JOSHUA'S INCREDIBLE JOURNEY

I don't have the energy to write alot, but I want to give a real quick update. Joshua has been doing well. They were able to switch him from the high frequency ventilator back to the normal conventional ventilator. That was a step in the right direction. However, he has been having a problem with vomiting constantly. They kept increasing his feeds higher and higher and he kept throwing up more and more. I would watch him and he was constantly trying to fight back the vomit. We kept asking the doctor about putting him on reflux medicine, but he did not want to until he felt it was a really bad problem. Finally, 2 nights ago, Joshua vomited so bad it came out his mouth and out his nose and he started to choke on it. The nurse had to immediately suction out his lungs, thinking the vomit had gotten into them. She had to put a cathader down his nose and suction out all the vomit from there too. He was panicing so bad. It took him a very long time to calm down and feel like he could breath again. Fortunately this made the doctor start the reflux meds and they seemed to work instantly to control the vomiting issues. Very early this morning Joshua's breathing tube got plugged up with secretions from his lungs. They had to quickly pull it out and put a new tube down his throat. When they did this they found greenish secretions in his lungs. They took a culture of it and sent it to the lab. Greenish secretions mean infection. They accept white or yellow secretions as "safe", but anything else is worrisome. We will see it the culture grows any type of infection. Joshua is acting sick today. He has had a high temp throughout the day. They had to turn off the heat that his bed generates because that was keeping him way too hot. He is very sleepy and limp like. He will open his eyes but not for very long or very wide, and he ususally makes a painful face after opening them. Also, if I talk as I normally do to him he makes the painful face. It seems as if just the softness of my voice is aggitating him right now. He also had a higher than his normal carbon dioxide level today. We pray this does not become another setback. Pneumonia or any other lung infection could set Joshua back so far when he has just started to make such good progress. I also met with the occupational therapist today who has just started working with Joshua. She was going over everything with me. Pretty much all of his muscle and body postures are not forming correctly. His neck bones are stacked and this will cause him to have problems eating, his legs are bowing out instead of pulling in like they are supposed too and this will make it too hard for him to crawl and also makes it harder for digestion, his knee bones are starting to shift up into his quad muscles, his back muscles between his scapulars are too short from laying in the bed the way he does for so long, his shoulders are pushed up into his neck making it more difficult for him to breath, etc. He needs a lot of work with the therapist. She is confident that this is all reversable though. Also, Joshua's platelet issue still remains a problem. They are still significantly low and the doctors don't know exactly why. Today the doctor advised there are rare things that can consume platelets, but that they won't think of these things as effecting Joshua until later down the road when they see his platelet issue has not resolved itself. One thing the doctor mentioned was a blood clot. If Joshua of some reason has a blood clot in his body that could make all his platelets migrate to that area. Then when they take a sample of Joshua's blood to test the level of platelets there will be a low level in that sample because most of them went to the blood clot. Anyway, please keep Joshua in your prayers. He needs to get out of this hospital and home where he can be comfortable and relaxed. He is so big and so alert. He knows exactly what is going on. We keep saying how abnormal he is for a baby. He really seems like a little man that just cannot talk. You can read his face and expressions perfectly and can almost imagine what he is thinking. He is so cute and sweet and strong and beautiful and such a good, good, good boy!!

I posted some cute pictures. We had a nurse this week that used a boppy pillow to prop Joshua up to give him a break from laying down constantly. It was so awesome. He loved it. He was so cute and just kept looking all around. He has been doing well this week. He is finally back to doing as well as he was before the big carbon dioxide set back. It took a full two weeks to get him back to the ventilator settings he was on before that happened. They are increasing his feeds alot. He is approaching what they consider a full feed for him. He is at 38 mL's every three hours. He has been having some very bad gas :-( He gets very uncomfortable and it seems like it's constant. When he bears down he sometimes starts to throw up. He's been having a little problem with that too. It is hard to clean him because he is in that bed and has all the wires around him so he smells like spoiled formula. I feel so bad for him. Just holding him the other day gave me a headache breathing that smell for so long. Besides that he had all his IV's removed! They are hoping they do not have to put them back in. He is still having a problem with his platelets and blood. He still cannot make them on his own and he still has a long way to go before he can get off of the ventilator. Hopefully he will not face anymore setbacks! One more thing we have to pray strongly for is the avoidance of infection. There is some kind of persistent infection lingering in he NICU. They have made an entire nursery room into an isolation room. We pray that whatever this is goes away and that all the babies in the NICU, including Joshua, are spared from this.

