MRI Relief!

Posted on May 8, 2011 by petezappy1

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!

Back in her Mother’s Arms

Posted on May 3, 2011 by petezappy1

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.

Can I get a SIPAP please!

Posted on April 26, 2011 by petezappy1

Late Friday night I finished my assignment and was looking forward to hanging out with Mary and Remy during a seven-day break. Saturday morning came and we were off to our daily hospital routine. Mary had her coffee. I had my green tea we had a few bananas and some snacks packed and we were off. It was a pretty good morning. My sister Dawn came to visit a little after noon. We caught up and hung out bedside with Remy and ate lunch in the NICU. Remy was content, until about four o’clock, when Dawn headed out. Little did we know Remy was just behaving for her Aunt Dawn.

The rest of the day was not content. Remy had begun to experience more seizures. She has done this before on many occasions, but these were more like the original seizures she experienced about six or seven weeks ago. We held her hand and pleaded with her to stop seizing. A few hours later she stopped seizing and they seemed to get them under control after upping her dosages of Phenobarbitol, Ativan, Keppra and Fosphenytoin, all of which slow down the brain activity. We had seen this before, but being that she had been experiencing so many seizures this week it was tougher than usual to accept.

Easter Sunday came. We passed on dinner with our family in Long Island, and though they wanted to come and be with us we needed to be alone with our baby girl all day. This day would turn out to be an even more difficult day for Remy. Her seizures had continued on and off through the late afternoon into the early evening. The seizure activity was extremely frequent and they for lasted long periods. They continued steadily for about thirty minutes at a time with maybe five-minute breaks. They look like little electric shocks going through her body every second. Her arms, legs fingers toes all jerk simultaneously. We held her hands and feet and talked to her over and over, pleading with her to get better. I can’t describe what goes through my mind watching this happen, except that at this point I am losing my mind. This went on for half the day. Thankfully due to the high doses of medication she was given, she eventually stopped.

Still we cannot do an MRI because she is in no state to do so. An MRI would give us more accurate idea of what may or may not be going on under that little skull of hers. It’s a huge concern. Could this be damaging her brain? Could it be affecting her in the long term? Yes. On the other hand, it could be cranial reaction that has yet to do any damage. Her motor functions work well. She grabs, jerks and clenches, yawns, licks her lips and reacts dramatically at times and this is all positive. We can feel her presence. She has reactions like you and I. Though we cannot hear anything because she is intubated she cries, yawns, gets pissed off. You can tell when she is uncomfortable or hurting.

Yesterday her chest tube was removed after being clamped for 72 hours. Unlike last week the x-ray four hours later showed no air accumulation after the fact, and for now it does not need to be reinserted. This is a small victory and what we hope is a sign of more to come. She is peeing like crazy, about 140 cc’s just in just a 10 hour span yesterday. Not by measurement, but in comparison its the equivalent of what you would have to pee after during a heavy night of beer drinking. If there were an over/under on her urine output Remy covered the over by a long shot.

This morning has been great so far. Mary and I woke up to some Bob Marley’s, Three Little Birds. We called in to the NICU beforehand and Remy’s still hangin’ strong! Her levels continue to be weaned down on her oscillator and it is a strong possibility that she will come off this week and go to SIPAP. In other words; WE MAY BE ABLE TO HOLD HER THIS WEEK! It’s been about a month since we have been able to do so. We are really hoping this comes to fruition quickly. We are feeling so good today, the sun is shining and so are our faces! Mary just shed some tears of joy when we were told of the possibility of SIPAP. We have new energy today! There is a reservation under the name ‘Remy Zappulla’ for a SIPAP, which could be seen as early as tomorrow if we are lucky. We have asked our daughter to spare us of any surprises and stay the course!

We took some Easter pics this week of Remy. Aunt Brenda got her a baby duck, which we put in a plastic bag so no germs get to her, and Mom T. brought us Mary’s first Easter basket from 1980. (Mary was born the night before Easter). Hopefully this will be our last Easter indoors. Bring on the park next year!

Feeling Deflated

Posted on April 22, 2011 by petezappy1

It has been tough to get out posts the past few weeks. This is my first phone post. With long work days, visits to the hospital whenever I am not working and just so much to catch up on in everyday life it grows tougher to keep a grip on everything. I was able to spend the day with my girls on Wednesday. We had a good day overall. It has been a tough week. Mary has especially been hit hard. Remy has seen some ups and downs this week. While she is now peeing like crazy and releasing fluids she is not losing much weight. Her chest tube was removed and then had to be reinserted just four hours later, due to air accumulation outside the right lung. Her left lung collapsed improved and again collapsed and improved. Her eyes are still unable to open despite some short moments of squinting. She remains swollen and the staff is having trouble locating good veins to move her I.V. lines, as this has been necessary to do. Her oxygen settings needed to be raised, btut she was taken of the nitric.

