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!

Welcome Home Photos

I have the best sister. For weeks while we were in the hospital Jessie had set up a photographer (Cari Dugan Photography) to come and take some pictures of Margaret for us but things kept coming up and we canceled several times. Well, when we finally got discharged Cari came to our house and did a session with us to help document our first day home! The pictures are great and I never would have taken the time to reach out to a photographer because I was so overwhelmed with being in the hospital. These photos will be cherished forever and I can't express how grateful I am for the best sister ever. She always looks out for all of us and her excitement for being an aunt is unmeasurable - Margaret can't wait to get into mischief with you! "AUNT JESSIEEEEEEEE!!!"

HOME!

WE'RE HOME!

🏡👨‍👩‍👧

"Normal"

Well. Another week has gone by and I think it's safe to say we are ALL sick of being stuck in the hospital. Despite the amazing staff and yummy pizza (seriously, I love it and am not ashamed that I've literally eaten it paired with a chocolate milk every day we've been here😬) we are all getting a little cranky about being here. 

This week we have had lots of conversations about how we get home. It's daunting to hear about all the doctors we will continue to have often appointments with and the list of medical supplies and "things" we are going to have to manage is a mile long. Thankfully, we are confident that we will not be sent home until we are comfortable with how to care for Margaret's cardiac and feeding needs. Thank God for patient staff, especially when we ask a million questions over and over again!

Feeding. Ugh. Who knew it could be so hard for a baby to eat! Especially one that is half me! We haven't had a lot of marked success with getting Margaret to eat. We have been told that this is common for cardiac babies and Margaret has been through so much in her short life so far that she's struggling. Unfortunately she seems a bit stuck, which is a million times preferred than going backwards, but in our minds, maybe a little more frustrating. 

Tomorrow, Margaret will have some tests done to make sure there isn't anything structurally keeping her from eating. Once those results come back, we will schedule a surgery to place a feeding tube in her stomach (G tube). I've worked with many kids with these but there's something extra terrifying about it when you're preparing for your own infant to have one...and yes, being the mom I am - I've cried about it. Lots. It's hard to see your baby not eating on her own. 

The silver lining? Since we know open heart surgery is on the horizon for this little princess, having the G tube will mean she can get fed right away after it and during recovery. It will also be so nice to actually get to see (and stare) at her beautiful little face without the tape and NG tube. Those cheeks are just so glorious and we can't wait for them to get even more plump 😍 Having the G tube will ensure that Margaret gets the calories she needs to grow and prepare her body for surgery. When she is taking enough through her mouth, then we can have a conversation about removing the G tube but it will probably stay through her next surgery just to be on the safe side. 

Home is nearing closer and closer! It's kind of scary to think about bringing Margaret home knowing that we will have lots of "extra" stuff to manage, however we will embrace it all and hopefully fall into yet another new kind of "normal" for our family.