A case of the Mondays

Yesterday we talked about how we can see where we have come from and today that was a helpful reminder.  When Mom and Dad called to see how Josh was doing in the night, we were told that Josh was having lots of apnea and bradycardia and his tummy was pouchy and measuring larger.  The nurse was so concerned she called the on-call nurse practitioner to come and look at him.  They sent some labs and when we called again a few hours later, we were told that his labs looked ok and that he was doing better.

When Mom arrived, she found one sick little baby waiting for her.  The good news was that Josh was awake and somewhat interactive.  He was however very pale, not moving around as much as usual and was not tolerating being moved by the nurses as well as he normally does.  The nurse said that his murmur was back (although still very soft) and that his lungs sounded "junky".  He had several episodes of apnea and bradycardia while we waited for the doctors to round.  The nurse had to increase his oxygen to 32% from his normal 21% (room air).

After what felt like forever, the doctors rounded and decided that he might have an infection.  So they ordered lots of labs, an xray and blood cultures.  The nurse also placed an IV in Josh to give him his antibiotics.  Not long after the xray was done, the nurse practitioner came over to discuss the results with Mom.  The good news was that the xray showed that Josh's lungs looked good.  The bad news is that the xray showed that his ET tube was a little high and he had some dilation and thickening of his intestines.   It is possible the dilation and thickening of his intestine is from air going down his esophagus.  To be cautious, they have stopped his feeding for at least the next 48 hours and placed a tube in his stomach (Oral Gastric tube OG) to intermittently drain out anything that might be in there.  They also readjusted his ET tube inserting it further in to his trachea.  They attempted to do a suprapubic catheter of his bladder to get a urine sample, but it was not successful because he had recently peed. They started IV fluids to keep him hydrated and will consider restarting IV nutrition if he can't eat for more than 48 hours.

The plan right now is for Josh to receive 48 hours of antibiotics and to be off his feeding for at least that long.  They will do a xray of his abdomen at 8pm tonight and again tomorrow morning to make sure his belly is getting better.  They will also check labs again in 48 hours and if his numbers look ok they will restart his feeding and discontinue his antibiotics.  If he has positive blood cultures then they will keep him on antibiotics for 10 days and do a spinal tap to make sure he doesn't have an infection in his spinal fluid.  If Josh is able to begin feeding again after 48 hours, it will take 2-3 days to get back to full feedings. 

It appears that Josh is doing much better now that his ET tube is in the right place.  His oxygen saturation have been at 100% and he has had no apnea so far.  His color is also looking better.  He has had no output from his OG tube, which is also good news. It is possible that all of this fuss was caused over a misplaced ET tube, only time will tell.

Mom and Dad both feel that today was made easier thanks to the netbook.  Mom was able to keep Dad updated in real time without having to leave Josh's bedside.  They were also able to talk several times during the day and Dad was able to see Josh.  Both Mom and Dad are very thankful for this!

Prayer Request:

• Josh would not have an infection and continue to improve now that his ET tube is in the right place.
• Josh would not lose much weight while he is not getting his feeding and that he would tolerate his feedings well once they are started back.
• Josh's doctors and nurses would continue to stay on top of Josh's condition and be quick to treat him when he needs it. 
• Josh's xrays at 8pm tonight and tomorrow moring would show improvement in his intestines.

Praises:

• Josh was doing much better now that his ET tube is in the right place.
• Josh had a great nurse today who advocated for him with the doctors and answered many of our questions.
• Josh gained 35 grams today and his weight is 2lbs 9oz!
• Mom and Dad were able to stay in contact today thanks to free wireless and modern technology.

