Thursday, started off like most days, we were excited to visit with our little girl and couldn’t wait to see her. The day started off well. When we arrived in the morning, we were told everything was status quo, but that Remy was getting a little backed up again. To our surprise, our nurse administered Mary’s milk, which we were really hoping would stick this time around. The day was uneventful ,and that was a good thing. That’s what we wanted. The best part of the day….. I got to kangaroo! Unfortunately she did not tolerate the milk. This was a disappointment, especially with Mary working so hard 8 times a day, hoping to help her baby. Remy only lasted about two or three hours before they realized she was not tolerating it.
Friday Morning, Mom Z. was with us for a full day visit and a sleep-over. The day started well. Though, Remy was backed up, the doctors were growing concerned again. We also learned that Remy most likely has preemie apnea, adding to her breathing difficulties. They started Remy on Neocate, a baby formula highly concentrated with amino’s and proteins. She was on the normal .5 cc’s (barely more than a drop) per hour. by mid-afternoon Mary got to kangaroo. It only lasted 20 minutes. Remy started to experience repetitive twitching again. They were pretty intense, so naturally we became concerned. We alerted the nurses, and they had to remove her from Mary, and attend to her issues. They checked her phenobarb levels, which took about 2 hours, and decided to raise them from 29.5-35. The twitches stopped. We cannot be sure whether or not they were seizures. We do know that they looked very similar to what we witnessed early on, leading to the EEG, which confirmed frequent seizures at the time. With no EEG monitoring her brainwaves, this is something that can be missed, and it is a constant worry.
Here is how the Phenobarbital works. There is a therapeutic level in everyone’s blood. The Phenobarb helps to control that therapeutic levels, in turn regulating, and hopefully eliminating the seizures altogether. I don’t know what Remy’s natural therapeutic levels are supposed to be, but prior to Friday, they had them between 24 to 30. On Friday, when she had the twitching she was at 29.5, and as I mentioned, the dosage was raised to 35. Here is the downside. It has a sedative in it, a barbiturate. The higher the dosage, the more sedated Remy becomes. This lowers the activity in her brain. She is does not move around as much as she did prior to the taking the Phenonbarb, and it’s definitely noticeable to us. She has to be put back on the very uncomfortable and obtrusive SIPAP after becoming quite comfortable with a nasal cannula, which is much less obtrusive, and cycling with a CPAP. With heavy sedation, Remy forgets to breathe and needs the extra help. Something you or I would not think is possible to do, but is different in preemies. Mary and I know this is the best way to treat it. We are happy that the seizures are being stopped. Our concern is that during a time where it is essential for a preemie to grow and build strength that this will slow her down. It’s that double-edged sword our poor Remy has to face each day.
It’s always a a gift to be with our Remy, and we grow more in love by the minute! At the same time, this past weekend was extremely tough! The doctors are still trying to figure out what is going on with Remy, and why she is having problems with feeds. Each and every time the doctors try to start her on feeds again, her stomach distends and she can’t poop, so they stop the feeds and continue to nourish her through I.V.s. giving her fat, nutrition, and caffeine; to compensate for the sedative.
Saturday was especially tough for me. Remy’s stomach was very distended. They had the to stop the Neocate. She could handle it. The doctors are puzzled. Starting Sunday I’m scheduled to begin working on a new reality show, which puts me in a hotel in Long Island for six days. After 26 straight days at the hospital, it is killing me inside that I will not be spending everyday with Remy. That’s life, we have to work. I’m no exception to the rule, but my God, the second I got in that elevator Saturday, I lost it! Sunglasses covering my face, it was still obvious as tears ran the tears ran down my face. I had to leave early to get things together at home. Later when Mary came home she told me about a new preemie she witnessed coming into the NICU. Mary said she was the smallest thing she has ever seen, much smaller than Remy, and just watching the way the nurses and the doctors work there was astounding! Things like that, make us feel that Remy is safe when we are not there. She is definitely in the best hands.
Sunday came and went. My first day back at work was tough. I was with a great crew, and that made it easier. I have a new purpose in life, and its easy for me to channel that, and appreciate working even more than ever before. Mom T. also arrived to our home on Sunday from Virginia. She has been amazing through all of this, and brought us a ton of goodies! She’s spending the week with Mary, while I am gone, and she was so excited to see her granddaughter! After attending our close friend’s baby shower (which was difficult for obvious reasons) Mary met up with her mom and went to see Remy until the 8:00 p.m. shift change.
During that visit Mary and Mom T. learned that Remy’s condition had become a lot more concerning. There are a few conditions that the doctors suspect she may have. Often, it is a guessing game at the NICU, and Remy has to be checked out or tested to rule things out. She had multiple x-rays in hope to rule out Necrotizing Enterocolitis (NEC) which is an inflammatory bowel disease. It is also suspected she may have Hirschsprungs, which is basically failure to develop a normal nerve network in the colon. Either would require invasive surgery, but both are also considered “routine” in the NICU. While of course we hope she doesn’t have either, we certainly want to know what is going on, and what the possible solutions could be for her.
Monday, Mary and Mom T. spent the entire day with Remy, but weren’t able to kangaroo because she needed another blood transfusion. There were really no major changes. While we want uneventful days, we now need changes, and they are not happening! Tomorrow Remy is scheduled for a biopsy, to confirm or hopefully rule out Hirschsprungs, and Cystic Fibrosis. NEC is not looking likely, but is not completely off the table. Today was probably the earliest wrap I will have all week. So, I raced home to spend a few hours with my little girl. I saw Mary and my mother-in-law briefly. I got some paperwork done. I shared some hugs, kisses and tears, and got to the hospital around 9:15.
I held my little girl for about two hours. It makes everything go away for a little while. She makes these little sounds and these little moves. I’m in heaven when this happens. I’m so in love! She is chubbier, and I love it. What a difference a day makes. Still…. she is apparently uncomfortable. I can notice it right away. I’m back at my hotel it’s about 2:00 am and I’m hoping to get some sleep and a good breakfast at about 7 am. I’ll be thinking about my girls every second! I hope today brings good things for them!