Stories

DAD SAVES US AGAIN - July 15th

Not only did Nicholas save my and Joshua's lives by insisting that I call the doctor on May 29th, but he helped save the hospital and everyone in it from what could have been a serious situation.  During the staff in the NICU's shift change we are not allowed to go in.  It takes about an hour, so today we were sitting on the second floor relaxing and using the internet while we waited.  It's Sunday and it's the evening so there are literally no visitors.  We always joke about how strange it is that everyone seems to quickly forgets about their ill loved ones when it's the weekend or holiday.  Anyway, while we were sitting in a little waiting area we started to notice a funny smell.  I just ignored it because I figured it was nothing to worry about or if it was that somebody else would take care of it.  Kind of foolish of me, but Nick being the investigator that he is started searching for the problem.  The odor began to get stronger and stronger and eventually started to smell like strong smoke.  He hunted down a nurse and told her what was going on and she reported it right away.  The fire deptartment was here in no time.  It turns out that there was some kind of electrical fire.  I know who Josh is going to feel safest with that's for sure!  ;-) 

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JOSHUA'S CURRENT WEEK - July 14th

Since July 4th Joshua has been dealing with a lot.  He has been a sick little guy.  The early morning of July 5th the Respiratory Therapist had to put Joshua back onto the ventilator.  His carbon dioxide levels in his body were too high while he was on the CPAP.  He was so exhausted that he just couldn't release enough of it on his own.  So, the doctor ordered he be put back on the ventilator, which is a step backwards.  Also, he started showing that he had an infection.  He started having nightly temperatures of over 100 degrees.  This, along with the exhaustion from working so hard on the CPAP, had him completely lathargic.  I think he actually slept for 3 straight days.  Joshua's mature white blood cells had been completely used up to fight the infection in his body.  His bone marrow had actually started to produce a high amount of immature white blood cells called "bands" to continue to fight the infection.  His platelet count also becgan to fall.  They sent in cultures of his blood to the lab to see if the infection would grow and show them what was going on in his body.  Nothing grew though, indicating there was no infection in his blood.  However, his blood counts were proving otherwise.  The immature bands continued to multiply.  The doctor could not determine the source of the infection so they started to experiment a little bit.  They took a culture from his lungs to see if there was any infection in there since his lungs have been filling with thick mucas and fluid.  It is very uncomfortable for him.  He sounds and feels like he has pnemonia.  The Respiratory Therapist has to come suction out the junk in his lungs about every half hour.  They also took the PICC line out.  This is a central line that runs through the artery in his arm all the way to his heart.  They say that could be a major source of infection and in case that was the cause they wanted to get it out.  The same night they removed that line they put a new one into the other arm.  That line is where they put all his medications, antibiotics, diuretics, nutrients etc.  Even after this his blood counts still indicated there was some kind of infection roaming around inside him.  The doctor said it could be an infection in his abdomen from where the stool and fluids had leaked out from his intestines.  Without really determining where or what the infection is or was, his band count started to imporve.  They also gave Joshua a platelet transfusion and he was able to keep his new platelet count up, which is good.  But, doctor Congay says we are still not in the clear.  He started him on a broad spectrum antibiotic to try to cover as many things he could in hopes to knock out the infection.  He says even though it may look like the infection is under control, once the antibiotics run their coarse Joshua could start showing the same signs of infection again.  Sometimes it's just a neverending cycle where the infection never really gets killed and once the antibiotics are not suppressing it the infection can return.  Unfortunately this was not his only problem.  Joshua developed something called Pulmonary Interstisial Emphysema.  This was caused by being on the ventilator.  The ventilator actually damaged his lungs.  With each forceful breath the ventilator gives the baby it also causes little tears in their lung tissue. The Aveoli are also effected.  Aveoli in our lungs look like little tree branches.  In preemie lungs they are not developed yet so they look like little buds instead of branches.  The buds in Joshua's lungs became swollen or enlarged from the ventilator.  When this happens the Aveoli can actually burst and the baby's lung or lungs will collapse.  Fortunately, Joshua's lungs have not collapsed, but they have been filling up with fluid so thick that his lungs are not visible on an x-ray.  He has been in a lot of discomfort.  We watch him gasping for air, feeling like he cannot breath.  They talk about him possibly having to be put on a different form of ventilator that is unconventional.  They say that even though this is another step in the wrong direction it will help his lungs to heal from the damage that has already been done by the conventional ventilator.  Aside from worrying about all of that, we are also very concerned about his stomach.  The doctor is slowly increasing the amount Joshua is being fed even though the surgeons are very apprehensive because of NEC, which is life threatening.  Feeding a preemie baby unfortunately can cause this infection that literally eats the intestines away and can quickly lead to the babies death.  Joshua started out getting 5 mLs of breastmilk.  Then he moved to 7 then 9 and now his is at 11.  They feed him this amount every three hours.  I have been with him three times when he has thrown some of it up and other times he still has almost the whole amount still left in his stomach by the next feeding time.  For the most part though he is tolerating the feedings well.  It is just extremely scary.  We just have to keep reminding ourselves to keep praying and begging God's Will to be sending Joshua home healthy!               

