Our Little Valentine

Happy Heart day!!! ❤️

The last few days have been interesting. The roller coaster of emotions was extra crazy.

We have a date for when our Mighty Margaret will have surgery to place the G tube...tomorrow! Originally she was supposed to go in today, but they only gave me a one day notice and that was too much for this mom to take in. Thankfully the nurse practitioner is amazing and listens to me and was able to get it postponed to tomorrow, Wednesday. Now I've had a little time to process and accept the inevitable. The tube. 😳

I have struggled with accepting that it's time for a feeding tube because I think about how inconsistent Margaret's opportunities to show us what we can do have been. As a mom, it's excruciatingly difficult to see your tiny baby struggle with eating since that's the one thing we were supposed to tackle together. Again, the amazing staff have been listening to my concerns and agreed to try a few more things with our stubborn little lady to make sure the tube is absolutely necessary. We have discovered that Margaret is aspirating a tiny bit and this causes her to stop drinking - the good thing is that she recognizes when it doesn't feel right and responds appropriately. We also believe that Margaret gets so tired from working super hard to eat so she needs more time and more practice to build her stamina. So, the next step? We will continue to work on eating using slightly thickened milk so that she becomes more comfortable and can strengthen her coordination skills. Hopefully the tube will only need to be used for a little while and we can have it removed once she's consistently eating and gaining weight appropriately. Apparently it's quite common for cardiac babies to struggle with this skill. In the last 2 days she has made some great progress but overall not enough. Tomorrow Margaret will get a fancy new accessory and mom and dad will get trained on how to manage it.

Over the next couple of days Bill and I will be inundated with information and training about everything we need to know in order to bring Margaret home. Want know why? We are going home! No official discharge date yet as we need to see how Margaret recovers from the surgery tomorrow, but it is going to be soon, like a few days away, soon!!! 

Prayers for a smooth recovery for Mighty Margaret and prayers for our family as we slowly begin to transition home.

P.S. - the shirt says "super baby" and there's a cape! --- how fitting, eh? :)thx auntie!