Busy start to 2018

Mighty Margaret has had quite a busy week!
We started the week out with going to the pediatrician for her 1 year appointment (someone pinch me because I still cannot believe my precious baby is a whole year old!!).  Margaret got her immunizations, we did a quick check for strep as her throat looked sore to the doctor, had a nice long conversation and caught up with our favorite pediatrician.  We're currently in the middle of an annoying disagreement with one of our pharmacies and our insurance regarding Margaret's main reflux medication.  We *think* we have a plan for now, but it's all super annoying and frustrating.  Anyways, Margaret did a lot of exercising of her lungs at this appointment but also flashed plenty of smiles and even blew kisses at one of the nurses. The best part of the appointment?  We got the pediatrician's support in attempting to begin a wean off of Margaret's feeding tube!  

Tuesday was supposed to be an OT day but I decided to cancel the appointment.  Margaret had a reaction to her immunizations and ended up with a fever and just needed a day to sleep and relax.  She's feeling much better today and we were able to keep our cardiology appointment.  We did have a swab taken and tested for influenza, just in case - negative, thankfully!

Today was the biggest day of the week.  Cardiology.  These appointments always stress us out as we seem to never really know what to expect.  Margaret screamed a lot during her echo but one of the nurses was able to calm her for a while with bubbles -- we had 3 people in our room during the echo and at one point the cardiologist came in as well.  Margaret is such a goon!!  She made it through the echo and I believe they actually got decent images - THANK GOD!
Next, she had her pacemaker checked and her settings changed.  Her pacemaker has been pacing about 1.3% of the time and that's right where we expect it to be.  Her settings were changed to let her heart rate go a little lower than it was previously allowed to do -- it was set to pace her if she dropped below 100 but now it will pace her if she drops below 80.  Part of the check includes the technician pacing her to make her heart rate go faster and slower which Margaret is not a fan of.  
When we met with Margaret's cardiologist you could just tell that things look good.  He was excited to share that her echo looked better than last time --- ummm, WHAT?!  
Overall the echo showed:
- the PFO that Margaret has now has blood flowing in the correct direction now (right to left) - previously it was flowing the wrong way.
- her tricuspid valve appears to be barely leaking, more like dripping compared to it being more than mildly leaking during her last echo
- the right side of her heart is still enlarged, however, the pressures look like they might be a tiny bit better
- Her Sats have stayed in the 90s since her last cath.  We've only seen it dip into the 80s once and that was during a nasty cold that she had last month.  
-- Margaret's heart looks so good!  All of the stress and scariness of her last heart cath were worth it.  Placing that tricky stent has helped her so much and we continue to be SO SO SO grateful for the amazing team of doctors and surgeons we have fighting for our little warrior.  It's fun seeing how excited they all get when she's doing so well.  While we were in the clinic we even had several other doctors pop in to say hi and it's always extra fun to see how they love seeing Margaret as well.  
We also got the a-ok to pursue a tube wean from cardiology so the next few months should be busy and exciting for Mighty Margaret!  We need to get this girl eating and right now we plan to take full advantage of how well her heart is doing and try to wean her.  Thank you for being a part of our village, friends!   

O-N-E

Can you believe it?  Our lives have been blessed with the presence of Mighty Margaret for exactly one whole year!  Where has the time gone?  

Happy First Birthday, little love!  Your Mommy and Daddy are so proud of you and we are excited to see what year #2 has in store for you (and us!).  Over this next year, we pray that you continue to shine bright and keep all of your doctors/nurses/specialists on their toes.  We're hoping for a few less terrifying surprises, this time around, though. 😜

This last year has been jam-packed with moments full of terror balanced out with moments that literally rocked our world.  Life with Mighty Margaret is oh so sweet and Bill and I continue to be in awe of our little warrior.  

This year, because Margaret's still a little questionable when it comes to stability with her heart, we decided to skip the whole "big 1st birthday bash".  The idea of having a big party and risking her being exposed to more germs and illnesses than she already is exposed to is a little too terrifying for us.  

We are looking forward to having a big party this summer to celebrate Margaret's Heartiversary - the anniversary of her first open heart surgery, at the end of July.  The weather should be much nicer and the germs, hopefully, less prevalent, at that time.  Stay tuned for more information about that as summer nears - it's going to be awesome! 

For now, we celebrate Margaret turning 1 by bringing new blankets to the CVCC/CVICU for families spending time this winter inpatient.  We exceeded our goal and ended up having 50 to donate!  We are so excited!  These blankets will be a much welcomed treat for families spending time in cold hospital rooms with their children.  Thanks to Sharen at With Hope and Grace for the blankets!!!

Next week will be a busy week for Mighty Margaret.  We have a handful of appointments to keep us busy and that includes a big cardiology check-up on Wednesday.  Prayers for a calm baby and good echo results are much appreciated!! 😊

Thanks, friends, for sticking with us and following our journey this last year!  Our family is blessed to have such a wonderful "tribe" surrounding us and we hope you all know how much we appreciate you!