If Gracie Can Do This, So Can I
We were re-admitted on a Sunday and were hoping that it was simply a fluid in her lungs, a few extra doses of Lasix (diuretic) and we'd be heading back home by Friday. After we left the zoo which was not only draining on me physically (carrying Paisley) but also emotionally knowing Gracie was in the hospital, we went up to the hospital and spent the rest of our day with Grace.
Our cardiologist met me in our room and confirmed to me that everything else looked good except her lung x-ray was pretty hazy. Therefore, we did in fact ween her diuretics far too quickly and realized that the Aldectazide she was on (diuretic) and Lasix (diuretic) needed to be continued at this point. We couldn't have known at the time that Gracie was very sensitive to the weening of Aldectazide, and not as much to Lasix. There is no real reason why, it just was something she was sensitive to.
Gracie actually looked phenomenal already and was off of oxygen very quickly. She had a big purple bow on her head that her nurse had put on her. OMG it was so stinking cute! Her nurse also decided Paisley needed one too so she put a bit pink one on her. Our week that started off so horribly was turning out to be okay. We had many visits from our favorite physical therapist, music therapy and nurses.
However, I could feel that something was very off on the CICU floor. Then it hit me since we were very close to his room...
"Where was Mason? Why is Masons room completely empty?"
As a mom of a heart baby, you definitely try not to think the worst. But unfortunately, I knew that Mason was so severe that there was no reason he would have simply gone home... So I asked our nurse where was Mason? She was quiet for a moment and then said "Mason passed away".
"What!? Why? How? What could have happened?!
She went on to tell me that Mason had ended up having a stroke and it was just too severe for his little body to handle and while he seemed to have gotten through the stroke itself, he passed shortly then after. My heart hurt, to say the least. Our favorite therapist was very close to Mason and I knew she was heartbroken, as well as the rest of the floor. He was a very special boy, and not to say the rest of the kids on the unit are not, because they all are! But Mason had a very special place in many of the CICU staff's hearts.
https://fb.watch/biCOZidpJh/ This is the link to the Children's CICU team getting Mason ready for a car ride, you will see just how amazing they all were with him, and in what (I'm assuming felt for a 6-year-old boy) feel just as special as he was! As I have stated in a past blog, I still think of Mason and I will continue to think of him. He made an impact on my life and on so many lives!
We went on to learn that a total of 3 kids on the floor passed away while we were gone for just 6 days! SIX DAYS! The mood was very sad, I could tell that everyone was doing their best to grieve the losses, prepare for multiple funerals (the staff is literally family to us!), and take care of the rest of the patients on the floor who still needed their care every day, including us.
I had so many mixed feelings. While I had my own heart baby, I still hurt for the parents who not only lost their little ones but for those still fighting to live each day. I cannot quite explain these feelings... the feeling of having your own sick child but wanting to help others. I still don't understand these feelings and at times recall feeling conflicted. All I should be doing is focusing on my child and everything I could do for my own child, but I had such a strong urge to want to reach out to other families and tell them that they are not alone. I'd listen to them. I'd be there for them.
After a few extra doses of Lasix, and 6 days BACK in the hospital we were ready to be discharged and try this whole being home as a family of 4 again. This time I did NOT wait for my husband to meet us at the hospital, I packed the kids up in their double stroller, got Gracie's meds from the pharmacy downstairs, and booked it for the car! This was my first time ever putting two babies in car seats ALONE. Just like everything else that comes with being a twin mom, you figure it out!
Once we got home I remember feeling anxious, excited, nervous ALL THE ABOVE. But we were home and ready to start our time together as a family. We had pictures scheduled thanks to my very sweet Cousin Allie and her husband who gifted them to us. We didn't get to have newborn pictures or anything outside of a cell phone camera up until this point. She called to tell me that they were gifting this to me and she and I face timed and cried together. She knew how important and special this was to me and I was beyond myself with such an amazing gift.
We had our new favorite photographer meet us at our home to do these pictures as it was just so hard, AND SCARY to do them anywhere else. She was so good with the girls and us! She wore her mask the entire time which I appreciated so very much. It was a very special time for us as a family. I felt for the first time I could take a breath and just enjoy having my baby home, snuggle on OUR couch, have a night routine of rocking her to sleep, and most of all REAL BATHS because Gracie would have bed baths only with basically wipes. It was EVERYTHING!
NEW THIS WEEK! We will hear from another heart mom Becca and her story with her little boy JR and his heart transplant surgery.
Starting 2023 I will continue my Adopt a heart mom blogs. However, to cover the costs of my platform it will be a $20 Donation. That is for all 4 blog posts. A very small fee to tell your story and to allow me to continue to help others tell their stories!
Everyone with 2022 sign-ups is grandfathered in at zero cost but donations are always appreciated! Thank you heart families for making this blog possible, and allowing us all to continue to spread awareness for congenital heart disease.
Also, we will continue to do our Christmas packages for our heart families in the cardiac units. If you are enjoying my blogs please consider donating on my main page to continue making this possible for these families! Or follow this link to DONATE.
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