"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.