We are being patient, as patient as possible, but it is growing more difficult. We worry about our baby girl so much. We have watched so many new babies arrive, and so many recently leave. While extremely happy for our newfound friends and there healthy babies, we want so much to see our little Remy follow in their footsteps and see progress now!

We had lunch with our cousin Cindy, who is like a sister to me. For those of you who don’t know, she has had the great misfortune of watching her 3-year-old son Ty suffer from cancer and has spent her past nine months practically residing in the hospital full-time. It was so great to spend even a short time together. We talked about how we just want our babies to stop suffering and be okay, and how much our lives and perspectives have changed in so many ways. We are going through two very different experiences but share so many of the same. Most of all, we want for our children to be okay and would trade places in a second with them if we could, and we ourselves just want to get back to worrying about normal stress.

Mary and I know that Remy has a long road ahead of her. We do not feel sorry for ourselves. We are just drained and scared and want to hold our girl again. Remy has been on different means of life support for close to a month now and while she has made improvement in many ways her status still remains in limbo. We continue to remain strong, to move forward and to work with Remy’s doctors and influence their decisions whenever we feel we must. We are enamored by their talents, care and dedication. We will continue to fight this fight with our baby girl and keep our strength and hope alive and well. We are deflated very often but still going and not pessimistic. We are human, and if the tone of this post sounds like we have been beat down, well we have. However, each day is a new day, and we remember no matter how hard this becomes it much more about our baby girl than it is about us. It is okay that sometimes we will get beat down, it is just important that we get back up and stand strong for our girl!

Supermom!

Posted on April 17, 2011 by petezappy1

It’s Sunday Afternoon and Mary and Mom T. (who was in town for 36 hours, and such a big help) just went out for a rare outdoor excursion to pick up a few needed items. It’s been an emotional day for me. After working long days this past week I made sure to visit when possible. My last visit ended early. Mary and I had to leave early to try and get our home somewhat back in order, and thankfully my parents came over to help us. I’m tired, but full of excitement. Knowing I will work long days all week except Wednesday it is great to be here, but sad knowing I’ll be absent through some of Remy’s stay in the NICU. I have sudden bursts of pride about Remy and then tears of happiness and hurt. I feel as if it’s been a non-stop ride of energy for so long, that no matter what the emotion, or no matter what I am feeling, today is one of those days it is just surfacing. That is the best way to explain it.

Our little lady has had her ups and downs these past 48 hours. Since my last post we have continued to see her progress. Without getting into all of the details about her meds and conditions, Remy’s charts showed slow but steady improvements in her areas of focus. Also while at a slower pace, she still continued to pee. Her water weight continues to decrease, but she is not letting go in great proportions and has to receive extra amounts of fluid to increase flow in her blood vessels. She makes sure that we all are paying close attention to detail. The slightest adjustment can make a big difference with her vitals. Remy keeps us all on our toes.

Yesterday while I was at work, Mary watched Remy experience more seizures. It’s difficult for us to watch. I mean, really, it’s a difficult thing for anyone to watch., but even more so since neurology can only try to manage them rather than get to the bottom of them just yet. The seizures are an issue that cannot be approached like any of her other conditions and seeing that she has retained so much water weight as a result of the Pneumonia and renal failure, it becomes even more difficult. There is no way to confirm technically that they were seizures without the EEG attached to her, but unfortunately from what we have witnessed, we know the textbook signs. A video EEG was attached to Remy last night to monitor her movements and brain activity and removed this morning. The problem is that she has so much fluid in her body, including her head, that the leeds cannot decipher any data from her brain.

Remy’s last seizures were witnessed by Mary and I almost until right before we left this evening, a little after 8 pm. She has been given increased doses of Phenobarb and put back on Keppra, a drug she was previously taken off of two days ago. Additionally, she is on Ativan, an anti-anxiety med that is being administered to help regulate her brain activity. The focus on her seizures cannot and will not take priority over other issues until she improves. She cannot undergo an MRI yet, which is needed to get more detailed results.

There are several positives for us to hone in on since my last post.. Remy opened her eyes briefly this week. Her nurse Lilly (officially anointed Aunt Lilly) sent us a photo at 7am of Remy with her eyes open this morning . Mary and I were able to hold her for a bit at different times while helping the nurses and doctors with various things.. It may not seem like a whole lot, but wow, it’s a moment that will definitely carry a glow inside of me this entire week while I am at work. For the most part, Remy is ‘knocked out’ from the drugs and remains in “limbo.”

