Looking GOOD

Nothing says I'm feeling better than a SMILE like this one!! Owen seems to be a happier, healthier baby already. He's on .25 liter of O2 and full feeds. The plan this week is to move him to bolus feeds--- PRAY he tolerates this so that we can start bottle feeding him!! I bet it would feel amazing not to have something shoved up his nose any longer :).

Simply Delicious!

Thanks to our friends Jamie and Jamie... we have discovered YUMMY marshmellow pops! We were watching Gigi tonight so my parents could use their suite at the Dbacks game... what better way to keep two little gals busy than to give them marshmellows to dip in TONS of chocolate!!!!!



WARNING: Don't allow your children to eat these an hour before bedtime... they WILL NOT sleep!

Cardiology Update

We went to visit Dr. Stock this morning. Owen had the full workup and we're going to take things slow with him and just see how he does. Over the next two weeks, I am to wean his Oxygen a bit. He's only on .5 liters so I'll just go down from there. It's all up to me how much I wean and see how he does. I love that they trust me so much! :) His 02 sats were 90... so he has room to drop down to the mid 80's.

We're not going to change any of his nine medications... YET! His heart is still 1/3 larger than it should be which still means his function is down, which explains the super speedy breathing and the extra puffiness. This is why he needs diuretics 4 times a day. Hopefully things will get better with time... we're optimistic!

On the upside... he's gaining weight... 11lb 8oz (6%) . He's growing inches... 24"(20%). He's cutting his first two teeth on the bottom... SO CUTE! He is developing just as any other baby would. He hates tummy time... but seriously... how many babies love it?

Keep it up Mr. Owen!

I Love Being a Sister

Being a sister is so much fun. Its mostly fun when I get to help out. This is what I do most of the time...

1. Put the dirty diapers in the trash can
2. Get Owen his binki
3. Hold Owen


I love him because of his little smiles and he is just so cute. My favorite smiles are when his tongue is sticking out while he smiles! He usually cries when he wants his binki. I hope he doesn't need to go back to the hospital till his next surgery.


I LOVE to kiss Owen. I like it when he opens his mouth when I kiss him! Owen's yawns are funny because he makes them crooked. He loves me and I love him.

Written By,
Kamryn

Shower Baby

Owen absolutely LOVES to take showers...not baths...showers only! He lays back, spreads his legs and just falls asleep!! As I said before, he'll stick ANYTHING and EVERYTHING in his mouth...

Here goes the towel.

Ooooo...Fingers....YUMMERS!!!!
MOMMY CRACKS ME UP!!!! Owen chuckled for the first time yesterday... I would say how cute and adorable it was... but I MISSED IT!! I was at work and I missed his first little chuckle :(. Carson, Auntie Janesa and Kamryn all witnessed it and said it was great! I'm sure I'll hear many more in the future.

We have a cardiology appointment tomorrow with Dr. Stock... I'll update more then. In the meantime... doesn't his scar look fantastic???

48 hours at home

Owen has been home for 48 hours now and I am exhausted!! For the most part, he is a chill baby who only asks for attention 95% of the time. He doesn't nap during the day and sleep through the entire night!!! He smiles anytime we say "give me a smile!" He discovered his hair and loves to rub his noggin. He's also cutting some teeth because he shoves just about everything in his tiny little mouth... so much for the oral aversion theory!

HAPPY 4MONTH BIRTHDAY OWEN! You have conquered many hurdles in your short little life so far and we hope to give you a break and let you be a baby now.

Owen came home on oxygen this time around and I was speechless when the healthcare company delivered this giant green piece of equipment! It really adds a designers touch to our front entryway. This also came with 50 ft of oxygen tubing so we can carry Owen all around the house. The little tanks are traveling oxygen and the iv pole on the left is Owen's feeding pump. Who needs an interior decorator when we've got Apria Home Healthcare delivering the finest in home accessories.This isn't even the lot of it... Owen came home on 9 medicines this time around. One of which is Viagra... yep the one for erectile dysfunction...only Owen needs it for pulmonary hypertension.
On another note... Kamryn had her Last day of seond grade on Thursday!! She always get so upset on the last day.. most of all she'll miss her teacher... thanks Mrs. Cruz for a fantastic year! Her teacher also made each student individual scrapbooks... they are amazing.. I'll post some pics tomorrow.