Good morning everyone. I'll start by saying Joshua has been doing magnificent. He is such a precious little boy. He was 5 pounds even last night. He is so alert and calm. He is the most like a full term baby we have ever seen him. With that said, he still has signs of a possible infection. His body is creating immature white blood cells still, which is a sign that his mature ones are fighting something. There is possibility that this ongoing question of what the infection could be is the pocket of fluid behind Joshua's intestines in his abdomen. That fluid could be puss or something else that Joshua's body is trying to get rid of. This could be the explaination to why Joshua's platelets and white blood cell counts have been so abnormal for the last couple of months. They are repeating an ultrasound of his abdomen today to see if the fluid has changed at all. There may come a time when the doctors or surgeons decide they need to surgically go in and take care of this spot. They are apprehensive about doing so right now because the fluid is in an area that is not easy to access. To get to it they will have to open Joshua up and take out all his intestines to reach it. They aren't actually able to just stick a needle in his side and take a sample of it because it is kind of burried deep inside, behind everything. We pray that somehow the doctors will be able to find out what is going on inside Joshua, infection wise. We pray that Joshua can avoid this kind of surgery all together. We pray that this fluid spot is not the cause of Joshua's illness. It is such a shame because Joshua's belly has miraculously healed completely from the perforation, with no other complications. The surgeon even called him a miracle baby because of this. He is up to 25 mLs of formula every 3 hours and he is tolerating it well. They consider this a full feed for him and they are going to be discontinuing his liquid nutrition! Another thing we recently found out is that babies who are on the ventilator for a long period of time can sometimes loose their ability to learn to suck, swallow and breath all at the same time. Therefore, they will not be able to take a bottle. In these cases the babies have to go home with a feeding tube through their nose to their stomach. Joshua has been on the ventilator longer than most have been, and at this time we are not seeing the light at the end of the ventilator tunnel. SO, we pray even harder that God miraculously spares Joshua from forgetting how to eat. He will most likely come home with an oxygen tank and heart monitor, possibly among other things. We pray, for Joshua's sake, that he does not have to suffer through any more miserable foreign objects placed into his body after he comes home. He has been through quite an ordeal since his birth. It has been miserable, uncomfortable and never-ending for him, and I pray the time comes SOON that he will be able to experience this world as we do, without ongoing physical pain and discomfort!

We want to thank everyone for all the support and dedication you have shown to us through this amazing fundraiser. We heard how spectacular and unimaginable it was this weekend! We were amazed to hear how many people commited their time and effort to this benefit for us, and how many belongings were donated for this purpose. It means so much to us that we have family and friends who will stand behind us through the most difficult times. All of your help, love and support has truly reached us and is received with the utmost appreciation. We love you!

Benefit for premature baby set for this weekend at Collier fairgrounds

By Daily News staff

Originally published - 5:20 p.m., August 10, 2007
Updated - 7:08 p.m., August 10, 2007

A benefit for a premature baby born to two Collier County Sheriff's Office dispatchers is being held this weekend at the Collier County Fairgrounds.

Baby Joshua McFadden was born on June 1, weighing only 1 pound, 7 ounces, and measuring roughly 1 foot long. He's on a ventilator, has undergone several blood transfusions, heart surgery, and operations to repair a perforated bowel and damaged liver, according to fliers posted by family and friends.

The boy is the only child of dispatchers Nick and Melanie McFadden. The boy's mother has not returned to work yet.

A large yard sale to help the family will be held from 8 a.m. to 3 p.m. Saturday and Sunday at the fairgrounds, off Immokalee Road at 751 39th Ave. N.E., just past the Orangetree development.

For more information, call the fairgrounds at 455-1444.

Joshua seems to be feeling a little better today. He is doing very well with his oxygen requirements. He doesn't appear to be in as much discomfort as he had been. He has however started this new arm and leg jerking that makes us very uncomfortable. Since he has been born I have noticed Joshua make some jerky movements that are just related to his brain being very premature. The movements he is making now though are very different. His arms start to jolt so much that he literally hits himself in the face at times. This seems to happen when he is sleeping. It is rapid and it is very pronounced. We talked with Joshua's nurse and with the nurse practitioner and they feel confident that it is just jerky premature movements and not any type of seizure activity because Joshua should be old enough to not have to worry about brain bleeds anymore. That is a relief but I still worry because it just seems so abnormal for him and it is definitely something that has just started within the last couple of days. On another note, the bacteria in Joshua's blood culture is now identifying itself as a staph infection. They also sent the arterial IV into the lab to see if that was infected and it did also have a form of staph in it. They put Joshua back onto the antibiotic that fights this type of staph. We pray that this will actually rid Joshua of this threatening infection. Hopefully this was the actual cause of Joshua's recent setback. He got another transfusion today and a platelet transfusion because something just keeps wiping them out. He just doesn't seem to be able to regulate his blood levels on his own. The cause of the platelet depletion is still up in the air. The doctor still thinks it may be related to whatever damage is in his stomach from the perforation. Joshua started eating again. They started him slowly again at 9 mL's and now have him up to 19 m:L's. He had another eye exam and he had to get more eye drops and they didn't seem to effect him this time, which is a positive thing. His eyes have miraculously stayed the same and have not worsened any. Hopefully this will be the trend Joshua keeps. The eye doctor says babies at stage 2 of the eye disease can go home and have normal vision. Also, it can completely reverse itself at this stage. Since Joshua is eating more now they are able to start his diuretic again so his swelling is slowly going down. He is filling up his diapers like there is no tommorrow! I cant wait for his face to look normal again! They are also going back down on his liquid nutrition. We want to get off of this completely to give Joshua's liver the chance it needs to recover. Now we are playing this waiting game thing again with this infection. They are going to keep following it to make sure it's not showing in his blood anymore. They are also going to keep following his abdomen with ultrasound. The last ultrasound did not pick up the fluid pocket, but they want to keep checking just to be sure. That is pretty much it for now.