Another setback we discovered yesterday was that her left lung had collapsed. While this is not as serious as what happened to her right lung and she does not need a chest tube, she needs to be watched closely. The right lung has been in great shape for the past few days. In fact, the chest tube which has been draining air and fluids from outside of her lung was clamped and may even be removed tomorrow! We have so many reasons to be sad and broken down. However, we have many more reasons to remain hopeful and grateful. Don’t get me wrong, we both have our moments. We are parents, and we’ll be damned if we don’t persevere and demonstrate all of the strength that we have within us! Remy relies on us and has shown us so much strength on her own! We also remain grateful to all of those who continue to support us, pray for us, and send us your love and positivity in whatever form you have.

Lastly, I wanted to dedicate this post to my Awesome wife, Mary. It’s an understatement to say how she has been the most amazing mother I have ever seen! She kisses Remy every moment she gets and giggles while she ‘eats her face.’ She has been at the NICU everyday and with Remy every step of the way. Mary has been freezing so much milk that we have started to store it at my parents! She sings, reads, and stands over Remy’s incubator all day long. I try to massage her shoulders and even my slightest touch hurts because physically she is so fragile, yet inside she is so strong. She is a supermom and my superhero and whether Mary knows it or not, Remy certainly knows who her Mom is.

Limbo

Posted on April 13, 2011 by petezappy1

The past 5 days since my last post have been all about patience for me, Mary and Remy. I have been pretty busy working in the field the past few days. Other than that spending days at the hospital with Remy, working from home, and spending a few late nights emptying and re-organizing everything at home after our apartment was completely taken over with heavy layers of construction dust. Insulating Remy’s new room and having to a do a complete gutting also brought on some unexpected surprises. We are slowly but surely getting things back into order.

To the more important stuff. Remy has progressed since the last post. She is down to about 2,500 grams which about two weeks ago was over 3,500 grams. What does this mean? She is losing significant water weight! She is peeing most of it out, which is what we hoped for. She is still not very active. Though she continues to give occasional hand grips and toe curls throughout the week. She also expresses that she is pissed off or upset when she is disturbed. Especially when she rotated or any tests are performed on her (she has to be rotated to balance out the swelling). It’s a good sign. The hard part is that these changes in her body can be uncomfortable and painful. When she was at her most swollen, she didn’t feel as much pain as she is feeling as it decreases, so the smaller and healthier she gets, the more extreme the pain gets. She is often administered Fentanyl, a pain-killer to help her cope. Her vitals for the most part have been where we want them to be. She has still been unable to open her eyes, as they are still quite swollen, but we are hoping that will change soon and we can look into our little girls eyes again.

The staff here, as well as us, are starting to get to know her better and what she can and can’t handle, physically. At least we all tell ourselves that. She has been weaned on just about everything, but it is an extremely sensitive process in Remy’s case. She often does not tolerate the weaning and she has to go back up on doses or oxygen levels. Her MAP’s (blood pressure) or SAT’s (oxygen levels) are more or less okay because they are being manipulated by drugs and machines. Today is also 20 days straight on antibiotics. We hope to be able to end that cycle within a day or two.

Remy is still very sick, we learned early on that we have to be grateful but remain cautious when absorbing any good news. In the same token we see improvement and more ‘consistency’ both physically and mentally with Remy over the past 5 days and that has us optimistic! That’s why we’re saying were in limbo. She has done this before, gotten significantly better and been just about to turn the corner, and she falls back. Hopefully not this time! I know many of you were anxious to read. I tried to keep many in tune with Facebook updates and spread the news as much as possible, but I know you all understand that as important as it is for me to document Remy’s story and as therapeutic as it can be, sometimes it is very difficult to even get to, especially this past week.

For now I don’t have much more to report. We remain positive, We are patient, but equally anxious to see more significant changes and see our baby do more on her own without the assistance of meds and machinery. Mary and I are both exhausted! We’ll take happy improvement exhausted over frightening setback exhausted any day of the week though. Our priorities have changed over the past seven weeks (to the day since Remy was born) and we continue to learn so much about life and parenthood. Remy is definitely getting stronger, but she is telling us to be patient and give her the appropriate time to heal and everyone is listening. She is the boss, and both Mary and I and the NICU staff are at her service!

Here are some pics which tell short story without words. The last one is from just a few minutes ago.

