Week one! - December 31st, 2013

It's hard to believe Owen has been home for a week already. One week ago yesterday we brought him into his home and he got to meet his big furry brother. We hooked up his monitors and oxygen and sat there and stared at him. We were amazed at how good he was being. We woke him to feed him and he went right back to sleep. This continued through the night, but of course we continued to sit and stare and did not take advantage of his good sleeping habits. Well, we are regretting that now. He seems a lot more comfortable at home now, so comfortable he doesn't see the need to sleep between the hours of 8pm and 8am :). 

Owen had lost weight since we were home until 2 nights ago, so we were instructed to feed him every two hours for 30 minutes. This is seeming to work!

This Thursday we go back to see the eye doctor and Friday we go see the pediatrition again. 

It has been a joy and blessing to finally have this guy home. This will be an adventure for all of us as we learn how to raise him and for Owen as he continues to get stronger and as we all get to know each other better!

Nap time. 

I think he likes it!!

Too cute

Ready for the Olympics!!

Roar

Home by Christmas - December 26, 2013

We finally got to take Owen home from the hospital on monday afternoon!

His ECHO looked normal.

He got a follow up eye exam on the day we came home.  Everything was progressing nicely.  We have another eye check-up appointment next week.  We will continue to have these for a while.

He has failed all his hearing tests, so we have another audiology hearing screen appointment in January.

He is having an issue with high iron levels.  We will see a hematologist again in January.

Owen is still testing positive on the newborn screening test for severe combined immunodeficiency, therefore we will see an immunologist in January for a couple more tests.

Owen will still be seeing the neonatologist at the high risk clinic even though he is out of intensive care.  His first appointment will be in January.

We had the first appointment with his pediatrician this morning.

He is also scheduled for a follow up with the cardiologist in June.

Owen will also be checked out by the pediatric surgeon sometime in January to make sure there are no complications with the hernia surgery.

We have to carry a couple of oxygen bottles, two loud monitors, Owen, and a diaper back to every appointment!

The doctors and nurses that we had were amazing!  Owen went from being one of the sickest kids around, to being home with his family by Christmas!  He was definitely spoiled by everyone at the hospital because it seems that the undivided attention of two people is not nearly enough!

We ask that you continue to pray for Owen and us as well.  We will be dealing with many complicated appointments and will be faced with plenty of tough decisions for a long time to come.  Owen has lots of healing and growing that need to happen.

Thank you for keeping up with Owen throughout these last 3 1/2 months.  We have really learned what it means to be loved and cared for by family, friends, and even strangers along the way!

Now for the tough part.  We have been asked by several people, when would be a good time to come and see Owen.  The short answer is - April until September.  We have been instructed to not allow visitors until flu and RSV season is over.  When that season is over, we will still have to be very careful to not expose him to disease.  We will ask that you not come over if you or anyone in your house has even the slightest of signs of infection such as a cough or runny nose.  If you say your symptoms are caused by allergies, unfortunately we can't compromise Owen's health and will have to decline the visit.

If you do visit during the correct times:

• No touching will be allowed at anytime.
• Wash hands upon entering
• Sanitizer is all around the house
• Don't cough or sneeze
• All the other rules in the previous paragraph

Another infection will mean another trip to intensive care for Owen, possible intubation, and all of the other setbacks that can occur in intensive care situations.  All of this on top of the fact that RSV could lead to an even worse outcome than intensive care.  

Considering that we will not be allowing visitors until April, we have decided to keep up the blog.  We will try to post once a week.  Possibly on sundays.  We will include pictures and other information on how Owen is getting along. When something special happens, we will post additional blogs.

We praise God for all of the answered prayers that we have all been saying for Owen.  We understand that He doesn't give us a pleasant or easy way to deal with the pain and suffering that happens on this fallen earth, he gives us more;  a way to overcome it through the promise of eternal life in Heaven.

Caught smiling

Hiding his face

The family portrait

Busted smiling again

Going home!

Surprise at home and Amy with the equipment

Future trouble making team!

Day 103- December 22, 2013

A lot has happened since Tuesday. Owen was slowly weened down on his oxygen and got to .1 liters at 100% Friday morning. This is the level of oxygen that he will go home on. His feedings have picked up where they left off at and is nippling every feed! 

