Stories

DECEMBER 10TH

SAINT NICU

Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.


Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...


When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.


Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.


More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"


Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.


As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.


He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.


And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."


Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

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NOVEMBER 28TH - I forgot to mention...

I forgot to include in my last update that Joshua's last weigh in was 8 pounds and 8 ounces.  That was last week.  Every day I wake up and he looks a little bit older and he feels a little bit heavier and more solid.  He is getting very strong.  When I put his little feet on the floor he locks his legs and practically stands up while I give him a little support.  Even after all those months in the hospital I find myself forgetting that he was a preemie.  God is truly wonderful.  :)

PICTURE NEWS....

1. I added lots of new pictures!

2. You can now add your comments to any or all of the pictures!!

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NOVEMBER 28TH - Happy Holidays!!!

Joshua is AMAZING!  He is such a little handful.  To my surprise, it is even more challenging now that we are home to find the time to post updates than it was when Joshua was in the hospital.  I guess that is a blessing though.  Anyway, as my mother-in-law has always said, Joshua has proven to be amazingly resilient!  It took him all but a day and a half after leaving the hospital to start doing everything on his own.  I left the feeding tube out of his nose for one night and he showed me that was all he needed.  He started eating so much that Nick and I were mind-boggled.  We wondered how all that formula could possibly fit into his little stomach.  He is eating so much that the GI doctor is actually limiting the amount he takes in every day.  Of course Joshua objects to that and he makes sure you know it!  Thank God we were not convinced to go through with the surgery to place a feeding tube into Joshua's stomach.  How uneccesary that would have been!  The second we took him away from the rigid schedules and unrealistic demands of the hospital and stopped all the invasive things we had to do to him, he became just as normal as any full term baby.  He is now doing what he has to do for himself and he is on his own schedule.  His suck and swallow has become perfected.  His jaundice coloring is much improved!  He has the most delightful personality!  Having all sisters in my family I haven't had much experience with little boys, but I imagine Joshua is among the cutest and sweetest of them!  He continues to impress us every day.  He has become very social.  He gets very lonely and his face lights up when we come over and tlak to him.  The camera just cannot capture how remarkable he is.  Right now, however, he is sitting next to me with a big smile on his face while he is continuously burping and farting like a little man!  But we love it.  Last week we took him for a developmental assessment and the nurse practitioner called him a show off.  She asked him if he was really a preemie because she was so impressed with how well he is doing.  I must go now though because our little gift is needing some attention.  I've added a bunch of pictures to my myspace account because that program loads the pictures super fast.  It is much more time consuming and difficult to add them to this site but I will keep trying my best.  In the meantime you can go on our myspace account whenever you'd like, if you can, and view the most recent pictures of our big boy!  

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NOVEMBER 10TH - Joshua is HOME

After much struggle we managed to get Joshua home where he belongs!  Wednesday afternoon we packed him up for his first car ride.  The anxiety kicked into high gear.  Once we had him all to ourselves we began to panic over whether or not he was getting enough oxygen and we couldn't take our eyes off of him.  He came home with an Nasal Gastric Tube for feedings at night.  Nick and I had to learn how to insert it into his nose and down to his stomach.  Since being home it doesn't seem like Joshua is going to need the feeding tube for much longer.  He is behaving like a healthy and strong boy.  His eating is AMAZING!  He went from eating only half a bottle in the hospital to eating over a full bottle and a half each feeding at home.  Home is exactly what Joshua needed to thrive and become a regular baby.  Thank you so much for all of the prayers you all have offered up for our Miracle Boy.  He is truly that, and we believe those prayers aided in that!  We really have our hands full now.  I have posted lots of pictures on my myspace page because it loads them much quicker than Joshua's website.  Feel free to check them out.  I will try my best to keep posting updates and pictures on Joshua's page as HE allows me too.  :)   He was blessed with his mommy's stubborness which I like to believe helped him fight so hard!