(Josh not feeling very good this morning - his nurse put his red boots on, put his snowman near him and played his CD to make him feel better)

 

 (Josh with his new IV site thinking he doesn't want to see what is next)

 

 (A tired Josh trying to set some rest after all the test he had done)

 

 (A close up of Josh's new tummy tube and his readjusted ET tube)

 

 (Josh with better color and feeling well enough to put his hand on his tubes - a sure sign he is feeling better)

The adventure continues

Josh had a pretty solid day, although he seemed to be having a bit more apnea than he has had in the previous week or so.  We are also receiving lots of mixed messages about what is the standard of practice.  Some say that they should vent his feeding tube after feeding to prevent reflux, which will reduce the episodes of apnea/bradicardia.  Others say that leaving the tube to vent allows some food to go back up, and Josh does not get all of his intended nutrition. Other messages seem to be that there are varying attitudes on what is considered to be "too much" apnea to come off of the ventilator.  Some people give us hope that it is coming off soon, and others seem to be very pessimistic about it, and basically tell us that we have to wait and see after Josh grows a bit more.  It is all very frustrating, and we are going to try to get some clarification from the doctors tomorrow about these issues.

Josh slept most of the day, although did wake up some for the steady stream of visitors that he received in the afternoon.  He continues to look much better today, and is up to 2 lbs 8 ounces! We are holding to this even though the nurse told us he had a huge poop today that should negate his weight gain.  Josh also had his feeding increased to 21ml every 3 hours to keep pace with his increasing rate.  He continues to tolerate his feedings, although he continues to have reflux. Josh continues his quest to remove either his breathing tube or feeding tube, whichever he can get to first.

After reflecting on how far we have come from when Josh was first born, we can see a huge improvement. We are very thankful for how well Josh has done and believe that we can see the hand of God at work in Josh's life and in our lives.  It is helpful for us for to reflect back and see the faithfulness of God, especially as we look towards the months ahead.  We still have a long road ahead of us, even if most of that time is spent just feeding and growing.  It is daunting at times to think that we still have at least 11 weeks (or so) left in the NICU.  But we stand strong in the belief that God will bring Josh and us through the next 11 weeks, as well as the coming years.

Prayer Request:

• Josh would have less apneic episodes, that his brain would mature so that he can be taken off of the ventilator.
• Josh would continue to tolerate his feeding and his reflux would not effect his breathing.
• The medical team would be on the same page and that Mom and Dad could get some clarity about where we are going from here.
• Josh, Mom and Dad would continue to feel God's presence with them as they continue day by day on this adventure.

Praises:

• Josh is doing so well for someone born so small and is growing bigger and stronger everyday.
  
• Josh's weight is up to 2lbs 8oz!
• Josh had some good time with family visiting today and was able to be awake for large portions of that.
• Josh and Daddy got to do Kangaroo time today

(Josh on his first day in the NICU)

 (Josh three weeks later - sleeping comfortably this morning when we came to see him)

 

(Isn't he just so cute?)

 

 (Josh sleeping on his tummy in the afternoon)

 

 (Josh enjoying some quality Kangaroo time with Daddy)

 

(Daddy enjoying some quality Kangaroo time with Josh)

The Skype adventure

So, today being Saturday, Mom and Dad slept in until 9:00am a nice treat for them.  A new toy came in the mail this morning.  We decided to buy a netbook.  The purpose of this would be so that Dad could use Skype during the day to see little Josh while Mom is at the hospital and Dad is at work.  It will make it a bit more bearable for Dad when he has to be at work while Josh and Mommy are at the hospital.  It will also help us to keep in contact with family around the globe while Josh is hospitalized.  Josh got to meet his Mimi and Poppy today for the first time thanks to the netbook and Skype.

When Mom and Dad got to the hospital, we saw that Josh was doing very well.  He is up to 2 pounds 7 ounces today!  The nurse said that Josh was very quiet today, which is a good thing.  He hasn't tried to pull his breathing tube out, or had many apenic episodes with desaturation and bradicardia.  He is just in the phase of his stay where we get to watch as he grows and puts on weight, and pray that he does not develop any infections or get sick from anything.  We are very encouraged by his weight gain today and hope he continues to gain weight over the next few days so his breathing tube can come out.

