Gracie was coming home
We received the worst news we absolutely could to this point. We had been through open-heart surgery, sepsis, and countless more things that no parent should ever endure. Our child had not even been home in her very own nursery yet, met her puppies, grandparents, and friends. Tim n I laid next to our babies, seeing Gracie doing SO well, and we just took it all in.
Then it was decided.....
Gracie was coming home!
Our cardiologist came in to talk to me on a Monday. She said to me that we could keep Gracie here to see if her PVS continues to stenose or we could try bringing her home and caring for her there with weekly hospital checkups. You may think that this was an easy decision but keep in mind that I was terrified something would happen to her at home. Yes, I had watched them administer her meds, feed her, run her food pump, etc. But what if something worse happened?
I asked her cardiologist "what would you do if you were me?". Again, her eyes filled with tears and she said "this may be her only chance to go home for a while or at all, I'd want my baby to come home". This was hard to hear. But she was right, Gracie was off all her meds that needed to go through an IV, had no oxygen dependency, she was back on full-fat breastmilk fortified (to help her gain more weight), and was starting to bottle feed and we could feed the rest through her feeding tube.
It was decided, Gracie was coming home! I asked how soon would this be? Dr. Handler said, "by Friday". HOLY CRAP! That was in just a few days, we just about had our entire life at the hospital so I started gathering up items that we could start taking home. Little by little I took things home with me each night. We had so much there that we'd end up needing a huge cart to take with us on Friday because a lot of the items Gracie still needed for comfort.
The following days were filled with me learning how to use Gracie's pump, understanding all of her medications, and when they would need to be administered. Gracie would still be on a good amount of diuretics and this point, sodium chloride, reflux med, Tylenol for her blood clot, iron, vitamins, and a number more items. All items could be taken by mouth which was the biggest win for us.
Gracies feeding pump was super easy to use and it took me a very short amount of time to learn it, as well as administer-ing her meds. We were set up with a nutrition therapist who gave me all of her feeding directions as far as how much milk to how much formula per feed to ensure she was gaining weight. Our little sweetie was only 8lbs at this time, but it was a huge gain from her 6lbs before surgery.
I worked with speech therapy (She was literally the BEST) on her feeding and what all to expect from Gracie and bottle feeding. Kathryn was an absolute angel, I could always turn to her for a hug or hopeful thoughts. After all, we were not religious so praying for us just was not a thing. Gracie was on a continuous feed because her tummy was so small it could not tolerate big amounts of bolus feeds at a time. So she got all of her calories throughout the entire day.
We were given a backpack for her feeding pump so I could wear it and take her wherever we needed to go. It was actually kind of cool!
The Thursday before we left I brought it 3 dozen donuts for the staff who had kept Gracie alive and comfortable throughout her entire stay. I always thought it was the least I could do but it was so funny how excited they all were over flipping donuts! I remember one male nurse poking his head into the room and saying "I hear you have donuts in there!" I laughed and said help yourself!!
Then Friday came. The week was so slow but so fast at the same time. I could not wait to get out of there and get Gracie home! If I'm being completely honest though I was a nervous wreck!
We walked the floor a few times because we were waiting for my husband to come to meet us and help us move everything out of her room. I was sooooo irritated because he took so long! I just wanted to go! So we walked the hallways numerous times as nurses, doctors, and therapists came in to say their goodbyes to us.
One of the fellow doctors had been with us when we were up in the NICU, I'll never forget Aiden. He walked over and simply said, "Can I hold her before you leave?". I of course said YES! It was the sweetest moment watching him hold her. I cannot say how much I appreciated these moments. The staff loved Gracie, and all of these kids so much!
FINALLY, my husband arrived and we left the hospital with our 800 items, and BOTH of our babies this time! Naturally, I had to take pictures of the girlies all packed up.
I had my husband pull the car around to the valet area, we packed up, put the girls in the car, then I dropped my husband back over by his truck. I waited to tell my parents that Gracie was coming home because the last time with Paisley they literally almost beat us home and I wanted time to get her settled in.
Then just like that, we had our family together in our own home, for the first time EVER!
We got home on September 17th, 2020. We knew there was a chance that Gracie would need surgery again. In my gut, I knew she was going to have another surgery but I was hopeful that she could possibly not have more stenosing in her veins. Right before we left we found out that she in fact only had 2 veins affected, both on her right side. This gave me so much hope that my baby was going to beat all of the odds.
A baby with progressive PVS on only one side CAN live with only one side of her lungs, however, it does come with its own set of issues. We were hoping that we would not have to think about our girl living with only one side. A heart and lung transplant were out of the question as it is basically a death sentence and I was not putting Gracie through that.
I told my husband that we were going to fight and fight as long as Gracie showed us that she wanted to fight. But if it came down to it and Gracie was showing us that enough was enough then we would need to listen to her. I'm not saying this was us giving up, but we needed to be on the same page if this were to happen. I refused to sit there and let her suffer because we were so selfish in keeping her alive.
It was important to consider "quality of life". But we were hopeful that would never have to be the case.
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