I’m sitting in the NICU as I write this post. Mary is in the chair next to me taking a long overdue nap under my hoodie. It’s been an extreme lack of sleep all week for both of us, especially the past two days. It’s my first night back here since Monday evening. My work schedule didn’t really allow me the time to get into the NICU. The feeling of emptiness in my heart lingered with me all week, but I was grateful to be working, and at ease with crew I was with.
Tuesday morning started off as a tough one. Our little buddy Jake, my cat of eleven years was not doing well the previous two days and it was noticeable. He had been struggling with heart and liver disease for almost two years, but never really experienced any extreme pain. My parents took him to the vet, while Mary was at the NICU, and I was working. The news was short and sad. Jake never made it back home. He was in pain and had to be put down. We knew this was coming eventually, but it was more sudden than we hoped for, and it hurt like hell, especially since we we weren’t with him in his final moments on earth. I saw him for a couple of hours on Monday evening before my visit at the hospital and gave him some of my pork chops, one of his favorite dishes, and he fell asleep purring in bed with Mary later that night. I haven’t been home yet, but I can feel the void, knowing he is no longer with us. I’m actually going to miss him trying to eat our dinner every night.
Meanwhile, Remy was not having the greatest day Tuesday. Things remained a puzzle. Mary arrived early to be there for her biopsy, but it was postponed until Wednesday. Remy was still struggling to get anything out and still unable to take any feeds. Mary kangarooed with Remy and felt her experiencing heavy twitching once again. The next day Remy had her biopsy, which went without a hitch. We are awaiting the results. Later that day she would be put back on EEG for the second time. Unfortunately, it confirmed she was experiencing seizures. Fortunately, they were not nearly as frequent this time.
With respect to so many details during the past three days, which I could write several posts about, I am skipping over them to get up to speed Remy’s current condition. As of this morning Remy is in critical condition. She has an infection, and is very sick. She is intubated and being administered nitric oxide. The intubator is giving her constant puffs of air through her lungs, 420 per minute to be exact. The EEG is running and another machine is keeping oxygen in her lungs while releasing carbon dioxide from her lungs, at a rapid rate. Her heart rate is extremely high, steadily between 200 -220 per minute. Her blood pressure is extremely low (her maps are about 14 and we need them to reach at least 32, 33 before we can let out a sigh of relief). One of the biggest goals, right now is to get her blood pressure up. Just to paint a small piece of the picture, when I was last here on Monday night, there were nine open outlets behind her incubator. Not one is open at the moment.
Remy is on just about every and any antibiotic that she can possibly be on. I do mean that literally. She is getting blood drawn in order test her blood gases every two hours. She has I.V.’s in all but one limb. She has an A-line in her left arm, which just a few hours ago was in her right arm, and several drip lines entering the I.V.s in her feet. She is being administered fluids such as Dopemine, Epinephrine, Phenobarb, Keppra, caffeine, sugar, fats, electrolytes and more. She has leeds covering her head, two tubes down her throat. One is breathing for her, and the other suctioning out bile. She has a catheter, an oxygen monitor on her foot, four monitors on her chest and a pad covering her eyes from the light.
It is medical technology at its best and Mommy and Daddy’s worst nightmare all at once. It’s an experience that Remy is clearly uncomfortable going through. She looks as if she is in a coma, for the most part. She is not, thankfully! The small occasional grunts, slight hand grips and toes curls on our finger show signs of strength. Her white blood cell count is down and she is slightly nuetropenic. Over the last few hours she is showing signs of improvement. The NICU nurses and doctors are working very hard. I cannot express enough how grateful we are for them! Lillian, a frequent nurse of Remy’s, has been with her for four nights straight and has been taking such good care of Remy, and us for that matter. She is our superhero this week!
This is a tough day! The toughest day we have faced yet. While willingly and gratefully going back to work, getting back here to be with my girls could not have come soon enough. I did not expect it would be in this state. We are with Remy and by her side. We talk to her softly and tell her to keep fighting hard and keep getting pissed off when a needle pricks her. We are scared, and upset for the pain out baby is experiencing. Who knows how much we’ll sleep tonight but who cares. We just hope she continues to improve through the evening. This is not an easy experience by any means, but we know our baby will fight!
Rather than show pictures of what she looks like now, I wanted to post a cute video of her, please check out this video from last week of sticking her tongue out and making us laugh.