Of course, Josh couldn't stay still for too long.  As soon as we got here, he woke up and started looking around and squirming around... and of course, grabbing his breathing tube.  Fortunately he was only holding on the tube, and not pulling on it, so we let him stay that way.  He is still getting 20 ml of breast milk, with an additional 4 calories per feeding of a fortifier to help him put weight on more steadily and consistently.  He is still experiencing reflux, but it doesn't seem to be getting any worse.

We find it interesting the while the nurse reports that Josh hasn't been very active today or awake much (which is normal for a preemie), he sure does seem to wake up alot for us.  When he wakes up, boy does he wake up.  Todays activities have included trying to pull out his feeding tube, trying to untape his feeding tube, trying to turn his head again and scooting off of his cuddler.  Even though it isn't always convient for the nurses, we are very proud of our little mover.

A friend of ours gave us a little CD player that hangs on the side of cribs, and aother person gave us a baby Mozart CD (from the baby Einstein collection).  Although Josh has only listened to it for a short while, he seems to like it. Studies have shown that classical music can help with a baby's brain development, as well has help them to be content and more restful.

Prayer Requests:

• Josh continue to rest well and gain weight steadily
• Josh come off of the ventilator when he is ready, and that he not go back on again
• Josh continue to be healthy, and not develop any infections, especially in his lungs while on the ventilator
• Josh continue to take his feedings well, and that he not have any reflux
• Josh continue to have good, attentive nurses assigned to him
• Mom's milk supply continue to increase
  

 Praises:

• Josh is gaining weight - he is up to 2 lb 7 ounces!
• Josh's awake periods are starting to get bigger and we can tell that he can recognize us and is taking in his surroundings
• Mom and Dad got good rest today

 (Even in his sleep, Josh knows where his breathing tube is)

 

 (Josh likes to go with the full handed grip of his breathing tube)

 

 (What are you doing with that computer?  Who are those people on the screen? Must be Mimi and Poppy!)

 

 (Tired little Josh sucking on his finger)

 

 (Isn't he just the most adorable thing you have ever seen?)

 

 (Josh trying to scoot completely out of his bed, we think he was making for the door.)

Challenge Accepted

Every morning the doctors and nurse practitioners round at the bedside of each patient in the NICU to discuss the plan of care for the babies.  For the last 2 weeks, the doctors have rounded on Josh and discussed when would be the right time to remove his breathing tube.  Every day they say about the same thing - he isn't quite ready yet, BUT if he were to self extubate we would see if he would be ok on CPAP.  Well, Josh has been listening to this for the last 2 weeks and each day he becomes increasingly interested in helping the medical team reach their goal of extubation.  At first he would pick at the tape holding his breathing tube in place, then he progressed to holding on to the tube, then pulling on it, then he tried stealth maneuvers, impressing the nurses with is physical abilities, all to no avail.  Well today when they rounded and said the same thing - he just needs to grow for a few more days, perhaps next week we will take out the tube - Josh made up his mind.  He accepted their challenge and he decided to go after his goal!

This afternoon an unsuspecting Mom and Dad were sitting next to his isolette commenting on how cute of a baby he was and what a big boy he was becoming.  Then it happened... Josh was laying on his tummy, he cracked one eye, picked up his head and turned his head completely the other way.  Mom and Dad were horrified by this occurrence, he has managed to completely kink off his breathing tube!  After looking around frantically for a nurse, Mom gently grabbed Josh's head and turned it back to the proper side.  While Dad stayed to watch Josh, Mom went to find someone to make sure Josh was ok.  The respiratory therapist came over to assess Josh and said he was ok.  Then it happened again... Josh looked right at her and turned his head again, burying his face in the bed, while trying to face the other way.  She quickly turned him back and then placed a bean bag around his head to keep him from being able to move his head as much.  Two minutes after she walked away from the isolette, he did it again!  Mom again gently turned his head back in the right direction.

