Awkward Conversations
Short and sweet today!
Gracie was making leaps and bounds, she was smiling every day, giggling, and all around my happy girl. She still had one chest tube that was STILL putting out fluid. This was SOOO Frustrating!! While this chest tube would be one of our last significant hurdles we still had to figure out Gracies feeding plan.
Gracie was still on skimmed breastmilk fortified. I googled and googled how to centrifuge one at home and the best answer I came up with included long tube socks and a laundry machine. So that was simply not going to work, which meant that we would be in the hospital until she could tolerate full-fat breast milk.
By this time my milk supply had dropped significantly and I was going my best to keep pumping. I was very fortunate to have so much milk in the freezer but even that was dwindling! So yet again I hit up google. I found cookies, milkshakes, protein powders; you name it...I read about it.
I decided on a protein shake which was double the price for 1/2 the size of a normal protein I would have purchased and I hoped it was going to taste good. IT WAS HORRIBLE. But the reviews swore by it so here I was adding strawberries, bananas, and peaches and blending it all together. I sucked them down the best I could!
I have to be honest I wasn't as regimented as I could have been on drinking them and that could be part of the reason it didn't seem to make a difference. I mean, after all, I was a twin mom and a mom to a medically complex baby. That was always my true focus. Paisley was still breastfeeding at night time so I am sure that took away from some pumped milk Gracie could have used. Nonetheless, we made it with just my milk at this point!
One morning after hauling in Paisley and our diaper bag full of snacks, drinks, purees, and yogurt melts I was told that Gracie's last chest tube had fallen out.
"Come again?!"
This wasn't remotely possible as we were all VERY careful. Everyone except ONE person. OUR FREAKING NURSE!!!!
My husband, after I had informed him what had happened told me that the day before when he was there with Gracie this particular nurse went to pick her up while her chest tube was clipped TO THE FREAKING BED!! Luckily he unclipped it just in the nick of time to stop it from getting pulled.
So let's backtrack for a second. Remember when I told you all about watching my child get her chest tube sewn back into her skin in order to stop it from falling out or moving too much? YEAH, THAT WAS THE WORST THING I HAVE WITNESSED TO DATE THAT GRACIE WENT THROUGH WHILE AWAKE!!!
The last flipping thing I wanted my child to go through was this AGAIN due to someone being so careless! So once I knew these fun facts and that her chest tube "magically fell out" while THAT NURSE was taking care of her, I fired her ass. The funniest part of all of this was I was not going to make it a big scene. I simply went to the charge nurse and told her I was not comfortable with her caring for my child.
Then the charge nurse told her. WHO DOES THAT?! Sadly, this is not the first, second, or even the third time this particular nurse was fired by a parent. The takeaway from this side story: ALWAYS and I mean ALWAYS advocate for your child!! This could have caused significant fluid back up into Gracie's lungs which that in itself could've caused a whole slew of issues!
So on December 29th Gracie no longer had any chest tubes. They put gauze over the area to soak up anything that did come out and eventually it just stopped! She was 100% my Gracie again and didn't want to take her eyes off of her momma!
By January 4th Her incision was healing very well and we were very well on our way to getting back home together! She got off her octreotide, and no more dex to help with being NPO (not fed). All Enteral medications now instead of IV and most importantly she’s finally being fed again!! She was previously on IV nutrition. We were hoping to have her home by that weekend or the next!
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