We're looking forward to a nice relaxing summer!!

Home Sweet Home

After 30 days and LOTS of negociation... Owen was able to come home this afternoon. Finally!! The 2nd stage Glenn operation is supposed to be the "easy" one with a quick recovery... Owen proved that theory wrong. They didn't want to release him because they say he's in a "fragile" state... but they know I'm on top of it and will call if he even sneezes the wrong way. So far he has been happier, more playful and more relaxed than he's been in weeks. He also got his first shower in a month and he was LOVING it! We said our goodbyes to all our nurses and we hope to not be back for another 18mo or so for the stage 3 operation.

Owen is not so fond of his oxygen...he pulls it out of his nose and chews on it. Hopefully we'll be able to rid of this soon enough.
Owen's new thing is to look at anything OTHER than the camera.

CRASH!!

So I'm on my way to the hospital this morning in hopes of bringing Owen home!! YEP... they were going to release him today. WERE is the big word here. We'll get to that in a second. I'm cruisin down the freeway at about 50mph since it's rush hour (otherwise it would have been a lot faster)... BBBAAAMMMM... I get smashed. The faulty driver was reading a map while driving in the fast lane... genius! Anyway... he hits car number two, then I got the slow motion version of the crash. Thankfully, I hit no one in return. No one was injured, we all had insurance and I drove away with my bumper following me.

I got to the hospital to find a very crabby Owen and he was using a lot of effort to breathe. It was my call to leave him there just another day for observation. The only stipulation I made was... NO POKING HIM!! He had a fantastic afternoon full of smiles and cooing and hopefully I'll be bringing him home tomorrow morning.

I left the hospital earlier than usual to get my car to the body shop ... my bumper in tow...which I tried to tape with medical tape (this doesn't work)! They took me over to the rental car place and all they had were cars approved by the insurance company. I'm not snooty and I don't mind driving a car...BUT... when you crash my 4Runner, I find it only fair to give me a comp rental. Unfortunately they had nothing until tomorrow morning so I took the car just to get out of there. I will be calling the insurance company first thing in the morning and politely insisting on a SUV, not a car.

I'm grateful that I'm now home and getting some rest...tomorrow will be another busy day and I can't wait to bring Owen home after 30 days!!!!

Can't wait to get Owen home

I'm not sure exactly why we're still in the hospital... but I'm going to do my best to get Owen out of the joint tomorrow (Tuesday is negociable). We can't leave without Owen's Vivonnex formula and Oxygen tank delivered from home health care. That's right... I said Oxygen tank. Mr. Owen randomly decides to allow his oxygen to drop down into the 60% range... not good. The majority of the time he can maintain his sats in the 80%'s, but I feel more comfortable having oxygen on hand if he drops too low. He also has moments where his breathing becomes really labored and the oxygen helps give him a little boost. It's not a huge deal, just another piece of equipment to add to his collection at home. Other than that... we are SO ready to get our little guy home and resume a "normal" life (whatever that may be)!

Discharge Date

We got a unofficial discharge date of Wednesday!! Of course, I will do everything I can to convince them to allow us to go home sooner. The only thing keeping us in the PICU is the fact that Owen had a temp two days ago and they want to keep him on IV antibiotics and make sure no infection creeps up. If we actually go home on Wednesday, that would be 30 days in the PICU.... time sure does fly!

Quick Update

Owen received a BIG basket of goodies today from Godaddy with a teddybear and balloons. It was a great surprise and much appreciated!!!! Thank you very much!!

Now... for an update!

Owen had a rough night last night... his nurse poked him 4 times trying to draw labs and finally got a NON working IV in his foot. She said the PICC line wouldn't draw blood, but it worked fine for us this morning... I felt guilty for not being there last night :(. The poor guy needs a break!!

On a better note....Owen had a good day today. He caught up on much needed rest and I got some much needed snuggle time with him. No fevers and he continues to receive antibiotics due to his elevated white blood count. Hopefully he'll get to feeling better soon so we can bring him home. I'm aiming for Monday... let's just hope the cardiologist agree :).