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OCTOBER 22ND - Joshua is sick

Joshua's abnormal vomiting since his surgery has proven to be resulting from something.  Since the doctors had been refusing to do an x-ray the surgeon decided to order one this morning after talking with Joshua's primary nurse.  As we suspected the x-ray DID show something even though the doctors insisted it wouldn't.  This morning at 6am the nurse practitioner called us and told us that Joshua's intestines are very dilated.  The nurse I spoke to after arriving to the hospital described the x-ray as "quite the film" and the doctor said it was "very impressive".  This gives us an idea of what the "very" means in what they say is "very dilated".  After seeing the x-ray they gave it to the doctor who decided to stop Joshua's feedings.  They put in another IV and started him back on fluids and fats.  These are the same causes of Joshua's liver damage.  If he is unable to be fed long term this may cause him more damage.  The surgeon came to look at him today also and he said they have to figure out what is causing the dilation.  Usually, dilation means there is an obstruction in the bowel.  Since Joshua is passing gas and stool and is digesting whatever food he is able to keep down it doesn't seem like it is a complete blockage.  However, there could be a kink in the intestine or a narrowing or even a build up of scar tissue from his previous intestinal damage that has now become very narrow due to the surgery.  They are doing contrast studies tomorrow to watch the dye pass through the intestine to discover if any of these be the case.  All of these situations come with a great opportunity for another major surgery.  I also asked for a GI specialist to come examine Joshua.  I believe we will be finding out tomorrow if Joshua will have to endure another horrible surgery.  Whatever the outcome, we will have some kind of an idea after the study.  He is absolutely miserable already.  They had to put a thick red rubber tube down his throat and into his stomach today in hopes of sucking some of the air out of his intestines.  He couldn't keep the tube down without constantly gagging so they ended up putting it down his nose.  He is starving and crying constantly.  He has a million wires connected to him again.  He has little pokes all over his body from where they tried to get the IV in this morning and were not successful.  He needs lots of prayers.  A boy as precious and as innocent as Joshua does not deserve all this torture.  It is never-ending!  I know God doesn't give us more than we can handle.  I guess he hasn't been hearing me tell him I'm done, no more, I can't handle this another minute!

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OCTOBER 18TH

Joshua's hernia surgery proved to be a greater setback than they had warned us it would be.  Before surgery the surgeon told us he didn't want to do the surgery until Joshua was technically ready to go home and eating all his bottles as if he was to be discharged.  Now we see why he kept saying that.  We don't understand why the Neonatologist pushed for the surgery when Joshua wasn't to the point yet.  Although he was doing very well taking every other bottle like they were giving him, he definitely wasn't good enough to be discharged.  Most times he would finish the whole thing if you could just get his burps out, but he was only taking every other bottle and sometimes there was a little bit left that he wouldn't take.  Now, after surgery, everything has changed.  He can no longer take a full bottle.  They even started him out after surgery with only half a bottle and he still couldn't finish it.  Right now he is only taking a bottle by mouth every six hours.  He needs to be taking a bottle by mouth every three hours.  Every time he takes a bottle now he vomits.  Sometimes more than once during each feeding.  Many times when he is not being fed, and when he is not throwing up, he is acting like he is trying not to throw up.  Last night he pretty much threw up the entire 60 mLs he worked so hard to drink.  This is a new thing after surgery.  They have increased his reflux medicines and that hasn't helped.  It's been almost a week since his surgery and this little problem seems to be getting bigger not smaller.  Joshua has really come so far and has been showing great signs of healing.  It is this feeding issue that will keep him in the hospital and open to all the illness and disease that is spread around.  He is not safe until he gets out of there and what seems like a trivial problem could technically set him up for greater hurdles.  Please keep Joshua in your prayers.  Ask that his belly be healed and that he doesn't suffer from any complications related to this past surgery.  Most importantly, pray that Joshua be strong enough to take all his bottles so he can come home soon where we WILL keep him as safe and protected from illness as we possibly can.

