Remy has had her ups and downs since my last post. Her blood gases have been very good. Her SAT’s (oxygen levels) were high, which is positive. Her MAP’s (blood pressure) have been up, another positive. Her heart rate has been normal for a preemie, in the 160’s. Additionally, she has been peeing like crazy! Because of her good vitals, the doctors have been weaning Remy off of her meds. Because of this, and the peeing, her swelling went down a little bit. Lastly, her oscillator today was down to 45% down from 100%. A giant sigh of relief. She was still in very critical condition, but progress is what we want each day and Remy we were getting it!
On Monday afternoon these trends continued for most of the day. With that said, Remy had to get her chest tube either moved or replaced 4 times throughout the day. Mary was getting frustrated that this was done so often, and so was our amazing nurse, Claudia, who has been our day nurse for the past few weeks. Aside from the great trust and respect we have for all the staff here; there is so much to be said for the nurses. Besides Mary and I, they spend more time with Remy than any one else. Mary and I are completely at ease with Claudia. She is a tough love kind of woman, no bullshit, and very committed. Everyone has his or her own approach, and Claudia is not afraid to put anyone in line, including us. She also has a soft side that we’ve gotten to know pretty well by being around her so much. Most importantly, she takes care of our girl like an injured soldier in battle. Another example of the NYC-NICU “great humanity” that is well worth sharing.
Back to our Remy, she needed to get rid of the air and fluids that have been collapsing her lungs. It’s not to say that the doctors were doing anything wrong, but just a matter of enough is enough! Our little girl was going through too much to begin with, so it had to be right this time. During the fourth chest tube-changing procedure the doctor wore a lead coat. They did an x-ray to make sure the tube was in the most optimal spot. Normally the doctors will insert the chest tube, stitch her, bandage her, do an x-ray, decide if it’s in the right place, and adjust as needed. To save Remy distress this time, the x-ray was done prior to the cleanup and adjustments. She really is tough.
Remy has been on breathing assistance for quite some time now, and being on high frequency machines is not good for her long-term health. Since she has one damaged lung and one hyper-inflated lung, the more time she spends on the oscillator, the more likely the good lung is to collapse. In a perfect world, Remy will gradually step down from one machine to the next, each time on lower settings, until she is breathing on her own (which will take a lot of time.) Shortly after the fourth surgery of the day they attempted to wean her from the oscillator to the jet (another high frequency machine.) It did not work out as the doctors anticipated. She kept trying to breathe over the machine, which in some instances is promising, but this was a bad sign. She did not tolerate it. She experienced something called respiratory acidosis. At this point all her vitals went in the wrong direction. Everything Remy had done to get to this transition point went downhill. She was put back on the oscillator, but on higher settings this time and had to work all night and into the morning to get back to where she was before the transition. Our girl just went through in a day what so many don’t even experience in a lifetime. This was so tough for Mary to see, and so difficult for me to be away from.
Mary and I understand that things like this have to happen in order for her to progress. We can’t just leave her on a breathing machine forever, scared to transition her in case she doesn’t tolerate it. God knows this is the last thing we want. I just wish she could have one freaking bit of good luck. It seems like she is getting the short end of the stick in every situation. I just want my little girl to make progress. I’m not asking for it to be fast, but I am asking for it. Mary and I are still very optimistic and still very amazed by our little trooper’s great strength! What is most important to us is that Remy gets healthy, quickly.
She remains a puzzle in many respects, and has to be handled with caution. It is important that we be there to guide, listen, answer questions, and let our little girl know that we are and always will be there for her. We are her advocates and we must speak our mind. We continue to be thankful for the great staff, get angry when appropriate, and ask tons of questions. We educate ourselves as much as possible. We befriend and earn our staff’s trust and make sure they do the same with us. As a family we do our best to be there for each other, and try to comfort and tame one another when we clash, or feel different emotions. It is a test in so many ways that all comes down to one thing………..Remy.
