Home Sweet Home
On January 13th our sweet Gracie was discharged from the hospital. When you are in and out of the hospital for as long as we were, you doubt that this could ever happen, But we did it! SHE DID IT!!!
After being discharged the first time from the hospital and then running to the ER just 6 days after it left a bitter taste in my mouth, but I knew that this was it, we were NOT coming back unless it was something very drastic.
As she grows, Gracie will still need a stent placed in her superior vena cava, but we are hopeful that we will get a lot of time at home before that happens. One of these cath appointments generally is just an overnight visit. Overnight, however, still seems like too long!
We still had a lot of appointments every single week:
occupational therapy
physical therapy
speech therapy,
cardiology follow-ups
GI appointments
as well as our normal pediatrician appointments. it was A LOT!
I think I can speak for many of my fellow heart moms and dads when I say we'd rather be running to 800 appointments and laying our baby in HIS or HER crib each night than sleeping on a hospital couch with tubes and wires attached to your child. Therefore, it was BEYOND worth all of the running around!
I lived off of the text notifications that they send you each week to remind me when I had to take Gracie to each place (Not my greatest idea) but it helped with our day-to-day. Keeping in mind that every place we went I didn't have just one baby but TWO.
Paisley was mobile by now which made things tough. At physical therapy, they had to sanitize every item that a child touches and well Paisley touched THEM ALL! It got to the point where I could not take Paisley with me to physical therapy anymore. She was not happy just sitting in her stroller, she wanted to be on the go. Who could blame her? She had learned all of these new skills and she wanted to use them! I turned to my mom to help me watch Paisley for the 1.5 hours we were gone for physical therapy. Not only did it make things easier for me and Gracie but Grandma got some extra time with her grandbaby!
Gracie was still on some meds as well at this point. Diuretics, mainly. I would draw those up and bring them with us wherever we were going that day. She had the feeding tube still in her nose so I would put her meds in through that. She also was still on overnight feeds, which we always started at 9 PM. We were trying to have her gain as much weight as we could.
The night feeds were the biggest annoyance of all. Not only was she connected to a pump ALL night but we had to make sure we were at the right amount per hour, get all of her meds in before we started it at 9 PM, and put her vitamins and iron into her feed. We continued this because it stopped her from getting sick. When I say annoyance I do not mean that I was annoyed at my child or what she/we had gone through and continued to go through. I mean it by it was definitely going to be the first thing for us to want to get rid of.
Gracie had this tube connected to HER FACE, HER FREAKING FACE! That in itself was a huge reason for us to work so hard to get her off at least night feeds. She deserved to be a normal baby (whatever that actually means). So we started her feeds back up at a decent speed but not too much to make sure all was tolerated overnight. Then I continued to add more by more as she tolerated it.
The twin connection for the girls was hard to miss. It seemed like they just knew they were back together. I'd catch them holding hands every now and then and my heart would just about explode.
Being home, in general, was a dream just about. We had a small glimpse of this after we took Gracie home when she was diagnosed with PVS, in our minds thinking this could possibly be our only chance to have her home. Looking back now I don't know how I kept my shit together. I still think about this from time to time... I hear a lot of you are "superwoman" and I take that in stride. I'm just a mom at the end of the day who saw the unimaginable.
Everyone tells me they don't know how I did it, or that they just know they could not have done it. I disagree! When you have a medically complex child you do not get a choice, it chooses you. You do everything in your power to push everything else to the side and focus on that child's needs. Becoming a parent in general you push things to the side and focus solely on your child, or at least you are supposed to.
I'm not saying every ounce of your life is completely given up but, life changes completely. I think this is why so many friends don't make it passed the stage of starting a family with their spouse. It's no longer drop and go whenever you want, but now more planning ahead. I know this is part of why I lost so many friends during this time. I don't regret a single word or action. I did my best, and I'm still doing my best for my girls and I am UNAPOLOGETICALLY content with that.
Thank you for waiting SO LONG for this blog post to come out! Life is changing over here at Trauma Momma Method, but I will continue to get blog posts out every Wednesday for my Adopt a Heart Mom blogs and every TWO WEEKS for my personal blog!
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