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JOSHUA GETS MOMMY AND DADDY - July 13th

We have a little stinker on our hands.  Recently, while changing Joshua's diaper, he decides to take a number two!  :-)  I think he waits specifically until mommy or daddy get there to change him before he'll do his business.  Maybe it's his way of getting us to take more time with him.  Anyways, the other day we were changing his diaper and once again he began to poop on the clean diaper we just stuck under his tooshie, so I got a new diaper and began to clean him up.  Then all of a sudden I saw this line inside his incubator.  I thought my eye was acting up because I still haven't regained full vision in it since being in the hospital.  I figured I was seeing a glare until I noticed drips coming from the ceiling of the incubator.  Joshua surely showed us what he is capable of!  We ended up having to change all his bedding because he soaked himself, us and the blankets.  Daddy had to clean the dripping pee pee off the ceiling.  Neither of us minded though.  I keep promising him that once he comes home I'll never leave him in a dirty diaper.  He literally hates it.  You can tell when he is wet because he will push his little bottom into the air.  He is strong and he is stubborn.  That is why he is still here.  He is the greatest fighter I know.  My heart breaks for him.  He puts up will hourly torture every day.  I can not imagine having that much strength.  It's been 44 days today.  I know I was begging to be released from the hospital after only 11 days.  But he will get through this and his life will be even more special than we could ever have imagined.  It already is!  

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JOSHUA'S UPDATE - JULY 4TH

Hello!   It's baby Joshua.   I need to send a huge thank you to everyone for praying so much for me!   God has already given me the treasure of having such wonderful and dedicated people in my life.   All of your prayers have really reached God and have helped me to stay strong through all these painful and challenging things that keep happening to me.   This has been a very hard and long month, but as tough as it is, I am even tougher. I'd rather still be comfy inside mommy, but as long as she is safe I won't complain.   I am a strong-willed boy and I am determined to make my way out of this little box and to my home where I belong!

I thought I'd give the next update because mom and dad have been so busy!   They have been staying at The Ronald McDonald House next to the hospital so they can be near me.   Daddy had to go back to work two weeks ago.   I miss him during the day, but he comes to see me every evening when he gets home.   Mommy tries to stay right next to my incubator for as long as she can during the day in between her pumping.   She worries that I'll have to be fed formula if her pumping doesn't start working soon, so it has been consuming her days.   I'm never lonely though.   Whenever mommy and daddy can't be with me baby Zachary and baby Jocelyn come to visit.   They say God doesn't want me to go play with them yet, so instead they just lie next to me and pray.   We pray for all the born and unborn babies in the world, and then we pray for our mommies and daddies.   We pray that they can be as strong as the three of us are, and I think it works!

