What a few weeks it has been! We have as usual experienced our fair share of ups and downs. Still the greatest news we could have hoped for is that the MRI which took place last Tuesday showed no signs of brain damage. As a far as neurology can see the brain looks to be completely functional and in good health. Our doctors, nurses, residents and so on were very surprised to see this. With all the trauma that Remy has experienced, the chances that the MRI would show something horrible were very likely. After hearing the news Mary and I were filled with emotion throughout the day not knowing what was coming at any given moment, tears, laughter, deep breaths and so on. There were some significant blood clots discovered in the sinus cavity, which is a vein between the brain and the skull. While these clots can be of extreme risk to Remy’s health, recent ultrasounds have suggested that they are decreasing and dissipating on their own. Metabolic blood samples have also been sent in for further review to make sure that there is nothing missed concerning the clots.
Following the MRI for the next couple of days Remy was doing very well. Every day since she has opened her eyes at times throughout the day. Looking into her eyes, I describe it like being a six-year-old in Disney World. No matter how many times I look at her I am always in awe and so in love! It is ridiculous how amazing it feels to lock eyes with our little girl. It literally sends chill down our spines.
On the other edge of the sword there are certainly concerns. Doctors cannot assure us that her brain is and has not been affected from all that Remy has experienced. It is possible that the growth of her brain has not developed as quickly as it should be is still a great concern. This is something we may not notice until years from now. There are still many unanswered questions we approach each and every day.
Remy has continued her terrible habits. Seizures! Mary and I have grown a great fear and hatred for the ‘seizure’. While we have had some great moments over the past week our baby has gone through some long days and nights of severe seizure activity. They have been frequent and extremely concerning! We never know when they are coming. We never know how long they will last. We never know how severe they are. Any neonatal experiencing such frequent seizures is exposed to great risks. Those risks can be life threatening or can result in mental retardation, cerebral palsy, long-term epilepsy and more. Not only are we so concerned about the long-term and short-term effects, but it is evident that each time Remy experiences these horrible seizes she is set back greatly. Her progress halts. In fact she goes backwards. We have noticed the correlation in everything she does. Her edema usually increases quickly, which is something that takes a long time to reverse the effect. She appears less active. Her overall health without going into detail, takes several steps backward. Think of it this way. A storm hits your area, forget the severity for a moment. Consider trees are down, structures are damaged pipes are broken. Consider that this all happened in a short time over say an hour. Now think of how long it takes to repair clean up and bring back to a the state everything was before the storm. The damage happens quickly. The rebuilding takes time.
In a nutshell here’s what is going on and needs to happen right now. Remy has seizures so we need to keep close tabs on her Phenobarbitol dosage which control her therapuetic levels. If it stays between 45 and 60, we feel comfortable that she won’t have any breakthrough seizures. She HAS to lose fluid. Not only is she swollen on the outside, but on the inside too. She needs to get back to a normal size in order for her intestines to be a normal size to have hope that they will begin to work correctly. We still need to rule out that she doesn’t have a malrotation in her intestine, but it looks unlikely. The longer she stays on TPN, the more likely her liver is to fail. Currently her blood gases show that her liver functions are great, so we are not too worried yet, but things happen fast here in the NICU. She HAS to get her lungs inflated (there’s collapse in both of them) in order for her to come off the ventilator. She is on very low settings on it, but she cannot come off of it until her lungs are ready. This can also be helped with fluid loss. We don’t know if there is a particular order this needs to happen in, but we need something to happen, and soon.
