Thursday, November 28, 2013

Happy Thanksgiving - November 28,2013

Owen has been working hard over the past couple of days. Yesterday he was given his first bottle and took it like a champ!! He was given 15mL and got another 10mL because he did so well. The remaining food was given to him down his feeding tube.  He will continue to get bottles more and more as he gets stronger. They give him a time limit for him to drink it and then give the rest of it down his tube. Today he bottled about 15mL each time before he got really tired and we had to stop. 

Today Owen left his room for the first time down the hallway into a pod. This is a good sign, and a "graduation" in the NICU. Although we really liked our private room with a window, we are happy that he is well enough to move!

We have a lot to be thankful for this Thanksgiving, but the biggest thing is our  precious little turkey and his strength and will to keep on fighting!

 Gobble gobble gobble 

I could get used to this bottle thing

Found my Thumb!

Monday, November 25, 2013

Stronger bones - November 25, 2013

Owen stayed the same weight.  They are going up 1ml per feeding.

His eye exam was done today.  His vessels weren't growing too much, so we don't really know anything yet.  The doctor said next week we will probably be able to tell if he will be on the path to laser surgery.

He was taken off of the medicine to help his liver since it seems to be function better.

His dose of the long term diuretic is being reduced.  Hopefully his kidneys will know what to do and he won't have to be on the diuretic too much longer.

He is done with the antibiotics for the time being.

Owen is still on the heart medicine.  We haven't seen any bad side effects yet.

His lungs weren't expanding like the doctor hoped, so they decided to leave the oxygen levels alone.  



Praying for:                                                              Praise:

  • Bones to grow stronger                             Bones are looking like they are getting stronger
  • Lungs to function better
  • Infection to stay away                                Owen is off antibiotics now
  • Heart problems to heal
  • No long term effects from the steroids
  • Be willing and able to take a bottle
  • Eyes to grow properly

Crowded crib

Knocked out

Sunday, November 24, 2013

Laughing - November 23, 2013

Owen has been been resting and eating over the last couple of days.  He is currently up to 5lbs. 7oz.

He is getting an eye exam tomorrow.

His heart ECHO was read and his ventricle is thankfully getting smaller.  He has been put on a medicine that will bring his heart rate down a little bit.  This will help even more to make the heart less thick.  This can also intensify bronchospasms is he has them.

His liver is now operating at normal levels.  He should be able to come of some medicines because of this.

He is nearly through with his course of antibiotics.

He has started some liquid vitamins.

Owen really loves his pacifier.  We are hoping this transfers over to a bottle!  He has to be down to a certain setting on his cannula before we can try a little bottle.  He is very close!  We are hoping that  sometime early this week we can give him at least one bottle.

Praying for:
  • Bones to grow stronger
  • Lungs to function better
  • Infection to stay away
  • Heart problems to heal
  • No long term effects from the steroids
  • Be willing and able to take a bottle
  • Eyes to grow properly

In his bouncer with Clifford

Hard day

Laughing at dad's serious face

Thursday, November 21, 2013

Bouncer - November 21, 2013

Owen is continuing to do well on the high flow cannula. They have weened his Oxygen down to 30% but have kept everything else the same. they have to give his lungs time to adjust to expanding with less support. If they try to rush him faster then he is ready for then it could set him back far so they are going to make sure that he is good and ready. Owen is having random 'episodes' were his heart rate drops and his oxygen saturation drops, but he recovers quickly. They said that he will probably do that at home as well.

His eye exam that he had yesterday was pretty good. The hemorrhages that the Doctor saw in his eyes the last two exams have disappeared!! Apparently they were more worried about those then we thought. his Retina development is still going OK, the chances of him having to have laser surgery before he leaves is about 50/50 right now. Owen will continue to get eye exams weekly, if not more.

Owen's Echo yesterday has still not been read by the Cardiologist.

Owen gained another 40 grams which puts him at 5lbs 5oz!! They have upped his feedings to 1.5 ounces every 3 hours!! The boy likes to eat!!

Praying for:
-Bones to Grow Stronger
-Infection to stay away
-Echo Results to be positive
-Lungs to continue to heal and get stronger
Family Pick (sorry PJ)

Love my Bouncy Chair and Hanging friends!