Waiting

Posted on April 8, 2011 by petezappy1

Remy has not made any progress in the past two days. There were some positives but no real progress. She did produce about 37 cc’s of pee after 42 hours of nothing. Picture a standard spice container you would get a supermarket, now hold you thumb and your index finger about an inch apart. That is about how much she filled that container. It’s not a lot. It was nice to see it at first, and enough to make us smile and feel excited. But since yesterday there has been close to nothing again.

She is swollen today, very swollen. Her hands and feet are more bloated than we have ever seen. She has had to undergo several procedures. Her chest tubes were moved a few times between yesterday and today. After what the x-rays revealed, it was necessary. These tubes move a lot, mainly because the air and fluid surrounding her lungs move. If you tape a string on a windowsill it will just sit there. If you open the window, the string is will blow around and sit in different positions, when the wind dies down. Remy’s lungs are constantly changing condition. One day the upper right lung will be collapsed, the next it will be the lower right. Her left lung experiences hyperinflation, because it already functions okay but the oxygen she receives overcompensates. She experiences acidosis when she does not get out as much carbon dioxide as she is producing. This affects her acidity levels and is directly related to her kidneys, which are already functioning poorly. She also gets Pneumothorax, which is when there is air outside of her lungs that needs to be inside of her lungs. We desperately want to know that the air is inside her lungs, where it should be. On top of all of this, every time she goes through a procedure of any sort her MAP’s (blood pressure levels) drop down immediately. Following that, they can take all day to get back up to a desirable rate.

When her MAP’s reach the desirable rate of 39 and above that is when she usually pees. Problem is, she requires so many procedures and disruptions, that it is a rare occasion her MAP’s can be kept at a steady rate that is pee conducive for her. It’s like trying to drive a car when one tire is heading east, another west, another south, and another north.

One really great thing is that a cardio surgeon yesterday was able to insert two lines into Remy’s right and left Femoral arteries. These are the arteries in her right and left groin area. She is so swollen, so it was a big concern that he would even find them. He aced it! What he inserted was an A-Line (arterial line) and another I.V. line. The A-line is great, because it serves two purposes. It is used to constantly and accurately read her blood pressure (better than a standard cuff), while more importantly it can be used to drain blood straight from that line. That means she does not have to get pricked with a needle throughout the day and go through that discomfort and stress. I estimated how many times her blood has been drawn in the last 44 days, based on an average of what I have witnessed. My guess is about 500. I take no joy in saying this, but I’m pretty sure I’m close. The other line allowed us to remove an IV line from her wrist, which was there for quite a while, and was starting to show signs of distress. We would love to be able to remove her picc line and try a new artery in her leg or somewhere else. The picc line itself could be the source of infection. It’s a long shot, yet a possibility. This is too risky though. She is too swollen and trying to find somewhere to move it to is not practical right now.

Remy has been for the most part, immobile for the past two days. No movement, no hand grips on Mommy and Daddy’s finger, no toes curls, and no tongue movement when we clean her lips. It’s concerning and disheartening to witness! We want a reaction from Remy. It’s her M.O. Yesterday, just prior to tapping in to her Femoral arteries I was holding her head and she experienced some heavy twitching. This was not the movement I was hoping for. They were most likely more seizures. She had to be administered a heavy dose of Phenobarb, which also carries a barbiturate. She had to be administered Vecuronium, a paralyzing agent, and prior to the procedure to ensure she wouldn’t move. The after affects of the Vec and the continued Pehnobarb injections I’m sure are affecting her mobility even more. Regardless, we are so anxious to get some sort of movement from her. Anything!

Today she went trough some more stress. Both of her chest tubes were removed, and a new one was put in to get some of the air out of her lung cavity, which was a positive thing. However, it was still more stress on her. She had to be extubated and re-intubated with a wider tube to help her saturation levels. It was stressful to watch.

She is finally at rest now with no foreseen activity coming up for at least a few hours and hopefully through the night. Her blood gases are good. She received a blood transfusion today. Her latest respiratory x-ray looked good. We are hoping for her MAP’s to increase to about 40 or above and stay there. From there we hope for lots of pee!

On another note we want to mention how even though these times are incredibly trying, we find comfort and kindness in the friends we have made here in the NICU so far. It is amazing how close you can get to people so quickly, and how a trying situation can bring people together. We saw our newfound friends Courtney and Avi leave the NICU yesterday with their little girl Charley, after 5 long months of watching their child go through hell and get better. We miss them already and Mary will especially miss going to see their little girl. Whenever Remy is having a trying time, Mary found so much comfort in going to see her. Knowing she is home makes us know that someday we will get to go home too. We deserve it and so does Remy. The picture of the empty space at the top of this post is both a hope for us and a tribute to Charley.

Uncertainty

Posted on April 7, 2011 by petezappy1

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!

