The Start to Another Nightmare
I was rushing Gracie to the ER. I continued to look back in the rearview to her baby mirror to make sure that she was still breathing. My baby was grey and I was beyond scared. It was the longest 30-minute drive of my life.
Gracie was already pre-admitted thanks to her amazing cardiologist so we were able to get right into a room. They immediately put all the familiar monitors on her and her oxygen saturation came up at 70% which was far from her normal 98%-100%. Right away the nurse said "oh wow" as she put oxygen on Gracie. I knew that after we altered Gracie's diuretics that this may have been too fast of a ween for her.
She was so sensitive to all of her diuretics and we should've been much more careful. But per her cardiologist's request, I had weened them. I definitely do not blame her cardiologist for this, this was the correct thing to do to see if she could handle the ween. If she was not able to this told us that surgery was most likely inevitable as you cannot live on a diuretic your whole life.
The ER doctor had consulted the cardiologist and CICU team on call and they wanted labs drawn (more pokes!) and an x-ray of her chest. I already knew that her lungs HAD to be wet, and would show a huge difference from the previous mid-week x-ray. Gracie's cardiologist Dr. Handler actually met us at the ER to check on Grace. When I say she is an amazing person, I mean that with every ounce of me! She was off, and she came in just to check on us.
We waited for what felt like forever for her lab draw but mostly for the X-ray. Yet again I had to watch someone poke my sweet baby as tears rolled down her face. This LITERALLY kills me every single time. I get a pit in my stomach where I can almost feel the needle going into my own arm and it makes me want to throw up.
X-ray showed up and I stepped out of the room so they could take it, I was so thankful they didn't put Gracie into the Houdini trap from hell to take her x-ray. Instead, they did the table x-ray where they slip it under her body and take a quick picture. Sure enough, it showed that her lungs were significantly wet compared to her mid-week x-ray which had been only 3 days prior. It took only 3 days of being off of her aldectazide (diuretic) to flood her lungs.
The thought that my child was struggling to breathe was the worst feeling.
I should have gotten her to the ER earlier, how did I not realize sooner?
My heart was literally breaking. I had my baby home for 6 days. 6 days out of her entire 5 months and 15 days of life. I knew just looking at her X-ray that we would be admitted. The cardiology team came down to get us and bring us up to her new room. It felt so wrong being in a new room on the 3rd floor when I was so used to going strictly to room 303. But here we were walking into room 310.
Tears were falling down my face as we reached the 3rd floor and I felt like I completely failed my little girl. I should have known better than to ween her diuretic so fast. I should've protected her! But instead, here we were walking into another CICU room. A complete nightmare. I remember looking at my girl in her bed with all of the monitors on her, a new PICC line in, oxygen on, and thinking to myself...
Why my baby? A baby so wanted and so very loved, WHY?
The fellow on call was one of my favorites. She reassured me that they were pretty positive it was just an overflow of fluid into her lungs, some extra doses of diuretics would take care of it, and then we'd be headed back home. I was hoping this meant by the next day but to be fair Gracie needed to just get better and it didn't matter how long that took.
This was the exact reason I was so scared to leave the CICU in the first place. I was scared of what could happen if I closed my eyes for one second. I had kept the owlet on Grace each night and while I notice her heart rate dropping this was nothing out of the ordinary for her, even her oxygen saturation looked good that night but for some reason that morning it was all just too much.
I stayed with Gracie for as long as I could that day/night but as usual, I had another baby at home who needed me as well. This was tough being a mom of twins, I wouldn't have changed it but it was so hard always having to choose to leave one.
Again, I asked the department head if I could bring Paisley back in with me like I did so many times before and she said "of course!". I was relieved she would still allow this but she knew we were going through so much hell, much like the rest of the parents on the unit.
My friend was still visiting from out of town and she wanted to go to the zoo for a bit. I was so torn with a mixture of feelings because truly all I wanted was to get to the hospital and be with Grace. I HATED having her there alone. I called in that morning to see who was taking care of her and it was another amazing nurse who told me she would be snuggling with Gracie until I got there. I was so relieved and felt comfortable enough to make a short trip to the zoo.
As we entered the zoo everyone "ohhhh'd" and "awwww'd" over my friend's twin boys and it honestly broke my heart. I had twins too. But no one knew that because I only had Paisley strapped to my chest. As a twin parent, you feel beyond special having these identical babies, but I had not gotten to feel that yet. One was sick and in the hospital while the other was thriving and growing.
What else would be taken from me?!
I felt like I was at my breaking point. Just when I got my girl home and things might feel semi-normal, here we are again in the hospital. But guess what?! I didn't get to break, I didn't get to crumble.
I had to pull my big girl panties up, have a good cry and pull my shit together.
And THAT is exactly what I did...
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