While the staff here is amazing, Mary and I do not have a an open communication line with neurology like we do with the rest of the staff. They are not part of the NICU. They interact with us like every department does, hemotology, infectious diseases, G.I., and so on. Respiratory is here all of the time They check on Remy throughout the day everyday, adjusting her settings speaking with us explaining to us what they are doing and what they expect the pros and the cons. We don’t get that from neurology. I could understand this if there were some decisive answers about why Remy is having seizures. How are they affecting her? What will the long and short-term effects be? If you know Mary and I, or even if you don’t and you just follow our story, you know that we are very easy-going. We are positive and fair even with this tough situation. Don’t get me wrong, we speak up when needed. At this moment though we do not understand why neurology who seems to know so little about why and what our girl is experiencing has so little contact with her and so little to offer us in explanation. Really, there are zero conclusions or theories as to what why she is going through this and this is no longer acceptable. In the background Mary and I are getting more aggressive and trying to change this. We DO VERY MUCH respect that there are great limitations on what neurology has been able to do because of Remy’s health and condition. We also realize often it is not the number one priority, because Remy has had so many issues. The bottom line is that now we need some sort of answers, and we will push and shove and rock the boat if we must, rather than living in regret down the road knowing we may have been able to influence and outcome that could have been avoided by our advocacy. It really boggles my mind that neurology is not way more active around Remy. I don’t care that her condition is extremely rare. This is my baby and I don’t care who I may offend.
Since my last couple of posts Remy has taken some of Mary’s breast milk. That is a plus! The downside is that she was only able to tolerate it for 30 hours before her stomach started distending. The amount that she was able to handle was minuscule, only 15 cc’s. She is now very distended again and has gained significant weight and the consensus is that she is not ready for feeding again just yet, as it could disturb her and make things worse. She is now 11 weeks old and she is unable to feed. This is something that is definitely affecting her growth. She will probably have to start on a formula that is created for neonates that have issues similar to Remy which are very sensitive to any type of milk of formula. We just hope that she will be able to tolerate any type of feedings and soon.
She is experiencing problems with her intestines again. She is releasing large amounts of bile through her replogle tube. There is great concern that she has issues with bowel movements. This in turn affects her kidneys and stomach as well. There is so much connected. At the moment feeding is not even an option. How long will it take. How much damage is being done not feeding. How much more will occur. This concern grows everyday.
On top of everything. Our refrigerator/freezer died recently. We lost about 50 bags worth of breast milk that Mary has so diligently been pumping and storing. It was such a horrible feeling especially for Mary. To boot the first delivery of our new fridge was refused due to our small hallway space Eventually my brother-in-law James, a part-time mover and two of his guys came and helped us get the new one in. My Dad made it easy and did all the work to get the new one for us. These little things go such a long way, I cant even begin to explain what a headache this would have been without them right now. We love you both!
We have cherished some the moments we have had with our little girl over the past few weeks. I was able to hold her for almost two hours after waiting more than 40 days. Mary kangarooed with her for over seven hours straight. Mary has been by her side all day everyday since she herself was released from the hospital. I am SO SO PROUD OF HER! I lately have missed many days due to long work hours and while I am very grateful to be working and realize it is what I must do, it still leaves a great void in my heart. She opens her eyes and like I said it is heaven on earth to see. We are grateful for what we have. Yet we are still watching babies come in and out every week. We watch so many others get to do things with their children that we cannot. We are not mad at them. We are jealous. There is no way that Remy will be leaving anytime soon. We have accepted that fact for now. But mentally what you must do to accept that fact is the hard part. Our little Remy still has many serious issues to be resolved. She is nowhere near out of the woods. Day to-day there is still no feeling of normalcy or expectation. Her condition changes quickly and frequently. She is very sensitive and yet very strong. She and her body are trying to tell us a and the staff at the NICU what needs to be done but we have still yet to figure it out. She remains as she did in the beginning a puzzle.
To all of you following and anxiously to hear about Remy’s condition and what is happening Mary and I are grateful for all of the love, compassion, and generosity we have seen from people everywhere. While this blog is a great hep to me to Mary and to Remy in so many ways, at times it is just so difficult to update. Mary and I do think about all of you often and we never take for granted how lucky we are to be surrounded and protected by your love and we thank you for it from the bottom of our hearts.