Today I am 1 month and 3 days old!   I have made it a long way, but I am still struggling with some things that really scare mommy and daddy.   I'll get to that later though. First I want to tell you the good news.   I am no longer on the ventilator!   Three days ago the nurses took the machine away that was pushing heavy spurts of pressure into my lungs through the tube that was in my throat.   Basically, the machine was giving me 30 breaths per minute through the tube.   I was able to take my own breaths in between those 30, but mine were not efficient enough, so they had to keep the machine on.   Now Dr. Sultan thinks I'm a big enough boy to be on the CPAP, which only puts a steady flow of oxygenated pressure through my nose.   Mommy says it's my big boy gear.   Anyway, I am taking all the breaths myself now and there is no more tube down my throat!!   Let me tell you though, it is hard work!   Mom and dad get to hear me cry now because the tube is not blocking my vocal cords anymore.   They think it is so cute and sweet but at the same time it breaks their hearts to actually hear me in pain now.   

That's the good news, but let me back up a little bit.   I'll go back to before I was put on the CPAP.   When I was first born I was breathing on the ventilator pretty well.   Then about 2 weeks ago I had a sudden change.   I started requiring almost 100% oxygen from the ventilator, which is very bad.   Mom and dad were told that when babies are born as early as I was they will most likely have something called Respiratory Distress Syndrome, and I have it.   I started to have a very hard time breathing while I was on the ventilator.   A lot of fluid was retaining in my lungs causing me to require extra oxygen support. When you looked at my chest x-rays all you could see was a white haze all the way across the film from the fluid.   You could not visualize my lung fields.   In addition to the fluid, the ventilator was damaging my lungs little by little every day because of the forceful pressure it was pushing in.   Dr. Sultan says it actually causes little tears in the lung tissue, which was probably what was happening to me.   Too little oxygen was getting to my blood unless the machine was pretty much giving me the maximum amount of oxygen it could. I could not be comfortable otherwise, and my oxygen saturation level would fall too low.   Instead of progressing on the ventilator I was regressing.   

Because of the difficulty I was having, Dr. Sultan decided to start me on two different breathing treatments.   It is just like what an asthma patient would use.   The only difference is they had to puff it through my breathing tube.   The respiratory therapist gave me these treatments for three days in a row but Dr. Sultan had to discontinue them because they kept making my heart rate sky rocket.   Dr. Sultan also started me on a 7 day steroid to help take me off of my blood pressure medicine because it can severely damage my brain.   That was a good thing because it also helped my lungs, and it helped to get me onto the CPAP instead of the ventilator.   Unfortunately though, the steroid made me very agitated and I was unable to relax or lay comfortably.   It just made my body feel so strange, and I started to get extremely sensitive to everything!   

