Services in honor of Remy will be held on Friday morning at the Oratory Church of Saint Bonafice located in Downtown Brooklyn:
190 Duffield Street, Brooklyn, New York 11201 followed by a burial
http://www.oratory-church.org/
Details will be posted on the blog by tomorrow evening.
If you’d like to be notified about the arrangements via email, please sign up as a member to Remy’s blog (in the upper right hand corner – it is very simple).
I may have said in the past something to the extent of, “This is the most difficult post I have had to write.” Nothing compares to what I am currently trying to express. As I dreamed of so many times, I will never be able to use this blog as a chronicle to explain to Remy how she began, in a time her life that is fit. That opportunity was stolen from me.
Yesterday, Sunday, May 29th, 2011 at 8:30am, the soul of Remy Elena Zappulla born February 23rd, 2011, left this earth. She was in our arms, with no machines or IV’s running though her veins. She is the love of our lives, the greatest gift we have ever known. She left in peace and just before her heart stopped beating she grabbed our fingers and squeezed them very hard. Even in her weakest moment our Remy showed great strength and courage. She told us she loved us.
Waterfalls are rolling down my eyes as I write this. Our last day and a half has been excruciating and indescribable. There is an emptiness that Mary and I know wholeheartedly will never be filled during our time on this earth. Our resentment and anger, even towards God, for the loss of our precious sweetheart Remy cannot be put into words. Our sadness is often expressed in crying sounds that do not sound human. Sometimes we cry so hard that we do not make any sounds at all. Our feeling of loss is greater than any feeling we have ever felt. A part of us, along with Remy, has died as well. It’s not metaphorical, it’s real. We built her a beautiful room, have her a wardrobe, and a lot of gifts with monogramming. We have so many reminders of the life we wanted with her and it is painful, so very painful, to be without her. At night, in bed it is excruciating! Mary and I clench onto one another trying to provide any inkling of comfort we can give to one another.
After not leaving the hospital for 5 straight days, hoping for a miracle, but knowing this awful moment might come and did, today’s morning experience was as horrific and as real as it gets. Today…………….this morning, as we woke, we did not get up quickly, we did not rush to get our things to go to the hospital, and we were not filled with excitement to get there and kiss Remy’s face all day. It was the brutal empty feeling of loss. The worst kind of loss in its most extreme form. Going to the hospital everyday for the entire year would have been a joy compared to what we felt this morning.
We do not expect these feelings to ever disappear. There will be an empty space forever. We do not know what we are feeling at times because it is so new. Yet we treasure our 95 days with Remy more than any gift we have ever experienced in our lifetime. Our unconditional love for Remy will ALWAYS remain! Remy has brought us as husband and wife, closer than ever before. In the last 95 days, she has taught us more about our own lives than we have learned in our 30 and 38 years. She will live on forever and we will not forget her. She has affected so many people we know, and many others we have never met. She has taught, touched, and heightened the lives of not only Mary and I, but thousands of others. Remy is a legacy. We hope that anyone who reads this post, follows our story, or has connected with Remy, has gained something from her.
If you see Mary or me right now you may not have the same feeling. We are broken, and at times cannot express optimism and strength. This morning we woke up with feeling of wanting to be dead. With time, we know we will be strong again. Our Remy was SO STRONG! Her heart was physically and metaphorically the strongest heart anyone could ever have. We will never forget that. We will carry on her legacy and bring good from it. She is our hero, our superstar. Remy is our LOVE and she will always live on.
A service will be held in Remy’s honor later this week in Brooklyn. All are welcome. Details will be provided in my next post. If you’d like to be notified about the arrangements via email, please sign up as a member to Remy’s blog (in the upper right hand corner – it is very simple).
We remain grateful to everyone who has supported us with prayer, love, donations, words, and thoughts and so on. Your actions mean the world to us and we love all of you.
Please take some time to enjoy the beautiful pictures of our precious Remy below.
I know that many of you have been anxious to hear of Remy’s results since Sundays post. This has been a difficult week for me to be able to update. Between more long work days and spending days and nights at the hospital in between and the stress of Remy’s worsening condition it has been very difficult to even think about blogging, let alone do it. Remy has faced so much throughout her three months already. The past 10 days have been challenging and treacherous for her. She has and has had multiple organ failure. Her dysfunctional kidneys have not allowed her to pee. Her blood vessels still are unable to retain fluids. She has grown immensely and is filled with so much fluid that it has caused bruising and discoloration of her skin throughout her body. Her lungs were severely compromised. Her heart has been affected. She looks plagued and physically beaten. Blood clots all over her skin, (which has little room to expand any more) legions all over her. Her face is so swollen it appears as if she has three eyes. Metabolically and physically sicker than she has ever been before. Some doctors here have never seen a baby as puzzling and sick as Remy is. They have also never seen a baby as sick show such fight!