Now despite the horror of watching him do this several times, we have to admit we were a little proud of him.  How many 19 day old babies do you know that can do this?  So we decided that when his nurse came back over we would ask for her to reposition him a little early since he appeared to be tired of facing in that direction.  In the mean time, Dad stood ready with the camera should Josh attempt to do this amazing feat again.  We think Josh realized that the camera was out because he stopped trying to turn his head after that.  So we are sorry to say that we do not have any pictures of this amazing feat, perhaps next time.

In other news, Josh's weight is essentially unchanged from yesterday (although he did gain 10 grams). He is continuing to tolerate his feeding with just a minimal amount of reflux.  He remains without any IV fluids or IV access.  He ventilator remains on minimal setting and room air.  We are holding steady right now, just waiting for Josh to gain some more weight.

Mom got to spend two and half hours kangarooing with Josh today, which was relaxing to both of them. Dad got off work a little early and we all got to spend some good quality family time together, complete with a little drama thanks to Josh.


Prayer Request:

• Josh would not manage to pull out his breathing tube before it is time to come off of the ventilator (unless he is ready and the rest of us just don't know it).
• Josh would not develop any infections while in the NICU, especially while on the ventilator.
• Josh would begin to gain weight steadily so that he can begin to meet other milestones.
• Mom and Dad would get some good rest this weekend and remember to take better care of themselves.
• The new medicine Mom started would help increase her milk supply and not have side effects.
  

Praise:

• Josh is growing stronger everyday and becoming more aware of the world around him.
• Josh is tolerating his feeding well and his reflux is stable.
• Josh and Mom got some good time Kangarooing today!
• Josh looks better overall and is filling in some with the weight gain he has had.  His breathing also looks better overall, he isn't using as many muscles to take deep breaths.

(Josh saying hi to Mom after she arrived today)

 (Mommy and Josh Kangarooing)

 

 (Big bright-eyed baby boy)

 

 (Isn't he just too cute!  This was right before he made his move)

 

 (Josh's head being held still by a bean bag, too bad it didn't work)

Check out the gun show

Since Josh had been doing such a great job with putting on weight, we were hoping to hear that he had gained another ounce, but alas, it was not to be.  Josh is still holding at a whopping 2lbs 5oz - we are proud of the progress he has made so far and are glad that he did not lose weight.  Since he did not gain weight today, they have decided that they will definitely not extubate Josh this week.  The doctor would like to have 3-4 days of steady weight gain before removing his breathing tube.  So Josh will stay on the ventilator at least through the weekend and we will continue to hope and pray that he gains enough weight to be off the ventilator in time for Christmas.  Mom and Dad think that would make for a splendid Christmas gift!!

Josh is continuing to tolerate his feeding at 20ml every 3 hours, which is his current goal based on his weight.  Josh seems to be doing better since the nurses started venting his tube after feeding him.  He did actually have a big boy burp that left him with a little milk drool on one side of his mouth this morning.  This was an unusual occurrence because they are venting the tube.  The nurse said this can happen from time to time and of course, Josh slept right through it all.  He is receiving extra calories in his feeding to help him gain weight and is tolerating the supplement very well. 

Josh seems to be enjoying having his PICC line out and better use of his arm.  Although he seems to miss having extra lines to pull on.  He has been very active today, trying to impress his visitors.  The only problem with putting so much energy into showing off at his age is that you sometimes forget to breath.  Good thing Mom, Dad or a nurse is readily available to remind Josh of where his priorities should be.

Josh and Mom were very excited to see Dad at lunch time today.  They both enjoyed getting some extra daddy time.  Josh even managed to stay awake for part of Dad's visit.  Mom and Dad were also excited to find out that Uncle Matt's blood is a perfect match for Josh!!  That means Josh now has a unit of blood on hold and available to him.  Thank you to everyone who has offered or already donated.  We will be contacting you in a few weeks when this unit of blood gets close to expiring (or if it were to get used up before then, which we hope and pray is unlikely). 