Tuesday, November 19, 2013

10 Weeks old!!! - November 19, 2013


Owen will be 10 weeks old tonight at 9:15!! (Not that we are counting:))

This morning we arrived to a great surprise! The night nurses got Owen a big boy crib and decorated as  "Owen's Motor Speedway". It was complete with sunshine, Checkered flags, race cars and a banner. We love it!! We are really considering doing his room just like this now....but will probably just take these decorations with us and do a corner of his room like this, every jungle has a racetrack in it, right??

BIG BOY!!
 And then...we get great news from the doctor, he was impressed with how Owen was doing (and also with his big crib) that is wanted to take his off of CPAP today and put him on High Flow Nasal Cannula!!! This was great news, and I know that Owen was ready to get that annoying mask off of his face. The transition was a little bit of a shock for Owen and he needed a couple of breathing treatments, a larger cannula and a higher flow then what they originally thought but once he figured it out, he loved it!! Hopefully he can maintain this and wean down on all of the settings and we will be able to introduce the bottle to him in the next couple of weeks!

He is still trying to gain weight, only gained 10 ounces last night, better then loosing!! he is just over 5lbs now!

Praises:
  • Recovery from complete renal Failure
  • Liver recovering!! (from a Total Billi level of 17 to .9 now - less then .5 is normal)
  • Ability to stay off of the breathing tube for over a week and transition to High Flow.
  • Working Digestive system, and his eager appetite!!
  • All the Amazing people that work in the NICU! With out each and everyone of them working together and love for our little man, he would not be progressing like he is.
  • Friends and Family's support has been amazing. Teaching us to celebrate the little milestones instead of stressing about the next step. THANKS!

Prayers:
  • Good results on his eye exam tomorrow
  • Good results on his Echo tomorrow
  • Continue to do well on High Flow
  • Bones getting stronger
ok so maybe I look like my dad
But I love this new nose thing!!

Monday, November 18, 2013

Quiet days - November 18, 2013

Owen is continuing to do well on the CPAP.  He is just a couple of steps away from being able to go to the high flow nasal canula.  His x rays are looking better.

Owen is probably having trouble with reflux.  That is hopefully the reason his heart rate falls drastically at certain times.  They have slowed his feeding time down a little and set his bed at a 45 degree angle to help with this.  It seems to be working.

They went up 1ml on his breastmilk feeding.

His calcium levels are a little elevated.  We are not sure if he is getting it into his bones correctly.  They might have to make some milk changes, but for now they are discontinuing the vitamin D to help with this.  His levels are not extremely high, but just trending right along that point.  This seems like it will be resolved soon.

His liver is functioning a lot better now.

They are still continuing the 7 day antibiotic course.

They have discontinued several medicines including the vitamin D and another medicine that was to help with the gallbladder.

His weight fluctuates a lot, but he is slowly gaining weight.

Praying for:

  • Bones to grow stronger
  • Lungs to function better
  • Infection to stay away
  • Heart problems to heal
  • No long term effects from the steroids
  • Getting stronger
  • Eyes to grow properly
  • Calcium levels to be resolved


Very true

Yellow

Nap time

Saturday, November 16, 2013

Game Time - November 16, 2013

Owen is still doing great on CPAP.  The next step is to get Owen on the High flow Nasal Canula. For this to happen we have to slowly wean a few different settings on CPAP including his pressures, rate  and Peep. We have moved the rate don to 15 from 30 since Monday. They were going to wean the pressure today but his lung X-rays did not look great this morning so they are afraid that he might have an infection. They started Owen on Antibiotics again and are running some tests to see if there is an infection. Hopefully the X-rays will look better in the morning.

Owen is alot happier with out the tube in his throat, it is great to be able to handle him easier as well, with out the fear of extubating him on accident.

Owen is now gaining good weight!! he gained just over an ounce last night and is now just under 5lbs.

Owen is becoming more and more alert of his surroundings. He loves his music playing while he is sleeping (he gets fussy with out it and calms down as soon as you turn it back on). He is starting to notice his mobile and his bubble machine.