OH YEAH, JOSHUA WEIGHED 5 LBS 6 OZ LAST NIGHT! OF COURSE THAT IS WITH THE FLUID HE IS HOLDING, BUT HE IS GETTING BIG!! :-)

Good morning! The doctor just called me to give me an update. Yesterday they took some blood to send in for a culture to see if there is any infection in Joshua's body. The results came in this morning that the culture is growing something like a staff infection. The doctor says it could definitely just be a contaminant in the blood and not an actual infection inside Joshua. This is because Joshua has an arterial line in an arterial vein in his right wrist that has been there for a while. The doctor thinks this may very well be the source of contamination. He has been questioning for a couple of days now whether or not to take this line out. Leaving it in too long also poses a threat of giving Joshua an infection, but Joshua has been having so much blood drawn daily for all different testing that it is easier to get the samples from this line than it is to repeatedly keep sticking his heels. With this positive blood culture though, the doctor decided to take the line out today. He started antibiotics two days ago and is going to keep him on them for now as a precautionary measure. He is going to get another blood sample from Joshua's heel to send it in to be cultured to see if the same infection will still grow. This will help him to figure out if it was the line that was contaminated or if Joshua has an actual infection. They are going to be taking blood gases twice a day through his heel also, which show, among other things, the level of carbon dioxide in Joshua's body.The doctor is starting Joshua back on his feedings today. He is starting out small at 9 mL's. If Joshua seems to tolerate this for a couple days then the doctor will quickly increase the feedings to get Joshua back to where he was at before this all happened. We pray that his little tummy still works as well as it had been. Another thing we found out yesterday is that the sample they took from Joshua's lungs to culture came back showing a little bacterial infection. Last night you could actually hear Joshua coughing over and over and getting up a bunch of mucus that is in his lungs. He is still very irritable and you can tell he is miserable again. He just cannot be comfortable. His breathing is very rapid now and he has difficulty maintaining an efficient oxygen saturation. They are now giving him pretty regular doses of pain medicine to keep him as calm as they can. He is extremely swollen again because of the fluid nutrition. Every time we see him he is even more puffy. This is so heartbreaking because Joshua had close to a week of exceptional days. He had no swelling, he was making progress on his ventilator, he was becoming less sensitive to light, sound and touch, he was always alert and looked like a happy healthy baby. He was having little vomit episodes as his feedings were being increased before, so we were even giving him little sponge baths, which he handled remarkably! He would sit there and stare at us as we washed his hair and he just looked so comfortable. He had even gotten through his eye exam, which is normally torturous for the babies, without any pain medicine. We were literally amazed and extremely relieved by the progression we were seeing. But, like we've been told since the beginning, this is a journey that will take us one or two steps forward and in the next second take us five steps backward. It makes us wonder how we will ever make it to the finish line, but that is when we have to remind ourselves that God will not give us more than we can handle and he will get us out of here.

