It’s Sunday Afternoon and Mary and Mom T. (who was in town for 36 hours, and such a big help) just went out for a rare outdoor excursion to pick up a few needed items. It’s been an emotional day for me. After working long days this past week I made sure to visit when possible. My last visit ended early. Mary and I had to leave early to try and get our home somewhat back in order, and thankfully my parents came over to help us. I’m tired, but full of excitement. Knowing I will work long days all week except Wednesday it is great to be here, but sad knowing I’ll be absent through some of Remy’s stay in the NICU. I have sudden bursts of pride about Remy and then tears of happiness and hurt. I feel as if it’s been a non-stop ride of energy for so long, that no matter what the emotion, or no matter what I am feeling, today is one of those days it is just surfacing. That is the best way to explain it.
Our little lady has had her ups and downs these past 48 hours. Since my last post we have continued to see her progress. Without getting into all of the details about her meds and conditions, Remy’s charts showed slow but steady improvements in her areas of focus. Also while at a slower pace, she still continued to pee. Her water weight continues to decrease, but she is not letting go in great proportions and has to receive extra amounts of fluid to increase flow in her blood vessels. She makes sure that we all are paying close attention to detail. The slightest adjustment can make a big difference with her vitals. Remy keeps us all on our toes.
Yesterday while I was at work, Mary watched Remy experience more seizures. It’s difficult for us to watch. I mean, really, it’s a difficult thing for anyone to watch., but even more so since neurology can only try to manage them rather than get to the bottom of them just yet. The seizures are an issue that cannot be approached like any of her other conditions and seeing that she has retained so much water weight as a result of the Pneumonia and renal failure, it becomes even more difficult. There is no way to confirm technically that they were seizures without the EEG attached to her, but unfortunately from what we have witnessed, we know the textbook signs. A video EEG was attached to Remy last night to monitor her movements and brain activity and removed this morning. The problem is that she has so much fluid in her body, including her head, that the leeds cannot decipher any data from her brain.
Remy’s last seizures were witnessed by Mary and I almost until right before we left this evening, a little after 8 pm. She has been given increased doses of Phenobarb and put back on Keppra, a drug she was previously taken off of two days ago. Additionally, she is on Ativan, an anti-anxiety med that is being administered to help regulate her brain activity. The focus on her seizures cannot and will not take priority over other issues until she improves. She cannot undergo an MRI yet, which is needed to get more detailed results.
There are several positives for us to hone in on since my last post.. Remy opened her eyes briefly this week. Her nurse Lilly (officially anointed Aunt Lilly) sent us a photo at 7am of Remy with her eyes open this morning . Mary and I were able to hold her for a bit at different times while helping the nurses and doctors with various things.. It may not seem like a whole lot, but wow, it’s a moment that will definitely carry a glow inside of me this entire week while I am at work. For the most part, Remy is ‘knocked out’ from the drugs and remains in “limbo.”
Another setback we discovered yesterday was that her left lung had collapsed. While this is not as serious as what happened to her right lung and she does not need a chest tube, she needs to be watched closely. The right lung has been in great shape for the past few days. In fact, the chest tube which has been draining air and fluids from outside of her lung was clamped and may even be removed tomorrow! We have so many reasons to be sad and broken down. However, we have many more reasons to remain hopeful and grateful. Don’t get me wrong, we both have our moments. We are parents, and we’ll be damned if we don’t persevere and demonstrate all of the strength that we have within us! Remy relies on us and has shown us so much strength on her own! We also remain grateful to all of those who continue to support us, pray for us, and send us your love and positivity in whatever form you have.
Lastly, I wanted to dedicate this post to my Awesome wife, Mary. It’s an understatement to say how she has been the most amazing mother I have ever seen! She kisses Remy every moment she gets and giggles while she ‘eats her face.’ She has been at the NICU everyday and with Remy every step of the way. Mary has been freezing so much milk that we have started to store it at my parents! She sings, reads, and stands over Remy’s incubator all day long. I try to massage her shoulders and even my slightest touch hurts because physically she is so fragile, yet inside she is so strong. She is a supermom and my superhero and whether Mary knows it or not, Remy certainly knows who her Mom is.