Prayer Request:

• Josh would not develop any infections while in the NICU, especially while he is on the ventilator.
• Josh would continue to gain weight at a steady pace during his stay in the NICU.
• Josh would be able to get off of the ventilator by Christmas and not need to go back on later.  His brain would continue to develop so that he has no more apnea.
  
• Josh would continue to tolerate his feeding and that his reflux would not become more severe.
• Mom and Dad would get some good rest over the next few days.
• Mom's milk supply would increase to keep pace with Josh's growing needs.

Praises:

• Josh and Mom were able to see Dad for some extra time this afternoon.
• Josh is holding steady at a heft 2lbs 5oz.
• Josh is tolerating his feeding well and is doing better with having his feeding tube vented.
  
• Uncle Matt's blood is a perfect match for Josh and Josh now has a unit of blood on hold for him.
• Mom and Dad are very thankful for the help that so many people have provided for them, from helping them get household chores done, to visiting, bring meals and even little presents for Josh.  You all help make a hard time easier for us.

 (Josh saying good morning!)

 

 (Look at those big pretty eyes and his wrinkly forehead like his Daddy)

 

 (This is one of Josh's favorite expressions, eyebrows raised, eyes squinted to see if the nurse is around)

 

 (Check out the gun show - He needs a permit for those arms!)

(Alternate caption: TOUCHDOWN JOSHUA COBB- OH MY (insert Gator fight song here))

 

(Who could resist that face?)

 

 (Big boy with his pacey during a feeding)

Bye Bye IV fluids and PICC line!

Josh had a pretty good day today.  He weighed in at a hefty 2 pounds, 5 ounces, and is now totally off of all IV fluids.  They even took out his PICC line today (the IV line in his left arm).  If he needs to have an IV some time in the future, they will put another one in, but for now the only tubes going into Josh are the ventilator and feeding tube.

He is being fed 20 ml of breast milk every three hours, which is at his goal rate.  One of his nurses noticed that Josh had most of his apenic and bradicardic episodes with in 30 to 60 minutes after a feeding.  They decided that Josh must be having some reflux, which is very common in preemies.  What happens is that when Josh has some reflux, it hurts him, and so he clenches up and stops breathing (apnea).  When he does this long enough, his heart rate drops (bradicardia). So the doctors decided that they would administer the feed through his feeding tube with a pump that would give it to him over the course of an hour.  After getting his food, the feeding tube would be left open so that any gases in Josh's stomach can be released (he would burp).  This has significantly reduced the number of apenic and bradicardic episodes that Josh has had.  The nurses have also started giving Josh a pacifier when they start his feeding to help him to begin to associate sucking with a full belly. This will help Josh to get ready for feeding on his own, although we are several weeks away from this.

The doctors are encouraged by the weight that Josh is putting on.  They added more fortifier to the milk, so that they are adding 4 Calories per feeding, in order to help promote weight gain in Josh.  They said that if Josh is big enough by Friday, that they may try extubating him in the morning.  The would then see how he does through the day, before the weekend comes.

We are still looking for a source of blood for Josh through directed donation.  So far two people have donated blood who used to be CMV negative, but both showed up as CMV positive.  Josh's uncle donated today, and we hope that his blood will be usable for Josh.  If not, then we will continue to contact the people who offered to donate blood for Josh.

Josh continues to believe that he is a big boy and that he does not need his breathing tube any longer.  Now when Mom or Dad asks the nurses if they are aware that he tries to pull out his tube, we get a resounding yes!  They have each come up with creative ways of keeping his tubes away from him, but he always manages to escape.  We are proud to say our little maniac just keeps trying.  He gets an A for effort!

Prayer Requests:

• We find a suitable CMV negative blood donor for Josh
• Josh not have any reflux with the slower feeds and venting of his stomach and he continues to gain weight.
  
• Josh have fewer apenic and bradicardic episodes and his doctors know if he is ready to be extubated on Friday.
  