Friday morning the Doctor surprised us and asked if we were ready to room in for the next 2 nights! Of course we were ready! We ran home to get everything together, get some groceries, pack our bags and get back up to the hospital. 

Owen had to pass a car seat  challenge, where he had to sit in his car seat for 2 hours with out his heart rate and oxygen levels going down. He passed!!

Owen had another hearing test and failed, he will have to see and audiologist in the next few weeks.

He had an echo on Friday as well, but we have not heard the results yet.

On Friday all of Owen's equipment arrived and we were taught how to use it. He will have an oxygen machine, pulse-on monitor, apnea monitor and a nebulizor for breathing treatments. This will be tough having him connected to 3 machine constantly and keeping up with Ll of his meds and treatments, but it will be worth it!! 

We stayed with Owen in a room Friday and Saturday night to make sure that we were comfortable with all the equipment and learned how to give him all his meds. It went pretty good! We didn't get much sleep but that's expected.

He got weighed during the first night and was down another 60grams and that was the 4th day in a row that he had lost weight. This is a little concerning so they said that he has to gain good weight for two days in a row to be ready to go home. Last night he gained 100grams so we are making sure we are feeding him good today and hopefully will be able to go home tomorrow afternoon!!!!!

Just chilling in my car seat!

Trying to get that burp out

Eye Surgery - December 17, 2013

Yesterday Owen had another eye appointment and the Doctor determined that he needs laser surgery to help his retinas. Good news was they did it right away, bad news is that they had to reintubate him again. At 4pm yesterday the put his breathing tube back it, gave him a paralytic and 2 IV's, then brought him to the procedure room for laser surgery. At 6pm he came out and the doctor said everything went as expected. 

Today at noon Owen was finally awake enough to be extubated and he was put on High Flow nasal Cannula. They are being cautious and not going to ween him too fast since they thought that it made his heart rate drop last time. 

They started his feeds again through his tube today after they extubated him. 

Pray for 

-For eye surgery to work correctly

-Getting back down to the lowest oxygen settings 

-Feedings to go well

Done with my last surgery now I get to wear my cowboy boots!

Recovery - December 15, 2013

Owen is feeling much better today from surgery two days ago. Yesterday he was in pain and grumpy. He was given pain meds through out the day. Today he has not recieved any and seems very happy. The night after his surgery when he got extubated and put on nasal cannula he only lasted an hour before they had to put him on CPAP to remind him to breath. He stayed on CPAP for 24 hours. Last night he was moved back to nasal cannula and has been doing great since. They are planning on getting the oxygen levels and pressure down to where he was before surgery by tonight or tomorrow morning.

He was able to start nippling his feeds again today.

Owen had his hearing test today and failed in both ears. He had a lot of things against him with his loud cannula disrupting the test and apparently a lot of them fail when they are hungry and it was right before his feeding time. We are not too worried, he had been responding to sounds since he was born. He will retest this week.

Tomorrow Owen has another eye appointent. Hopefully the Doctor continues to see good growth in his retina and will not have to do surgery. Please pray for a good report on his eyes.

Strollers ready!

Can't deny it! He's a ladies man!

Surgery - December 13, 2013

Owen went in for hernia surgery this morning. It took them two hours from they time they took him and brought him back. It was horrible to see him with the breathing tube back in. The surgery was a success though which is great, one step closet to going home! He slept all day, still under the anesthesia still and some pain medicine. They had to wait all day for him to wake up and take the tube out. At 8:45pm they took it out and he is doing well. He is on high flow nasal cannula and comfortable. They are going to let him rest tonight and work in weening later.

The eye doctor came and looked at Owen's eyes while he was under and determined he still didn't need eye surgery and will look at him again on Monday.

They are giving Owen TPN again for nutrition since he will not be able to eat until tomorrow afternoon. Then we have to start feeds slowly to make sure that his bowels are working properly.

Ready for Surgery

I did it! Time to snuggle with Clifford 

Surgery Prep - December 12, 2013

Owen is scheduled for hernia surgery tomorrow morning at 7:30am. His breathing tube will be put back in and he will be sedated. He will also get his eyes checked again to see if anything has changed and if there is need for eye surgery yet. If eye surgery is needed they will do it tomorrow as well.