We have lived each day not knowing if she would be with us the following day. To go through that is beyond explanation. We have been tested, broken, destroyed, dehumanized, filled with rage and anguish. We have been counseled and cared for by so many here at the NICU. We spend as much time as humanly possible talking, touching, kissing and singing to our little miracle child! Our brilliant, mind-blowing staff here has shared our ups and downs and continues to challenge themselves. We have held several meetings each day. We work with them by the hour trying to hear Remy speak to us, and figure out what she needs. While we are no scientist or medical authorities of any sort, we have learned so much about our baby’s needs and responses.
Emergency surgery this afternoon, which very likely could have ended her life, has given us a small glimmer of hope. She is too sick to move, so it had to be at her bedside. It has helped her breath better, and alleviated a stressed lung and her heart. Our Remy is by medical standards still extremely critical and the odds are very much against her ever coming home with us. We understand what we and Remy are facing each and every day we are here. For now though we continue to focus on trying to save her. She is miraculous. She is miraculous! She is miraculous!
We are grateful to all of our family; blood relatives, NICU staff, friends and followers, donating blood, bringing us food, sending us love and praying for us, whatever it is you have done! I cannot promise that I will have another update anytime soon as it is growing more difficult to post. What I can promise is that Mary and I, along with her great medical staff will be here every day by Remy’s side, working hard and fighting, doing everything within our power to make Remys life story last longer than ours!
Without question of any post I have previously written, this one carries more emotion than ever before. I will usually sit on my laptop and try to convey some experience, some diagnoses, some surrounding and mix it all together. I want you as friends, family, and followers to understand what we are experiencing. What Remy’s status is. I try to paint a picture of what it is like in here and what it is like when I am not here. I want you to connect. I want this to be a chronicle that I can go back and show to Remy when she is older, something to reflect in a time in her life when it seems fit. I want this to be a resource for those who may be going through similar situations and need to relate. I often go in ready to write about one thing and end up writing something different and if you read the blog you know my posts can become very long. I don’t think I possess the ability to convey exactly what Mary and I went through this past Thursday. It was the most frightening moment in my 38 years. On Thursday, both Mary and stood by as we watched our little Remy almost leave us!
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The space above represents emptiness. That was the strongest feeling that was felt. It began with an attempt to transfer Remy from her oscillator to a gentler machine known as the ‘Jet’. It started with just three personnel and ended with a huddle of about 15 to 20. The tone was one of the utmost concern, panic and fear! There was screaming, crying, falling to the floor, panic! Our Remy was seconds away from never breathing another breath again. Everything around us became blurry. We honed in on the possibility of our child struggling to survive and it was as if we had entered into another dimension. Our hearts stopped. We could feel our bodily functions like we never have before. We were helpless. I mean HELPLESS! It is was our absolute WORST nightmare coming to fruition in front of our very eyes, except we were awake, the kind of awake you never want to be!
During this moment we truly realized as much as we thought we knew what love is, as much we thought we could describe love, we never even had a clue how strong our love was until that love was being TAKEN AWAY FROM US! Remy…………..our girl, our little lady, our bugaboo, our sunshine, our LIFE within us, WAS NOT READY FOR THIS.
Following this event we were told by many doctors and personnel at the NICU that we should enjoy every moment we have with her, that we should be prepared for the worst, that there are so many horrific possibilities in our’s and Remy’s future, both long and short-term. We have heard similar things from the staff before. This was different. The tone was blunt and so serious. The expectations are so questionable. It is now Sunday morning and Remy still has major leaps she must make and the situation is still very critical and more real than ever.
Remy’s response in the 12 hours following this heart-wrenching, and aging event was nothing less than miraculous! She made overnight progress that was simply astounding! This is not just from a parent’s perspective, but from those on the staff caring for her day and night. For the next 60 or so hours up to now she has been very non responsive, except for random movement and hand holding, which melts our hearts. She is currently in a holding pattern, but also gradually heading in the wrong direction. There is immense concern for her in so many areas of her health. In this post I don’t have the energy to explain all of the medications, attempts to help her gain strength, and symptoms she is dealing with.
Our baby girl has shown unthinkable strength. She is not ready to give up on us and herself. She has a great amount of healing to do to recover from her recent surgery while also having to recover from preexisting conditions and battle the unpredictable day to-day hurdles she faces. It do not have the option, but I would endure a lifetime of torture and solidarity to see my baby get healthy and live a long happy life! Our spirits have been tested more than ever before over the past four days. While our baby’s health is the biggest concern of all our psychological status is unpredictable. We know that we are parents. We know that we must continue as any other parent and maintain our strength and dig as deep as humanly possible. We advocate when we see fit and try to influence as we see fit and let the experts do what they must and continue to talk and touch our little angel everyday.
Day by day, hour by hour, minute by minute!