Tuesday afternoon was Mary’s birthday. It was different from any other birthday she ever experienced. The best part was that she felt the love from everywhere. Unfortunately, I could not spend the day with her. Wednesday was the first day I was able to see Remy since Sunday, and it has been extremely trying! After a full demo of the room in our house that used to be known as the “ice-box,” I discovered I am no match for dust. We are having it insulated, as it will be Remy’s room. The lack of sleep, stress, and dust caught me off guard and knocked me out. I’m not sure what I caught, but it got me sick. When you catch a cold and your baby is in the NICU you just don’t go in. I quarantined myself from the house and wore a facemask for the past three days. I washed everything in the bedroom and cleaned the sheets and blankets with gloves on! I kept my distance from Mary, sleeping on the couch and staying at our close friends Rudy and Lynda’s place. I kept to the ‘no contact’ rule with Mary and drank tea like a maniac. Fortunately, I was able to get antibiotics just to be extra safe and I’m feeling much better. Knowing I could not come in, I stopped in for a quick haircut and my Russian barber Sergio, who offered me his usual shot of vodka, which I declined, gave me free hair gel and some shampoo and conditioner for Mary for her birthday.
Getting up to speed, Remy can’t pee…again. The doctors say that her kidney functions do not look different from yesterday, when she was peeing, so we don’t know why it suddenly stopped. The mission is to get Remy to pee again. She is now receiving more fluids without potassium and she is likely become super swollen again. This is in effort for her blood vessels to take in the fluid and for her kidneys to function properly again.
At 4:00 pm Wednesday, Remy was being weaned off of the oscillator and the nitrous oxide machines. She started at 100% oxygen and 20 ppm (parts per million) of Nitrous and then was 45 % oxygen and was down to 15ppm of Nitrous.
At 7:00 pm Wednesday, she changed for the worse. She is back up and her Dopamine levels are at maximum levels. It’s just a small example of what Remy is going through. It changes so quickly. When quick changes happen, it is usually for the worse. Progression happens over time. It takes hard work and effort to move forward and build something, but it’s easy to have sudden setbacks. The difference here is the dire consequence in Remy’s case. The staff is working hard to get her down to 21% oxygen (what we breathe in room air) and down to 0ppm of Nitrous, decreasing by 5 every day until we get to 5, then decreasing by 1, for a total of 8 more days…God willing. Should this happen, and when it happens because it just has to, it has to, she will continue to stay intubated at 21% oxygen, and this would be a great thing. Higher levels of oxygen are not good for anyone, especially babies. For now though we are not making the progress we desperately need.
There is a common expression most everyone has heard, “Nothing in life can prepare you for something like this.” I can understand that perspective, and I have great respect for it. However, I take the opposite stance. I say “everything in life has prepared me for this!” Nothing matters more right now. When I look in my daughter’s eyes, when I close my eyes and think about her, and when I look at my wife. When I realize that even though Mary and I are not anywhere near qualified to treat our baby as these miracle workers do, any inkling of influence that we have, small or large, is meaningful. Our experiences from the past now serve as lessons for life now. I’m not saying this is easy by any means, nor do I know what is coming day-to-day. I’m just saying that while I know I’m not Superman and have little influence over Remy’s outcome, life has prepared me in every way to dig deeper and do my best for my daughter, my wife, and myself. I don’t know what today will bring. I know that yesterday was the hardest day we have faced. Ever.
Friends, family, followers, those of you that have stumbled upon my blog and support us, if you sense a feeling of ups and downs in this post, that is exactly what we are feeling. Today has easily been the hardest day we have faced. Remy is very sick. Contrary to great strides over the past eight days, she keeps going backwards a few steps. Many of the consequences can be dire. We are at a scary point right now. The doctors and nurses have made it no secret how serious this is. Our Remy is in danger of serious underlying consequence. I ask that you continue your prayers and positive energy. We continue to feel your love everyday and we promise to transfer it to our baby Remy!