Getting in the Spirit!! It's Game day! Outfit was a present from one of the amazing people that work at UMC

Hanging out with my bubble Machine
                                                Great to hear this voice after 64 days!!

Thursday, November 14, 2013

72 hours extubated! - November 14, 2013

Owen has now made it for 72 hours off of the ventilator and on CPAP.  This means he is most likely off of the vent for good!

His voice is very hoarse and soft, but it is getting louder every day.

His eye exam showed no major change since last week.

His ECHO showed that his heart is getting a little bit too thick.  They are going to give him medication to slow down his heart rate and lower his blood pressure.  This will be watched very closely.

He is down to 4lbs. and 14ozs.  They are giving him extra protein along with the 42ml of breastmilk that is fortified with 24 calories.

His lung x rays look a lot better today.

Unfortunately, Owen has a bilateral hernia in his groin area.  Unless things change for the worse, he can wait to have this surgery right before he goes home.

The bad thing about surgeries (he will have hernia and possible eye surgery) is that Owen will have to be put back on the ventilator during and shortly after.  We want to be able to wait as long as possible to have any surgery.


Praying for:
  • Bones to grow stronger
  • Lungs to function better
  • Infection to stay away
  • Heart problems to heal
  • No long term effects from the steroids
  • Getting stronger
  • Eyes to grow properly
  • Blood clotting issues to be solved completely










Tuesday, November 12, 2013

Extubated - November 12, 2013

We had several changes of plans yesterday.  Originally, Owen was supposed to go to the O.R. and get a laryngoscopy.  Depending on the results, we were going to leave him extubated and on CPAP.  The procedure got moved to later in the day and the extubation after the procedure was cancelled.  Finally, we got bumped from the operating room and rescheduled for Wednesday.  It was late but the doctor gave the go ahead for the extubation.  If all went well, then we could most likely avoid the procure on Wednesday.

Owen was extubated and put on CPAP (CPAP is basically a nose mask that helps air move).  He has now made it over 24 hours on CPAP!  Hopefully he won't have to go back to the tube!  24 hours is the first milestone.  He really needs to make it 72 hours to be sure that he will tolerate it.

He is going to get an ECHO tomorrow to make sure that his heart is still pumping correctly.  Right now they think he is just a little dehydrated but they want to be safe.

Owen is also due for another eye exam tomorrow.  We will have to wait and see if he can tolerate this.

His lungs look slightly worse today.  This back and forth of his lungs will be an ongoing thing and it doesn't mean that he is doing bad.

He is still eating well.  He is around 5lbs 5oz now.

His skin is starting to turn pink again!


Praying for:
  • Stay off of the ventilator!
  • Bones to grow stronger
  • Lungs to function better
  • Infection to stay away
  • Heart problems to heal
  • No long term effects from the steroids
  • Stopping the Bronchospasms
  • Getting stronger
  • Eyes to grow properly
  • Blood clotting issues to be solved completely

Amazing picture of a floating head and two hands

CPAP

I can do it myself

Sunday, November 10, 2013

Extubation tomorrow! - November 10, 2013

Owen turned 2 months old today.  He celebrated by getting his 2 month shots!

His lungs have looked better for the past two days.  He has done well on the CPAP ventilator trials.  He has mostly been resting and growing over the past two days.

Owen is taking a trip to the operating room tomorrow.  They are going to take him there so they can take pictures of his throat.  They are checking to see if some parts of his throat are fully developed yet.  The doctors need to know this because they are going to try and extubate him tomorrow!  These pictures will help us determine the best position for Owen when he is trying to breath on CPAP and off of the ventilator.

He got an eye exam today.  The very nice doctor made a special trip up to the hospital to give Owen his exam a day early.  They didn't want him to have an eye exam on the same day they tried to extubate him.  He still sees some minor and normal for his age problems.  There were a couple of hemorrhages in his right eye that weren't there last week.  This seems to correlate with the clotting problems he had in his throat.  Hopefully they are or have figured out the clotting problems.

He is on day 2 or 3 of another 6 day course of steroids.