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OCTOBER 13TH

Yesterday, immediately after the surgery, we had a little scare.  When the surgeon came out to tell us how it went he said that Joshua's lungs have been so damaged throughout his life that they had some trouble during surgery.  He said the anesthesiologist had to play with some things during the surgery to keep Joshua doing okay.  Then he said they were going to keep Joshua ventilated and sedated.  They would take him back to the ICU and let him slowly wake up throughout the day.  He hoped they would be able to take him off the respirator after 24 hours.  As you can imagine this was scary news.  However, as soon as they wheeled Joshua out of the operating room to take him back to the ICU his little arm shot right up into the air.  He was already awake and very upset to have that tube back in his throat.  By the time we got to the ICU Joshua was practically pulling the tube out himself so the doctor said to go ahead and take it out and see how he does.  He did remarkable after that! 

Last night we had a little bit of a scare too.  The night before the surgery they had to hold Joshua's feedings after midnight.  After the surgery they restarted them at 3pm.  They only started him off with 15 mLs of food with the intention of inceasing him to full feeds slowly throughout the day and night.  However,  before his second feeding at 6pm he had 20 mLs still left in his stomach so they had to hold the 6pm feeding.  By his 9pm feeding there was no food left in his stomach, which is a good thing, but the nurse pulled out a bunch of very dark fluid.  This is where we started to worry.  They thought it might have been blood and that would have been very bad.  The nurse ended up calling the nurse practitioner to come and look at it.  She thought that the feeding tube was probably placed too low and that the fluid was bile from his intestine.  Sure enough, after they pulled the feeding tube up a little bit, Joshua started to digest all his food and no more bile was coming up. The last time I checked on him was 5am and she said he was doing very well.  We pray he continues to do so and fully recover from this surgery quickly! 

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OCTOBER 12TH

Joshua did wonderful "after" his surgery.  It took a little longer than expected though.  The surgeon said that since Joshua's intestines had been herniated for so long that they were stuck where they shouldn't have been.  I guess it took longer because the intestines didn't want to stay where the surgeon was placing them.  By the time they were taking him from the operating room to the neonatal floor he was already waking up and trying to pull out the breathing tube.  He went right back to the progressive care and is doing great.  He has been sleeping good but occasionally wakes up in pain.  He just needs a little extra love and cuddling! 

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SEPTEMBER 26TH

Yesterday they decided to move Joshua to the level 2 nursery.  Immediately after doing so he had a sudden setback.  His oxygen requirements significantly increased.  He may have to go back onto CPAP and back to the ICU.  He is requiring nearly 100% oxygen.  He needs all the prayers he can get to get him out of this hospital!

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SEPTEMBER 25TH

Joshua is making such great progress!!  I wanted to let everyone know how well he is doing.  He is breathing SO well.  He may be moving down the hall to the big kid nursery very soon!  The eye doctor was back yesterday and was very pleased with Joshua's eyes.  He made sure to tell the nurses how good they look!  Joshua is still having some trouble taking his bottles.  He suffers from pretty moderate reflux and has a hard time not vomiting during his feedings.  He is known to also drop his heart rate much lower than acceptable while eating.  He is only taking 2 bottles a day and he has to take 8 bottles a day to be released from the hospital.  He is not completely off of oxygen support but he is making great progress with it.  He will need to be completely off of the oxygen support before he can be released.  He also still has to undergo the hernia sugery before he can be released.  Although we still have a bit to go, it seems like we may finally be approaching the finish line.  There is no set time for his discharge.  All babies are different.  These things that seem minor to us may be hurdles for Joshua.  It may take him a while to come completely off of the oxygen and there is no telling how long it will take him to learn to take all of his bottles without having any problems and without losing weight from the exertion.  These are minor hurdles though compared to what he has been through already.  We are praying that Joshua can avoid any further unexpected hurdles and focus strictly on the expected hurdles he is currently dealing with.  We need him home soon!  