He has the same nurse again tonight... I made sure to let her know NO PRICKING my baby and don't even bathe him. Just let him sleep and give him comfort if he needs it. Hopefully he'll get a restful nights sleep with no interruptions. The little man deserves to be left alone a little bit.

Changes...A new do and a new view!

I allowed Kamryn to ditch school and spend the day at the hospital with Owen. Then we left and got our hair done. Kamryn had 4" cut off and looks FABULOUS as ever!!!


Kamryn snuggled with her baby brother all morning long... Until he puked... then she was done!
Owen has a rough morning. His O2 sats kept dropping into the 50's and freaking me out. Then he puked and spiked a fever. They kept thinking it was fluid building up in his lungs and we were prepared to put in another chest tube. Then his 1:00 chest Xray came back clear as can be... NO CHEST TUBE... Yeah! But, then the questions are raised as to why the fever, low sats and puky??? So we went back to continuous feeds, put him on a tiny bit of oxygen, ran a bunch of blood cultures, got him back on antibiotics IV and put the little buger to sleep. Then at around 1:30 the intensivist came in and said they are bumping us out of our room and moving us to another PICU pod because he is the healthiest one in the cardiac unit. So, we got a new room with a parking lot view... hey, it's better than the freeway view. Owen was doing much better tonight... no fever and his oxygen was in the 90's. They will take off the oxygen, continue antibiotics and take things a little at a time until we figure out what's up with his little body. Dr. Pearl, the cardiologist and the intensivist all mentioned to me something about doing another cardiac cath early next week just to check out his heart and make sure they're not missing something.... NOOOOOOO... we just want to go home. PRAY that things will go smoothly this weekend and we can come home soon!!!! We've been in the PICU 24 days now....but who's counting?

Owen is passing the time in the PICU while watching cartoons....he could care less if he's here or at home.

Goodbye Chest Tube

Owen's chest xray today showed that his tube was almost completely pulled out of his side and there was no fluid around his lungs... so FAREWELL chest tube! We did an xray at 1 and it showed very little fluid so we can keep the tube out for the time being. Owen is more relaxed and comfy now that it's gone. We'll continue to watch the fluid and just pray that he doesn't need another tube put in.

Still no discharge date and I am trying so hard not to ask about it. I don't want to jinx myself. I know that sounds silly, but it is so true. When you start to think something is going amazing and you're almost out of there...bbaaaammmm... something happens. Owen is only on his regular monitors and his NG feeds...nothing we can't do in the comfort of our home :).

They do need to continue to monitor his heart function and make sure he's stable before we bring him home. They are tweaking his meds and only time will tell how he does.

Quick Update

Owen continues to slowly drain Kile out of his drainage tube...but it is getting to be less drainage everyday. I'm optimistic that we will be rid of that tube soon enough. He wants NOTHING to do with the vivonex formula by mouth so we're not pushing the issue. He has been spiking random temps over the last few days and his white blood count has been all over the place, so they started him on antibiotics, just to be cautious. All the blood cultures have come back negative for infection, but you never know where something might be starting.

They have completely taken him off of his Milrinone (heart med) and so now he has no more IV drips...yeah! We are still weary of his heart function and can't wait to see another echo in a few days to see where the function is. When you have a heart baby, you take things one day at a time. No mention of discharge yet...I always tell myself.... don't expect anything and then one day we'll just be surprised!! :)

100th Post!

HAPPY MOTHER'S DAY!!!

I LOVE being a mommy!! Nothing is more challenging or rewarding than raising a child. Everyday is a day filled with laughter, LOVE and joy because I have two children that brighten my life. Thank you to Kamryn and Owen for making my life wonderful!!!

Kamryn has taught me to have patience, understanding, and a love beyond imagination...she made me a mother.

Owen has taught me to enjoy every day to it's fullest, don't sweat the small stuff, love like there is no tomorrow and a strength that I never knew existed....he has made me a better mother.

Much love to all our Mom's this Mother's Day!! We love you and appreciate all you do.

That was then... This is NOW!