This is continuing my last update. I don't have the energy to get into the complete story but I will try to give you the highlights. To sum it up Joshua is doing much worse. He had some beautiful days and we thought we were on the road home, but Saturday night things changed suddenly. I left off with his carbon dioxide level in his blood. We were informed that morning that it was a level of 100. As I said before, they accept 70's and 80's for Joshua but feel those are too high so they will usually change his ventilator settings to give him more assistance, which allows him to exhale enough of the carbon dioxide he needs to be. Anyway, late last night we found out the actual level of carbon dioxide in his blood yesterday morning was 160. He was completely lethargic, completely off of his food because his gut stopped working and he was back on 100% fluid nutrition. This caused him to begin to swell up again. His stomach was distended and he had no bowel sounds. With the carbon dioxide level of 160 they had to make a drastic change in his ventilator settings. They gradually increased the pressure it was giving him significantly from 26 to 35 because each blood sample they took kept showing too high of a carbon dioxide level. They also raised his beats/breaths per minute that enter his lungs from 360 to 420. Even with this significant increase in ventilator settings, Joshua was still requiring almost 100% of his oxygen to be given to him by the machine. These changes were necessary though because a high level of carbon dioxide like Joshua had could be fatal. I could imagine if they think 80 is too high of a carbon dioxide level for Joshua that 160 is damn close to fatal, even though they would avoid confirming that suspicion. We read multiple sites online regarding high concentrations of carbon dioxide and it explains his lethargy and acute change. It says this high concentration is toxic to the body. It changes the bodies pH and produces something called Acidosis. It throws off the metabolic and chemical state of the body and this is what I believe is fatal. The doctor did say Joshua reached this state of Acidosis and thankfully, with the increase in the ventilator settings, Joshua's carbon dioxide level was able to come down and he is hopefully beginning to recover from this state of shock. Throughout everything he has been through I have never seen him look as sick as he does now. He started getting higher than normal temperatures. I would hold his hand and when I let it go his arm would just flop down onto the bed. He had no energy at all. Although you can most of the time tell he is uncomfortable, he is usually a very calm baby. However, after this occured Saturday, he has been turning red in the face and crying all day. The x-ray of his abdomen showed that his intestines are dilated, which means they are swollen and enlarged. They had to but a thick red rubber tube into his stomach and they put suction on the end of it to pull out any air that had built up inside him. Now that he is used to being fed every three hours he is probably very hungry since he has not been fed for 2 days. He constantly has spit bubbles coming out of his mouth which seems to frustrate him and now they are tainted with red blood. This was heartbreaking. The nurse wasn't sure if it was coming from his stomach or maybe his lips were possibly bleeding. When I tried to clean out his lips were literally glued together. It was like the skin was just peeling off and sticking together. Another thing Joshua has going against him is his liver. About a week ago the doctor told me if we have another major set-back in which we cannot feed Joshua, he is going to become concerned about Joshua's liver. Since Joshua is already showing signs of definite liver damage beause of being on the fluid nutrition for over 2 months now, stopping his feeds again and putting him back on the complete fluid was concerning to the doctor. He mentioned if this happens we could possibly reach a state of liver failure fairly quickly. Unfortunately, the halting of formula and the increase to full fluid has occured because of Joshua's significant change. We are now praying that they get him feeding again quickly and that Joshua's belly can handle it so that we can get back on track and spare his liver and continue to grow his lungs stronger. On top of all of this, there is something I forgot to mention that I am just remembering. Joshua has been getting weekly eye exams to make sure the blood vessels behind his retina aren't growing abnormally too rapidly. There are signs of abnormal development behind Joshua's retina, but they have not progressed to that stage yet that Joshua will need immediate laser surgery. That is wonderful news. If they do progress to the stage that surgery will be needed it is so serious that they do the surgery that very same day. This is because the retina can literally detach and cause the baby to be blind. We are very much supporters of this weekly eye examination. However, to do this exam the nurses have to administer eye drops to the babies to dilate their eyes every hour until the opthamologist gets there to perform the exams. Thursday the doctor was supposed to come for the weekly exam so they gave Joshua the drops all day. Then he called and said he had an emergency so he did not show up. A day later he was scheduled to come again to make up the missed exam. This was Saturday, so they gave him the eye drops all day again so the exam could be performed. The drops themselves are evidently uncomfortable for Joshua, and we've learned that it is also harmful to him too. One of the side effects of the eye drop, which is very rare, is the slowing of digestion. The doctor says he really feels like this aided in the suspension of Joshua's gut and the decrease in his pulmonary status. Because the gut stopped working and the inflamation arose it pushed up on the diaphragm which in turn pushed up on the lungs and shortened the lung fields. All of this could make it even more difficult for Joshua to breath and release carbon dioxide. Even though these are good explainations of what the cause of Joshua's sudden change could be, the surgeons were called in because it could still be that his intestine have the narrowing they have been suspecting they have and it has now caused an obstruction. They are watching him closely and this is definitely not ruled out yet. Even if he gets through this spell of sickness he may show signs of obstruction later on as his feedings resume and continue increasing. Then surgery will be needed. We are praying Joshua avoids further complications like he has just endured and that God has healed his little belly for good and the extensive surgery will be out of the question. Joshua definitely has been keeping his surgeons on their toes, but he continues to turn them away when they consider surgery. Thank God!