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SEPT 17TH - JOSHUA'S BIRTH ANNOUNCEMENT 

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SEPT 16TH

Thank you everyone for keeping Joshua in your prayers.  The doctor said his surgery went well.  It took just about two hours, which is normal.  As far as we know there were no complications.  They had to put Joshua back on the ventilator right before the surgery because they felt it would be easier to keep him more heavily sedated if he could rely on the ventilator to do his breathing.  He absolutely did not like this.  They gave him a single dose of pain medication right before doing it, but it barely touched him.  He clearly knew what was happening because the nurses and respiratory technicians said he fought them off hard when they were trying to put the tube down.  On top of the ventilator, the central PICC line to his heart stopped working that morning so he had to have an IV put in to his other arm in order to distribute his pain medication.  He had a very rough day, but they say it was a good think they put him on ventilator before the surgery because he did not tolerate the procedure when it began.  If they had not put him on it before, they feel they would have ended up having had to put him on it in an emergency fashion.  As soon as they put him back on the ventilator, before the surgery, we went right back in to be by his side.  The tube is now a very foreign thing to Joshua.  As soon as I got back to his side he began to vomit and kept gagging.  There was blood in his saliva because of the force of the tube going down.  He just layed there in misery.  His feedings were stopped for two days as a precaustionary measure due to the eye drops that possibly effect his digestion.  Since Joshua has now been taking one bottle per day, he was sucking and putting everything to his mouth.  He was so sweet.  After the surgery he was pretty much sedated the rest of the night through the morning.  Once he woke up he was not very happy.  They were able to give him a dose of pain medication every four hours if he needed it.  I thought he was in pain because of his eyes because he was wild.  He could not sit still.  The nurse gave him a dose of pain medication and as soon as it was finished going through his IV he went limp.  It clearly calmed him down.  However, minutes later, his oxygen saturation plumeted to the teens and his respirations stopped.  His heart rate was falling quickly also.  The nurse and respiratory therapist had to manually bag him with the oxygen mask.  This is a normal thing for preemies, but never for Joshua.  As far as we know, this has never happened to Joshua in this way during his entire stay in the NICU.  Plus, he is passed term so it shouldn't be happening at this point.  Fortunately, this was just a single episode and he quickly recovered from it.  They were finally able to take him off the ventilator shortly after this episode.  We were very concerned he would get stuck back on the ventilator because the doctor warned us that it was definitely a possibility with Chronic Lung Disease patients like Joshua.  Once the tube was out, Joshua sat there more comfortable than he had been the entire two days.  Instead of his eyes bothering him, it was clearly the ventilator bothering him.  In the whirlwind of all of this the doctors found reason to believe his inguinal hernias may have been strangulated, which would have called for immediate emergency surgery.  They examined him immediately after the eye surgery.  Fortunately again, the doctors concluded the hernias were not strangulated and did not have to be operated on just yet.  Joshua's eyes were moderately swollen and he had bloody crusties glued to his eyelashes.  The whites of his eyes were very red.  The swelling and the crusties have disipated and the redness is slowly fading also.  He has been very fussy since the surgery, but just this afternoon, his is seeming to have his personality back.  At this point we are waiting for the eye doctor to come back and examine Joshua.  He still has to rule out bleeding in the eye and retinal detachment.  These things could be a result of the surgery, but we are told it is rare.  Even though Joshua looks so good, Nick and I have to keep reminding ourselves to keep praying for Joshua's eyesight.  We were told that even if the surgery didn't cause retinal detachment, it could have still caused him to go blind.  It definitely ruins their peripheral vision and changes the way they see things.  I guess we will not know for sure how Joshua is able to see until he is a little bit older and is seeing the eye specialist regularly.  Until then we will continue asking God to spare his vision. 