Life Support

Posted on April 2, 2011 by petezappy1

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 37^th 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.

Growing Stronger

Posted on March 30, 2011 by petezappy1

It is Tuesday, I think………yes. We are so tired and sleep deprived that the days are starting to run together. Remy’s status has improved greatly since Friday. Remy is definitely a Zappulla. There is never a dull moment with our little lady.

We stayed at the hospital overnight on Friday into Saturday. Remy was very sick throughout the day and we couldn’t leave her. Remy had the whole NICU on a “red alert.” Her incubator was flooded with nurses, residents, and random doctors throughout the day. Mary and I were exhausted… physically, mentally and emotionally. At this point, Remy wasn’t showing signs of improvement and we have never been so afraid. Her blood pressure was very low and her entire body was incredibly swollen.

By Saturday evening she was starting to stabilize, but was still in critical condition. We went home for a bit after the nurses kept telling us to go get some rest and try not to worry. “Try not to worry?” Ha! Easier said than done. But I will say, that nothing makes us feel better than the nurses and doctors who take care of her. Throughout the night we called Lily, our night nurse, over and over and over. At about 1 am Lily gave us the best news. SHE PEED! Remy had not urinated in about 24 hours and they feared renal (kidney) failure if she didn’t. Urinating is crucial when your body is retaining fluids. Not only was our daughter on life support, but knowing that if she gets any more potassium it can be crucial, so we have to cut out any medicine that has any potassium in it is incredibly scary. Urinating was the only way that would improve.

Additionally, she pooped on her own, which she had not done in a while. Mary cried so hard when we hung up the phone that she scared her mother to death! Mom T was sleeping in the other room and was terrified until she learned it was great news! Mary is on an emotional overload, so naturally the crying comes when news is good or bad.

Here is a more clinical version of what Remy has been going through. She is now 33 days old but she is still unable to tolerate food. Her only source of nourishment is through TPN drips into an I.V. She receives potassium, electrolytes, calcium, and amino acids and has been administered Pepcid for acid reflux. She’s on Lasix which can reduce the swelling and fluid retention and treat high blood pressure, but mainly it is to treat her kidneys, which were in danger of failing. She is currently breathing through an intubator and the nitric oxide machine, on continuous doses of Phenobarb, and Keppra to control the seizures. She is on four antibiotics; Vancomycin, Zosyn, Cefotax. and Fluconazole, an antifungal antibiotic. She was taken off the Fluconazole today, the rest are on a 10-day cycle. She was put on Dopamine has been slowly weaned down and Epinephrine, which she was thankfully taken off the on Sunday.

By Sunday, Remy was slowly but surely improving. She was reacting well to all of the meds she was receiving. Currently, she is still unbelievably swollen! Doctor Wachtel called her a little blueberry muffin! Her blood pressure was stabilizing, and her blood gas levels were the best they have been throughout the weekend. Her heart rate lowered significantly, and the doctors had weaned her off some of the meds. She started peeing a ton, which is really important for her progress.

We were able to go home Sunday night a little more relieved and filled with hope. On Friday before leaving, Dr. Wachtel grabbed Remy’s little hand and said, “Promise me you will see me on Monday!” and thank God she did! There was no certainty. It was an emotional weekend, but to know she is getting better is the best feeling a parent can have.

Monday was more of the same trending. Remy was getting much better. She was taken off of the Dopamine. We were visited by multiple teams; Neurology, Infectious Diseases, Social Services, and Surgery. Nurses, fellows, attending’s, and residents alike were all genuinely happy to see Remy doing well. She is like a little Rock Star! While we are no more important than anyone else here and everyone has a tough experience in the NICU, it was evident how critical she was and our little fighter has managed to start her own fan club! We’ll be much happier though, when she decides to play it cool and stay out of the limelight as nice as it is to have the support! Other parent’s even check on her all the time. They say at the NICU, the more your baby is ignored, the better she is doing. We had a great day. Remy was able to get one eye partially open and move around a bit. At some point in the day our nurse, Claudia, said that we would know Remy is really doing better when she has more than one baby to take care of.

When we arrived at the hospital on Tuesday morning we saw Claudia, our nurse taking care of the baby next to Remy. Relief! The past few nights when she was really sick her night nurse, Lily, set up a mobile nurses station right next to Remy so she could watch her all night. Currently, she doesn’t need to be watched 24/7. They were even able to close the incubator cover (which has had to remain open since Friday for accessibility). Her intubator was originally running at 100% and is now at 45%. She is currently getting 360 puffs of air per minute, opposed to 420 from the weekend. Her nitric oxide was reduced. Everything is heading in the right direction!