The Next Few Days Are An Emotional Blur
I wish I could tell you all about the few days after Gracie’s surgery, but if I am being honest it all is a complete blur for me. The brain has a funny way of dealing with traumatic events and this affects memory loss. Not necessarily that it is completely gone but that it is packed away so deep that it feels like it is. This type of memory loss is called Dissociative amnesia– occurs when a person blocks out certain information, usually associated with a stressful or traumatic event, leaving him or her unable to remember important personal information.
This also can interfere with many relationships in your life. When someone goes through something that is so traumatic it is important for them to have a good support system. Every day can be completely different. They can be happy one second and crying the next, especially when they are so deep within the thick of this event, as I was.
I remember that Gracie was starting to wake up from sedation as they weaned some of her meds, so they actually had to increase her paralytic medication because her chest was open. Each day I waited for my husband to get home from work to be with Paisley before I could go see Gracie. This was basically torture for me. I called the CICU every morning when I woke up (and sometimes even in the middle of the night) to ask how Gracie was doing. The first 24-48 hours of these big surgeries are always the most crucial.
If something was going to go immensely wrong it would be during these hours. Therefore, generally, the nurses only have 2 patients in the CICU but Gracie’s nurses actually only had her. They were two male nurses, one was in training. I remember him so vividly. He was so bubbly and outgoing. Almost too outgoing especially given the circumstances. While the nurse training him was very quiet and soft-spoken but he knew his shit. I was always very happy when I knew they were watching over her.
I remember asking one of them if it was strange to take pictures/videos of Gracie in the state she was in. I felt like it was almost morbid to do so. But I also knew I was going to have a lot of explaining to do someday, so I needed to be able to put together some sort of timeline for Gracie.
This blog was tough to write given the memory loss that I have, however, I am able to piece together these big important parts. If I am being honest I had to go through the text messages with my husband back during this time to put together the timeline of events. So here they are.
June 9, 2020– Gracie was having a tough time with her blood pressure being too low. They had to play around with some of her medicines to balance her out. That night she had a much better night and she seemed to have been progressing forward. But as soon as one thing made us feel out of the woods, another thing would go array. It seemed to always be 2 steps forward and 1 step backward.
It was a very very emotional time for us individually and as a family. I was getting text messages left and right and I could barely keep up with them. It also was really hard to keep living every day explaining how sick my poor baby was. I know most cared deeply for Grace and the rest of us, but it was really tough to keep texting.
As I went back through some of my text messages to look at my state of mind as I explained it all is/was very hazy for me. One thing I noticed is how extremely cold and quick I was with texts. I wouldn’t expect me to be super bubbly and happy during this time but it absolutely looked like I was just answering it quick to get back to holding Gracie’s hand.
I do remember that one night I played a song to Gracie called “Lady” by Brett young. As I play this and write, tears fill up my eyes because it brings me back to playing it for her every night after that. I sent it to my husband and he text me back saying that he danced with Paisley to it. This turned out to be my favorite song during this hard time and I loved playing it for Gracie.
We listened to a lot of country music during this time. In fact, when she was previously in the NICU we would dance to the songs together and I would just hold her as tightly as I could. To this day she still loves to dance with her mommy and listen to me sing to her even if I just am singing Cocomelon.
On this day I had to leave Gracie early so that her daddy could come to see her. We still could not be at the hospital at the same time so it was challenging. I text Tim and asked him how our girl was, and he told me that she opened her eyes for him. I was so happy and so jealous at the same time! The meds she was on kept her very sedated so she slept most of the time. Mainly to keep her from moving too much because her chest was still open.
Paisley started sleeping 7-8 hours straight for me and let me tell you this was the best gift she could give me at the time! While I still had to wake up and pump, it was nice to not be on two different schedules between pumping and feeding Paisley. It was almost like she knew I needed some extra sleep.
Gracie’s edema started to go down and finally on June 12th she started looking like our
baby girl again! Then finally on June 13th, they closed her chest and our little heart warrior did great! They had to give her a paralyzing medication so she would not move whatsoever, they also put jelly on her eyes so that her eyes did not dry out. All of this was obviously very new to us and hard to see, but we kept telling each other that it is best for Gracie!
My husband and I would trade out seeing Gracie, it was always very hard for me to be away from her since we couldn’t both be there and we still had Paisley at home. Also, with my husband working generally only one of us per day could be with Gracie from about 4-8 pm. I went the majority of the time and every few days Tim would go.
I know this was tough on my husband but I also think he knew that I was struggling on the days I didn’t get to see her so again he bit the bullet and let me go most often. A few times I was really late getting home and I was borderline falling asleep on the drive, so Tim decided that I would always be first to see Gracie on weekends because a car crash was not an option. Also, one night the tape that was on Gracies face from her breathing tube was taped to her literal eyelid and I flipped out and made them
redo it. I told them I was not leaving until it was fixed.
Sometimes I couldn’t comprehend the stupid shit they would do and just not re-do something. That would’ve been so annoying for her. We also were hoping she’d be getting her breathing tube out somewhat soon now that they were weaning all of the meds. She was starting to move her legs, feet, and arms by now.
She also had what is called a heart line and unfortunately, when a baby has a heart line in, you cannot hold them. This was becoming very difficult for me, not being able to hold Gracie was so hard.
Once I was more comfortable with Paisley’s monitor, my mom started to come to watch her so that I could go see Gracie much earlier and spend more time with her. This also allowed me to get back to Paisley so Tim could see Gracie more.
June 20th Gracie started having some Bradacardias and Ventricular tachycardia back and forth. When this sort of thing was going on I wouldn’t leave until I knew it was under control. They drew labs to see if everything looked okay and it turned out that her potassium was pretty low so they gave her some potassium and it seemed to get much better.
June 22nd Gracie got a CT done because her chest tubes were still putting out too much fluid. Again, I had to wait until Tim got home from work to go see her. We found out that she had a blood clot in her right atrium and that there is no immediate solution for this. She would be put on blood-thinning meds for a very long time. In fact, she was just taken off of them a month ago after a follow-up. I told Tim that all I could do was cry at this point. It was so many ups and downs and it was taking a huge toll on me watching my beautiful baby girl go through so much.
I would cry on my way to see her, I would cry on my way home after leaving her and I would cry anytime I was alone. Sometimes I would even cry just looking at her, I could not believe this was our life. She at this point was still not able to have my milk or anything for that matter. She was on IV TPN and lipids. I knew she was so hungry because she would suck on her nookie super hard. A few times a day I could swab her mouth with my breast milk and you could just see her little tongue going wild. It broke my heart, but at least I could do that for her.
June 23rd Gracie got off of one of her med drips; Norepinephrine. THIS WAS HUGE!! Then on June 24th we finally got her breathing tube out. The first thing I thought was I could not wait to hear my baby cry! I had watched her for DAYS trying to cry with no sound coming out. And then just like that my baby girl had her breathing tube out AND her heart line out. After 19 excruciating days, I got to hold my sweet baby girl.
Stay safe, stay healthy and Happy Holidays EVERYONE!
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