• Josh not develop an infection, especially in his lungs
• Josh not need another IV
• Mom and Dad get good rest when they do have a chance to sleep
• Mom's milk supply increase to meet Josh's growing milk demand

Praises:

• Josh is up to 2 pounds 5 ounces!
• Josh had his PICC line taken out - no IV lines!
• Josh is up to full feedings (no IV fluids)
  
• Doctor's think that they have found the cause of the majority of his apnea (reflux from feedings)

 (Josh getting some tummy time this morning)

 

 (Josh waking up and checking out the world around him and thinking about how to get the tubes)

 

 (Josh getting a visit from Lindsay)

 

(Josh and Daddy holding hands)

 

 (Josh trying to sleep after a busy day, dreaming about the tubes)

The heart of the matter

So in keeping with tradition, today was a better day.  I firmly believe that today was a better day as a result of all the people who have been praying for Josh.  Every day we hear of at least one new person who is reading his blog and praying for him. We want you to know that we appreciate each and everyone of you and we can feel you love and support.  Thank you for taking time to keep up with Josh and to pray for him and us.

One of the biggest things we are thankful for today is that Josh's heart murmur is gone!!  The nurse practitioner said that she was unable to hear the heart murmur today, which is a good sign.  It means that his murmur is most likely caused by his Patent Ductus Arterious or PDA (the hole between a baby's heart and lungs that closes up when they are born).  In preemies, the PDA can either not close fully or close but not be sealed fully and open occasionally.  In Josh's case, they think that his PDA is closed but not completely sealed and it opened just a little yesterday causing the murmur, but had closed back by this morning.  This is a common occurrence in preemies and is not treated unless they are symptomatic and it should seal complete with time.  If he still is having an occasional murmur prior to discharge, they will do an echo (ultrasound of the heart) to evaluate it.  We are very thankful that his murmur is gone for now and was not related to something more serious.

In other news, Josh weighed in at a hefty 2lbs 4oz today!  That is one ounce more than yesterday.  He is now getting 17ml of feeding every 3 hours.  They have added a fortifier to his feedings to increase his calories and helping him to gain weight at a steady rate.  His nurse practitioner also noted that most of his apenic episodes were 30 minutes to 1 hour after feeding.  So she had changed it so that he is getting his feeding over the span of 1 hour (instead of about 2 to 5 minutes before).  We are hoping that the slower rate will prevent him from having reflux which can cause his apnea.  He is also officially done with his IV fluids for now!

Mom talked to the doctors today about when Josh would come off of the ventilator.  We were told originally that he would be on the ventilator until Tuesday or Wednesday of this week.  But the new team has decided that the best thing to do is to give Josh more time to grow and gain weight before they take him off of the ventilator.  So we are looking at sometime early next week for them to try him on CPAP.  We are hopefull that with the extra calories in his feedings he will gain weight at a steady pace, the longer times to get his feedings will stop most of his apnea, and the extra time with help to ensure that his brain is ready.  The waiting is a little hard, but we want to ensure that what we are doing is best for Josh, so we will wait as patiently as we can.  (Although Josh might be the most impatient of us all...he is very intent on pulling out his ET tube.)

Overall, Josh had a good day. He had some good awake time and got to interact with Mom.  Mom got to Kangaroo with Josh today for about an hour and a half.  Dad got to spend some good time with Josh this afternoon, although Josh was a little sleepy.   And of course, Josh made every effort while awake to remove either his feeding tube or his ET tube.

Prayer Request:

• Josh would remain free of infections during his time in the NICU, especially lung infections while he is on the ventilator.
• Josh would tolerate the slower feedings better and this would resolve his apnea issues.
• Josh would continue to gain weight steadily so that he can get off the ventilator.
• Mom and Dad would be patient as they wait for their little guy to get big and strong.
• Mom's milk supply would increase to so that it continues to exceed Josh's needs.

Praise:

• Josh's heart murmur is gone today and does not seem to be a serious issue
• Josh is off of his IV fluids and tolerating higher feedings.
• Josh gained one ounce and is  a whopping 2lbs 4oz!
• Mom got to Kangaroo with Josh today!
• Dad, Mom and Josh are thankful for the support, encouragement and prayers of so many people, many that we don't even personally know!!

