Moving In a Positive Direction
Gracie was slowly coming out of the delusional state she was in, had all of her chest tubes still in place BUT at least I could hold my girl. By April 23rd I knew that we were not going to be making it home by Christmas and this meant on my twin babies' first Christmas I had to choose who I would wake up to on Christmas morning.
This thought alone was breaking my heart. How many parents that are married have to choose between their children on Christmas day?! My guess is not very many! The positive part was that we were getting closer to Grace coming home. She had two of her chest tubes removed with just one remaining. This meant that we could leave the hospital room and get some good walks around the unit!
I was of course still bringing Paisley in with me each day so I always needed a little bit of help to walk around the floor. Luckily for me Gracies physical therapist always loved to spend time with us. Holly was/is the best physical therapist HANDS DOWN and we still keep in touch to this day. We got ready to go for our walk and the charge nurse came in and said even the babies needed to wear masks now on outside of their hospital rooms.
Have you ever tried to put a mask on an 8-month-old baby?! Yeah, it is just not going to happen! I laughed as both Gracie and Paisley proceeded to rip the masks off of their faces. Gracie's chest tube was clipped to her onesie and Holly held her and the container her chest tube was draining into. I had Paisley and off we went!
I knew it was so important for the girls to see stuff outside of the hospital room after all Grace had spent the majority of her life in there and Paisley just about had too!
Something I forgot to mention was after her procedure she ended up with a big bedsore on the back of her head/neck. We aren't quite sure how as she was not in surgery all day but it may have just been from how she was laying on the table. We had to be very careful with it and be sure it was healing properly. This was again, significantly difficult with a child that was constantly on her back if I was not in there holding her up or PT was in working with her.
On top of that, her head was extremely flat. It was getting much better since she was home with us and we were hoping that it would continue to improve. She also had a very lazy eye. This generally happens from being sedated so much. Again, this was something that may or may not resolve on its own. So for now we were just going to watch it.
Before I knew it... it was December 24th and I had to make that decision no parent wants to make. Between my husband and I, we decided that I would stay with Gracie, and he would be with Paisley. I know that this may seem like a no-brainer but we both were really struggling with this decision. Tim and Paisley planned to come to the hospital the next morning so we could spend time together as a family.
That night they had Gracie still on a lot of the medicine dex. This was a sedative due to her having a chest tube still. I told them I didn't want her to be sedated all of Christmas so I wanted them to wean her off of it. Well... That was a bad decision. In fact, it was a very selfish decision on my part. She didn't really sleep ALL night, which meant nor did I because I was trying to comfort her. By 2 AM I looked at the night nurse and told him...
"Just get her the dex!!!"
These decisions are so hard for us as parents. We want to celebrate the times we can together as a family but sometimes it just doesn't work like that. You have to stop and think...
"Is this best for my child?! Or is this just what I WANT?!"
I ALWAYS wanted what was best for Gracie, ALWAYS. That was never a question, sometimes I just didn't know exactly what the right thing was!
Christmas morning arrived and I was dead tired. I got up and curled my hair to look semi-presentable because I'll be DAMN if we do not get at least one Christmas picture together in our matching pajamas. I bought us matching elf pajamas, and honestly, I was not sure if my husband would follow through. To my surprise, he walked through those hospital doors in his elf pajamas after walking through the ENTIRE hospital in them. HUSBAND AND DADDY OF THE YEAR!!
They say that it is the little things in life and it truly is. This made me so happy. Something so dang stupid. But it made my Christmas morning that much better other than having our sweet girls together with us. Gracie couldn't wear her outfit due to all of her lines and her chest tube so I supplemented with elf slippers and a cute Christmas dress!
Once my husband and Paisley left to get home to our dogs I decided I would order the "Christmas dinner special" and take a nap since Gracie was out cold already. While it was not our best holiday it was how we could spend it and at the end of the day, all I wanted was for all of us to be together, no matter WHERE we were.
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