What a difference a week makes!!!! Owen is coming along very well. It's just amazing how fast he has recovered thus far.

This was Owen post op one week ago....

This is Owen ONE week later...

After all he's been through and he's got a GIANT smile on his face!!!

Owen had a minor setback today... they found a small pocket of fluid between his left lung and spleen on XRay today. Dr. Pearl sedated him and put a tube in the pocket to drain it out and it immedietly drained 45cc's of liquid goo....then stopped. They tested it and it came back something I don't quite understand, but it has to do with his body not digesting the fat content in the pregestemil formula he was on. So now we are on the horrible, terrible, icky smelly, expensive ...Vivonex formula... which only has 5% of the calories from fat which is supposed to solve all his problems. The nutritionist says this is temporary for about 6 weeks. She also said don't be surprised if he completely rejects the bottle because the flavor is just aweful and has a metallic after taste. BLAH! We'll see how he reacts tomorrow when speech comes in to give him his bottle. Besides this and his withdrawls from all the pain meds, he is doing great!!!

The plan is to start increasing the captopril as we decrease the milrinone and we'll find a happy balance to optimize his heart function.

Everyday is a progression and we can't wait to get him home again.

Progress

Everyday we see a little more progress..yeah! Owen had his pacer wires removed today and completly weaned off the Epi, Nipride, and we're working to wean off the dopamine tonight. Then all we have left is a little oxygen flow, A LOT of Milrinone, TPN and of course his NG feeds of yummy Pregestemil formula. Weaning off the Milrinone will be touch and go. He doesn't really need the oxygen because he's sating in the 90's, so hopefully we'll rid of that soon. We will continue to increase his feeds day by day... right now he's only getting 11cc's an hour... not much. He is starting to feel better... I got what resembled a smile this evening... it might have been gas... but it made me happy. His pain killer of choice is still tylenol and man does it do the trick on him. They did an echo this morning and we're told the function and the leaky tricuspid valve are slightly improved... this is good! I'll take SLIGHTLY improved anyday! Looks like we'll be here for a bit longer and we'll be spending Mother's Day in Room 26. As long as I'm with my two little munchkins, it'll be a fantastic day!

A Lazy Sunday

Today was a day of rest for Owen and our family. It's nice to see he is doing well off the ventilator and we are weaning him SLOWLY off the oxygen. They are tweaking his meds just a bit and finding a good balance. I convince them to get something removed or weaned everyday. Even if it's only a piece of tape or a bandaid...it's something. He sleeps most of the day and his only pain medication right now is tylenol, which is pretty impressive considering he just had open heart surgery 5 days ago. He resembles himself a little more everyday and we are so proud of our little Owen!

Doesn't he look exhausted?? He can finally have his binki again and loves to snuggle up to his little buddy Slumber.

Exubated

Owen was exubated (taken off the ventilator) at around noon. It was rough times for a few hours afterwards. He was just keeping us on our toes. We got all the gunk sucked out of his chest and then I snuggled him and he did TONS better. We also had his chest tubes removed and his catheder was taken out. I'm sure it feels good to be de-tubed. Now we'll work on weaning off the heart meds and our biggest concern now is the heart function. With time, we hope that it starts to improve. Oh... and he is starting to look like OWEN again. The puffyness has gone down and he can actually open up his eyes now. Before, his eyelids were so puffy that he would try to open his eyes and couldn't... so frustrating.

We continue to take things one day at a time. I'll have some pictures to post tomorrow.

Keep the prayers coming.

A Day to Rest

We decided to allow Owen another day to rest up before exubating him (taking him off the ventilator). He is still pretty swollen and his lungs are just a tiny bit hazy. Since he just had his chest closed yesterday and he still has his chest tubes in, he still has a lot of pain to manage. The good thing about the vent is it not only allows his body time to rest, but he can have more aggressive pain managment.

Owen is off the nitrate and will have his catheder removed a little later today. His chest tubes only show a little bit of drainage so we are aiming to get those removed tomorrow morning and then the exubation. Owen should be comfy and happy by tomorrow afternoon. I can't wait to snuggle him. I put down his bed rail and lay by him a little bit just so he feels me there and can hear my voice.