BY THE WAY, THIS TURNED OUT TO BE A FAIRLY "LONG" CONTINUATION.... I'M NOT ACTUALLY SURE HOW I THOUGHT I COULD SUM THIS UP QUICKLY :-)

Hello everyone. I haven't been updating as much as I would like too because we are very exhausted and so much has happened that our minds feel like moosh. Everything seems to blend into each other and we are carrying around so much information it becomes hard to pull out single facts. Anyway, Joshua has been having several very good days in a row. We started feeling a great deal of relief, and we were falsely starting to think we were going to be bringing Joshua home shortly. Unfortunately, this morning as Nick was on his way to work again, I called Joshua's nurse and asked for an update on him. She told me that Joshua did not have a very good night at all. For some reason he was not digesting any of his food. At 9pm last night he was fed 23 mL's of formula. At midnight they check to see how much he has not digested before feeding him his next 23 mL's. At this time Joshua had 18 mL's left in his stomach. In a perfect world all 23 mL's should have been digested already. Whenever babies have too high of a residual the nurse puts the formula back into their stomachs since their bodies have already put out the enzymes and work to start to digest that food already. So at midnight that is what they did. They gave Joshua back all 18 mL's he had still left in his stomach. Then at 3 o'clock in the morning they checked to see how much was left of that 18 and only 6 was remaining. So they fed him again but subracted 6 from the 23 mL's. At 6 AM they checked again to see how much he had left in his stomach before feeding him again and he again had a high residual. This time 19 mL's were left in his stomach so she threw it away instead of giving it back to him and they stopped his feeds all together. This is a major set back because Joshua's liver is becoming damaged from being on the fluids they have to give him to supplement the nutrients he should be getting from being fed fully. A full feed for Joshua's size would be around 37 mL's. So before this Joshua was pretty close to being at full feeds and getting completely off the fluids that are so damaging to his liver. Now because he is not going to be fed he will have to be primarily on those fluids. Along with the inability to digest his food he also was having a very difficult time breathing efficiently. His carbon dioxide levels were in the 100's when a normal level should be approximately 50-60's for him. This means he was not able to exhale enough of the carbon dioxide in his body. He was also extremely lethargic. Normally he is very active and alert, but last night and this morning he literally did not have the energy to move........TO BE CONTINUED...........

NEW PICTURES AND STORIES ADDED!! Sorry if there are spelling errors. I posted them quickly and I will edit when I get the chance. Love, Mel, Nick & Josh!

Joshua's feeds continued and they continued to increase. However, he had not been stooling. We were waiting and waiting for him to stool. I've never looked forward to finding a poopy diaper as much I did at this point. Finally one evening when we were changing him we got the surprise we were looking for. The nurse said it looked like what they call a "big boy poop". That was good news, but although you could not see any visible blood, there were traces of blood that showed up in it when it was tested. Since Joshua seemed to be handling his feeds well and his blood counts seemed to be okay, the doctor tried to take him off the antibiotics again. As they suspected his blood counts seemed to quickly fall low. The doctor wanted to see how low they would fall without letting them get dangerously low. He also sat down with the hematologist, radiologist, surgeon and two infectious disease doctors to talk about Joshua. They tried to go over everything that could possibly be causing Joshua's white blood cell and platelet counts fall, because they still could not put their finger on what it actually was. The hematologist of course said it was an infection of some sort, while the infectious disease specialists were leaning towards Joshua possibly having a problem with his bone marrow due to the extended length of antibiotics. I guess being on certain antibiotics for too long can in rare cases supress white blood cell formation. So the game plan was to keep Joshua off of antibiotics and see if he could slowly start producing white blood cells again. While watching those counts, Joshua's platelet count fell so low again that he had to be transfused yet another time. Still, we and the doctors continued to watch and wait. With all of this concern there was also the concern of Joshua's lungs. They didn't show any signs of worsening, but there were no signs of improvement either. The doctor explained that the only way for Joshua's lungs to heal was to get him eating the full amount of food he needs to be eating and take him off of the fluid he has been getting intravenously, ultimately causing liver damage and stunting adequate growth. For a baby Joshua's size he should be taking close to 37 mL's every 3 hours. I believe they had Joshua at 9 mL's every 3 hours and the doctor decided to start him on a sliding scale. Every third feed they increased the amount of food by 1 mL. Joshua seemed to be doing okay with this so the next day they changed it to every other feed increasing by 1 mL. Eventually when Joshua was at 12 mL's he started throwing up occasionally. This is a sign of not tolerating the feedings, so they started giving the food to him slowly over a 30 minute period. One night we were there and he was supposed to be increased to 15 mL's. Before every feeding they suck anything he has in his stomach out to measure how much is left in there. This is so that they can tell how his body is reacting to the food. Ideally there shouldn't be anything left over. His body should have digested it all already. Sometimes though, there is too much left over and they have to subtract that amount from the next feeding. They always replace the food they sucked out because Joshua's body has already put out the energy and enzymes it needed to start digesting that portion. So they put what they sucked out back in and then give him the appropriate amount of the next feeding. This night however, when the nurse sucked the remaining food from the previous feed out, there were specs of blood in it. She had to take it to the nurse practitioner and show her. They decided because of the vomiting and the blood that they would not push Joshua any further that night. They kept him at 14 mL's until the doctor came to see him and let him decide if he wanted to increase the feeds or not. The next morning he in fact did increase his feeds by 1 mL, but removed the sliding scale. Since then he has only been increasing by 1 mL daily. Although the occasional vomiting and higher amounts of left over food continue, it is crucial to Joshua's health to keep increasing the amount he is eating. It is scary because the increase in food could cause problems itself like NEC or a bowel obstruction that could be potentially serious and lead to surgery, but on the other hand, not feeding him and sitting in the same spot forever is damaging too and it does not give Joshua the opportunity he needs to get healthy and heal. I've never known a sword to be so sharp on both ends!

