Unexpected Procedures
Staying the night with Grace was... VERY stressful. I knew the beeps and alarms like the back of my hand by now. I knew if things were good or bad just by the sounds. The sounds that still to this day haunt my dreams. The sounds that no one should ever have to listen to day in and day out. I was in and out all night due to being worried about her. The first 24-48 hours are crucial after these big surgeries. Not to mention in the back of my mind I knew we would be waiting 3-6 months or even two years old wondering whether or not the surgery worked. Whether or not she had the progressive Pulmonary Vein Stenosis or not.
The next morning we waited for the cath lab to take Grace down for a stent. She had significant narrowing in her superior vena cava (SVC). They believe it was caused by her first surgery and all the scar tissue. They put a stent in it just a few minutes ago to open it up. Time would tell if this stent would grow with her well or if we'd need to intervene at some point.
By December 13th we were hoping to get her extubated that day or the next. Grace had a tendency to have an obscene amount of chest tube output and it was no surprise that this time she did as well. They had started up feeds and stopped IV nutrition, only to have to backtrack due to fat coming out of her chest tubes meaning she had pleural effusions. Again, something that we saw with her previous surgery but we were hoping it would not happen again.
Each morning I'd walk in with Paisley and immediately talk to grace. She was still on quite a bit of sedation medication so even though she was not back to her old self she would still wiggle around when she heard my voice. It was the little things at this point. Her heart rate also would increase a little when she heard the sound of my voice. It was always reassuring to know she knew I was there beside her.
Because of her pleural effusions, she ended up having another chest tube placed to help drain the extra fluid. This broke my heart yet again to know she would need ANOTHER procedure. While this was a small procedure it still meant putting her to sleep. During this time I decided to work on getting our Christmas cards out. While I knew this was not important it was still important to me to continue to show our friends and family our two precious girls.
Getting a chest tube placed was done bedside. They basically turned her room into a mini OR and place it right there. That night was a decent night for Gracie. She seemed to have slowed her chest tube drainage down, only to have it picked back up. She also started to have some Ariythmia which was scary to see. Her heart rate would randomly just shoot up into the 200s for absolutely no reason. They decided that this may be due to irritation from surgery and she just needed more time to rest and recuperate.
Each day we were just hoping to take a step forward even if it was a small step. By December 15th she was extubated and off of all her sedations meds. This was a BIG step forward! However, due to tachycardia, she would be placed on yet ANOTHER medication to help with that. All and all it was so nice to see that most of her puffiness was gone.
In picture 3 you can see our matching bracelets. I never took mine off and Gracie had hers on her penguin wubbanub. This helped keep me feeling connected to her even when I was not with her. To this day I still have mine (it fell off after many months, which gave me anxiety!) and Gracie STILL has hers on her penguin wubbanub. If anyone is looking for their own you can purchase one HERE.
A big issue with these heart babies is having a lot of problems with fluid balance. Tim and I were always so concerned when she was fluid overloaded and when she was far too diaereased. It was frustrating to see our beautiful baby girl's eye so far sunk into her face due to all of her diuretics. At this point, I had to voice my concern to the doctors. She looked FAR too diaereased and it was making me extremely concerned!
As usual, the doctors thought that they knew best, only to turn around and tell me that they had in fact dried her out too much. Thankfully, it is wayyyyyy easier to give her fluid back than to take it away and many of the nurses reminded me of that. The thing is, I knew my baby clinically better than ANYONE. I had a conversation with one of the Doctors on (Rob) we butt heads pretty bad. But at the end of the day, no one was going to tell me that they knew my child better than I did. I was there EVERYDAY, I saw the changes in her every single day and I knew that she was farrrrrrr too dried out.
By December 16th, Grace was starting her physical therapy again. This was night and day compared to her first surgery. I was so proud of my baby girl, it was no surprise that after
gaining weight and being home for a while she was thriving this time around. I remember being so hopeful that just MAYBE we would make it home by Christmas.
If I could go back in time and have a chat with myself I would remind myself that Christmas was just a day and it could be celebrated ANYTIME. Right now Gracie needed to take her time healing so that we could have many Christmas mornings in the future.
Do not get me wrong, I did understand the importance of her healing, in fact, I would have spent 50 Christmases in the hospital if that was what it took to get her home.
The next day Gracie was experiencing what they call Hypo Delirium. The best way to explain what this was like is... The lights are on, but no one is home. She was not herself. I have spoken to a few other heart moms who have experienced this with their kiddos and we all have agreed that it is a very tough time. You play games, sing songs, or talk to your child like a normal day and they virtually have no response to all of their favorite things.
We had not experienced this with prior surgeries so I was deeply concerned. I posted on Gracies Facebook page and said this:
"How big is Gracie?!?! Soooooo BIG! This was her favorite game, and we’d get a huge smile out of her. But right now she is hypo delirious and it is almost like the lights are on, but no one is home. It is so hard to be with her every day knowing how smiley she normally is and not even getting a smirk. I’m so glad she is doing well medically but I want my baby back!"
I knew that this storm too would pass and I'd get my smiley girl back, but at that time I was struggling to see her this way.
By December 18th Gracie had her Arterial line out, which meant I could HOLD MY BABY!! She also got her foley out which would help prevent further infections, her Pacer wires off from the tachycardia, and Bumex stopped which was the medication helping to dry up her pleural effusions and decrease chest tube output.
So many happy things happening but what made me the happiest was holding my girl and having her reach for my face. I sang some of the random songs I’ve made up for her and got a few real smiles!! Very brief moments but I’ tdake what I can get.
"Is that my GWACIEEE, she's really CUTEEEE, and really SQUISHYYY, and I LOVEEEEE HER, la la la la la GWACIEEEEE"
Having her reach for my face gave me all the feels. She knows who her momma is, she knows I'd do anything for her and never leave her side. At the end of the day, I lived for moments like these. That's my girl, and to this day that is momma's girl!
My heart warrior collection is available HERE with Mothers Day around the corner 15% of all merchandise will be donated to my Christmas fundraising for our heart families in the CICU! Can be purchased on this website or my Etsy site!
Also, summer is right around the corner!! If you are having trouble with losing weight before or after a baby please reach out, I have VERY affordable packages for custom meal planning and workouts, it doesn't matter if you have a gym or not!
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