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SEPT 11TH - PLEASE SAY EXTRA PRAYERS FOR JOSHUA ALL THROUH TOMMORROW

The pediatric retina specialist just called us and told us that Joshua has to have a very intense surgery on his eyes immediately tomorrow.  If he does not have this surgery there is a great chance he could go blind.  His retina could actually detach.  The surgery however, is horribe.  He told us that an adult could probably not handle it.  It will take a while to recover and the eye drops they need to give Joshua have, in the past, slowed Joshua's digestion and put his body into a state of shock.  After the surgery while recovering, there is a possibility of the retina detaching anyways.  Also, babies could lose their eyes.  There is a chance for increased pressure on the eyeballs, swelling and bleeding of the eyes.  They will be doing the surgery around noon tomorrow.  It takes nearly one hour for each eye.  They will be literally burning the retinas to stop the blood vessels behind them from continuing to grow.  Of everything Joshua has been through already, this is the one that scares me the most.  We will probably be in the hospital from now until he is finished with surgery tomorrow.  We will try to get online and let everyone know how it went.  Please keep Joshua in your prayers tonight and tomorrow and as he heals from this horrible procedure.  Our thanks goes out to everyone for sending God your requests to keep our precious boy alive and well.

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SEPT 5TH

The nurses felt Joshua was not tolerating the very minimal support given to him by the nasal canula so they put him back on CPAP.  He is miserable again.  They are hoping to get him onto something called Vapo Therm tomorrow.  They are just waiting for another machine to be shipped in for him.  This looks just like the nasal canula but it can put more humidified pressure through his nose.  They believe he will do very well with the Vapo Therm.  Joshua did a very good job on the nasal canula and he has made such tremendous progress over the last couple weeks!  He is amazing!

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SEPT 4TH

Today is Joshua's due date.  He is officially a full term baby!  He is still doing well.  Since he hates the CPAP so much and his blood gases and carbon dioxide levels have been remainig so well over the last couple of days, the doctor is going to try Joshua on just a plain nasal canula.  That puts oxygen in his nose but does not hive his lungs the extra pressure.He can actually go home with this kind of support.  We'll see how well he does.  Since he has been on it he is definitely much more comfortable!   

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SEPT 3RD

We just found out Joshua has stage 3 of the Retinopathy of Prematurity disease.  This is when the blood vessel behind his retina are growing so rapidly and abnormally that the retina could actually detach and he could go blind.  This is a very serious stage.  There are 4 stages.  Stage 4 requires immediate eye surgery.  Stage 3 is serious also because if a baby gets stage 3 with Plus Disease, surgery is also immediate.  The surgery is very intense.  A laser literally has to burn the retinas.  The surgeon explained that the baby has to be put under anesthesia because it a long and very painful procedure.  He said an adult would likely not be able to tolerate something like that.  It sounds horrible and I pray Joshua does not have to go through that.  The surgeon says Joshua is at stage 3 and is leaning towards Plus Disease so he thinks it is very likely that Joshua will need the surgery.  He also says that stage 3, if not accompanied with Plus Disease, can sometimes reverse itself.  We are praying for that outcome.  We will find something out in approximately a week.  The doctor is closely following Joshua's eyes.

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SEPT 2ND

They took Joshua off of the ventilator today!!!  They put him onto Bubble CPAP, which is just a steady flow of oxygenated pressure through his nose.  No more tube in the throat!!  He is starting to use his voice now!  He hates the CPAP because it is so uncomfortable.  He is in agony, but he is breathing very well with it.  They are giving him 6 very very scary doses of steroids over a three day period.  It has serious side effects such as GI bleeding and such.  It was very difficult to agree to Joshua getting these doses, but after thoroughly discussing it with the doctors we felt more comfortable with it.  He is doing well so far.  The doctors warn us that there is a chance he could rebound once the steroids wear off and he could have to go back on the ventilator, but we are praying that will not happen.  It's a good day.

