip the pre & post weights, which were stressful for us all.

All in all we're settling into a daily routine nicely and getting out of the house as much as possible.  Mommy wants to make sure that we don't waste our summer away inside.  She's been wearing you in her baby carriers.  I also help Mommy around the house - lots of cooking and baking in my learning tower!

Our first outing as the 3 Musketeers! A quick Starbucks trip

The best part of the day is when all 4 of us are together!  Walks, lively dinners & lots of memories in the making.  

 

I'm off to bed & have so many more adventures of your month home with us to share!  I will try to sneak on to Mom's laptop during nap time tomorrow to finish catching you up to speed.  

I'm so glad you're home & we're becoming buddies Olivia!  I love you so much little sister!!

Big kisses,

Winston