Since he is pretty zonked out today, I'll probably leave a little early, go have dinner with my family and then we're going to see IRONMAN. I think it'll be good for all of us!

Well, back to my little guy. Thanks for all the prayers and words of encouragement!!

Leaps and Bounds

Owen is improving by leaps and bounds... he is such a little angel. Dr. Pearl had his chest closed in 40 minutes and I was happy to see him closed. They should have him completely weaned off the Nitric Oxide by 3am and then they will finish the wean from the ventilator. The plan is to exubate him tomorrow morning... that means I get to hold my baby boy again.

Owen got a pretty ticked off this afternoon. They turned off his fentanyl drip and morphine (pain killers) and he started to wake up a bit. The poor buddy couldn't open up his eyes because they are so swollen. This along with the fact that he has a tube going down his throat, catheder and anal probe, tubes coming out of his chest and he can't even have something as soothing as his binkie... he was MAD! So he got a little dose of versed and he drifted off into dreamland.

Here are some pics of him pre op....
Owen and our favorite surgeon... Dr. Pearl.
Owen Post Op... check out ALL his equipment!
Here's my PUFFY boy. He's pretty swollen, but we'll get him to pee it off in no time!
Here are Owen's Beads of Courage. They started this program for the cardiac patients a few months back. Each bead has it's own meaning and they have to be earned. The nurse brought him a bumpy glass bead today to represent his "bump in the road'... then a glass and wire one to represent the wires that were put in his chest today. This is a great way for kids to look back on their life and realize how truely courageous they are. Keep the prayers coming. We're still on edge hoping and praying that this surgery will help his right ventricle function. We still don't know if it did the trick yet.

Kamryn's Night to Shine

Kamryn has been such an amazing trooper through everything with her brother. She is ALWAYS optimistic about the situation. She understands that mommy or daddy has to be with brother and she has been more than willing to share our time. What a strong girl she has been to endure all the stress and worry that an 8 year old shouldn't ever have to deal with.

Her 2nd grade music program was on Wednesday night and it was very sweet. I love watching all the kids stand up tall and proud in the bleachers. She had a speaking part and she did great! Here are some pics from her program... it was her night to shine!

Kamryn and her favorite teacher, Mrs. Cruz!

We LOVE you boo boo!

Great Night

What a difference 12 hours makes! Owen had a great night and is pulling through. Yesterday was as scary as they come. We heard around 2 that he was off ecmo and that he would be in the PICU in 30 min. Then, over an hour later, the nurse came in and said things weren't so hot, his O2 sats were in the low 60's and Dr. Pearl was going to leave the chest open so he can get back in quick. Then her quote was "put a token in, your about to go on a rollercoaster ride"... what does that mean??? After another painstaking hour of waiting, they brought us back to see Owen. He looked as scary as we anticipated. They said he was stable, but just 30 min earlier he was not okay. Dr. Pearl (surgeon) said "Owen is okay, but I am worried." He had to spend more time on the tricuspid valve repair than he would have liked and the heart was still so fragile from the Norwood so he had to repair some tearing. I was trying to be optimistc by saying we'll take this one day at a time... to which Dr. Stock (cardiologist) replies "let's just take this hour by hour". Needless to say, we were a bit scared, but still had a peaceful feeling about things.

They assured us it was okay to leave for a while because Kamryn had her 2nd grade music program and would have been devestated had we missed it. It was a nice distraction from the day and Kamryn did a fantastic job! I'll have some pictures posted later. :)

I rushed back to the hospital to sleep with Owen. The Dr.'s came in this morning and are amazed at how well he is recovering. He is almost off the nitric oxide and Dr. Pearl is in closing up his chest and sternum right now. They are slowly lowering his vent settings and weaning off some of the meds. We're hoping for a speedy recovery but are cautiously optimistic because we still don't know if this repair will improve his heart function. He still needs all the prayers he can get!

I'm going to go back to my little puffkin baby. It is common to have upper extremity swelling after the Glenn because his blood flow needs to balance out and gravitate to the lungs. He's still beautiful even with a puffy head and marshmellow hands.