Yesterday Owen was given a blood transfusion yesterday because he was anemic and will help him be more prepared for surgery.

We will update tomorrow after surgery. Please pray for:

Successful surgery and ease to get off of the vent.

Birthday Party!!

Really loves his mobile... Clifford making his appearance.

Happy Birthday!! December 10, 2013

Owen is 3 months old today!! It is amazing the progress he has made. He has come so far in three months and gone through so much. 

His echo results came back NORMAL!! This is great news! He was taken off of his heart medication and will have to be monitored closely for a couple of weeks and a follow up echo before we go home but he is on a good path.

His heart rate still drops while he eats but has gotten a little better with the medication and should continue to get better as he gets more coordinated and has more stamina.

Today Owen had a photo shoot with the Children's Miracle Network, he was chosen to be a miracle baby, which he is!! He will get to participate in their radio-thons, telethons and other fundraisers they do for the rest of his life. The equipment in the NICU that helped saved Owens life was paid for by donations through CMN. We are very grateful for the Children's Miracle Network!!

On Friday, Owen is scheduled for surgery to fix his hernias and possibly his eyes. He will have an eye exam tomorrow to determine if they need to do the eye surgery along with the hernia repair.

Scary monster (with a Clifford pacifier)

Now I'm a giraffe

Peace!

Barium Swallow - December 6, 2013

Today Owen went on a road trip through the hospital to visit speech pathology to do a barium swallow. This procedure has him drink barium so they can watch how he sucks and swallows to make sure that those are working correctly. They said they looked great for a 25 weeker, just gets a little uncoordinated at times, but nothing that won't get better with practice. The procedure also watches where the barium goes as he swallows. We found out the he is aspirating a little bit (fluid goes into lungs-could result in pneumonia), he has reflux, and also has slow emptying of his esophagus (the muscle don't contract to push it to the stomach). We are told this will correct with time. We have also concluded this is why he is dropping his heart rate and his oxygen levels during feeds. Owen was out in 2 medicines to help his stomach digest quicker and take some acidity away. Hopefully this will cut down on his pain. 

Owen is now three times his birth weight at 6lbs 3oz. We plan on giving him more feedings orally and less through his tube to his stomach. He gets pretty tired quickly so we have to take this slow. He is slowly getting stronger.

We are still waiting on the echo results from yesterday.

Ready for his field trip

Strapped in... Clifford goes everywhere with Owen

Taking the bottle like a champ!

Spoiled, but oh so loved - December 4, 2013

We are having more quiet days with Owen. He is continuing to grow and get stronger. He is still eating every other feed but we are going to do 3 and give him 1 off. He is getting better with every feed. Last night he took over 40mL from a bottle.

Owen had another eye appointment today and is scheduled for another one for Sunday. The Doctor said there is not a lot of growth on the temporal sides so if this continues he will probably get surgery next week. 

Owen has so many people that love him at the hospital (and so many more that he hasn't even met yet). It is great to walk in and see him snuggling with a nurse or hearing stories about what he has done during the nights. Owen loves attention and all the sweet ladies that look after him, he also gets really jealous when someone else is getting the attention. We won't know what to do when we go home and everyone isn't coming to check up on him, he will have to learn to deal with just Mom and Dad.

Milk Coma

Laying in bed acting like e doesn't know people are staring at him 

Been sleeping much better, can you tell?? 

Milk Coma- December 1, 2013

Over the last couple of days Owen has been working on getting stronger and eating. He is eating every other feeding and getting the other ones down his tube. He is getting better every feeding and resting pretty good between them. 

Owen had another eye appointment today. The Doctor said that the growth is slowing down and is getting close to where he would know if he will need surgery or not. He will have another check up Wednesday or Thursday and should know more then. 

Owen is still on 2 liters of oxygen and was having a little bit of trouble maintaining his saturations today. This should improve with time. They took away his diuretic and caffeine which might have affected his oxygen saturations but we are hoping he will be able to adapt with out them. 

Prayers:

-continue to eat good 

-Bones growing stronger

-Lungs continue to develop

Who is really wearing the pants in the family?

Dads first bottle

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!

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

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

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!

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!!

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

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!!