It’s Monday morning. My mother left this morning to spend today with my brother Johnny. She spent the day with Mary and I yesterday, took us out to dinner, and then spent the night. As always, it was great having her around all day at the NICU. She’s been a tremendous help, and she has a constant gleam in her eyes, now that she’s a grandma. Since my last post Remy is doing much better. We all went to bed happy last night and actually slept in kind of late this morning.
Friday morning we arrived to the NICU around 10am. Doctor Wachtel informed us that Remy did indeed have another seizure. They decided to up her dosage of Phenobarbital. Mary’s face was flush, and filled with fear and concern. She kept telling me how much her heart hurt. So did mine. It was stressful, but I knew the doctors were doing the best they could. My way of trying to rationalize this to myself, and calm Mary, was that we would be crazy to think after experiencing frequent seizures that they would just stop cold turkey. After all, that was the truth.
Still, this was the hardest day yet for my love, Mary. Just over two weeks ago she had to go through an emergency delivery, after being told she could die. She went through extreme trauma with a multitude of emotions, whacked hormones, extreme pain, and now her baby who should still be growing inside of her, knows life only through multiple machines. Additionally, Remy has been through a lot of stress. There is definitely an emotional attachment and a void that Mary wishes she could provide.
That said, Mary was not in good shape. I was extremely worried about her. I had not seen her this upset, and just did the best I could to be there for her. The good news was that Remy did not have any seizures throughout the remainder of that day. You could tell that she was uncomfortable. She looked exhausted, she was still twitching, and she was unable to kangaroo. Remy needed her rest and at that point anything we did would have disturbed her. We decided it was best to leave a few hours earlier than usual.
When we got home at 7:00pm, Mary was out like a light. She still got up to pump every 3 hours, but she pretty much did it while sleeping. She needed that rest, and Saturday morning she was feeling a bit more refreshed. Remy had not experienced any seizures through Saturday. She was improving rapidly in all aspects, and looking better all around. Suddenly, she had cute little cheeks.
I was juggling work and visiting Remy. Mary got to kangaroo her and was all smiles. Like I have said before, I’m so proud of how Mary has handled everything. She feels everything her daughter is going through, and as I do, she wants to take all of this away from Remy and absorb it herself. Mary’s actions everyday are a true testament to what a great mother she is.
Upon arrival yesterday we noticed that the EEG monitor had been taken off! Yes! Remy had gone over 48 hours without any seizures. Still, I felt a void for not being next to her when everything came off. I wasn’t there to hold her hand and talk to her, in case she squirmed or cried while they removed the leeds that were glued onto her head. Regardless, we were both ecstatic to see these gone. On the other hand, we still worry that she could have additional seizures that will go unnoticed without it. Remy’s situation comes with many double-edged swords. “Trust the doctors, trust the doctors, but always question,” is what I always think to myself. I want to believe they know what is in the best interest (and they do…), but I want to know everything (as I should.)
Mary and I fall more in love everyday with Remy and with each other. This experience is testing us, but for the better. We continue to get support from so many of you in so many different ways. We still tear up every time we read your comments, posts, emails, letters, and texts (Jeez Alejandro!). We are immensely grateful for every drop of support. Mary, Remy, and I have our gloves laced up, ready to take on whatever comes next, but are hoping for a great week, so we don’t have to use them. Remy is tiny, but she is tough, and she keeps proving that. As always, we remain happy and glowing about our little girl, Remy. She is our biggest gift in Life! Being a dad is easily the coolest thing ever, despite all the tough times we have had.
Check out the funny pic of Remy kangarooing and taking a nap with Dad. Like father like daughter!