1 month post-op

Can you believe it?  Margaret's open heart surgery was 4 weeks ago already!  It is amazing how fast the weeks have gone by now that we are home and settled back into our routines.  

Thanks Susie for the adorable headband!!!

The emotions we've experienced over the last month have been kind of all over the board.  It's such a relief to see Margaret doing so well, thriving really, at home but it's also a bit terrifying.  You see, it can be easy to forget that Margaret has a fragile heart.  She's spunky, sassy and most of all SO SO happy.  Seeing her in pain was the hardest thing either of us has ever experienced.  When we brought her home after surgery she was still struggling with not feeling quite like herself and we were still working on weaning her off of a pain med -- not because she was in pain, but because she was struggling with withdrawal.  I wasn't sure how much we would be willing to share about our journey as a family impacted directly by a rare CHD but ultimately the goal is to spread awareness and sometimes that's leaving your comfort zone.  Sometimes that means sharing more than you thought you would be comfortable doing and I guess that's kind of how we feel when we update everyone with how Margaret is doing.  We don't want anyone to feel bad for us --- look at this beautiful little girl we have been gifted by such a gracious God!  No matter what we go through, we are together and we will continue to focus on the good while also giving ourselves some time to deal with not so pleasant emotions occasionally because lets be real, we are still human!


Anyways...back to Margaret 😊

She's was able to wean off of the pain med much faster once we were home.  It was AMAZING to see her realize she was home and her adorable smile and goofy personality soon came back a few days after she realized she was here to stay.  We had a post-op appointment a few days after discharge and Margaret's cardiologist was happy with how well she transitioned home.  We did learn that she will unfortunately need a heart cath in mid-September.  We were hoping we would have a few months before going back for another procedure but it is what it is and we just remind ourselves how amazing our team is and that they really and very truly put Margaret's health and well-being as #1.  Have I mentioned how great they are?  They are like family to us even if they don't realize it, we love them!  

Next week, Margaret will have an echo (cue anxiety!).  After the echo Margaret's cardiologist will meet with us and we will discuss the plan for the heart cath.  The heart cath will not be diagnostic this time, it will be for them to do more intervention.  Something about checking on the pulmonary arteries, measuring leakage in a couple of places and measuring the pressures more accurately and deciding from there.  We will be staying overnight.  

For now, we will continue to bask in all of the glory that is our life and remind each other how blessed we are with the life we've been given.  We worked hard to get where we are and are glad we can share our experiences with you all.  

In honor of it being 4 weeks since the big surgery, of course, I snapped some pictures of Margaret in her Heart Warrior onesie --- looks like I'll be needing to order a new one very soon!  It was awfully snug but With Hope & Grace does such a wonderful job and her products are high quality.  Sharon is a heart mom as well and she truly loves what she does and we love supporting a small business like hers.  💓


OH - those pesky teeth that have been trying to come through have FINALLY popped and they are the cutest!  We're still waiting for them to finish coming all of the way through but Margaret is obviously much more comfortable now that they've popped through the gums.  Success!