But that's enough about my respiratory problems.   There is more good news about my belly.   I'm sure you all remember that I had an intestinal perforation.   Boy was that miserable, but every day Dr. Monn or Dr. Hoy came to look at me and they felt it was healing!   In most every case of preemie babies with perforations the baby must have emergency surgery to remove the damaged part of the intestine.   The surgeon will then bring the reconnected intestine to the outside of the body to let it heal.   The bowels then move through to a colostomy bag until the intestine heals and is put back into the baby's body.   Every day my surgeons came in thinking this is what I was going to have to have done, but I proved them wrong!   They kept saying my stomach looked really good.   Before this it was bruised all the way from my chest to my groin. Mom and dad said it looked like I was punched in the stomach.   As well as looking better, my stomach was soft and had not grown rapidly, which is a very good sign.   I had convinced my surgeons that the hole in my intestine was just a single perforation that had healed on its own and that the drain they put into my side had worked to drain all of the stool and emissions out that had leaked inside my body.   The best part is they felt strongly that no infections had started from this.   The only thing they said they were waiting to see was my first poop.   The doctor stopped my feedings the day before my intestine perforated so I had not eaten in nearly a month.   They were substituting my food with sugary nutrients through an IV.   The nurses thought there was no way I was going to poop since I had not been eating, but the surgeons said I should still be able to pass something because poop is made up of food and dead cells that sloth off the side of your intestines.   Anyway, everyone was just waiting and waiting to see a surprise in my diaper.   I just was not ready though.   Eventually Dr. Monn said that even without me having my first poop he still felt that I was healed up.   Just to be sure though, he wanted an ultrasound of my abdomen to be done the next morning.   He told mommy that if the ultrasound showed a collection or build up of something in one generalized area indicating an obstruction that surgery would be emergent.   Of course mommy and daddy were worried, and I wasn't particularly thrilled about having another surgery either.   So, that night when they left to go home and sleep I worked my hardest to put that surprise in my diaper!   My favorite nurse, Mandy, was so excited that she wanted to save the diaper so mommy and daddy could see it.   Mommy was bummed that she didn't actually do it.   With the great news about me passing my "meconium plug" and the ultrasound coming back without any findings, Dr. Monn was even more convinced that I was healed up.   To make sure that food would pass all the way through me safely he ordered a barium contrast study.   They had to put radioactive barium into my stomach and watch it travel through my intestines with x-rays.   Dr. Monn was looking for any blockages or narrowing of my intestine where the perforation had been.   When that study was done and came back good Dr. Monn was certain that it was safe to begin feeding me again.   He told my doctor that he didn't want me getting any more that five milliliters every three hours.   My stomach, even though healed, was still very weak from all that I had been through and Dr. Monn wanted to be sure they did everything to prevent me from getting Necrotizing Enterocolitis, which is an intestinal infection that can quickly kill babies.   So now I am getting a little bit of food and my liver can actually start working and recovering from the damage of not being fed.   I definitely like my food better than IV nutrients.   The best part is that mommy and daddy get to feed me by holding the syringe that drips the food into my feeding tube!

Other than my stomach and lung issues I'm doing pretty well.   I get weekly if not daily blood transfusions with Aunt Sarah's blood, but at least I know I'm getting the best blood around.   I've had two cranial ultrasounds.   One of them showed a cyst in my brain but Dr. Sultan said it's nothing to worry about at this time.   He says that more than half of us probably have the same type of cyst in our brains but we just don't know about it because we've never had our brains scanned.   He wants to do a repeat ultrasound though just to make sure it hasn't changed in any way or become something they should be concerned about.   I also had an ultrasound of my kidneys done that showed something a little abnormal.  At the end of each kidney you have a little sac that collects the urine before sending it down the ureter into the bladder.   One of my sacs is enlarged, or "dilated" as Dr. Sultan says.   He says that could mean there is an obstruction in my ureter preventing all the urine to pass through to my bladder as it should.   He doesn't think it's anything to worry about though because I am very good at filling up my diaper!   He feels everything is working properly, but he will keep checking just to make sure.   

Since I've been on the CPAP I've been having what they call Brady episodes.   I am getting too tired to breathe sometimes so I just stop breathing and my heart rate begins to significantly drop.   The nurse says that I just forget to breath, but really it's just because I am so tired.   This really scares mommy and daddy.   I wish they could know that I'll start breathing again.   I just need a little bit of a break.   The nurse has to rub my back really hard or tickle my little foot to remind me to breath.   It really bugs me so I usually just fight through my weakness and start breathing again.   Another thing about this CPAP is that it is giving me a major bloody nose.   Sometimes when mom and dad come in I have dried blood all over my upper lip.   Mom thinks it is really sad looking.   She wants to clean my nose and face for me.   They have to suction my nose out too with a catheter because all the blood is drying and clumping up making it too difficult of the oxygenated pressure to make it into my lungs.   The suctioning really hurts.   It even causes more bloody noses.   My little nose used to look like daddy's but now it looks like a pig nose because I have no cartilage yet and the nose piece has reshaped it.