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AUGUST 28TH

The good news is that Joshua does not have the MRSA form of staph.  Bad news is he has the staph infection in his lungs and now it is showing in his blood and his urine is also testing possible for infection.  He has a lump on his lower cheek that is concering the doctors.  Staph is known to localize in certain areas of the body and they think it may have possibly localized in one of Joshuas lymph nodes or glands in this area.  They had to do an echocardiogram of his heart to make sure it did not get to any chamber of his heart. 

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AUGUST 24TH

Today the doctor called and said Joshua is having a couple of issues.  Thursday morning Joshua's breathing tube got plugged up with sputum and it had to be pulled out and a new one placed back in.  When they examined the plug they found that it was green in color.  A white or yellow color is acceptable, but green means infection.  So they sent the plug to the lab to be tested for infection.  He also began running a fever of over 100 degrees and it is still persistent into this evening.  It took 24 hours for the results of the sputum culture to come back.  When the doctor called he told us that the sputum was positive for Staphylococcus Aureus.  He has been having very thick discolored secretions being suctioned from his lungs non stop.  He is very sensitive right now.  He rarely opens his eyes and he has begun a constant on-off crying.  If I hum the ABC's or Twinkle, Twinkle Little Star it seems to calm him right down.  However, if I turn off the music he will turn the crying back on.  He is also having chills and shivering because he has such a high fever and they cannot cover him up with any blankets and they turned the heat warmer on his bed off.  His breath smells like what I call "sick-breath", the really humid, sore throat smelling kind.  He is definitely more sick looking than we have ever seen him.  They started him on 2 different broad specturm antibiotics until they determine which antibiotic is the best to fight off this infection.  They can find that out because they are testing several different antibiotics against the actual bacteria sample they obtained from Joshua.  We will have those results within the next 5 days.  Here is the scary part.  The Neonatal Intensive Care Unit that Joshua is in has had a recent outbreak of MRSA (Methacillin-Resistant Staphylococcus Aureus).  This means that numerous babies in the NICU have gotten a strain of Staphylococcus Aureus that is "resistant" to most all Methacillin antibiotics.  They have actually had to close down an entire nursery room so that they could put these babies into it as a contact isolation room.  Because of this and all of Joshua's symptoms and positive cultures they are treating him as if he has MRSA as well.  He is currently considered as being a contact isolation patient.  We, and all of the hospital staff, have to wear gowns and gloves at any time we are with or touching Joshua.  This afternoon they took another sputum culture, a blood culture and a urine culture, all places MRSA exist, and sent them into the lab to be tested again.  We will follow this contact isolation procedure until the cultures prove Joshua is does not have MRSA.  We are praying very hard that he does not.  Both Staphylococcus Aureus and Methacillin-Resistant Staphylococcus Aureus are very serious infections.  They do have mortalitiy rates.  In some cases he Methacillin-Resistant Staphylococcus Aureus can be treated by a certain antibiotic called Vancomycin, however, MRSA is starting to become resistant to that as well.  Every time Joshua is able to take one step forward he is unfortunately pushed two steps backward.  He has just made it from the high frequency ventilator back to the normal ventilator and now his health is being compromised by this respiratory infection caused by the Staphylococcus Aureus.  His chest x-rays look hazy, indicitive of fluid in his lungs. This infection can actually cause Pneumonia.  The saddest part is that it is not something that stems from being a premature infant.  It is something the hospital gave to him.  It is passed from healthcare worker to patient.  It is spread by improper hand washing and improper isolation measures.  The NICU is so full right now and they have so many critical and isolation babies that there is no room for Joshua to be put somewhere else away from other babies.  Normally he would have been.  However, they have had to leave him where he is in the room with all the other babies and he still even shares a nurse with those other babies.  Even though the healthcare workers are using the contact isolation precaustions until we know for sure if Joshua's infection is resistant or not, we pray Joshua doesn't have the MRSA form of  Staphylococcus Aureus for the sake of his health, the health of the staff and for all the other babies around him.        

http://www.postgradmed.com/issues/2001/10_01/weems.htm

http://www.edcp.org/guidelines/mrsa.html

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