Remy’s progress halted since my last post. Almost immediately after I posted very early Wednesday morning, on my way to work, she went downhill. Her MAP’s (average blood pressure at rest) dropped. Her SAT’s (saturation levels, better known the oxygen in your blood) dropped. Her heart rate went up. It’s like she has this thing against Daddy going to work. Remy went into septic shock and had to have a chest tube put in to suction out the fluid taking over the chest cavity around her lung area. What did this mean? How sick was she? It was all very confusing and overwhelming. We’d just have to wait and see, watch her suffer and hope she gets better.
Thursday was not what we hoped for! Mary arrived to the NICU to see Remy’s area screened off, while the attending neonatal doctor performing yet another adjustment of Remy’s chest tube. It was definitely doing its job, but had to be moved around constantly, which was not good for Remy. Mary texted me a few times throughout the day. I got caught up during breaks and lunch. The news was pretty frightening, even though she sugar-coated it for me, as not to scare me. Remy had contracted pneumonia. Her right lung collapsed and her kidneys were still not functioning properly (renal failure). The doctors and nurses at the NICU spent all day working on Remy, checking on her, fixing the chest tube. Placing a chest tube in the right place in a three-pound baby is not easy. It takes a lot of adjusting. After two long days working in the field, I got to the NICU as soon as I could to be with my girls. When I got there I could see in Mary’s face that she was very distressed and had not slept in a while. She was not well, physically or mentally. We slept on and off by Remy’s side all night, hoping for her to just stay stable.
Friday, mid-afternoon, once again we were waiting for her to pee, as patiently as we could. It’s a hard thing to get a baby to pee under these circumstances. She’s on heavy doses of Dopamine to raise her blood pressure, which makes it much more difficult for her to pee. To counteract she has been getting doses of Lasix and Bumex to get her to pee. It’s a snowball effect. You just have to wait and celebrate at the first sign of yellow liquid. I headed home for a couple of hours after a rare sit down lunch with Mary to shower and take care of a few things. I squeezed in a 45-minute power nap at home.
This was a rough day! You think you have put the roughest days behind you and hope for the best, but that is not the case for us right now. Her condition is not easy to absorb. Remy did show some improvements throughout the day, concerning her right lung. Her lung was fully collapsed on Thursday and early morning x-rays showed her lung about two-thirds expanded. That was a major improvement! Still, there was a lot of air outside of the lung, and there is fluid infected with bacteria around her lungs. Those are both are very dangerous things. The main focus to get Remy better was based on three factors (there are several more, but these took priority); (1) keep her MAP’s up, (2) get the lung to inflate by releasing the fluids causing it to collapse, and (3) for heaven’s sake make our baby pee!
Later yesterday evening our baby showed big signs of improvement. Her MAP’s reached a new record high of ‘58’ in her 37th day of life. To put in it perspective, the target rate was 35. She was beginning to pee after a catheter was inserted once again. Her saturation levels were reaching somewhere around 95%. They don’t get any better than 100%, so this is a good thing. She was stabilizing! We had something to be happy about at the end of the day. Mary and I went home to try and get some sleep after getting the good news.
Today has not been easy. She has gripped our fingers a bit and showed signs of strength, but she is not in great shape at all. She is swollen everywhere! Her eyes lids are so swollen and look deformed. She looks as if she was beaten up in a gang fight. Her skin is full of bruises, cuts, scrapes, blisters, needle marks, you name it, and she has it. Our little lady is being kept alive by a high frequency oscillator, which breathes for her. Instead of helping her like a SIPAP or a CPAP, it keeps the lungs constantly open and takes over 300 breaths a minute. She is getting a ton of fluids through multiple I.V.’s and receiving all of her antibiotics and nutrition through her picc-line. She is still getting the maximum doses of Dopamine for her blood pressure and high doses of Lasix to help her pee. Her antibiotics have changed. She is still on Vancomysin, but off the Zosen and Cetaphax and now on Maxipime and Clyndamysin. And this list doesn’t even begin to tell you all of the things she has been on this week.
Early this morning, the tube in her lungs needed to be adjusted for the seventh time in two days and she about to get an additional tube. She is so filled with fluids and her skin is so sensitive that everyone has to be extra, extra careful when she is touched. She was just administered steroids and FFP (Fresh Frozen Plasma). The current focus is to try and get her fluids out, get her blood pressure up and get her blood vessels to start absorbing the fluids. I mean really, there are multiple efforts and objectives, and it’s hard to explain without going through it, but it’s impossible to cover everything equally. The medications she requires, while helping, also interfere with and slow down other necessary functions. It is a constant challenge trying to figure out what is best for our little lady, and there is no challenge greater than trying to preserve one’s life! The approach can literally change every hour based on dosages, medications, care, positioning.
Remy is strong! She has proved that, and if she stay’s strong she will beat the pneumonia. Her lung will re-inflate completely and her kidney function will return to normal. That is what are hoping for and all we will continue to hope for until it happens. I’m so mentally exhausted I can’t write anymore. We love you all, and Remy appreciates your support, we know she will triumph, but we are starting to notice the soles of our boots wearing down with a long trail still to climb.
These pics may be tough look at.