The picture below represents strength that starts from the roots. Our Remy has strong roots that date back to her ancestors. We want to see her flourish and grow into her own wonderful ‘self’!
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Remy has been having distention in her bowels since she was born, in the beginning of her life she was tested for everything, from NEC (ecrotizing Enterocolitis) to Hirsphrung’s disease. Nothing was found and her bowels were assumed just premature. A rectal biopsy was done and nothing surgical was found. Then she got septic. As you all know Remy has been sick for some time, and has progressively been getting better. She has still been having lung and gut issues, along with seizures. She is 40 weeks now and if she would have been a healthy baby, would have been home by now.
Last week Remy had a CT scan on her lungs and intestines to look for something we have been missing. After the scan Dr. Ginsburg, a very well-respected pediatric surgeon saw calcifications around her intestines. These were most likely caused by a perforation in her intestine which eventually healed itself. Ginsburg decided to do an exploratory surgery to check for a narrowing in the intestine where the perforation healed. She was also throwing up and releasing a ton of dark green bile through a repogle tube that goes from her stomach up through her mouth, a clear sign of intestinal problems. These issues could be what is causing Remy to be so backed up and swollen. So of course we agreed yes, let’s do exploratory surgery to see what we can do.
Over the weekend Remy remained stable, awaiting Monday’s surgery. We were worried she would get worse and either have to have emergency surgery or not be stable enough to have it on Monday. I had to work and it was very difficult being away. I was able to stop in for a very short time during the surgery, but my mom and sister came to the hospital to be with Mary. The good news is Remy did great. She is incredible and awesome and every great word you can imagine. Remy did in fact have a lot of dead intestinal tissue. Dr. Ginsberg removed 40 cm out of 120 cm of her small intestine. Which leaves her a considerable amount to live with. He explained to Mary that it could either have been NEC or a Volvulous, both in which the end result is dead tissue. We will never know the cause, or which one it was, but she definitely had one of them.
The healing process has begun. She had a tough first night. She struggled urinating, keeping her blood pressures up and is back on a high frequency ventilator at very high settings. She is swollen again, they are pumping her full of fluids again to make sure she doesn’t dehydrate. The second night was a little better. She is more swollen today and cannot open her eyes but this is expected. This is going to be a long, slow process. She will get better, she has to, but we have been warned she can get worse again in the process. She is in the beginning of a long healing process. She will be sick for a while, but when she does begin to get better we can hopefully get her lungs better, extubate and begin to feed her. We still don’t know what the long-term effects of all of this will be, but we will stay strong and take it day by day.
In a few days she will have a bag colostomy bag attached to her. This will catch her poop while her intestines heal. She will have this bag for at least 6 weeks and maybe longer. One of the major concerns is that her Illocecal Valve, which is the valve that connects her small and large intestines, is very fragile. She needs this to heal or it could cause problems in both the short and long-term and would affect diet and bowel movements. Her lung is still a big concern as well. She has a cyst, rather a large pocket of air, that we hope will go away but instead has grown. Another concern is that she has required steroids to help her through all of her challenges. The steroids can interfere with her healing process. Weaning them down is necessary, but also a test of how well she can do without the steroids. She is back up on her Dopamine. She is on antibiotics, Zosen and Vancomysin. The seizures have been kept under control with heavy doses of Phenobarbitol and that will continue until she is in a stable enough state to be able to focus on that. This will be a while from now. She is very critical again, but stable.
In many ways Remy is back at square one. She is worse off than she was from the day she was born. In other ways she has progressed and we are astounded by her great resilience. Her surgery was a success!!! We hope that this discovery and correction in her intestines will help improve her overall health rather than diminish it. We still have a very long road ahead. While its easier said than done we do our best to take it day by day. We are so thankful and lucky to have the staff that we do. We thank you so much for loving Remy and for helping her get better. It truly means the world to us.
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.
Here are some great pictures taken in the past week and a half .
My apologies to everyone who has been waiting for this late but very very great. Due to long days in the hospital meeting with doctors and long days in the field I was unable to post. For those of you who have not heard Remy had her MRI. We had been waiting so long for this with nervous thoughts and butterflies and fear and hope all mixed together.
The results showed significant blood clots between the brain and the skull in the sinus cavity. This could turn out to be a problem eventually. However, it is unlikely that it will. Chances are that it will dissipate on its own or with the treatment of blood thinners. Blood is being taken for several tests to be sure there is not a bigger threat.
More importantly there was NO brain damage! This was the greatest news we could have received. It appears that our little girl has a brain that is functioning just fine! While there could be problems in development that we cannot see right now, we will address that in time if that should be the case As of now evidence does not suggest that. This is a moment we are so grateful for! There has been more going on this week (all good stuff) and I would love to share, but I will give a more extensive update in a few days. For now Happy Mothers Day to all the Moms out there. You deserve it! We are enjoying Mary’s first, and Remy is doing better and better each day opening her eyes more and more making us smile our faces off! As always thank you so much for your love and support!