Anyway, it's the 4 ^th of July today.   Mom and dad have been sitting in the NICU all day with me.   I hope they at least go to watch the fireworks.   I'm getting used to being inside my giraffe incubator so I don't mind if they leave for a while.   I always hear the nurses talking with mommy about skin to skin care.   That means mommy gets to hold me with my skin to her skin!   I can't wait until that day.   But for now I'm just relaxing with my new CPAP.   Doing all of my breathing myself is really tiring me out.   All I do is nap now.   I'll have to see the fireworks next year because right now all I want to do is count sheep!   Good night.   Sending my love to everyone!     

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JOSHUA NEEDS EXTRA PRAYERS

We just found out today that Joshua has a bowel perforation.  This caused air to seep through a hole in his intestine and fill the space below his diaphragm.  Also, his stool is leaking through the hole and entering his body.  The doctor called in a surgeon who put a suction tube into the side of Joshua's abdomen.  This is removing the air and stool from his body.  His stomach is very bruised from his chest to his groin.  He has an IV in both arms and another in one leg.  They are putting a PIC line into his other leg.  They gave him pain medicine so he is sleeping through it.  He seems to be doing a little better now, but the next 2 days are critical.  If the perforation is just a single hole and Joshua can get through the next 2 days the docotrs may not need to do anything else.  He may heal on his own.   However, if the leaking of the stool causes and infection they may need to go in and surgically remove the perforated part of the intestine.  In some cases a colostomy bag is necessary.  The doctors are concerned about the life threatening disease called NEC developing.  They don't know how it will turn out but the surgeon says we'll know within a couple days which route they will have to take.  On the positive side, his air pressure is being lowered which is a great thing.  His blood pressure is improving and they are lowering his medicine for it and that is great.  His brain scan came back normal.  The doctor immediately started him on 3 different antibiotics after he was born and that will hopefully help prevent the infection we pray he does not get.  Every day is a gamble.  We just have to patiently wait for the outcome.  Until then, pray pray pray!!!  Thanks everyone for caring for my little trooper!

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JOSHUA JOSEPH MCFADDEN - June 6th JOSHUA JOSEPH MCFADDEN - JUNE 1, 2007 - 1 LB 7 OZ 12.5 INCHES Our little angel was born on June 1, 2007 weighing 1 lb 7 oz and measuring 12.5 inches.  He has his daddys nose and his mommys lips and lots of little hair (go figure!).   Everything about him is perfect!  We've been able to change his diaper already.  He is picky and he fusses and squirms when it's dirty.  He loves to move his big feet and hands all over.  Joshua is a fighter.  He had jaundice, he is on a ventilator and he has already had 2 blood transfusions.  The doctors found that he has a heart murmor and an open chamber.  His blood pressure is low which causes him not to tolerate his feedings.  Although these are scary complications there is a positive to every one of them.  He had jaundice BUT they just removed him from the photo therapy light because his levels have improved.  He's on a ventilator BUT he is on a very low pressure which means he is doing most of the work himself!  He has had 2 blood transfusions BUT this is expected for babies this young.  He handles the transfusions well and eventually he'll be able to make the blood himself and will no longer need the transfusions!  He has a heart murmor and an open chamber BUT if he was still in my womb this would still be the case.  It is not effecting his oxygen saturation at this time so the doctor says it is not a problem right now!!  His blood pressure is low BUT they are slowly weening him off of the blood pressure medicines!  He cannot tolerate his feedings right now BUT he should be able to when his blood pressure improves and his abdomen is still soft so they are not worried about the life threatening disease called NEC.  Other than that, the doctors have him on 3 different antibiotics to make sure he doesn't get specific infections.  He has a long long road ahead of him, but he is strong and has amazing family and friends who are praying for him and will help to bring him home to us!  He is blessed and so are we!

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