Postponed!

Like all things in life, nothing is ever 100% certain and this rings true with scheduling major surgery as well! 

This morning the Heart Clinic called and they had a new baby come in who needs emergency surgery so Margaret is being bumped to next week.  It's looking like Wednesday, July 26th will be the new date for her surgery -- we are waiting on more details like time and when pre-op will be set up again.  That's right... we're going to have to do pre-op again.  There's a chance the x-ray, ECHO and EKG won't need to be done again, but the dreaded bloodwork will for sure.  Yikes.  

Anyways - We've been anticipating this surgery for 6 months so what's another week to wait?  Maybe we will get some rest over the next few days and be able to recharge because Lord knows neither of us has gotten any sleep lately.

We continue to be grateful that Margaret continues to be stable and her team feels comfortable with moving her surgery back.  

Please say some prayers and keep this new family and new baby in your thoughts over the next couple of days.  Bill and I understand their situation and the emotions they are probably circulating through all too well.  

More details about when Margaret's surgery will now take place to come...

Here's a picture of our little warrior from earlier this week when we met up with Auntie Jessie:

Pre-Op

"The worst heart defect to have is the one your baby has."  --- Amen.

Today was long and Mighty Margaret was a complete rockstar.  Our morning schedule was jam packed and Margaret wasn't going to miss ANY of it.  The little lady who usually takes multiple naps before even lunch time was wide awake the entire time we were at the hospital.  She had her longest stretch of completely alert time today from 8:30am-12:30pm.  It was amazing to watch her every second.  

We started our morning at the Children's Heart clinic where I braced myself for a long and torturous ECHO where I just knew Margaret would scream through the whole thing.  Guess who didn't scream!  Margaret was perfect.  She let the ultrasound tech get good images and only started to get fussy towards the end.  It definitely helped that the TV in the room had Mickey Mouse on -- this little lady is already in love with the Mouse and we can't wait to take her to Disney!!

Next up was meeting with Margaret's favorite cardiologist.  Margaret's height, weight, sats and BP looked good and we think her doctor was excited to see how much she's grown.  She certainly was excited to see him and gave him lots of smiles and excited arm/leg wiggles.  She also let him listen to her heart and lungs while she stared him down and tried to "help" by grabbing the stethoscope   We got to ask a lot of questions and get a better idea of what to expect for Thursday.  Every time we bring Margaret to the Heart Clinic for appointments we are reassured that we made the absolute best decision in pursuing her care there.  The love and patience this clinic has for their patients and families is phenomenal.  

When we finished at the clinic we headed up to the Par 4 unit.  This is where we will start on Thursday and also where the waiting room is located.  The Child Life Specialist met us at the check--in desk and she was with us for most of the rest of the appointments.  Her job is to help make sure we are fully informed and prepared for what Margaret will look like after surgery and in the coming days.  It's a shock to see your baby with tubes coming out of her everywhere so we are thankful the hospital has people on their teams to help prepare families.  

Our nurse today was the same one we had a month ago for Margaret's cath -- she was so excited to see Margaret again!  

Babies with heart conditions are often very difficult to get blood draws from and Margaret is no exception.  The lab tech came up to draw blood and unfortunately after checking both arms and sticking her twice, he was unsuccessful.  This was hands down the hardest part of today.  Margaret was so upset and she let us all know how she felt.  Thankfully she's pretty easy to calm down most of the time and the fabulous nurse advocates strongly for her, too.  2 unsuccessful pokes and then they call in the big dog...the anesthesiology doctor.  She was able to get 1mL of blood (they needed 5 for all of the panels and tests they are supposed to run...) from a vein in Margaret's hand.  This was a good start --- time to prioritize those tests until they could get more blood on Thursday when our little diva would be under anesthesia.  The lab tech came back and was able to do a heel prick to get some more blood.  Poor Margaret was exhausted by this time but she kept her eyes on everyone who came into our room.  She wasn't about to miss ANYTHING.

We had a chest x-ray done as well and by this point Margaret was way over tired after skipping all of her morning naps and had a full belly from having finished one of her feeds while being on the unit.  Bill and I kept saying to each other how we couldn't believe that she was still awake!  Too much excitement and new people to get to know I guess.  

Next up was the EKG.  Usually kids don't mind these but Margaret was still upset about all of the pokes and blood draws so she was pretty sad about this too.  The tech let me hold her and that helped.  *look at that sad little face!!!!  

The last thing on our agenda was to go over eating restrictions for the day of surgery, a few reminders of what to remember to bring and then we were off!  Time to head home and debrief with each other and check in with each other's sanity.  We might have made a detour through the DQ drive-through for a little ice cream therapy on our way since we both managed to keep calm and I didn't cry during all the terrible blood draw attempts.  :)

That's it for now!  Tomorrow is our "day of rest" and we will be soaking up all the snuggles and frantically packing up bags for Thursday.  We are not ready for this, but we are.  Margaret is going to continue to kick CHD's butt and show the world just how Mighty she is. We are SO SO SO proud of our tough little warrior.  

**seriously - that smile.  I've never met such a happy baby and I'm so blessed to be her mama!

Surgery - the BIG one

Thursday, July 20th, 8:30am

Mighty Margaret is scheduled for her 3rd heart surgery, although this one is "the big one" as it will be open heart surgery.  They call this surgery her "full repair" but we do not yet know what exactly will be done.  We know what the overall defects are but Margaret's heart is complex and a lot will be determined during the surgery.  Pre-op appointments are on Tuesday, July 18th and we should have a better understanding of what to expect of the surgery after those appointments.  

We ventured out to take some pictures of Margaret in her Mighty Margaret outfit.  Here are a couple!

And a few wearing another favorite onesie:

4th of July

We had some fun taking pictures of Margaret in her Fourth of July outfits -- yes, she had several!  Here are a few snapshots.

This girl loves to lounge in her pool. :)

Photos

I made a promise to myself that I would learn how to use my nice camera when we had a baby.  Well, Margaret is here and I've been working on keeping this promise because Bill and I both agree that we want higher quality photographs of our little lady and family instead of always only having iPhone quality ones.  

Here are some shots from when we were still in the hospital a few days before we were discharged.

And a couple from a trip to the park...*check out that pout! :)

Heartbeat 5000

Today was a phenomenal day.  Our team was able to fundraise over $1,600 to be donated to the Cardiovascular unit at Children's!  Since this was the first year we have participated in this event, we were not entirely sure what it would be like.  Now that we've gone through it once, we are even more excited to participate every year.  We are very thankful that events like this exist and we are able to "give back" to the hospital that provides such critical care to many children and has become so important to our family.  Here are a few pictures from the day.  

Father's Day

Best.  Dad.  Ever.