Hello everyone. Thank you for constantly keeping us in your thoughts and prayers. It has been an extremely exhausting couple of weeks. I've been trying to get myself to post an update for a while but I just could not find the energy. Anyway, a lot has happened since my last update. I left off with the nurse finding the visible blood in Joshua's stool. They stopped his feedings for 2 days and then resumed them at only 3 mLs every 3 hours. He had previously been at 12 mL's every 3 hours. Also, for about a month they had been putting Joshua on and then taking him off of antibiotics because his white blood cell and platelet counts were significantly low. The doctors tell us this is a sign of infection. Every time they would take Joshua off the antibiotics his counts would quickly deplete again so they would resume them right away. During the time the blood was found in Joshua's diaper he had been off of the antibiotics. Everything seemed to be going well so the doctor wanted to try to keep him off of them to try to avoid any complications that can arise from keeping Joshua on antibiotics for so long. I believe this time he only lasted two days without them before his blood counts were too low for comfort again. They started him on 2 different antibiotics this time. Because the cultures of his blood and the fluid in his lungs came back negative for infection, the doctors still could not pin point the source of Joshua's infection. They called the infectious disease doctors to come take a look at him. They studied Joshua's case and began rounding on him daily. They decided to change one of Joshua's antibiotics to a stronger, broader antibiotic. The doctors also started to entertain the idea that the low blood counts may be related to whatever occured inside Joshua's abdomen when he had the intestinal perforation. They took an x-ray of his abdomen and found that it seemed to look a little funny so the doctor ordered an ultrasound to be done. The results came back showing a pocket of fluid built up right outside his intestines where the tube had been previously placed to let the stool and mucus drain out after his perforation. They were not exactly sure what the fluid was though, so the doctor made sure the surgeon was aware of the findings. The doctor and surgeon thought there was a chance the fluid could possibly be an abcess or even a leak from possibly another perforation. Either of these cases would clearly make Joshua sick. However, the surgeon felt very strongly that neither of these things were taking place. He really did not believe this fluid build up was causing Joshua's infection signs. Just in case though, he felt they should repeat the ultrasound in a couple weeks to follow the spot and watch what it was doing. He felt that the spot may likely disappear on its own. If Joshua's symptoms started to worsen however, or he become much sicker, the surgeon would at that time start to think maybe the fluid is causing Joshua a problem. On the outside Joshua appeared healthy and beautiful. He always seems uncomfortable and sometimes in pain though, but that has been his norm since he was born. Who could like the feeling of 2 months worth of tubes down your throat, IV's in each limb, central lines through your arm into your heart, super glued temperature probes and sticky leads being peeled off your sensitive skin twice to three times a day, catheders going down your throat into your lungs to suction fluid, repeated heel sticks for blood samples, pounding on the chest daily to break up secretions in the lungs, swelling so much you cannot open your own eyes, and many other things that mommy can't think of right now??!! :-)

You know one of the most encouraging things about faith? It pleases God... That is why I want to encourage you: Walk by faith! Stop the plagued weariness of worry that you encourage within when the tests results come in. Relax! Learn to say. "Lord, this is Your battle. This is Your need that You've allowed me to trust You for. And I'm waiting for You to do it. I'm willing to wait as long as necessary for You to do the impossible."

Well today the doctor think the abdominal x-rays look okay. Of course though you wouldn't see NEC on an x-ray until it is very severe. But anyways, the doctor started his feedings again at only 3 mLs. Before this Joshua had been up to 12 mLs. The doctor wants to go slowly because of Joshua's stomach history and because of the blood in his stool. Also, his platelet counts are still lowering which makes the doctor think some kind of infection is still brewing possibly inside the abdomen. At this point we are just waiting to see what happens. They are taking blood again in the morning to see if any infection will show up this time. They are still giving him the pain medicine to keep him sleeping and it also helps to slow his breathing down. They do not want him to breath much at all. They want the new ventilator to do all the work because it's a softer form of ventilation and gives him more opportunity to heal. If Joshua breaths too much or too heavy they say it is like he is fighting against what the machine is trying to do and does not let him benefit from it like he should. His swelling is seeming to improve a little bit. He looks much better, except for his eyes. They are really puffy. His feet on the other hand are so cute and soft that I just can't wait to kiss them up!