Praying for:

  • Stay off of the ventilator tomorrow!
  • Bones to grow stronger
  • Lungs to function better
  • Infection to stay away
  • Heart problems to heal
  • No long term effects from the steroids
  • Stopping the Bronchospasms
  • Getting stronger
  • Eyes to grow properly
  • Blood clotting issues to be solved completely

Do horizontal stripes make me look fat?

Yes


Birthday cookie


2 months old today!


Friday, November 8, 2013

Owen's paddle - November 8, 2013

Owen's lungs looked a great deal better today.  It looks like the temporary fluid restriction is working.  They added a little vegetable oil to replace to the extra volume of feeds they cut out.  This adds more calories without as much fluid.

His kidneys seem to be working correctly.

His liver is still headed in the right direction.

He is still getting blood out of his breathing tube.  We feel like it may be getting more mucus mixed and less of it.  Both of those things are good.

Owen seemed very relaxed and did well on the CPAP ventilator trials all night and into today.  He still broncospasmed a couple of times but he recovered quicker than before.

He is getting new iv line this evening.  He has two more days of antibiotics through it.  Maybe it will be his last one for a long time!


Praying for:
  • Bones to grow stronger
  • Lungs to function better
  • Infection to stay away
  • Heart problems to heal
  • No long term effects from the steroids
  • Stopping the Bronchospasms
  • Getting stronger




Zonked out

The nurse made Owen a paddle.  He was being to much like his daddy.



Thursday, November 7, 2013

Cloudy Lungs - November 7th, 2013

We thought that they might try to extubate Owen again today, but his X-rays this morning showed that his lungs pretty cloudy, the Doctor thinks that it is just extra fluid and he is trying to dehydrate Owen to clear that up. He is giving him some extra diuretic and has stopped giving him the Plasma. This should help clear out the lungs. We will get another X-ray tomorrow morning. Today Owen's saturation levels were not too consistent, probably because of his lungs.

CPAP trial on the ventilator we well again today, they are doing them for 6 hours on and then giving him a break for 6 hours.

So far Eric and Amy's blood work for abnormal clotting factors has come back with no concern, there are a couple more that will take a little longer.

Praying for:


  • Bones to grow stronger
  • Lungs to function better
  • Infection to stay away
  • Heart problems to heal
  • No long term effects from the steroids
  • Stopping the Bronchospasms
  • Getting stronger


My First bubble Bath!

It is kind of making me sleepy

I think I like it...

What are you looking at, I don't have Rabies, my dad thinks he is funny

Finally bed time!


Wednesday, November 6, 2013

No infections - November 6, 2013

Owen was a little unstable overnight, but he was lot better today.  The infections are cleared up for the time being.

He is still having some blood in his lung secretions.  No final results from all the blood tests yesterday.  He is a little low on one clotting factor so he is getting some plasma.

His lungs looked better today.  He did have a couple of bronchospasms.

His liver levels were a lot better today so they stopped the photo therapy lights for now.

Urine and stool output is still good.

He got put on another ventilator CPAP trial today.  He did good so another extubation attempt may come sooner than later.


Praying for:


  • Liver to function better
  • Bones to grow stronger
  • Lungs to function better
  • Infections to stay away
  • Eyes to work correctly
  • Heart problems to heal
  • No long term effects from the steroids
  • Stop having bronchospasms


  • A good picture of his new open bed with radiant heat

    The rabies picture got a lot of interest from people, so here is further evidence of it.

    Tuesday, November 5, 2013

    Family blood tests - November 5, 2013

    Last night they thought Owen might be running a fever, but it stabilized today.  They ran urine and blood tests last night just to be sure.  He is a lot calmer today.  We don't know if its because he is sick or  tired from being so crazy the last couple of days.

    His lungs are ok today.  They are still suctioning out a lot of secretions from his lungs and there is still blood coming out.  A blood specialist is going to look at Owen's clotting factors.  We both went to get blood drawn, also.  They are checking for some minor genetic clotting factor defects that could make him clot too much.

    His liver function is still slightly improving.

    Owen had his last dose of steroids last night.  It is best to try to extubate while he is on steroids or within three days of discontinuation.  We have to get the infections under control and see what is causing the excess blood.

    They increased his extra calories that are added to the breast milk again today.