(Josh sleeping in the sun with Mom got there today)

 

(Josh pretending to be asleep while reaching for his tube)

 

(Josh still "sleeping" while reaching for his tube)

 

 (Josh cracking one eye to see why he has not been successful at grabbing the tube)

 

(Josh passed out after managing to get both arms and a leg free after the nurse caught him trying for his tube - note the arm slung across his tube to make sure it doesn't get away from him)

Josh had a pretty good night last night.  When Mom arrived this morning, she found Josh taking a nap in his isolet.  The day nurse told us what a good night Josh had, with only on episode of apnea.  It seemed that today was going to be a good day.  Then Mom saw that Josh was on 25% oxygen and wanted to know why - after looking back, it appeared that Josh had been on that since yesterday afternoon  Mom asked the nurse to please wean him back to 21% oxygen (room air) since he did not usually require so much oxygen.  The nurse did this and Josh's oxygen saturation dropped to 79% and would not come up.  The nurse worked with Josh to try and get him settled, suctioning him and repositioning him.  He had two episodes of apnea with bradicardia while we were trying to get him sorted out and finally she had to go back up on his oxygen to 24%.  This is a low amount of oxygen and it is possible that with the increased physical activity Josh has been doing, that he is requiring a bit more oxygen to make his breathing easier.  So we will wait and see if he can be weaned off the oxygen in the next few days

Then the nurse practitioner came by and did her physcial exam on Josh noting that had a heart murmur, which is not something he had before.  Mom was even more displeased by this. The new nurse practitioner and attending did not seem concerned by these findings. After talking to Josh's nurse and another nurse practitioner and listening to Josh's heart herself, Mom felt a better.  Josh does have a slight heart murmur which had not been heard before, but this can be caused by several things.  It is possible, but less likely, that the hole in his heart had not fully closed yet - although Josh is not current displaying any other symptoms of this.  It is also possible, and slightly more likely, that the murmur is caused by anemia resulting from blood drawn for labs and an inability of his little boy to keep up with his needs because of immaturity.  The team doesn't want to do anything yet because his murmur is so small that they would not treat it right now regardless of the cause and it puts unnecessary stress on Josh to try and figure out what is causing it.  So the plan right now is to just watch if over the next few days and see if it required interventions.

On a good note, Josh's feeding are up to 15ml every 3 hours.  At this rate he will be at full feedings by Wednesday!  That means they can stop his IV fluids and he will just be waiting and growing.  Josh continues to tolerate his feeding well with no residuals after each feeding.  He continues to be very active and spent several hours today trying to do push ups and lifting his head off of the bed.  It was very impressive to watch him move himself around the bed.  He can even turn from his belly onto his side!  We had no idea preemies were so advanced in their movements. Dad got to do some Kanagroo time with Josh after work today, which was great for Josh and Dad.  Josh was one happy baby napping on Dad's chest.

Prayer Request:

• Josh's heart murmur would not develop any further, but would resolve over the next few days.
• Josh's brain would continue to develop so that he is able to get his breathing tube out.
• Josh would be able to be weaned off of the little oxygen he is on.
  
• Josh would continue to tolerate his feedings well and would gain a little weight each day.
• Josh would not develop any infections while he is in the NICU, especially while he is on the ventilator.
• Mom would have some success at increasing her milk supply using some of the new methods the lactation consultant gave her.

Praises:

• Josh is tolerating his increased feedings without any problems.
• Josh is becoming more active each day, which is a good sign.
• Josh is off of his IV nutrition and only receiving IV fluids.
• Dad got to do Kangaroo Care today after work.
  
• Mom is starting to get acquainted with some of the other families in the NICU.
• Mom and Dad are thankful for their family and friends who are providing such good support.  We greatly appreciate your prayers, comments and support!

(Josh during some of his awake time this morning)

 

(Josh taking a nap after a lot of awake time this morning - his back is healed up)

 

(Josh picking his head up from the bed)

 

(Josh rolling on his side - such a big boy!)