Okay, this continues my last post. This morning after Nicholas left for work at about 5:30 am I called Joshua's nurse. This is a normal habit I've gotten into since Nicholas has been back to work. That is when the nurse told me about the visible blood in his stool. So after I hung up with her I called Nick's cell phone, but it just rang to his voicemail. I continued to call repeatedly with the same outcome, so then I started with the continuous text messages! Lol. I even went as far as going outside to see if I could catch him in the parking lot. Eventually I realized he forgot his cell phone in the room. I called his work and asked them to have him call me immediately once he arrived. Of all days to forget his phone! So unfortunately he had to drive all the way from Ft Myers to Naples and then back for no reason! It's seems laughable now, but he said his stomach was so sick the whole way home. Once he got to the hospital we went in to see the baby. This was still so early in the morning that the baby's doctor had not been there to round yet. When we were scrubbing in before seeing Joshua his nurse came up and started talking to us. I expressed our growing concern for NEC because of Joshua having some NEC symptoms and the now visible blood in his stool. She told us that our feelings were justifiable and that she understood. I asked her if she would hold off on giving him his 9 o'clock feeding until we spoke with the doctor and she was more than willing to do that. Unfortunately feeding the baby worsens NEC and is thought to be the cause of the infection. Also, his 9 o'clock feeding was going to be the new formula because they ran out of my breastmilk early this morning. Formula is worrisome to us because it is said that babies feeding on breastmilk are less likely to develop NEC, which to us means the chances of getting it are greater on formula. After scrubbing in and talking with the nurse we went right over to Joshua. When we first looked at him we noticed his breathing tubes were filled with water. I asked the Respiratory Therapist who is in training if the water is supposed to be there because we have never seen it like that before. She said is was just humidity and moisture. When Joshua's nurse came over she clearly did not agree. She immediately unhooked the tubes and shook all the water out of them. It was not supposed to have been there and it was going into his lungs. His oxygen saturation immediately began to fall into the 20's, which is very bad, and she had to suction the water out of him. Then she had to start giving him oxygen through the bag that she manually pumps. The actual Respiratory Therapist came over by that point and figured out that there was actually something wrong with the ventilator machine creating the water to flow where is wasn't supposed to be. Thankfully they got it fixed and everything was fine after that. The doctor came in shortly after this and fortunately Joshua had made another dirty diaper so the doctor was able to actually see the blood in the stool himself. He is also aware of our great concerns regarding NEC so I feel confident that he is going to be closely watching Joshua. After examining Joshua he spoke with the nurse and came back to speak with Nick and me. He told us that Joshua looks good. He still has a soft abdomen which is a good thing. The doctor does not feel that Joshua has NEC, but says that unfortunately you can just never be certain. So he is stopping the feedings for today to let his intestines rest and he will be ordering an abominal x-ray to check for any air lining the sides them just to be safe. He says he will order another for tomorrow and if they look good, since Joshua has mostly been tolerating his feedings, he will resume the feedings at that point. Because of the damage already occuring to Joshua's liver it is risky to stop his feeds unless he absolutely needs to. Everything is a double edged sword. The doctor says that if there is any restriction or narrowing in his intestine where he had the perforation, which there very well could be, the increase in food could possibly cause some kind of weakening and bleeding. This may be what is occuring. If this is the case and it becomes a problem Joshua will have to have that part of his bowel surgically removed. There is definitely something going on inside his little body causing the bleeding. We just have to wait to find out what it is. Sometimes that is the hardest part of this all. The suspense and the worry that you have to offer up to God is challenging. Doctor Lou told us yesterday that he bets we never thought we'd be getting a mini course on Neonatology. He was definitely right, and we definitely don't remember signing up for one!

I just called the hospital to get an update on Joshua. His primary nurse told me that she just changed his diaper and there is blood inside it. She is able to actually see the blood which is abnormal and means something is going on inside his stomach. She had to show it to the nurse practitioner since the doctor is not in yet. She is waiting to see what the nurse practitioner says about it. This week two babies have passed away from NEC. They say that when one baby gets NEC in a nursery, usually more babies start getting it. This causes speculation as to whether the disease is contagious. Please beg God to let Joshua avoid this! I'll keep everyone updated on what the doctor says.