    The focus is to let Owen rest and figure out the infection and blood situation.

    Praying for:


  • Liver to function better
  • Bones to grow stronger
  • Lungs to function better
  • Infections to stay away
  • Eyes to work correctly
  • Heart problems to heal
  • No long term effects from the steroids
  • Stop having bronchospasms
  • Eric swaddling yesterday

    What mess?

    Monday, November 4, 2013

    Car seat - November 4, 2013

    Owen got to sit in a little car seat today.  He stayed there for about an hour before he just couldn't stand it anymore.

    His lungs looked cloudier today.  They were suctioning stuff out of his lungs all day.  There was still some blood in there.  He does have an infection which is contributing to this.  He is on the correct antibiotic to help get rid of it now.

    Eric tried to swaddle Owen today.  Just like with the carseat, it took awhile for him to get settled down.

    Owen also got another eye exam today.  Things are ok so far.  The doctor will see him in another week.

    Owen was real aggravated today.  Anytime he was moved, his heart rate and oxygen saturation would drop way down and they would have to bag him back up.  Not a very good day.

    Liver is still trying to recover.


    Praying for:


  • Liver to function better
  • Bones to grow stronger
  • Lungs to function better
  • Infections to stay away
  • Eyes to work correctly
  • Heart problems to heal
  • No long term effects from the steroids
  • Stop having bronchospasms




  • Real men wear pink

    Eric swaddling Owen
    Family photo

    Sunday, November 3, 2013

    Tiny feet - November 3, 2103

    Owen rested again today.  He didn't seem to want to do much work on the ventilator either.

    He is finally turning a little bit pink in places.  This is a good sign for his liver problems.

    His lungs look ok.  Their is still an infection in there and it is now getting treated with the best antibiotic for it.  He is still coughing up a little blood.

    The official ECHO report was in.  His heart looks good.

    He got a blood transfusion today.

    Owen got his milk fortified (calcium,zinc,etc.) a little bit yesterday.  Breast milk does not have as much of these things that premature babies need.  Today they upped his feeds to 44ml every 3 hours.

    Owen lost weight last night, too.


    Praying for:



  • Kidneys to function better
  • Liver to function better
  • Adrenal glands to function better
  • Bones to grow stronger
  • Lungs to function better
  • Infections to stay away
  • Eyes to work correctly
  • Heart problems to heal
  • No long term effects from the steroids




  • Tiny feet


    Saturday, November 2, 2013

    Recovery - November 2, 2013

    Owen rested well overnight.  He continued to rest and sleep most of the day today.  He finally started waiving his arms and getting cranky late this afternoon.

    His liver made slight improvement today.

    His urine and stool output were very good yesterday and overnight.  He is down to 5lbs. 12oz. now.

    They did another ECHO on him today.  They are just checking to see if something is going on with his heart that would prevent him from being extubated.  Preliminary results were great except he seemed a little on the dehydrated side.

    We got the stomach area ultrasound results from the other day.  Organs looked good or getting better.

    He does have an infection and his throat was very red when they intubated again last night.  He is coughing up a little blood.  These things may have affected his attempt yesterday.



    Praying for:



  • Kidneys to function better
  • Liver to function better
  • Adrenal glands to function better
  • Bones to grow stronger
  • Lungs to function better
  • Infections to stay away
  • Eyes to work correctly
  • Heart problems to heal


  • sleepy baby

    might want to be a plumber someday

    Friday, November 1, 2013

    Failed extubation - November 1, 2013

    Not much to say today.  We didn't have much time to write before going back up to the hospital.

    He was extubated at 10 this morning and was re intubated at 6:45 this afternoon.  He did real good (on cpap) most of the day.  He went into a bad bronchospasm towards the end when he was tired and aggravated.  He continued to do this and they had to re intubate him.  He is resting and doing good now.

    Not much else happened today.  Maybe they will try again in a couple of days.


    Praying for:


  • Kidneys to function better
  • Liver to function better
  • Adrenal glands to function better
  • Bones to grow stronger
  • Lungs to function better
  • Infections to stay away
  • Eyes to work correctly
  • Heart problems to heal


  • cpap

    cpap