 

 (Josh's nurse came up with a creative way of keeping his hands busy after her tried to pull his ET tube out when Mommy went to the bathroom)

(Josh enjoying his Kangaroo time with Daddy)

(Daddy helping Josh with his feeding during Kangaroo time)

The diaper that ate the baby

When we arrived this morning we found that Josh had gone up a size in diapers. This would normally be a very satisfying thing for parents, it is a sign that their baby is getting bigger.  Except in this case there isn't a intermediate size diaper.  There is the very preemie diaper and the preemie diaper.  As you will see below, the preemie diaper is at least half the size of Josh and covers up large portions of his body.  We are excited that Josh is becoming such a big boy that he can out pee the very preemie diaper...he will however probably go home in the same size diaper he is wearing now, not that we are complaining.

In other news, Josh is now getting 13ml of feeding every 3 hours, which he is tolerating very well.  With his feeding being so high, they have stopped his IV nutrition and he will just be receiving IV fluids for the next few days to help him stay fully hydrated while he continues to transition to his full feedings of 19ml every 3 hours.  This is a very exciting milestone to reach and we are very proud of our little man.

We had an opportunity to meet his new primary team physician and nurse practitioner today.  They will be taking over for our old team starting tomorrow.  We discussed Josh's breathing tube and they are thinking that they will make a decisions on Tuesday or Wednesday about whether to remove the breathing tube or give him a bit more time to grow.  Josh only had 3 episodes of apnea that required stimulation yesterday, which is much improved from before he was placed on the ventilator.  There is a risk that he will need to be reintubated if his brain is not quite mature enough to keep him breathing mostly on his own once the breathing tube is removed.  This isn't a set back, but more a common occurrence in preemies.  We are hopeful that his breathing tube will be removed this week for the last time.

Josh had a good day overall, although he was a sleepy head most of the time Mom and Dad were there to visit.  Mom got to do some Kangaroo Care today and really enjoyed this special time with her little man.  Dad stayed close by and got to interact with Josh when he opened his eyes while Mom was holding him.  Once Josh was placed back in his bed, both Mom and Dad had a good time talking to Josh and holding his hands.  Josh continues to be fascinated with his breathing tube and feeding tube.  He would frequently grasp them with a white knuckle grip and attempt to remove them himself.  After patiently explaining that he needed these tubes without effect, Mom and Dad reverted to distraction  They tried various techniques including showing Josh how much fun it would be to suck his fingers or Mom's fingers instead (Dad's fingers are still a bit big).  After a while distraction also proved to be ineffective and we resorted to holding his hands and rubbing his head, which put Josh right to sleep.

Prayer Request:

• Josh's brain would continue to develop and that he would be able to get his breathing tube out once and for all this week.
• Josh would continue to tolerate his increased feeding and continue to gain weight.
• Josh would not develop any infections while he is in the NICU.
• Mom and Dad would get some more opportunities to hold Josh
• Mom's milk supply would continue to increase so that it can exceed Josh's coming needs

Praises:

• Josh now weights 2lbs, 3.5oz today!  
• Josh is starting to show interest in sucking on things even though it is still weak.
• Josh has graduated to great big boy diapers.
• Dad got to spend a good amount of time with Josh since it was the weekend.
• Mom got to hold Josh today while doing Kangaroo Care
• Mom seems to be almost fully recovered from her surgery and will hopefully start driving this week if Dad approves.

 (Josh looking angelic with his little hands tucked under his chin)

 

 (The diaper that ate the baby)

 

 (Mommy and Josh enjoying some Kangaroo time)

 

(Sweet baby looking at Daddy)

(Josh hanging out with his new friend the snowman - thanks Grammy!)

 

 (Josh sucking his ring and middle fingers)

 

 (Josh sucking on Mommy's pinkie - he is pretty strong!)

 

 (Josh resting in his newly made bed at the end of the day)