Thursday was a very special day for Remy. Though she does not know it yet, it was a day that Mary and I have been awaiting and envisioning since before Remy was even born. My Grandma, ‘our’ Grandma, Remy’s Great Grandma Theresia Dombrofski, got to meet her great-granddaughter and it was a healing experience for all of us. It was a healing of the soul. It was just one of those moments that you cannot really quantify in numbers or in theory or as to what kind of effect it can have; it just does! Standing tall and proud at 91 years old it was instantaneous joy. She showed concern and worry but did not cry or wince or display discomfort from what she had witnessed. This was a monumental moment. My grandma, who traveled from Czechoslovakia at the age of 16, due to the onset of WWII and Nazi Germany, who left behind several of her 9 brothers and sisters, who never again saw her mother and much of her family, stood over my child. Without her great sacrifice and her great contributions to our life neither me nor Remy would be here today.
Overall, Monday through Thursday was a stretch of progress for Remy. Everyday she improved; her edema (unhealthy water weight) decreased, her collapsed left lung got better, her blood pressure, heart rate and oxygen levels, all either improved or remained steady. We were excited for the next step and were hopeful she would soon be moved to SIPAP! We said goodbye to my parents and Grams. My Grandma told the nurses she was so in love and wanted to take Remy home with her. After they left Remy again began to seize. This would go on for over 24 hours.
Her seizures were again very intense. They took a while to control. Her meds were increased to heavy dosages and she was hit with everything. This went on until 9 pm on Friday evening. Sparing myself from having to relive the experience by writing in detail, I will just say that the second half of the day was not a good day for Mary or I and most of all, not for our little angel! Saturday came and it was yet another rough day. Remy was barely peeing again. Her edema had increased. Her blood pressure was low and she had to be put back on Dopamine. The Dopamine was also quickly increased. Again came fear of a possible infection, so she was put on antibiotics once again, Vancomycin and Zosen. Our baby has lived more days on antibiotics than without. Her leg was starting to bruise near her picc line in her leg, so it had to be moved to her arm. Thankfully, for the second half of the day and throughout the evening Remy started to improve once again. Through all of this, for the most part, her respiratory functions were steady and stable, though her left lung was still experiencing collapses it seems every other day.
Sunday morning we arrived to an entire staff gathered around Remy. For a moment we freaked out in fear. It turned out to be a very good thing. Despite the fact that Remy’s left lung had been collapsing and expanding over the past few days, Remy was extubated and re-intubated and moved onto a conventional breathing machine. It wasnt the SIPAP we were hoping for but it didn’t matter. This was the right step and it meant improvement. Rather then pumping several puffs of air in and out (about 400 a minute), she is now being given air at her normal breathing rate, and when she is able to breathe on her own, the machine recognizes that and her breathing assistance is decreased. This was a tremendous step for Remy. We had been waiting for this and hoping for this for so long now. One of the greatest rewards was that Mary was finally able to hold Remy after waiting for 36 days. It was not skin to skin like kangarooing, but the joy and feeling that it brought to Mary was priceless and for Remy we know it is important that we hold her as often as we can. Sunday was a great, great day!!
Sunday night we were excited to find out that Remy had peed 190 cc’s in one sitting. Are you kidding?! I mean she doubled her 10 hour record in one diaper in one diaper. This was fantastic and has continued through Monday with record-breaking urine counts. My god, I never thought I would even care about something like that, yet alone write about it! Backtracking to Sunday evening on the opposite spectrum Remy had developed a fever of 102.1; the highest temperature she has ever been. This was needless to say a big scare. The fever would decrease throughout the night her temperature was back to normal by morning.
Back to the respiratory situation. Now that Remy is on conventional ventilation, she will be able to get a brain scan, better known as an MRI. This should happen any day now. I have been out in the field the past few days and unable to visit, but I cannot wait to be back in the hospital tomorrow. We are very anxious to get the MRI results and see if there is anything to be found. At the same time we are extremely scared! We have been told by more than one doctor that there could be terrible results which may be irreversible, and we have been told that she may be absolutely fine. As always everything surrounding our and Remy’s life becomes a double-edged sword. We have strong faith that our Remy will be okay. Through all of this we have seen too much from her, that it makes us believe she will be okay. Until we have the results from this long-awaited MRI, our heart rates will be increased and our minds will be focused on one thing. To her I say, “Please sweet little lady of mine, show me that you are okay and stronger than anyone could ever imagine, that you are healthy and will get healthier and I promise I will continue to do everything in my power to give you the best life I can give you.”
Below pics of Mary finally getting to hold our Remy once again after a 36 day wait and Grams with Remy.
Our Little Remy 