Here are some of the things we learned about Joshua today. The doctor said he is at high risk for NEC. His stomach is weaker and probably has some inflammation due to his prior intestinal perforation. Because of that and his very high oxygen and ventilator requirements and the fact that he has to start formula tomorrow because I have no more breastmilk, puts him at greater risk for the NEC infection. I just keep praying for a miracle to bring my milk back and keep asking God to spare us from the possible loss of Joshua to that horrible disease. Another thing we found out is that Joshua has stage 1 Retinopothy of Prematurity. The blood vessels behind his retina are beginning to grow mildly abnormal. The opthamologist is coming to repeat exams every week. When a baby gets to stage 4 the abnormality of the blood vessels is so risky to their sight that they take them immediately to surgery. The retina can actually detach and then the child will be blind. At Joshua's gestational age his body can change very quickly so they are keeping a very close eye on this. Last night he had his second eye exam. They had to dialate his eyes and they used some kind of instrument to prye his eyes open. They said he really really did not like this! They almost had to stop the exam because he was so unhappy. When we got there after the exam his little eyes were all red and swollen. He had little bloody goobers in them, but at least he was calm by that point. He also went from 2 lbs 10 oz to 3 lbs and almost 2 oz in just a couple days. He is holding about 7 oz of fluid right now. He received another blood transfusion today and after that they are giving him a dose of diuretics to see if they can get some of that fluid out of his body. I was holding his head today and when I took my hand away my finger lines were actually indented into his head. He is requiring the machine to give him 100% oxygen. It cannot give him any more and even with that he is still having episodes where he is not getting enough oxygen to his blood. He sleeps all the time now. He looks comfortable but this is not like him. I'm hoping that he is just more comfortable with the new breathing machine and that it's not sick like symptoms. Anyway, I need to get more recent pictures on the site because he is just a total cutie! Pictures just do not do him justice. ;-)

Jesus Christ stands at the door. He holds out His hands that are scarred. His feet are pierced, and He bears in His body the marks of death. He says, I know the pressure you are under. I understand the strain. I know the unfair abuse. But let me offer you some encouragement. Don't be afraid. Look at life through My eyes! Stop letting life intimidate you! Stop running scared. Trust Me!

The other day Joshua's surgeon for his abdomen came in and as he was walking passed us to go see another baby and he called Joshua a "Miracle Baby"! That is exactly what he is. In the last week we have watched two babies die from intestinal perforations and NEC. Our hearts go out to those mothers, fathers and families. I can only imagine what they are going through. I find myself fighting back the tears just seeing them and their families. This is unlike anything we could have ever imagined existed in this world. I used to think a preemie was just a smaller baby you had to take home with you. But, it is a long roller coaster of emotions and challenges. These precious little babies are so strong and miraculous. They don't deserve all this pain and suffering but they are so accepting and willing to take it. It is amazing. Now back to Joshua. His body is starting to swell up for some reason. They say he is retaining fluid but they say it seems normal. Yesterday his hand was so swollen that it looked like it was going to pop. It was really bothering me so I asked two different nurse practitioners to look at it. Neither were concerned. They may put him back on a diuretic to release the fluid he is holding though. They are a little apprehensive to do this because the last time they had him on diuretics they depleted his sodium count and they had to discontinue it. Everyday is something new and every treatment has a side effect. I used to be first in line for the roller coaster at the amusement park, but this is one I hope shuts down.

Joshua has been having such a difficulty time breathing and maintaining a good oxygen saturation. His lungs have been retaining so much fluid and it is all you can see on his x-rays. He has Pulmonary Interstitial Emphysema which is lung damage from the ventilator that could lead to his lungs collapsing. This continued to worsen so the doctors switched him to an unconventional ventilator that is said to hopefully help his lungs heal better. They call this the "rescue" ventilator. That word is heart-stopping. That is exactly what happened to me when I walked into his room yesterday and saw him hooked up to it. I know it's a good thing because it is going to help him to heal, and I was actually questioning why they weren't putting him on this ventilator sooner, but when I saw him on it my heart stopped. There are days when you think everything is going okay and he is going to come home no questions asked and then there are days you panic and worry and pray and your heart breaks for him. Yesterday was one of those days and today as well. This ventilator puts 360 vibrated pressure swirls into his lungs every minute. It makes a loud and very annoying noise and shakes his whole bed and body. Joshua is very sensitive to light, noise and touch. This has been awful for him. He is so restless and uncomfortable that they had to start giving him a pain medicine to attempt to relax him. The dosage they started him on didn't help him like they needed it to so they had to increase it. Two nights ago his lungs were so tight that he felt like he couldn't breath. He kept pushing his head back to open his airway and you could see the panic on his face. His eyes kept opening so wide and he kept gasping for air. All I wanted to do was cry, but instead I just held his face and talk to him, trying to calm him. He has literally been so miserable that they have to cover his whole head with a blanket to block as much light and noise as they can. It seems to help keep him settled for a little bit at least. So now Joshua has to get well enough to come off this new ventilator and go back on the other conventional ventilator. Then he has to work his way off that one and back onto the CPAP. From the CPAP he will go to a nasal canula that puts oxygen in his nose. They say when babies lungs worsen the way Joshua's have that it is a very long time before they can come off the ventilators. We are praying for another miracle!